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11 year old daughter been in pain every night for a year!
      #243688 - 02/02/06 03:08 PM
PaulineNZ

Reged: 02/02/06
Posts: 26


Hi Heather and team, I am hoping you can help me. My daughter, Gabrielle, became unwell a year ago today, this started with sore tummy, then constipation, then impaction, then 3 months of laxatives etc. We have found that with the removal of gluten from her diet and by following a low lactose diet, she is pain free during the day but we have not been able to get her out of pain at night. Pain is windy/colicky in nature, sometimes passes gas, lots of noises, depending on what she has eaten determines the severity of the pain.

We have done the public health system and now are in the private health system here in New Zealand. So far she has had many tests, bloods, faeces - all clear, has had a barium swallow and follow thru done which showed no ulceration or inflamation, this was done because the specialist was worried about colitis (my father) or crohns disease, this because she has/had lost 4kg has managed to put on and keep on 500g for the last couple of months.
My sister and I both have irritable bowel, although, neither of us have never been in pain every night for a year. We know our trigger foods, but these are different to what sets my daughter off.

I guess you deal with questions like this all the time and I am sorry for wasting your time, but everything I have read and I have researched extensively on the net doesn't mention kids being in pain every night and I am not exagerating, at times she is sore but managable, other time she is wimpering or sobbing in pain.

Look, I appreciate any help you can give, I guess I am now accepting the public health services diagnosis although all they did was some routine bloods and gave us a diagnosis this lead us going to the private specialist who has been very thorough, but is costing us a fortune.

We have tried the no starch or the low starch, the no sugar, the stand on your head and move counterclockwise diet (joke).

We have tried your diet, admittedly not to the 't' as she can't have soy as well, and is grumpy about cutting everything out as she says, she really has been very good through all of this.

Interestingly my irritable bowel has never been so good as soon as I dramatically decreased and some days eat no gluten whatsoever. Last year was the most stressful year of my life and my bowel was at its best in 15 years.

Any help or advice especially concerning the night pain would be great. Also, even the meals (as close as you suggest) as possible doesn't seem to relieve the pain, I guess I am getting impatient - no it probably is total desperation to get my daughter out of pain that if it doesn't seem to work after 4 days I think it doesn't work, maybe things take longer to heal. She goes regularly now, constipation is only a problem if she eats white rice bread in any great quanity.

Thanks and I can't wait to hear any suggestions.

Pauline

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Re: 11 year old daughter been in pain every night for a year! new
      #243694 - 02/02/06 04:22 PM
Nelly

Reged: 08/06/04
Posts: 4381
Loc: Within stray mortar fire of DC

My IBS started when I was 7, and I was in pain every night too. It was not uncommon for me to have between 9 and 20 attacks every day until I was 13 and learned to control what was happening to me through diet and managing stressors.

I really feel for your daughter because I know what it is like. It is quite possible that her food triggers are nothing like yours. Hardly any of us here have exactly the same safe foods! I identify with your concern and offer hope that you've come to the right place to find people who are where you are and care-- the people on this board are very insightful and knowledgeable about IBS, diet, and appropriate lifestyle changes you can make to make you and your daughter's lives easier.

Even though she has had a barium test, it is important that your daughter complete the colonoscopy with biopsies and a sigmoidoscopy to rule out disease. She also has to cut out all dairy and dairy products immediately in order to start feeling better. Dairy to me is like trying to digest sawdust. Even a little sawdust, and my tummy's out for a week.

Your daughter is also not going to get better until she gets herself stable. Stable might mean cutting out all GI irritant food except only her safe foods, then adding foods back one at a time. When I am in a bad IBS flare, I eat saltines, chicken broth, flat sprite, mashed potato flakes with water and lots of water for a couple days until the pain stops. Then I can add in only safe foods which for me include boiled chicken breast, beef bullion, cranberry juice cocktail with water, and plain spaghetti, one at a time over a course of a few days, until I am back to myself again.

There is help, and there is hope! Please keep the faith and visit the site for some good answers.

Best,

~nelly~

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Oh poor baby new
      #243707 - 02/02/06 05:55 PM
ecmmbm

Reged: 02/23/03
Posts: 1622
Loc: North Carolina

I wonder if some fennel and chamomile tea at night might not help her? It relieves spasms and helps the gas pass on out. It is also very calming. Heather's tummy tea includes peppermint which actually upsets my tummy in too much quantity but these other 2 are fine and make me a little sleepy even. Poor thing!! Night is often worst for me too... also some heat applied at night might help. I sure hope you find something to help her, I'm a mother of 3, I feel for her AND you!

--------------------
Take care,
Michelle
...the greatest of these is LOVE. (I Cor 13)


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Re: 11 year old daughter been in pain every night for a year! new
      #243708 - 02/02/06 05:59 PM
shawneric

Reged: 01/30/03
Posts: 1738
Loc: Oregon

Does she go to bed at the same time every night?

How late does she eat before bed, how many hours?

How are her stress levels?

Does the pain go away when she finally falls asleep?

Does heat help the pain at night?



--------------------
My website on IBS is www.ibshealth.com


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Re: 11 year old daughter been in pain every night for a year! new
      #243711 - 02/02/06 06:16 PM
PaulineNZ

Reged: 02/02/06
Posts: 26


Thanks Nelly, I just about cried when I read your post - for the first time in a whole year, I have come across someone who was in pain every night, and understands. I mean, I'm not ecstatic you were in pain, oh you know what I mean LOL. She finds it so hard not being about to have butter on her g/f bread/toast and I don't let anyone eat margarine - because I estimate it is about one molecule away from being plastic! She has been using a very thin scraping of peanut butter as I don't know what else to give her, she will have banana, and does have jam/jelly on the peanut butter. Or she has gluten free cereal and fruit for breakfast. Morning tea is some Rice Thins with 'something' LOL once again it is banana, peanut butter etc. I don't know what else I can give her to replace what she has always had for years ie marmite and grated cheese.
Lunch is stuffed baked potato, or brown rice, chicken and vege, or toasted sandwich with tomato paste, chicken, mushrooms and a tiny bit of parmesan, or homemade soup and toast. Afternoon tea is g/f pikletes with jam and dinner is chicken or fish with potatoes,rice, or g/f pasta and vege, or pumpkin soup, baked stuffed potato and salad.

I hope I can learn a lot, and although I live in NZ, the first night my daughter is pain free, you will hear me whooping and praising God from there LOL,

Being gluten free, soy free and dairy free as well as free of all trigger foods is very difficult, but I am sure it can be done - we just need to work together.

Thanks again for taking your time, you have made my day.

Pauline



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Re: 11 year old daughter been in pain every night for a year! new
      #243713 - 02/02/06 06:24 PM
shawneric

Reged: 01/30/03
Posts: 1738
Loc: Oregon

I had severe IBS when I was ten and it was pain predominate and effected me all the time.

Here is some info for you.


However, there are things you can do.

I am posting some really good resources and information here for you.

This is information from the International Foundation for Functional Gastrointestinal Disorders. On there website kidsgihealth.

This here is really good information.

Questions and Answers

http://www.aboutkidsgi.org/questionsandanswers.html

and

NEW YORK (Reuters Health) - Childhood abdominal pain is a common complaint, and it may progress to adult irritable bowel syndrome (IBS) in some cases, according to a study in the American Journal of Gastroenterology.


IBS is marked by bloating, pain, constipation and diarrhea, and often doesn't seem to have a direct physical cause -- although the symptoms are certainly real.

"The natural history of childhood abdominal pain and its association with adult IBS remain poorly described," Dr. Nicholas J. Talley, of the Mayo Clinic College of Medicine, Rochester, Minnesota, and colleagues note in their report.

To investigate, they assessed the characteristics of childhood abdominal pain over the first 11 years of life in some 1,000 children born in Dunedin, New Zealand in 1972, and examined the association of childhood abdominal pain with IBS at when the participants reached 26 years of age.

A history of abdominal pain was documented in 18 percent of the children.

Childhood abdominal pain was more common in females than in males. The prevalence of abdominal pain peaked at age 7 to 9 years among boys, but it remained stable across assessments for females.

IBS at age 26 years was about 2 or 3 times more common among subjects with a history of childhood abdominal pain between the ages of 7 and 9 years compared to those with no history.

Factoring in gender, socioeconomic status, psychiatric disorder at age 26, childhood emotional distress, or maternal malaise did not alter this association.

"The emergence of multiple stressors in the home and school environment may present a plausible mechanism to account for these findings," Talley's team suggests.

As they point out, "The 7 to 9 year age-period follows closely from the school starting age in many cultures, and children who are predisposed to stress-related disorders may be at particular risk of developing symptomatic complaints at this point."

SOURCE: American Journal of Gastroenterology, September 2005.

and
webmd
Mind-Body Technique Eases Kids' Gut Pain

Kids Have Fewer Days of Abdominal Pain When Using Relaxation Technique

http://www.webmd.com/content/article/72/81542.htm


FYI

Defecation Anxiety Linked to Functional Constipation in Children


Charlene Laino


Oct. 15, 2003 (Baltimore) — Children with functional constipation have significantly more anxiety related to toileting behavior than healthy children — anxiety. This anxiety makes them more likely to continue to suffer from the problem, a prospective study suggests.

Moreover, some of these children develop generalized anxiety, reported researchers from the Cleveland Clinic Foundation.

"Constipated kids were not generally anxious overall, but among those with defecation anxiety we saw an increase in general anxiety," said Gerard Banez, PhD, a child psychologist at the Cleveland Clinic Foundation. "This does not prove cause-and-effect, but does suggest that those constipated children with greater defecation anxiety also exhibit increased general anxiety."

Painful bowel movements can make a child fearful of pain, Dr. Banez said. That fear can be generalized to sitting on the toilet.

The research was described here today at the American College of Gastroenterology 68th annual scientific meeting.

Up to 7.5% of children suffer from constipation, which accounts for about 3% of visits to pediatricians and up to 25% of visits to pediatric gastroenterologists, according to data cited in the study.

According to the researchers, constipation carries a host of physical and psychological consequences, and defecation anxiety is often implicated as a primary contributor to constipation.

Dr. Banez and colleagues studied 98 boys and girls aged 6 to 18 years who suffered from functional constipation. The youngsters completed the Defecation Anxiety Scale–Self-Report and Revised Children's Manifest Anxiety Scale, which measures generalized anxiety. The parents also rated their children's defecation anxiety on the Defecation Anxiety Scale–Parent Rating Scales.

By both self-report and parent report, children with functional constipation were found to have significantly more defecation anxiety than healthy children or children with asthma, the researchers said.

Overall, 70% of the children reported defecation anxiety compared with 58% of a control group of healthy children and 65% of children with asthma. The parents reported that 82% of their children suffered from defecation anxiety.

In addition, 30% of the children with constipation reported generalized anxiety. The greater the defecation anxiety, the greater the generalized anxiety, Dr. Banez said. Children with defecation anxiety have a higher chance of having generalized anxiety, although some children with no significant generalized anxiety still had defecation anxiety, he added.

Physicians who see children with constipation anxiety should rule out any medical cause, Dr. Banez said. Also, consider defecation anxiety in the differential diagnosis of any child whose parents report that their child seems to be withholding stool, is tearful at the urge to use the toilet, or shows vigorous resistance to using the toilet, he said.

Also, physicians should discuss strategies that promote relaxed toilet sitting as well as suggest dietary changes — possibly with a stool softener thrown in — to promote softer stools, Dr. Banez said.

William Whitehead, MD, professor of medicine at the University of North Carolina in Chapel Hill, said he has had some luck treating constipation anxiety with biofeedback, although he said that studies in Europe suggest that laxatives work just as well as the relaxation technique.

The question now, he said, is whether anxiety is the cause or the consequence of constipation. ?This study doesn?t really tell us, but it is still a major advance, the first trial I know of where they have linked defecation and anxiety directly using such a systematic approach.?

ACG 68th Annual Scientific Meeting: Abstract 723. Presented Oct. 15, 2003.

Reviewed by Gary D. Vogin, MD


Kids Take Sickness Cue From Parents
Excerpt By Nancy A. Melville, HealthScoutNews

(HealthScoutNews) -- The behavioral patterns of those with irritable bowel syndrome (IBS) can color their children's experiences of their own illnesses.

http://preventdisease.com/news/articles/kids_sickness_parents.shtml

Childhood bellyaches can be gut-wrenching
Agony but no answers: Youngsters sometimes endure months of unsuccessful tests, bouncing from doctor to doctor
See BELLYACHES, D2

Bellyaches often defy easy cures
By Laurie Tarkan
The New York Times

Color illustration by Earl F. Lam III

When 12-year-old Hannah Scott began middle school last year, she was so nervous that her stomach was not just in knots, it was in serious pain.
''It would start in the morning when I'd leave the house,'' said Hannah, a wisp of a girl with light brown freckles and long sandy hair. ''And when I got to school, it was really, really bad. I'd go to the nurse every other day, and be sent home.''
When the bellyaches persisted for months, Hannah's parents took her to a pediatric gastroenterologist, who ordered tests, including X-rays, a colonoscopy and an endoscopy, to rule out serious problems.
After nothing showed up, the ailment was diagnosed as irritable bowel syndrome, a gastrointestinal disorder with no organic cause and no proven treatment in children. But the doctor said there was nothing to do about it; eventually, it got so bad that her parents pulled her out of school.
An estimated 10 percent to 20 percent of all school-age children suffer severe recurrent abdominal pain. But many children and adolescents go for 13 to 18 months before being treated, and some are never treated at all.
In some cases, untreated pain is so debilitating that they miss school, dance classes, sports activities and social events. They are at risk of falling behind academically, physically, socially and developmentally.
Experts say that organic causes like ulcers, inflammation or intestinal blockages are to blame in only a small minority of children, 5 percent to 10 percent.
A majority suffer instead from what are called functional gastrointestinal disorders. The most common are functional abdominal pain, in which pain is the only symptom; irritable bowel syndrome, which brings on pain along with diarrhea or constipation; and functional dyspepsia, which typically shows up as pain with nausea or a feeling of fullness.
Often, children who have recurrent abdominal pain are put through a battery of invasive tests. They are placed on restrictive diets and given large doses of acid-suppressing medications or anti-diarrhea drugs, which may offer some relief for the symptoms, but often do nothing for pain.
Some children are told that their illness is ''all in their head,'' or that they are faking it.
''There are a lot of misconceptions that make the life of these children more difficult,'' said Carlo Di Lorenzo, chief of pediatric gastroenterology at Children's Hospital of Columbus, Ohio.
''They bounce from doctor to doctor, get more and more tests, until things get better or they find a specialist who knows how to treat them,'' Di Lorenzo said. In fact, there are clear criteria for diagnosing disorders that cause recurrent abdominal pain, and for most children, the diagnosis can be made without invasive tests.

Brain and gut: New approaches to treating pain are already being used in adults, including cognitive behavioral therapy; alternative treatments like relaxation techniques and massage therapy; and antidepressants. But they have not been widely adopted for children, in part because only a handful of small studies support such use.
In recent years, however, experts have begun to understand more about the connections between the brain and the gut, a relationship that is reflected in popular expressions like ''a gut-wrenching experience'' or ''having butterflies in your stomach.''
The gastrointestinal tract is awash in nerve cells and neurotransmitters. About 95 percent of the body's neurotransmitter serotonin is in the intestinal tract. Stress, nervousness, fear and other emotions often play out their own drama in the gut. In children with abdominal pain, the intestinal tract becomes hypersensitive to stimuli, with the slightest bit of gas, for instance, sending a flood of pain signals to the brain.
The problem appears to be a mismatch in signaling between the brain and the gut, said Lonnie Zeltzer, director of the Pediatric Pain Program at the David Geffen School of Medicine at the University of California, Los Angeles. ''If you have ongoing pain, you can develop abnormal pain pathways, so that the volume of pain signaling

is being turned up and up,'' Zeltzer said.
What causes the hypersensitivity is not completely understood, but experts believe that it is often set off by a stomach virus or an infection.
''It's not uncommon that a family will get viral gastroenteritis, the whole family gets better except the child,'' said Zeltzer, author of Conquering Your Child's Chronic Pain: A Pediatrician's Guide for Reclaiming a Normal Childhood. ''The pain system is turned on and stays on.''
Experts do not know why some children and adolescents develop this problem and others do not. One clue may be that children with abdominal pain tend to be unusually worried and anxious.
As an understanding of the brain-gut connection grows, however, some centers have begun to use techniques like cognitive behavioral therapy, relaxation training, massage therapy and other alternative approaches as a first line of treatment.
The effectiveness of these therapies is still debated, and the number of studies examining their effectiveness in children is very small, experts say. In one study published in the August issue of The Journal of Pediatric Gastroenterology and Nutrition, 18 children ages 8 through 17 who had pain for about a year were taught guided imagery and progressive relaxation.
In four to seven sessions, 89 percent of the children reported a reduction in pain, to an average of two episodes a week, from six, said Nader N. Youssef, a pediatric gastroenterologist at the Goryeb Children's Hospital in Morristown, N.J. and the lead author of the study. The children had fewer missed school days, and their quality-of-life scores rose significantly.

Tests can be stressful: Another novel approach is the use of antidepressants for the pain. An analysis of large studies of adults with functional abdominal pain found evidence for the effectiveness of low doses of tricyclic antidepressants, though the drugs have not been studied in children for such complaints.
Tricyclics, an older class of antidepressants, have also been associated with rare cases of unexplained sudden death, and some doctors require an electrocardiogram before prescribing them to children.
For those parents trying to help children cope with recurrent bellyaches, experts say it is important to understand that there does not have to be an organic reason for the pain, Zeltzer said. She advised parents to avoid unnecessary tests, because the tests themselves are stressful.
She and other experts recommend that parents help children learn relaxation techniques like breathing methods, progressive muscle relaxation or visualization to use when they are feeling stressed. The techniques are explained on many Web sites.
Children with recurrent stomach pain, experts say, should be kept in school and should stay involved in activities, if possible. These distractions help take the focus off the pain. Good sleep habits and exercise also help reduce pain.
In Hannah's case, her mother took her to a pain management center in Kansas City, Mo., where she learned cognitive behavioral strategies to help change her reactions to stress and relaxation exercises to reduce the stress and pain.
By late March, Hannah was back in school. ''I think I stopped thinking about it and worrying about it,'' she said.


http://www.sltrib.com/healthscience/ci_2546772;jsessionid=KDPSAI1MCRB1ECUUCBQSFEY

KidsHealth.org Gastrointestinal Problems

KidsHealth.org Gastrointestinal Problems
--------------------------------------------------------------------------------
FYI

"Gastrointestinal Problems

Sun Dec 5, 7:00 PM ET

KidsHealth.org


Yahoo! Health
Have questions about your health?
Find answers here.


"I can go by myself now." You proudly celebrated the day when your toddler began to make toilet trips alone. But now you need to guide him through a childhood that's bound to have a tummy ache or two. How do you know what's normal?


Many parents expect their child to pass one bowel movement (stool) each day, and they begin to worry if this doesn't happen. But a daily bowel movement isn't necessarily "normal" for every child, and your child may have anywhere from three bowel movements a day to three a week and still be OK. The key here is to check for signs of pain, cramps, bloating, or fullness in the abdomen. Stools should be soft and easy to pass - neither too watery nor too dry and hard. And if your child sees blood with a bowel movement, either in the toilet water or on a toilet tissue, you should always call your child's doctor.


Constipation
Common adult bowel problems can affect children, too. For example, constipation can trouble children who eat a typical fast food diet - rich in fats (burgers, fries, milkshakes) and processed sugars (candy, cookies, sugary soft drinks). These children may have bowel movements that are hard, dry, and painful. Their time between bowel movements may be 4 days or more.


If constipation is a problem for your child, you might first take a serious look at his diet - does it include enough water and enough dietary fiber? Check for good exercise habits, since physical activity nudges the bowels into action. Also, setting a regular meal schedule can help some children develop regular bowel habits, since eating is another natural stimulant for bowel activity. If necessary, schedule breakfast a little earlier to give your child a chance for a relaxed visit to the bathroom before school.


Some children become constipated because they ignore the natural urge to empty their bowels. They may not want to use a restroom away from home, or they may feel embarrassed to ask a teacher to be excused from class. When this happens, simple reassurance from you and your child's teacher may be the only treatment necessary.


Most childhood constipation problems can be helped by sensible changes in lifestyle or diet. Laxatives are not usually needed. In fact, using laxatives unnecessarily can actually cause constipation. So always ask your child's doctor before giving your child any medicine for irregularity. Rarely, constipation can be a sign of other medical illnesses, so keep your child's doctor informed if your child continues to have problems.


Irritable Bowel Syndrome
In adults, irritable bowel syndrome (IBS) is responsible for almost as many work absences as the common cold. IBS can affect children, too, giving them a puzzling set of digestive complaints. Sometimes it's cramps, gas, and diarrhea; sometimes it's bloating and constipation; and sometimes it's alternating bouts of both. Children with IBS may sometimes pass mucus with their bowel movements, but they have no rectal bleeding or fever.


IBS often troubles children during times of stress - family problems, divorce, moving, taking exams, even going on vacations. But IBS is not a psychological problem; it has a physical cause. People with IBS have bowels that go into spasms more easily than those who don't, and scientists don't yet know why.


What they do know is that certain types of foods (milk, chocolate, caffeine) can trigger IBS in both children and adults. And IBS symptoms often improve when these foods are limited. Increasing fiber in the diet, and using techniques to relieve stress also seem to help. If necessary, your child's doctor may prescribe medicines to relieve symptoms.


Lactose Intolerance
For many children, an ice cream sundae or a cool glass of milk at lunch means an afternoon of cramps, gas, and diarrhea. If this happens to your child, he may be one of the more than 30 million Americans who have lactose intolerance. This condition is common in Americans with Asian, African, and Mediterranean family origins. Across the world, about 70% of all people may have some degree of lactose intolerance.


In this condition, the body manufactures too little lactase, an enzyme found in the intestines. Lactase breaks down lactose, a sugar that's found in milk and milk products. When lactose isn't broken down in the intestines, it ferments and causes gas and diarrhea.


If you notice that milk products seem to affect your child's digestive system, talk to your child's doctor. Growing children still need the calcium and vitamins found in dairy products. So if milk is a problem for your child, your child's doctor can suggest other types of foods that will supply these nutrients. Dairy products made especially for persons with lactose intolerance are sold in many supermarkets. Lactase enzyme supplements are also sold as drops and tablets. These are safe for children and may be used as your child's doctor recommends."

www.kidshealth.org/

This is also something very much worth reading

Mind-Body-Pain Connection: How Does It Work?

By Michael Henry Joseph
WebMD Live Events Transcript

Event Date: 05/11/2000.

Moderator: Welcome to WebMD Live's World Watch and Health News Auditorium. Today we are discussing "The Mind-Body-Pain Connection: How Does It Work?" with Brenda Bursch, Ph.D., Michael Joseph, M.D., and Lonnie Zeltzer, M.D.

Brenda Bursch, Ph.D., is the Associate Director of the Pediatric Pain Program, Co-Director of Pediatric Chronic Pain Clinical Service and Assistant Clinical Professor of Psychiatry & Biobehavioral Sciences at UCLA Department of Pediatrics in the School of Medicine. She has written about asthma, developmental & behavioral pediatrics, emergency medicine, AIDS education and prevention, chronic digestive diseases and pediatric bowel disorders. She has membership in the American Pain Society, American Psychological Association, Munchausen Syndrome by Proxy Network, and the UCLA Center for the Study of Organizational and Group Dynamics.

Michael Henry Joseph, MD, is an assistant professor of pediatrics and co-director of Chronic Pain Services at the University of California at Los Angeles Children's Hospital. He is a recipient of the Golden Apple Award for Excellence in Teaching.

Lonnie Zeltzer, M.D., is an expert in the field of pediatric pain. She is a former president of the Society for Adolescent Medicine and member of the National Institute of Health?s Human Development Study Section. She is currently a Professor of Pediatrics and Anesthesiology at the UCLA School of Medicine. She is Director of the UCLA Pediatric Pain Program and Associate Director of the Patients & Survivors Section, Cancer Prevention and Control Research Branch of the UCLA Jonsson Comprehensive Cancer Center. She has well over one hundred scientific publications, reviews and chapters in medical journals, and has lectured internationally.

http://www.webmd.com/content/article/1/1700_50465


this is another important one

The Other Brain Also Deals With Many Woes

http://www.nytimes.com/2005/08/23/health/23gut.html?ex=1282449600&en=1e310e52565798bf&ei=5090&partner=rssuserland&emc=rss

Hypnotherapy can be used with a 11 year old. Not a problem and kids usally respond very well to it.

This is important, the hypno does not have to be used just for stress and anxiety IBS but on IBS in general, stress and anxiety reduction are side effects and part of the process, but HT has shown to change physical issues in regards to IBS.


Reading the "first year IBS" can help for the information and eating for IBS.

Its important to treat young people early on for the best results later on in there life.

This is important for parents to know also.

http://www.kiwiterapi.dk/whiplash/frames/gutthoughts.htm



--------------------
My website on IBS is www.ibshealth.com


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Re: 11 year old daughter been in pain every night for a year! new
      #243714 - 02/02/06 06:26 PM
PaulineNZ

Reged: 02/02/06
Posts: 26


Hi Shawneric, thanks for taking the time to post.
She basically goes to bed at the same time each night around 8.30 which is basically 2 hours after dinner. If she stays up later like when we were on holiday she was still sore. Her pain is there each night, whether she has had school that day (I home school) or whether it is weekend or holiday.
Yes, the pain does go away when she finally goes to sleep, on the odd occasion - once or twice a month approx, she wakes to go to the toilet at about 1.30-2am and is sore and can't settle again for another hour.
She won't let anything near her tummy, not a hand to rub it, or a hot water bottle or a heat pad, she can't bear a waist band around her tummy - she is too sore. During the day she is absolutely fine.

Before Feb last year, she was one healthy, happy kid. Not a worrier, nor a stressor.

I have a little theory: pain makes you stressed, no blinding revelation I know but if you weren't stressed before you had ibs you are/or will be now. She is pretty amazing at coping, but does get grumpy with us when we can't do anything to help, and we do what we can and then leave her to go to sleep listening to her music, because we have found tha tif she gets over tired it makes everything 10 times worse.

Thanks
Pauline

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Re: 11 year old daughter been in pain every night for a year! new
      #243715 - 02/02/06 06:34 PM
hawkeye

Reged: 06/16/03
Posts: 705
Loc: NYC

My IBS started early, but came to a head when I was 11, so I REALLY feel for your daughter. A few small suggestions: smaller more frequent meals. I can barely digest dinner - but lunch usually isn't such a challenge. So, I eat a lot during the day and then basically a snack for dinner - and even that is in two seperate times in the evening. Do what you can to have your daughter get the colonoscopy and endoscopy. They both suck, and they're both necessary to rule out other things. When she has the endoscopy they can do a biopsy which is the 'gold standard' test for celiac sprue. But she would have to eat some gluten for a certain amount of time before the test was done. I don't know how long.
Another small suggestion, "living without" magazine, primarily geared toward celiacs and lots of ads for celiac kid foods, and teeshirts and all sorts of things.
The worst part of having IBS as a kid aside from the pain is the feeling that you're alone in having this. There was a lot of shame connected to my symptoms as a kid - as if I wasn't strong enough to feel better or somehow caused my pain. There's a certain indignity to having so much attention on your bowels anytime after one has graduated from diapers! Have her look at these boards and see the spectrum of people who deal with this. There's a teenager, honeymix, on the living room board maybe she could get in touch.

Good luck,
Dan

--------------------
Ladies & gentlemen take my advice, pull down your pants and slide on the ice.

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It's good to have you here, Pauline! new
      #243716 - 02/02/06 06:36 PM
Nelly

Reged: 08/06/04
Posts: 4381
Loc: Within stray mortar fire of DC

I'm so glad you posted, Pauline! I know you're going to find some great information here, and I applaud you for being so proactive about your and your daughter's health!! It's not easy going through this, and I know it makes it even harder watching your child go through it as well.

Can she have apple sauce or jello? I personally can't do brown rice at all because it's too much insoluble fiber (abbreviated IF on the boards) for me, which gives me explosive D. Peanut butter, either, because it makes me have gas pains which feel like ripping claws right under my naval. What is your daughter's pain like? Does it begin predictably, ie 1/2 an hour after she begins eating, or when she lies down?

You've been really good about being vigillant about her diet. Have you tried keeping a pain journal? When it happens, what it feels like, severity + actuivities that could have caused it besides food? After keeping mine for a month I realized that my night attacks were caused by the waistband on my pajamas. (!!!) After I realized that sleeping with no waistband whatsoever (no undies or bottoms of any kind ) curbed my attacks, I now have them very rarely.

Another thing about IF, I have to be extremely careful about IF and dairy. Sweet potato (yams), lettuce, tomato, onions and garlic are extremely rough on my GI tract. I can do green vegs if they're boiled to within an inch of their life. All other fruits and vegetables are very tough on my gut and can cause me a lot of uncomfortable bloat and ripping gas pains. My suggestion would be to cook these until very mushy or eliminate them completely. No parmesean any more!!!! 10 times out of 10 this will make her feel awful, if not right away, then within a couple of days it can be really harmful. OK, I'll get off my soapbox now.

Best of luck to you, and please post back your progress! I'm always learning something new here!!

~nelly~

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Thanks for your input everyone, please keep it up! new
      #243718 - 02/02/06 06:54 PM
PaulineNZ

Reged: 02/02/06
Posts: 26


Thanks, I feel so humbled that you have taken the time to reply, I am 'digesting' all that has been said and learning too!

Keep posting, and thanks for your encouragement and insight.

Pauline

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link for living without magazine new
      #243719 - 02/02/06 06:59 PM
hawkeye

Reged: 06/16/03
Posts: 705
Loc: NYC

www.livingwithout.com
latest issue has an interview with Sarah Vowell who did the voice for the daughter in "The incredibles" and is a writer and radio commentator on npr.

--------------------
Ladies & gentlemen take my advice, pull down your pants and slide on the ice.

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Sorry she's suffering new
      #243773 - 02/03/06 07:13 AM
Augie

Reged: 10/27/04
Posts: 5807
Loc: Illinois

That must be so hard for you to see your child in pain.

I also have pain every single day and night. Nothing has helped.

I did the gluten free diet too....but all made my constipation so bad. Are you sure the gluten free diet isn't making her more constipated? My doctor said all the rice products can be constipating. It sure makes me more constipation. I've tried adding some gluten back to my diet to see if helps the constipation...even though I had gluten antibodies. I hate the constipation too much.

Have you had her tested for celiac before she went on the gluten free diet? It's too late now because she is already eating GF.

Is she following Heather's diet? Taking an SFS or any supplements such as fennel tea or peppermint tea/capsules?

I know this is confusing and so hard. But keep us updated and I hope we all find some relief in time.

--------------------
~ Beth
Constipation, pain prodominent,cramps, spasms and bloat!

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Also wanted to add... new
      #243781 - 02/03/06 07:30 AM
Augie

Reged: 10/27/04
Posts: 5807
Loc: Illinois

...that you said your daughter was on a low lactose diet. I would suggest you go totally lactose, casein, dairy free. Lactose, even in small amounts, can do more harm than you realize...and it might not be an immediate reaction. Lactose taken in the day may not produce symptoms until later.

I have awful pain at night. I can make it through the day, somehow....but night time it hits like a knife. The pain and gas and cramps are just terrible.

--------------------
~ Beth
Constipation, pain prodominent,cramps, spasms and bloat!

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Re: Thanks for your input everyone, please keep it up! new
      #243789 - 02/03/06 07:49 AM
Nelly

Reged: 08/06/04
Posts: 4381
Loc: Within stray mortar fire of DC

Not at all! If I can help just one person avoid one painful attack, I can feel that all the misery I've been though can be of use to someone!

I make mistakes with my diet all the time (I put the "error" in trial and error!), and have sabotaged myself on purpose more than once just to feel "normal" in a social setting. It's no fun being sick, and it's worse feeling you have to treat yourself as sick, and that's as your friends see you as well. That's why these boards are so great cos we're in the same boat, and it's a big boat where there are no losers or failures!!

The diet is going to be bland at first so perpare yourself to reap the backlash from your DD (Darling Daughter). The main thing is she needs to get out of pain, so food is only for survival right now. It'll get better! So no caffiene (includes tea!) or known triggers for the moment. Here's a link to the diet parameters: http://www.helpforibs.com/diet/

Come here for support any time you need to~!

~nelly~

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Re: 11 year old daughter been in pain every night for a year! new
      #243828 - 02/03/06 09:27 AM
shawneric

Reged: 01/30/03
Posts: 1738
Loc: Oregon

PaulineNZ

"She basically goes to bed at the same time each night around 8.30 which is basically 2 hours after dinner."

Try changing the time she goes to bed for a bit, it does not have to be by that much, maybe an hour or so, but this might actually make a difference.

Yes lack of sleep can make it much worse. Sleep is very important.

But the gut has its own time in can run on and changing it sometimes helps.

Its good not to eat before bed, but it can also be hunger signals at night too that can trigger a cascade of signals, so not to go to bed hungry if possible, perhaps a very small snack to stop any hunger signals.

Problems already found in IBS have to do with stress and anxiety, even though they are not the cause of IBS and pain is very much tied into how you are feeling, even the IBS itself is enough, regardless of outside stressors, but thinking about school work the night before can add to the problems. For her worrying about attacks every night is enough for this system to be in disharmony.

I really suggest you try Mike's tapes for this, because they help with pain and can make you sleep better, as well as working on global symptoms for IBS. I wish I did them when I was ten, it would have saved me a whole lot of pain and symptoms.

This really does sound like IBS or perhaps CFAP and that is really the way to treat it at the moment and see if she improves.

Laying on her left side might help also when she goes to bed.

"Not a worrier, nor a stressor."

This doesn't matter all that much, because what were talking about here is a responce to all stressors mental and physical.

Pain and stress in IBS are VERY inter-related. The brain and the gut are both operational to cause the symptoms.


This is something important in IBS and pain and symptoms. It is not really well understood by a lot of IBSers.

"Posted on Thu, Jan. 19, 2006
Stress can wreak gastrointestinal havocStress doesn't cause irritable bowel syndrome or other gastrointestinal problems -- but it can make the symptoms worse.
The gastrointestinal tract is governed by the autonomic nervous system, the nerve network that serves internal organs and works mostly without our thinking about it. The autonomic system has two parts: the sympathetic nervous system, which activates in stressful situations; and the parasympathetic nervous system, the counterpart that promotes quiet activities (such as digestion).
When stress occurs -- work problems, disagreements, money woes or true danger -- the sympathetic nervous system goes into high gear. Your body responds in fight-or-flight mode, prepared to face or run away from danger, even if the "danger" is a traffic ticket or a teenager driving you crazy.
When the sympathetic system is in charge, in essence, your gastrointestinal system turns off. The body is not worried about digestion when it's geared up to respond to an emergency.
That is the motor side of things; yet the gastrointestinal system also has a sensory side. The autonomic nervous system sends sensory signals to the brain. During times of stress, our brains are looking for clues from all over; our bodies are more vigilant about sensing what is going on. Under stress, the gut feels more and does less. For anyone, stomachaches and diarrhea are common symptoms of stress.
So it's no surprise that stress can intensify symptoms of gastrointestinal conditions.
With irritable bowel syndrome, a chronic condition with symptoms that include abdominal pain, cramping, gas, diarrhea and constipation, the severity of symptoms varies widely.
For many people, managing stress is the first line of treatment, along with changes in lifestyle and diet. Medication can be helpful for people with more severe symptoms.

SOURCE: Mayo Foundation for Medical Education and Research

http://www.sanluisobispo.com/mld/dfw/news/news_to_use/13661149.htm?source=rss&channel=dfw_news_to_use

The fight or flight triggers whats called the HPA axis which releases a chemical (histinmine) from mast cells in the gut that contributes to pain. Its complex.

You might want to read this also.

These are pediactri pain specialists.

Mind-Body-Pain Connection: How Does It Work?

By Michael Henry Joseph
WebMD Live Events Transcript

Event Date: 05/11/2000.

Moderator: Welcome to WebMD Live's World Watch and Health News Auditorium. Today we are discussing "The Mind-Body-Pain Connection: How Does It Work?" with Brenda Bursch, Ph.D., Michael Joseph, M.D., and Lonnie Zeltzer, M.D.

Brenda Bursch, Ph.D., is the Associate Director of the Pediatric Pain Program, Co-Director of Pediatric Chronic Pain Clinical Service and Assistant Clinical Professor of Psychiatry & Biobehavioral Sciences at UCLA Department of Pediatrics in the School of Medicine. She has written about asthma, developmental & behavioral pediatrics, emergency medicine, AIDS education and prevention, chronic digestive diseases and pediatric bowel disorders. She has membership in the American Pain Society, American Psychological Association, Munchausen Syndrome by Proxy Network, and the UCLA Center for the Study of Organizational and Group Dynamics.

Michael Henry Joseph, MD, is an assistant professor of pediatrics and co-director of Chronic Pain Services at the University of California at Los Angeles Children's Hospital. He is a recipient of the Golden Apple Award for Excellence in Teaching.

Lonnie Zeltzer, M.D., is an expert in the field of pediatric pain. She is a former president of the Society for Adolescent Medicine and member of the National Institute of Health?s Human Development Study Section. She is currently a Professor of Pediatrics and Anesthesiology at the UCLA School of Medicine. She is Director of the UCLA Pediatric Pain Program and Associate Director of the Patients & Survivors Section, Cancer Prevention and Control Research Branch of the UCLA Jonsson Comprehensive Cancer Center. She has well over one hundred scientific publications, reviews and chapters in medical journals, and has lectured internationally.

http://www.webmd.com/content/article/1/1700_50465


--------------------
My website on IBS is www.ibshealth.com


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Re: 11 year old daughter been in pain every night for a year! new
      #243837 - 02/03/06 10:11 AM
PaulineNZ

Reged: 02/02/06
Posts: 26


Thanks for the suggestions and info, but seaneric can you tell me what CFAP is, I have never heard of this abbreviation before.

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Re: 11 year old daughter been in pain every night for a year! new
      #243838 - 02/03/06 10:20 AM
shawneric

Reged: 01/30/03
Posts: 1738
Loc: Oregon

CFAP is Chronic functional abdominal pain another one of the functional disorders without c or d or alternating.

Chronic Functional Abdominal Pain
By: Douglas A. Drossman, M.D.

http://www.aboutibs.org/Publications/CFAP.html

Diagnosing and Treating Patients with Refractory Functional Gastrointestinal Disorders

"Twelve key questions can be asked during the first visit to help determine the biopsychosocial nature of the condition and to help plan possible psychological referral or treatment.

1. Is the Pain Acute or Chronic?

Chronic pain is more strongly influenced than acute pain by higher brain centers or enhanced visceral sensation, so it is less likely that tissue pathology will be found with chronic pain. Thus, although acute pain is more likely to be associated with a single specific cause related to tissue damage, chronic pain has multiple, behavioral contributions. Acute pain is associated with physiologic arousal (such as tachycardia and diaphoresis) and anxiety, whereas chronic pain is associated with no arousal; the patient may even seem withdrawn or depressed [30].

For acute pain, peripherally acting analgesics and narcotics work well, and treatment includes rest. Recovery is expected after treating or removing the nociceptive source. For chronic pain, peripherally acting analgesics are not often helpful, narcotics are usually contraindicated, and treatment frequently involves increased physical activity and behavioral or psychopharmacologic treatment. Because recovery is rare, patients must learn to cope. However, with refractory pain, "sick-role" behavior can also be seen, in which the patient makes unconscious efforts to maintain the illness state.

2. Is There a Pain History?

Is this the only episode of significant pain, or does the patient have a long-standing history of painful gastrointestinal or other symptoms? Patients with frequent symptom episodes and visits to physicians for problems such as "gastroenteritis," back pain, headache, and dysmenorrhea communicate a long-standing pattern of somatic sensitivity, pain behaviors, or both. This gives a poorer prognosis for recovery.

3. Is the Pain Associated with Altered Gut Physiology?

Patients with intermittent pain that is typically brought on by eating, stress, or menses; that is associated with change in bowel function; or that is relieved by defecation or vomiting have a functional gastrointestinal disorder (such as the irritable bowel syndrome, functional dyspepsia, or functional constipation) [4, 13]. In these patients, the pain is related to changes in gut physiology that respond to treatments directed at the gut (such as cisapride [31, 32] and anticholinergic agents e). Conversely, constant pain not associated with changes in gastrointestinal function (such as chronic functional abdominal pain [13]) is modulated by higher brain centers; thus, gut-acting agents are not helpful. Treatment involves behavioral methods, psychopharmacologic methods, or both.

4. What is the Patient's Understanding of the Illness?

All patients hold certain perceptions about their illnesses and have expectations for treatment: their "cognitive schema" or belief system [34, 35]. If their beliefs are realistic and consistent with physician expectations, a mutually acceptable treatment plan is likely. However, many patients referred to medical centers have unrealistic beliefs about cause and treatment and are not satisfied by negative findings or the physician's reassurance. For example, the patient's belief that "there must be a medical (that is, 'organic') explanation for this pain" leads to continued medical consultations, hypervigilance to bodily sensations, and increased anxiety and arousal when no "cause" is found. A perpetual state of anxiety, physiologic arousal, and sensitivity to pain ensues, which only confirms (from the patient's perspective) the evidence for a physical cause."

http://www.annals.org/cgi/content/full/123/9/688





--------------------
My website on IBS is www.ibshealth.com


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Re: Sorry she's suffering new
      #243839 - 02/03/06 10:24 AM
PaulineNZ

Reged: 02/02/06
Posts: 26


Hi, thanks for posting. It is heartbreaking seeing her suffer every night. We feel so useless and helpless, Mum and Dad are the ones that can fix anything right? Well in a kids eyes anyway until they can't!

If you have tested positive for gluten sensitivity you should be on a gluten free diet as as I understand it, this is the precursor to coeliacs.

g/f products don't contain so much roughage, that is why we use bread with flaxseeds etc in it.

She had negative coeliac bloods then went gluten free, this was the first time we had her pain free during the day as well in 6 months. The private specialist has tested her for some gene thingie (clever eh?) to see if it is gluten or the wheat. We find out the results to these new tests and other next Tuesday.

I will talk to her about strictly adhering to the diet, I know that if she could get pain free at night, it would make her want to keep on the diet, but so far everything we have tried has made no difference.

Thanks again

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Re: 11 year old daughter been in pain every night for a year! new
      #243865 - 02/03/06 11:09 AM
jblake

Reged: 05/20/05
Posts: 41
Loc: East Coast, USA

I am IBS-C and have had many hospital bouts due to constipation/impaction before I finally (hopefully) figured things out. Yesterday was one year since my last hospital stay (for three years I was in about every three to six months includng three surgeries).

How much insoluable fiber does she eat? I had to basically delete insoluable fiber from my diet. It just made the constipation worse (pain, gas, etc)no matter how much water I drank or exercise I got. All those fiber supplements and raw vegetables and fruit (even eating soluable fiber first)just "cemented" everything in my gut. The last diagnoses (after many) is slow transit colon which certainly makes the most sense. I take Zelnorm and Milk of Magnesia daily.

I eat soluable fiber including cooked fruit and "smashed" vegeetables daily now. I don't eat any dairy-all soy although too much of that can give me lots of gas. I have learned to live with all the funky stomach noises (especially since I am not in pain anymore)but then I am 49 years old. I can only imagine that it would be very tough as a preteen.

I snack all day long, very few "meals". I drink lots of water/peppermint tea/fennel tea/other herbal teas and cranberry juice.

One of the best tricks I learned when in pain (mine was always-and on occassion still is- located on my left side, sometimes near the center below my belly button and/or under left ribcage)is to lie on my left side with my knees drawn up to my chest. And take long, slow, deep breaths. Maybe you can help her with the breathing, it does help to have a coach. It also gets the mind focused on something other than the pain.

Good luck. Hope you find something in all this information that helps.

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soy-free, dairy-free, gluten-free parmesan new
      #243901 - 02/03/06 11:52 AM
Maile

Reged: 01/30/06
Posts: 17
Loc: California

i agree with what others have said: completely eliminating the dairy may help a lot. Being soy-free makes that tougher, but she doesn't have to be totally deprived.

I haven't tried this, but it might be a good replacement for some of the dairy she's been eating. (though the yeast and fat might be triggers). I think you could probably get it by mail order in NZ.

parma

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Re: 11 year old daughter been in pain every night for a year! new
      #243911 - 02/03/06 12:18 PM
PaulineNZ

Reged: 02/02/06
Posts: 26


Hi there,thanks for the post. She probably does eat quite a bit of insoluble fibre. This is her third day of not going, she will go sometime today - if she doesn't go every day she goes every second or third day. We have tried fibre supplements, obviously haven't bought any from Heather yet, and both psyllium and normacol made her so sore and gassy she was doubled up in pain. I will try the suggestion of lying on left side with legs bent and deep breathing, I have done variants of this over the months :-)
I have cut down her fruit consumption considerably, especially when I read that bananas can cause gas.

I know I don't know what I'm talking about but all this seems to be treating the symptoms and nothing getting to the bottom of what actually causes irritable bowel syndrome, I have read articles on the SIBO small intestine bacteria overgrowth and this makes sense to my untrained brain. These bacteria feed on partially digested foods in particular carbs and sugars causing gas and cramping. I know there are other articles that dispute this theory.

I guess I just can't get my head around a kid who was healthy on Thursday 4 Feb 2005 and then in pain etc on Friday 5 February 2005 and has continued like this for the year. How intolerances can just 'show up' 'out of the blue' I just don't know. I had at least been intolerant to cow's milk as a baby and still have problems with dairy products, but to suddenly become gluten and lactose intolerant in a day or there abouts like she has???????????

I can't fathom why there is no pain during the day (believe me I am thankful), but only pain at night, it seems to me that there is a gas build up of what she has eaten throughout the day, and this is causing the colicky crampy pain and gas at night. She has a very windy butt. :-)

Please excuse my ramblings, just a tired and desperate mother.

Thanks for listening
Pauline



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Re: soy-free, dairy-free, gluten-free parmesan new
      #243916 - 02/03/06 12:28 PM
PaulineNZ

Reged: 02/02/06
Posts: 26


Thanks Maile - I'll see what I can find out.

Pauline

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Re: 11 year old daughter been in pain every night for a year! new
      #243944 - 02/03/06 01:30 PM
shawneric

Reged: 01/30/03
Posts: 1738
Loc: Oregon

Its extremely unlikely its SIBO, she doesn't match the symptoms for one. Of course you could get a test for it, but I think its unlikely the problem.

IBS and SIBO are also two different conditions. Despite some of the controversy lately about it, although its possible for them to overlap. I could explain if you wish.

She does match IBS if anything and her age is also more the likelyhood its IBS.

Gas can cause pain because of sensitive nerves linig the gi tract in IBS.

The chemical the gut releases to signal to the brain sensations in the gut is serotonin and they know there is a problem with that in IBSers.

All pain is processed in the brain. There is an impairment in IBS in a particular part of the brain called the Anteior Cinculate Cortex, so the signals coming from the gut can be not working right.

I might have missed something, but what testys has she had done.

Bloodwork
stool tests (three)
colonoscopy?

You might also want to read this.

http://hopkins-gi.nts.jhu.edu/pages/latin/templates/index.cfm?pg=disease1&organ=6&disease=43&lang_id=1

and this



with permission

Frequent stomachaches in
children: a reason for concern?
By Miranda Van Tilburg, PhD
Assistant Professor of Medicine
Division of Gastroenterology and
Hepatology
School of Medicine
The University of North Carolina at
Chapel Hill
Most children will complain of
a stomachache once in a while,
because it is one of the most common
childhood pain experiences.
Complaints can range from a vague
queasy feeling in the stomach to
doubling over in pain accompanied
by vomiting, diarrhea or constipation.
Fortunately, in a majority of cases,
the reasons for a stomachache are minor and
relatively benign. Most often, the complaint
settles without a specific diagnosis, even when
a doctor is consulted.
However, some children are more prone to
developing abdominal pain than others. These
children experience frequent stomachaches
over a period of several months to several years,
which can be very disrupting in the child's life.
Due to (a fear of developing) stomachaches,
these children often miss out on family events,
social outings with friends, and attending school.
Stepping out of normal life in this way makes
these children vulnerable to loneliness, anxiety,
depression and low self-esteem.
In the late 1950's, the English pediatrician John
Apley was one of the first to systematically study
and describe this phenomenon of childhood
stomachaches, which he named Recurrent
Abdominal Pain (RAP). In his first monologue on
RAP, Apley describes the typical situation of a
child who complains of frequent stomachaches.
This child has been sent home from school
and may even have vomited however, by the
time he arrives at the doctor's office, the pain
is usually gone and upon examination nothing
but indefinite tenderness in the abdomen is
found. The doctor usually does not find anything
definitive on which to base a diagnosis. Most
likely, the child has had the stomach pain before
»
»
»
»
as well as somebody in his immediate family. The
pediatrician feels he or she can wait for further
developments with the child but has doubts
about having missed something. Was (s)he right
to express only reassurances or should further
investigations have been carried out? This
description of the pain-prone family
and doubtful physician is still true
today.
What is RAP?
Apley defined RAP as at least three
episodes of pain occurring within
three months that are severe enough
to affect the child's activities. This
diagnosis is still widely used in
clinical practice and research.
Sometimes, Rome classification
is used, with the most common
diagnoses being Functional
Dyspepsia (FD) or Irritable Bowel
Syndrome (IBS). FD is diagnosed when there
has been at least 12 weeks of persistent or
recurrent pain in the upper abdomen, without
evidence of organic disease and no relief with
defecation or change in stool form or frequency.
IBS is diagnosed when there has been at least 12
weeks of abdominal pain, without structural or
metabolic abnormalities and at least two of the
following three features -- relief with defecation,
change in stool frequency, or change in stool
consistency. Upon careful review of RAP patients,
it is found that pediatric IBS is very common – 45
to 70% of RAP patients meet Rome criteria for
IBS and about 16% are ascertained to suffer from
functional dyspepsia.
Nobody is in as much pain as my child
RAP patients and their parents often believe their
symptoms are unlike "normal" stomachaches
reported by other children. Pediatricians and
gastroenterologists, on the other hand, perceive
RAP as a problem that is overflowing their
practices. The truth lies somewhere in between
these two perspectives. RAP is one of the most
common chronic pain complaints in childhood,
but only 10 to 25% of children are affected.
Symptoms often wane with time and spontaneous
remission of RAP is likely. Yet, more than half
of RAP children will continue to suffer from
frequent somatic or psychological symptoms
into adulthood. For example, Christensen and
Mortensen reported that 11 out of the 18 RAP
patients in their study suffered from abdominal
pain 29 years later.
Frequent stomachaches in children: a reason for concern?
Miranda Van Tilburg
3
out as early as possible. Depending on the symptoms, a
physician can order blood, urine and stool tests to rule
out some common conditions. But, the use of X-rays, CTscans
and endoscopies are usually restricted to cases in
which the history or physical exam raises questions as to
the diagnosis. Even with extensive testing, the odds are
against finding an organic cause for a child who meets
symptom criteria for RAP. In only one out of 10 cases,
an organic cause can be identified and misdiagnosis
is extremely rare. Even up to 20 years after an initial
diagnosis of RAP, the chance of identifying an initially
undiagnosed organic disorder is very low.
Is it all in your head?
Apley believed that if there is no organic cause for the
pain, then the stomachaches are psychogenic. In other
words, RAP patients suffer from an emotional disorder.
He came to this conclusion because stress seemed to
exaggerate or precede pain attacks and psychotherapy
was usually effective in relieving attacks. In trying to
explain the absence of abnormal physiological findings,
many have followed Apley's lead and suggested these
children suffer from psychological problems. RAP
patients have been described as fussy, perfectionistic,
high strung and anxious, and several studies have
shown they suffer from more psychological problems
than healthy children.
However, the landmark work of Walker & Greene
has shown that anxiousness is a consequence of the
presence of abdominal pain rather than a cause. RAP
patients are not necessarily more anxious or depressed
than patients suffering from peptic ulcer or IBD, in which
the abdominal pain is caused by inflammation of the GI
tract. These findings suggest that chronic abdominal pain
affects patients in similar ways regardless of etiology,
and the notion that RAP is a psychogenic disorder has
now fallen largely out of favor. Psychosocial factors are
assumed to influence GI functioning and can exaggerate
symptoms, but they play only a limited causal role.
Suffering from abdominal pain does, however, generate
psychological distress. It can produce not only anxiety
but also increased depressive symptoms, somatization
and lower self-esteem. Now it is understood that the
cause of RAP is neither organic nor psychogenic,
but there is close interplay between physiology and
psychology.
What is causing RAP?
Although no structural abnormalities or diseases
may be found, RAP patients do show some abnormal
physiological characteristics. There is growing evidence
that a disruption in the functioning of the GI tract is one
of the major causes of RAP. This basically means that the
Frequent stomachaches in children: a reason for concern?
In other words, RAP patients suffer
from an emotional disorder. He came
to this conclusion because stress
seemed to exaggerate or precede
pain attacks and psychotherapy was
usually effective in relieving attacks.
Are RAP stomachaches real, imagined or faked?
Since stomachaches are notoriously used as an excuse
for skipping school, they have gotten a bad reputation.
A child with RAP is often thought of as a whiner who
uses his bellyaches to get attention or get out of things,
especially when a physiological cause for the pain
cannot be identified. RAP children and their families
face this type of prejudice almost daily, even among
many health care professionals. However, it is important
to understand that the pain of RAP is real and not faked
or imagined. Even abdominal pain caused by stress
or worry about going to school is usually real. Most
children never think about faking it. Acknowledging the
validity of RAP stomachaches is the right thing to do,
but keeping a child who suffers from RAP out of school
every time he or she complains is not necessary. If no
other symptom, such as vomiting or fever is present, it
is usually safe for the child to go to school.
Has a serious disease been overlooked?
Both parents and physicians are often doubtful about
the diagnosis of RAP. There is no marker or test to
identify RAP; the diagnosis is made purely on the basis
of symptom characteristics. Common organic causes of
abdominal pain are usually ruled out before giving a
diagnosis of RAP. The list of disorders that can cause
abdominal pain is lengthy and, generally, it is neither
ethically nor financially possible to test every child for
all possibilities. Serious illnesses can sometimes explain
recurrent stomachaches and it is important to rule these
When RAP persists into adulthood, these patients
are most likely to develop IBS. There are striking
similarities between adulthood IBS and childhood RAP
in terms of prevalence, course, medical and psychiatric
co-morbidity, family medical and psychiatric history,
and stressful life events. There is data to suggest that
the prognosis is worse for children who have a parent
who suffers from recurrent pain and for children who
experience more negative life events. Therefore,
although it is true that some children will eventually
grow out of their stomachaches, there is a good chance
that abdominal or other somatic symptoms will reoccur
later in life.
4
bodies of children with RAP work somewhat differently.
This etiological model has been adapted largely from
research findings on adulthood IBS. As discussed earlier,
childhood RAP has many similarities with adulthood
IBS and many young RAP patients will have or develop
abdominal pain in their adult life. RAP is therefore often
seen as a precursor to adulthood IBS and identical
etiological mechanisms have been suggested. It is
important to realize, however, that few studies to date
have focused on etiological mechanisms of childhood
RAP compared to the extensive literature on adult IBS,
and findings have not always been identical.
It has been suggested that the Autonomic Nervous
System (ANS) is disrupted in RAP. The ANS consists of
neurons that run between the central nervous system
(e.g., the brain) and various internal organs, such as
the bowels and stomach. The ANS is responsible for
monitoring conditions in the internal environment
and bringing about appropriate changes in them.
For example, after eating, the ANS acts to ensure the
stomach and bowel contract to move the food through
the digestive tract. This happens largely involuntary,
although we do have some control over our bowels as
is shown by people practicing yoga or under hypnosis.
It has been suggested that the ANS in RAP is weak -- it
does not adapt to changes as effectively as in healthy
children. For example, after stimulation of the rectum,
RAP patients show slower recovery than children who
do not suffer from RAP.
A second mechanism that could explain RAP is
disruptions in motility (the speed with which food
moves through the digestive system). In many cases,
RAP is associated with either diarrhea or constipation.
This seems to suggest that food is either moving too
quickly or too slowly through the bowels and that this
motility problem could account for the pain. Some
studies have observed increased transit time in RAP
patients, but these findings have not been found in all
studies. Furthermore, adding fiber to the diet to slow
transit time has been found to benefit only a subgroup
of RAP patients.
Lately, visceral hypersensitivity has received
considerable attention as one of the major pathways that
causes RAP symptoms. Visceral hypersensitivity means
that nerves in the gut are very sensitive: RAP patients
feel pain in areas of the GI tract much more easily.
Because of this heightened sensitivity, RAP children
perceive 'normal' gastrointestinal events -- such as
small increases in motility or gas -- as painful.
There is convincing evidence of visceral hypersensitivity
in many adult IBS patients and it has been reported in
children with RAP, as well. This abnormal perception of
pain (low pain threshold) can be due to changes in both
the central (brain) and enteric (gut) nervous system.
Nerves in the gut can become overly sensitive and start
reacting to events that would otherwise be ignored. The
brain, on the other hand, can overreact by not inhibiting
as much information coming from the gut as usual,
thereby enabling more pain stimuli to pass through
into our awareness. Psychological distress can augment
these processes.
It should be emphasized that there might be different
etiologies explaining RAP. In some children abdominal
pain might be caused by disruptions in the ANS, while
for others the pain is due to an increase in motility or
visceral hypersensitivity, and for a third group the pain
may be largely psychogenic. It is very likely that in most
RAP patients multiple mechanisms can be identified
that influence each other. For example, frequent severe
pain due to increased motility may eventually lead to
hypersensitivity for motility which, in turn, generates
more pain due to heightened sensitivity to changes in
motility.
What about stress?
Many parents, children and physicians understand that
stress can exacerbate the pain. However, most studies
so far have failed to find a clear relationship between
major stressors (such as death or illness in the family, a
divorce, or a move) and the occurrence of RAP. It might
be possible that minor chronic stresses or daily hassles
-- such as having to wait in line at the store, quarrels
with siblings, constantly stopping for bathroom visits,
or vigilantly monitoring what one's eating -- may be
far more significant than the stress of major life events.
Unfortunately, there is still little research on the effects
of minor chronic stress.
Effectiveness in coping may be even more important in
explaining RAP than exposure to stress. When a child is
an effective coper, even high levels of stress might not
affect him or her very much. By contrast, an ineffective
coper is likely to become distressed when faced with
only minor setbacks in life. Coping with abdominal
pain and other stresses is often difficult for children
who suffer from RAP. Many RAP children use avoidance
strategies such as denial, avoiding thinking about it and
wishful thinking which, in turn, can result in elevated
levels of pain, somatic symptoms and distress. By
contrast, effectively adapting to (coping with) the pain
by regulating attention and cognitions (e.g., distraction,
acceptance of the pain or positive thinking) are
associated with less pain, fewer somatic symptoms and
Frequent stomachaches in children: a reason for concern? 5
less distress. Acting directly on the pain in an attempt to
change the environment or one's emotions (e.g., taking
medications, visiting a physician, reducing stress in
one's life) can be somewhat helpful, but these actions
do not appear to influence the pain very much.
Are non-GI symptoms related to RAP?
Children with RAP can present with a multitude of
other unexplained symptoms (co-morbidity), and
the physician may wonder if these are related to the
stomachaches. Co-morbid symptoms are important
since they may be indicative of: (1) psychological
problems that could either drive the GI symptoms or
be a consequence of coping with multiple pains, or
(2) more severe or longer duration of pain which can
trigger pain in other areas. Relatively little is known
about co-morbid somatic symptoms in RAP. About
half the children who report stomach pain indicate
more than one pain location. Multiple pain sites are
more commonly reported by girls than boys, and they
increase with age. The most common combination is
headache and abdominal pain and is reported in 25%
of cases with two sites of chronic pain.
In a study of RAP patients consulting a physician, the
number of co-morbid symptoms was found to increase
with the duration of RAP. In other words, one pain might
initiate other pain. But, it could also be possible that
only those patients who have multiple symptoms are
seen by a doctor over a longer period of time. Another
study did not find a relationship between the duration
of stomachaches and the occurrence of other symptoms
during a three-month follow-up of patients. However,
three months might have been too short a period of
time to see an effect. More research into associated
symptoms, who is at increased risk, and what is causing
the co-morbidity is needed.
Do more severe symptoms result in more
disability?
RAP has a large impact on suffering, health care costs
and functional disability. School absences are one of
the most common and obvious effects of RAP, and often
one of the first goals in therapy is to resume school
attendance. The RAP child who misses school also tends
to use more health care services. Health care resource
use is particularly high among RAP patients, but not all
children who suffer from RAP consult a doctor or miss
school. Currently, there is little research-based insight
into the characteristics of the child who is most likely to
miss school and consult a physician for stomachaches.
In a study by Hyams and colleagues, only 9% to10% of
middle and high school students with RAP reported they
had seen a doctor for abdominal pain within the last
year. But, students who did visit a doctor for abdominal
pain reported increased pain severity, frequency and
duration and more disruption of their lives. In a study
by Venepalli and colleagues, health care consulting and
school attendance of middle school children could not
be predicted by pain intensity or psychosocial distress
of either the mother or the child. Identification of children
who show high levels of functional disability is important,
because this would allow for targeting (preventive)
interventions, determining cost-effectiveness of care,
and preventing poor academic performance due to
school absences.
Are the parents to blame?
Physicians confronted with an anxious parent of a child
with RAP often feel these parents play a major role in
the maintenance and exacerbation of the symptoms.
Parents for RAP children, on the other hand, feel they
have no control over the situation and do not appreciate
being 'blamed' for their child's symptoms. It is important
to understand that a disorder seldom affects only the
patient. People around the person in pain are affected,
as well -- they can be stressed about the pain and its
meaning. In fact, many parents of children who suffer
from abdominal pain show increased levels of anxiety
and somatization themselves. This is a normal reaction
and does not imply that parents cause RAP.
However, parental beliefs, stress, and coping strategies
are of great influence on the child's pain perception
of pain. Children are still developing their coping
repertoires and look to adults for guidance about
when to get anxious or worried and how to deal with
symptoms. When a child is sick, in pain or discomfort,
parents have the difficult task of interpreting the
seriousness of the symptoms and deciding how to take
action. Any parental action or reaction will influence
how their children approach future illness and health.
How can a doctor help a child who suffers from
RAP?
Standard medical care for RAP consists of (1) limited
medical tests to rule out organic diseases, (2)
acknowledgment that the pain is real, (3) reassurance
that there is no illness causing the pain, and (4) advice
on how to cope with the symptoms. Parents and children
need to be partners with their physician in their health
and health care. Since most patients visit a physician in
search of a 'cure,' it is important for physicians to explain
that RAP is a chronic condition and that returning to
normal life as much as possible is the goal, rather than
complete pain relief. Medications can be given to treat
accompanying symptoms, such as constipation.
6 Frequent stomachaches in children: a reason for concern?
Many RAP patients may come to the doctor's office with
questions about diet. In fact, most of them will have
changed their eating behavior before seeing a doctor.
They may propose that food sensitivities, unhealthy
diets or dysfunctional eating patterns are possible
causes of the symptoms. At this time, there is only
limited data on the effects of diet on RAP symptoms.
The most extensively studied are the influence of
lactose malabsorption and lack of sufficient fiber in the
diet. Many parents will have placed their children on
a lactose-free diet, but the majority of patients do not
report benefits from this dietary restriction. Even lactoseintolerant
children do not necessarily see a significant
improvement in their RAP symptoms, suggesting that
lactose intolerance might be an additional dysfunction
the child is dealing with but it is not a major cause for
the stomachaches. As mentioned above, fiber therapy
can be helpful in some cases, but the currently limited
research data is conflicting with regard to its benefit.
Nevertheless, some suggest that because of its low cost
and low risk, it might be worthwhile to try high fiber
therapy in children presenting with RAP.
Although standard medical care can result in significant
improvements, many RAP patients need additional
therapy. Psychological therapies such as Cognitive
Behavioral Therapy (CBT) have been found to be
effective in treating RAP. CBT teaches children and/or
their parents to change unhelpful thoughts about the
disorder and learn effective coping skills, and it is often
combined with relaxation exercises. CBT has been shown
to produce significant improvements in pain, health care
utilization and school attendance. Unfortunately, these
therapies are not available to a majority of the RAP
patients. They require multiple meetings with a highly
trained therapist, insurance often does not necessarily
cover these costs, and most physician offices lack the
time and resources to implement such a program. There
is a need for effective psychological treatments for RAP
that are more accessible.
There is no quick fix for RAP and the road to recovery can
be bumpy and challenging for all parties. Patients and
their families may feel misunderstood and discouraged
by relapses. Physicians might feel they are not able to
convey their message to the family or lack the time to
give adequate coping advice. Although RAP is a very
challenging disorder, there are many ways in which
children, their parents and physicians can help to ease
the pain. No one approach will work in every child, but
the right combination of understanding the disorder
and its causes, medications, reduction of stress, changes
in eating and bowel movement patterns, coping advice,
and encouragement to fully participate in school and
social life can be of great benefit in managing, reducing
and controlling the pain. For many children, the care and
encouragement of a good physician will be sufficient to
take control over the symptoms.
However, for children needing additional care, it can
be challenging to find the right therapist or therapies.
This gap is recognized and more research is being
done in developing behavioral interventions. For
example, the UNC Center for Functional GI & Motility
Disorders is currently partnering with Dr. Rona Levy at
the University of Washington to test a short Cognitive
Behavioral Therapy for RAP in which both the children
and parents are involved. At UNC, we are also in the
process of developing a hypnosis program for RAP that
can be used by any health care professionals without
extensive training, making it more widely available to
many patients. Some pediatric gastroenterologists are
already teaming up with therapists who have specialized
in pediatric GI disorders.
In sum, the most important intervention for children
who suffer from recurrent abdominal pain is to reassure
them that we understand their pain is real but also that it
can be managed with appropriate medical care and/or
psychological therapy.
Selected reading (a complete reference list can be obtained from the
author)
Apley J, Naish N. Recurrent abdominal pain: A field study of 1000
school children with recurrent abdominal pain. Archives of Diseases
of Childhood 1958;46:337-340.
Scharff L. Recurrent abdominal pain in children: a review of
psychological factors and treatment. Clin Psychol Rev 1997;17:145-
166.
Christensen MF, Mortensen O. Long-term prognosis in children with
recurrent abdominal pain. Arch Dis Child 1975;50:110-114.
Hyams JS, Burke G, Davis PM, Rzepski B, Andrulonis PA. Abdominal
pain and irritable bowel syndrome in adolescents: a communitybased
study. J Pediatr 1996;129:220-226.
Venepalli N, Van Tilburg MAL, Whitehead WE. Recurrent Abdominal
Pain (RAP): The relationship between illness behaviors and health
services consulting? American Journal of Gastroenterology
2004;126:A372.
Walker LS, Greene JW. Children with recurrent abdominal pain and
their parents: More somatic complaints, anxiety, and depression than
other families? Journal of Pediatric Psychology 1989;14:231-243.
Walker LS, Garber J, Greeene JW. Psychosocial correlates of recurrent
childhood pain: A comparison of pediatric patients with Recurrent
Abdominal Pain, organic illness and psychiatric disorders. Journal
of Abnormal Psychology 1993;102:248-258.
Walker LS, Claar RL, Garber J. Social consequences of children's
pain: when do they encourage symptom maintenance? J Pediatr
Psychol 2002;27:689-698.








7 Frequent stomachaches in children: a reason for concern?


--------------------
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Re: 11 year old daughter been in pain every night for a year! new
      #243946 - 02/03/06 01:32 PM
shawneric

Reged: 01/30/03
Posts: 1738
Loc: Oregon

here is another

with permission

Parent's Thoughts and Worries about Recurrent Abdominal Pain
Miranda van Tilburg, PhD and William E. Whitehead, PhD
UNC Center for Functional GI & Motility Disorders
Abdominal pain is common in children and adults alike. As many as 9 to 25% of schoolaged
children suffer from recurring episodes of moderate to severe abdominal pain (RAP)(1).
In addition to the distress that is associated with the anticipation of pain or actual pain,
increased school absence is a significant worry in these children. Spontaneous recovery is
common, but many children continue to suffer even into adulthood(2-4). Despite the risk for
lifetime suffering and the effects on academic and social functioning, RAP has received
relatively little attention in the medical literature in comparison to the adult functional bowel
disorders.
Children, especially at younger ages, are still developing their coping skills and are,
therefore, often ill-equipped to deal with functional abdominal pain. Parents – as the major
caregivers -- are confronted with the difficult tasks of relieving their child's suffering and
teaching better coping skills. Considering the irregularity and uncontrollability of functional
abdominal pain, coping with its occurrence is a daunting task that even adults may struggle
with. Because of the desire of any parent to ease their child's pain, it is understandable that
many parents feel very frustrated and incapable of dealing with their child's stomachaches.
Nevertheless, some parents seem to be doing better than others. Some families feel less
need for treatment and diagnosis by a physician than others do, and not every child that
suffers from recurrent abdominal pain misses many days out of school. One could argue that
patients with more severe pain have an increased likelihood of seeing a doctor or missing
school, but this is not necessarily the case. In adults suffering from Irritable Bowel Syndrome
(IBS), consulting a doctor is associated with more psychological distress independent of
symptom severity(5), and in high school students with RAP, more distress caused by pain was
associated with seeing a physician(6).
In younger children, the decision to visit a doctor or stay out of school is usually made by the
parent rather than the child. Thus, parental thoughts and worries about their child's illness
are of greater significance in these decisions than the child's cognitions. In fact, we have
found that parents who have IBS themselves are far more likely to take their child to a doctor
for gastrointestinal symptoms than parents who do not suffer from IBS(7).
Research has shown that only a small proportion of people experiencing symptoms consult a
doctor for them(8). Reasons for going to a doctor are "symptoms getting worse' or the fear
that symptoms are caused by internal physical causes. High users of medical care perceive
themselves as ill and vulnerable to illness, and believe their physician can be helpful. Low
users, on the other hand, feel that they are more able to treat themselves(8). There are no
data on the specific parental fears and worries associated with RAP, but concern about a
disease is most likely an important factor. In a study among 98 mothers of children with
unexplained abdominal pain, 65.3% believed physical factors were causing their children's
symptoms(9). Fear of a severe illness is also a common health belief in adult patients with
IBS(10,11).
Worry about an illness might be common, but it is unlikely to be the only belief that
contributes to consulting behavior and school absences. To learn more about these beliefs,
we conducted in-depth interviews with 15 parents of children with RAP (age 5 to 13 years)
visiting GI clinics(12). From these interviews, a model of parental cognitions was developed
(Figure 1) that includes the following categories:
(a) Pain concerns, i.e., worrying about pain and the consequences of the pain (such as,
missing school).
(b) Pain threshold, i.e., children were NOT perceived as complaining very easily of pain
or faking pain.
(c) Thoughts about physicians, i.e., parents reported a desire for relief and care, plus
frustration with doctors and reluctance to give medications.
(d) Thoughts about coping, i.e. parents felt unable to cope or decide what to do and
were afraid to ignore the pain.
(e) Exacerbating factors: these included stress, eating habits and modeling (similarity to
parents); and
(f) Fear of disease, i.e., worrying that the child has cancer or a structural abnormality.
Parental cognitions about RAP revolved around the fear of disease and a desire for
diagnosis and effective treatment. Many parents felt their children did not complain
easily and they felt helpless to know how to deal with the child's suffering.
Having identified in a preliminary way the types of worries parents of children with RAP
have, it was important to study which of these worries are associated with seeing a physician
and with school absences. A 51-item questionnaire was developed on the basis of the indepth
interviews: the Parental Worry of RAP Questionnaire (PWRQ)(13). Parents of children
with RAP were recruited online through the UNC Center for Functional GI & Motility
Disorders web page.
The PWRQ was completed by 233 parents (child age range 3-18 years old). Internal
consistency of the entire scale (Cronbach's = 0.83) as well as the subscales was moderate to
good (.62 d• d".87), which means that the items on the scale tend to measure the same
thing. All questions were easily understood, as shown by the fact that mean subject-rated
understandability on a 5-point scale was between 4.22 and 4.87.
Cognitions of the 167 parents who consulted a doctor for their child's stomachaches differed
significantly from the 66 parents who did not consult. Consulting parents worried more
about their child's pain, were more likely to think their child might be suffering from a
disease, and had a larger need for diagnosis and treatment by doctors. There was also a
trend for non-consulting parents to feel more capable of coping with their child's
stomachaches. Pearson correlations revealed that the longer the child suffered, the more
likely the parents were to worry about pain, feared a disease, felt their child had a high
complaint threshold, and felt it was less likely the child faked pain. In addition, increasing
child age was associated with more pain worries, feeling better able to cope, and thinking
that the child does not complain easily or fakes the pain, and more influence of exacerbating
factors (such as stress) was acknowledged.
The questionnaire appeared to work well to identify parental worries and concerns about
abdominal pain in the first study. However, concerns that there could have been something
unusual about the parents who participated through the web site, we then carried out a new
study in a different group of families who were identified by surveying fourth grade students
in three school districts in North Carolina. One-hundred and seventeen mothers completed
the PWRQ. Internal consistency of the whole scale (Cronbach's = 0.95) as well as the
subscales was moderate to good (.60 d• d".94). Parents were divided into three groups:
1) Healthy controls included 36 families in which the child did not suffer from
stomachaches in the past three months,
2) RAP non-consulters consisted of 40 families with children suffering from
stomachaches at least three days out of the past three months, but who did not
consult a doctor for the stomachaches, and
3) RAP consulters were 41 families where the child suffered from stomachaches at
least threedays out of the past three months and consulted a doctor for the
stomachaches. Significant differences between groups were found on most
subscales.
In comparison to the healthy control group, parents of RAP children worried more about
pain, felt their child complained less easily or was less likely to fake pain, felt less able to
cope with stomachaches, and cited more exacerbating factors like stress. Consulters
differed from non-consulters on pain worries, which were higher in the consulters.
Furthermore, healthy controls and RAP non-consulters felt less need for diagnosis, car, and
relief than RAP consulters. Interestingly, the three groups did not differ on the fear of
disease subscale.
We concluded that the PWRQ has very good internal consistency in both studies and can
validly distinguish between consulting and non-consulting families. The previously reported
subscales were developed based on our theory of how the questions should be grouped
together, rather than examining how people actually answer the questions. Therefore, the
scales may not necessarily include the items that best discriminate consulters from nonconsulters.
We performed further statistical analyses (stepwise discriminant analyses) on
the combined data of study 2 and 3 to see which individual items separated the consulters
from the non-consulters. Table 1 shows the four items that contributed significantly to the
discrimination of consulters from non-consulters. Based on these four items, 76.6% of the
non-consulting groups could be correctly classified and 77.5% of the consulting group.
TABLE 1
ITEMS THAT DISTINGUISH CONSULTERS FROM NON-CONSULTERS
1) I am frustrated with my child's doctor for failing to tell me what is wrong with my
child
2) I would like doctors to suggest a treatment
3) I worry about my child missing things because of his/her stomachaches
4) It is okay to dismiss my child's stomachaches
To confirm these results, we performed similar analyses predicting school absences for
stomachaches. School absence data was only collected in the last study. Healthy controls
were not included in this analysis. In the RAP groups, 56% reported that their child missed
school one day or less in the last three months, and 35% reported that their child missed
more than one day because of stomachaches. In a stepwise discriminant analysis, school
absence was predicted by 9 items which correctly classified 84.2% of the children missing
one day or less of school and 76.5% of those who missed more than one day of school.
TABLE 2
ITEMS DISTINGUISHING CHILDREN WITH >1 DAY OF SCHOOL ABSENCE IN LAST
3 MONTHS
1) My child complains about stomachaches easily
2) I am afraid to ignore things that should be checked by a doctor
3) I worry that my child will have stomachaches for the rest of his/her life
4) I worry what to do when my child has stomachaches
5) I worry that my doctor does not understand my child's stomachaches
6) I believe my child exaggerates or fakes stomachaches
7) I feel frustrated with my child's doctor for suggesting that my child is faking the
stomachaches
8) I believe a lack of exercise might be related to my child's stomachaches
9) I worry about my child's stomachaches affecting his/her school performances.
These data indicate that it might be possible to shorten the questionnaire considerably. The
current studies are limited by size, which means that we could obtain somewhat different
results if we studied larger numbers of families or families recruited in a different way.
Therefore, we need to confirm our findings in a larger sample before deciding to shorten
the 51-items questionnaire to a smaller scale that can be reliably used as a screening tool.
Ultimately, our goal is to understand the fears and worries of parents that are associated with
consulting a doctor for RAP and with keeping the child out of school. This will give us
important information on the types of cognitions that we need to address in order to help
parents cope more effectively with their child's abdominal pain as well as to prevent lifelong
disabling stomach aches in children.
We would like to thank all the parents that have taken the time to participate in our studies
and give us very valuable information on their thoughts and feelings about RAP. Readers
interested in participating and completing the questionnaire should go to our Center's
website (www.med.unc.edu/ibs) and click 'Research Subjects Needed".
References:
(1) Scharff L. Recurrent abdominal pain in children: a review of psychological factors and treatment.
Clin Psychol Rev. 1997;17:145-66.
(2) Magni G, Pierri M, Donzelli F. Recurrent abdominal pain in children: a long term follow-up.
Eur J Pediatr. 1987;146:72-74.
(3) Stickler GB, Murphy DB. Recurrent abdominal pain. Am J Dis Child. 1979;133:486-89.
(4) Apley J, Hale B. Children with recurrent abdominal pain: how do they grow up? Br Med J. 1973;3:7-
9.
(5) Burke P, Elliott M, Fleissner R. Irritable bowel syndrome and recurrent abdominal pain. A
comparative review.
Psychosomatics. 1999;40:277-85.
(6) Hyams JS, Burke G, Davis PM, Rzepski B, Andrulonis PA. Abdominal pain and irritable bowel
syndrome in adolescents: a community-based study. J Pediatr. 1996;129:220-226.
(7) Levy RL, Whitehead WE, Von Korff MR, Feld AD. Intergenerational transmission of gastrointestinal
illness behavior.
Am J Gastroenterol. 2000;95:451-56.
(8) Campbell S, Roland MO. Why do people consult a doctor? Fam Practice. 1996;13:75-83.
(9) Claar RL, Walker LS. Maternal attributions for the causes and remedies of their children's
abdominal pain.
J Pediatr Psychol. 1999;24:345-54.
(10) Drossman DA, Mckee DC, Sandler RS, Mitchell CM, Cramer EM, Lowman BC et al. Psychosocial
factors in the irritable bowel syndrome. A multivariate study of patients and nonpatients with
irritable bowel syndrome. Gastroenterol. 1988;95:701-8.
(11) Gomborone J, Dewsnap P, Libby G, Farthing MJ. Abnormal illness attitudes in patients with Irritable
Bowel Syndrome.
J Psychosom Res. 1995;39:227-30.
(12) van Tilburg MAL, Venepalli NK, Freeman KL, Whitehead W, Ulshen M, Levy RL. Parents' fears and
worries about RAP. Gastroenterol. 2003;124:A-528.
(13) Whitehead WE, van Tilburg MAL, Palsson O. Development of the Parental Worry of RAP
Questionnaire. Am J Gastroenterol. 2003;98:S273.

--------------------
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Re: Sorry she's suffering new
      #243982 - 02/03/06 03:23 PM
Augie

Reged: 10/27/04
Posts: 5807
Loc: Illinois

Can I ask what type of GF bread you buy that has flax? I don't think that would be safe to use without eating some SF beforehand, which is my problem. I like to use bread as my SF...so how would I do the sandwich on flax bread?

As far as me having to be GF...I tried eating GF for a year and it didn't help. Only made me go from D to C...but the pain and constipation and cramps and gas were still there. I've talked to a few GI docs, and none of them think I need to eat gluten free. One told me to do whatever I wanted and one said I must eat gluten free...but the other 3 told me that there is no reason to eat GF. I have gone back and forth with this dilemma for some time now. I do not have the celiac gene...so I know I don't have celiac disease. But the gluten or wheat intolerance remains a mystery.

--------------------
~ Beth
Constipation, pain prodominent,cramps, spasms and bloat!

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Re: Sorry she's suffering new
      #244042 - 02/03/06 07:04 PM
PaulineNZ

Reged: 02/02/06
Posts: 26


Hi there, it is a brand of gluten free bread called Venerdi, available here in NZ. Yes it is predominantly brown rice, flaxseed etc. You are probably right it is too high in insoluble fibre, but like you said the white rice bread just bungs her up shockingly. It's a dilema. The ibs thing is hard enough to deal with, without all the intolerances. I will rethink what I have been and will be doing, thanks for pointing this out.
Pauline

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Re: Sorry she's suffering new
      #244066 - 02/03/06 10:39 PM
shawneric

Reged: 01/30/03
Posts: 1738
Loc: Oregon

Carbohydrates break down in the gut into tryptofan and then to serotonin and serotonin is a real problem in IBS.

You can also have a problem with wheat and not have full blown celiac.

also did you see this by any chance?


IBS

Bette Bischoff
Background
Prior to medical school when I was a practicing dietician, I had the privilege of
working with many patients who had irritable bowel syndrome (IBS). I found
the subject of nutritional intervention related to IBS to be very rewarding and
often challenging because there is no "perfect" diet for this syndrome. In light
of the different etiologies potentially at work in each patient with IBS, nutrition
therapy should be carefully and thoughtfully tailored to each person. This can
be likened to times past when a cobbler hand-made each person's shoes. Since
each IBS patient can differ dramatically, careful documentation of exacerbating
factors listed in the IBS diary maintained by patients may yield important clues
to an effective approach to diet and nutrition.
One of the issues is that patients with IBS may have a lower threshold to stressors
compared to people without IBS. An example of this is patients with carbohydrate
intolerances as well as a diagnosis of IBS, who experience an even greater
response to problematic carbohydrates such as lactose or fructose as compared
to someone who does not have IBS. Another important issue is being alert to
unnecessary food aversions. Individuals may experience abdominal discomfort
and associate this with eating a certain food, so they decide to avoid eating that
particular item, even for life. This may lead to excessive food restriction and the
potential for a full-blown eating disorder. What must be kept in mind is that IBS
is characterized by increased gut and central nervous system (CNS) reactivity
to stressors, and that these stressors can include any dietary excesses as well as chain fatty acids. Good sources of soluble fiber
include oats, psyllium seed, pectin, and guar gum.
Insoluble fibers consist of the outer husk of the
grain and generally tend to decrease transit time.
The national nutrition guidelines recommend an
intake of 20-30 grams of fiber per day, yet the
typical American consumes less than 10 grams of
fiber per day. Fiber intake should be increased
gradually in IBS patients with constipation,
with an emphasis on including adequate water
consumption (5).
The overall fiber picture can become a bit more
confusing than a simple recommendation to
increase fiber intake. Insoluble fiber may have a
high content of cereal bran, which is the outer husk
of the grain. A recent paper investigated the effects
of adding or omitting bran and found conflicting
results. It appears the primary care provider may
see a greater benefit from patients adding fiber
to their diet than the gastroenterologist, possibly
because primary care physicians see mostly
milder forms of IBS and gastroenterologists see
patients with more severe IBS. Whorwell studied
100 patients in a primary care setting that were
encouraged to increase cereal bran. The results
in the primary care provider scenario produced
a "mixed" picture -- 22% reported worsening
of IBS symptoms while 27% who showed
improvement. This may be the result of visceral
hypersensitivity triggered by bran consumption.
Whorwell recommends that patients identified
with IBS and visceral hypersensitivity should be
counseled to exclude cereal (insoluble) fibers
for a brief period to see if symptoms improve,
especially if this is within the care of a specialty
clinic. Another study found that cereal fibers were
associated with a 55% worsening of symptoms (6,
7). Thus, if the goal is to increase transit rate and
increase the frequency of bowel movements (for
IBS-C), one could add insoluble fiber to the diet;
however, since IBS is also associated with visceral
hypersensitivity, if discomfort/pain or bloating
occurs, the patient may need to switch solely to
soluble fiber.
Caffeine is a gastrointestinal stimulant. For IBS
patients with diarrhea, a period of caffeine
sensitivities to particular foods that are unique to
the individual rather than to the IBS condition.
This article reviews some of the literature in this
area and then presents some treatment options
to be considered in the nutritional management
of IBS. It should be noted that the research and
peer-reviewed published literature regarding IBS
and diet is still very limited and, therefore, some
of the resources cited in this article will date back
several years.
Nutritional Factors Influencing Motility:
Fiber, Fat and Caffeine
IBS is the most common of the functional GI
disorder, affecting approximately 10-15% of the
US population (1). IBS is a multifactorial illness with
several different emerging pathophysiologies,
including disorders of motility, visceral
hypersensitivity, central processing dysfunctions,
psychological factors, and post-infectious
inflammation.
Fiber: A recent survey reported that close to
95% of general practitioners believe that fiber
deficiency is the main cause of IBS. In fact, the
most common dietary advice offered to patients
with IBS is for them to increase their intake of
fiber, primarily to address the constipation that
may be associated with IBS. However, since IBS
is also associated with visceral hypersensitivity,
luminal distension -- as might be caused by the
bacterial fermentation of insoluble fiber -- can
also produce discomfort (2).
Dietary fiber is a non- starch polysaccharide
derived from plant foods that are poorly digested
by human enzymes. A fiber-enriched diet can
relieve constipation, accelerate intestinal transit
time, and may reduce intracolonic pressure.
Furthermore, the intake of fiber is associated
with a reduction in the intraluminal concentration
of bile acids, which may reduce the contractile
activity of the colon (3, 4).
There are two types of fiber -- soluble and
insoluble. Soluble fiber is derived from fruits and
grains, and is fermented in the colon to form short


exclusion may prove beneficial. The total intake
of caffeine-containing beverages by many adults
and children often reaches levels that can induce
pharmacological effects. Evidence associating
caffeine with GI symptoms suffered by patients
with IBS is limited in the current literature, but one
study revealed that caffeinated coffee stimulated
colonic motor activity in a magnitude similar to
that of an entire meal and had a 60% stronger
effect than ingesting water (.
Dietary fat is also a potent modulator of gut
motor function. This macronutrient delays gastric
emptying time and accelerates small bowel
transit rates. Symptoms of bloating are commonly
reported after consuming a high-fat meal. Serra
et al. found that after an infusion of enteral fat,
the volume of retained gas increased from 298
to 505 ml (9, 10). For patients who need to limit
their fat intake, counting actual fat grams in the
diet can be an excellent way to identify high-fat
food sources. In general, IBS patients should aim
for only 40-50 grams of fat per day. If weight loss
becomes an issue with fat restriction, medium
chain triglycerides (MCT) are an excellent source
of calories. Unfortunately, MCT oils are expensive
and, due to taste issues, are generally not wellreceived
by patients.
Food Allergy, Hypersensitivity and
Intolerance
Although up to 45% of the population reports
adverse reactions to food, the actual prevalence
of immune-mediated food allergy is unknown.
Symptoms are more common in atopic individuals
who often have allergies to non-food antigens
as well, such as pollens, and in young children
who tend to outgrow an allergy. The role of food
allergy in IBS has not been studied well. Surveys
indicate that 40-70% of food-allergic patients
report GI symptoms including nausea, vomiting,
abdominal pain, bloating, and diarrhea. Stefanini
et al. conducted a 4-week multi-center study
comparing the efficacy of the mast cell stabilizing
agent sodium cromoglycate at 1500 mg per day
with an elimination diet, and 67% of the patients
reported improvement in their symptoms (11).
Attempts to "test" for food hypersensitivity in
IBS have largely focused on the classic food
allergy, which is based on the presence of IgE --
immunoglobulins of the "immediate type". These
antibodies attach to certain cells in the body
that release chemicals that cause anaphylaxis.
Present speculation in the literature suggests
that adverse reactions to food in patients with
IBS might be due to forms of immunological
mechanisms other than a dietary allergy, namely
IgG antibodies. These tend to have a delayed
response following exposure to a particular
antigen and have been implicated in some cases
of food hypersensitivity. IgG studies surfacing in
the IBS literature are promising, but the issue of
the validation of serum IgG testing is often raised.
Atkinson et al. observed significant improvement
in IBS symptoms in elimination diets using Elisa
IgG antibody testing. Their results suggest
that IgG antibodies may have a role in helping
patients identify candidate foods for elimination
(12). Collins et al. also found significant change
in patients receiving the IgG exclusion diet. The
foods that were most frequently associated with
elevated IgG levels were yeast, milk, eggs, wheat,
cashew nuts, peas, almonds, and barley. The
mechanism by which the IgG antibodies have a
detrimental effect is unclear, but most likely is
associated with low-grade inflammation (12,13).
For the most part, most patients with IBS do not
have immune-mediated allergies to food and,
more likely, have increased sensitivity to the direct
effects of food on digestive function including
increased food volume ingestion and the addition
of fats, caffeine, carbohydrates, alcohol, etc.
Food Intolerance and Exclusion Diets
Niec recently summarized the literature on clinical
trials using food elimination diets followed by
rechallenge. Of the seven studies included in their
review, positive response rates varied from 15 to 75
percent. A higher rate of response was correlated
with diarrhea-predominant IBS. Milk, wheat and
eggs were the most frequently implicated foods
(14). Although the principle of food elimination
or exclusion appears straightforward, it can be
very demanding for the patient. If the patient
appears hesitant or confused about food choices,
physician referral to a registered dietitian may be
helpful. With the exclusion of entire food groups,
such as dairy products, the risk of developing a
nutritional deficiency must be considered.
Carbohydrate Malabsorption
Carbohydrate intolerance can be seen in many


patients with IBS. Fructose, lactose and sorbitol
malabsorption are common among patients who
have IBS, and dietary restriction of these sugars
may improve symptoms (15,16). One study found
that 42% of IBS patients developed symptoms
from sorbitol-fructose mixtures compared to 3.5
% in the control group (1. This could be an
important factor when patients are consuming
large amounts of weight-loss products or have
diarrhea-predominant IBS.
Lactose malabsorption occurs when lactose, the
primary sugar in dairy products, is not completely
digested and absorbed in the small bowel. Lactase,
the enzyme required to hydrolyze lactose for
intestinal absorption, is found primarily in the tips
of the jejunum. When unabsorbed lactose reaches
the colon, colonic bacteria uses this substrate
for fermentation, producing gas and short chain
fatty acids. The unabsorbed lactose also affects
osmolality, causing water to be drawn into the
bowel and accelerating the intestinal transit
time. If lactose intolerance is suspected, it can be
confirmed with a hydrogen breath test. Lactose
intolerance appears to be dose dependant. This
means that many patients can tolerate small
amounts of dairy products throughout the day,
such as ˝ cup of milk, but not larger amounts.
Although it may seem obvious which foods
contain lactose, some sources may be difficult to
discern. Patients should look for hidden sources
in baked goods, salad dressings, and powdered
mixes. Labels with the following words contain
lactose: nonfat dry milk, milk powder, dry milk
solids, whey curds, and caseinate milk sugar.
Contrary to popular belief, acidophilus milk
does not have the lactose sugar digested and
is, therefore, a poor substitute for regular milk.
Soymilk and rice milk do not contain lactose and
are, therefore, good dairy substitutes. However,
these products are often low in calcium and
vitamin D. Hard cheeses and cultured yogurt
are usually acceptable alternatives. For patients
who do not tolerate lactose but want to consume
dairy products, supplemental lactase enzymes
are available. Several studies have shown that
patients with lactose intolerance have significantly
less calcium intake than those who tolerate
lactose. In one study, patients who were lactose
intolerant had a calcium intake of approximately
300 mg per day (1, which is only 20-40% of the
recommended calcium intake for adults. Patients
with lactose intolerance have also exhibited
decreased bone mass density (19). In light of the
potential for compromised calcium and vitamin D
intake, it would be prudent to evaluate all patients
with lactose intolerance for a calcium supplement
if needed.
Fructose is a hexose sugar that is highly utilized
in the western diet. In the past 20 years, there
has been a 10-fold increase due to its use in
highly processed food products. It is often used
as high fructose corn syrup in soda, fruit juices,
cookies, baked goods, jellies, and candy. Unlike
glucose, which is completely absorbed, fructose
absorption capacity is limited. Therefore, when
ingested in small quantities, dietary fructose
will probably not be an issue. However, when
consumed in larger amounts, fructose may serve
to osmotically draw fluid into the intestinal lumen.
This may cause distension of the small intestine
and produce symptoms such as abdominal pain,
bloating and discomfort. Furthermore, after
reaching the colon, unabsorbed fructose may
be fermented by colonic bacteria, producing
excessive gas (20).
Probiotics
Several studies now exist defining the potential
role of probiotics in IBS. These papers have
exhibited a great degree of variability, possibly
due to the use of different probiotic strains, their
ability to adhere and colonize in the GI tract,
and the number of colony-forming units actually
ingested by the individual. The probiotics most
often studied are lactobacillus, bidifobacterium,
and some non-pathogenic forms of e-coli. In a
recent study, bifidobacterium 35624 significantly
alleviated symptoms of abdominal pain and
discomfort, bloating, and distension. There was
also a normalization of IL-10/IL-12 ratios (this
skewed cytokine ratio may be indicative of a
proinflammatory Th-1 state). The bifidobacterium
used in this study is currently unavailable in the
US marketplace in the concentrations used in this
study (21,22).
Food products that are high in probiotics include
fermented milk, pourable yogurt, and yogurt with
live active cultures. Currently, there is no federal
agency in the US that routinely tests or "polices"
the market to ensure standardization and quality
of probiotic products. Independent tests have

revealed that up to 30% of probiotics on the
market are "laced" with reasonably adequate
live bacteria. One study used DNA extraction to
test five probiotic products at a local health food
store. The PCR analysis revealed that 2 of the 5
products did not contain the bifidobacterium
claimed on the label (23). I called a well-known
dairy in the Midwest several years ago. The
technician responsible for mixing the probiotic in
the yogurt explained that the bacteria are added
to a very large vat of product. The yogurt is then
packaged in individual cartons and there is no
final definitive measurement to ensure that the
amount of probiotic stated on the label is actually
in each individual container.
Putting It All Together
Due to the complex underlying pathophysiologies
in patients with IBS, nutritional intervention will
vary with each patient. The following general IBS
categories attempt to help "map" an approach
for dietary manipulation in the patient with IBS.
For individuals with diarrhea predominant IBS,
consider limiting nutrients that exacerbate GI
motility or intestinal secretion -- caffeine, fat
and some carbohydrates (fructose, lactose and
alcohol sugars). Probiotics can also be of benefit,
especially if post-infectious IBS or bacterial
overgrowth is suspected, or the patient has had
numerous antibiotic therapies in the past. If
constipation is the main issue, make sure the
patient has had an adequate trial of increased
insoluble fiber. This usually means that the
patient needs to count fiber grams and seek to
attain 20 grams of fiber per day. When visceral
hypersensitivity is suspected, ask the patient
to limit the amount of food eaten in one session
and instead to eat three small meals per day with
snacks. A low-fat diet and avoidance of insoluble
fiber may also be helpful for these patients.
Targeting nutritional intervention in the patient
with IBS can be challenging due to the many
different etiologies of this syndrome and the fact
that some patients have heightened responses to
different foods. A food diary kept by IBS patients
can be a particularly helpful way to ascertain which
foods may be problematic. It is recommended that
the clinician look for food "trends" in the journal,
with the goal of steering the patient away from
excessive food restriction behaviors.
References
Drossman DA, Camilleri M, Mayer EA, et al. AGA Technical Review on
Irritable Bowel Syndrome. Gastroenterology 2002;123(6):2108-2131.
Bijkerk CJ, de Wit NJ, Stalman WA, et al. Irritable Bowel Syndrome in
Primary Care: the Patient and Doctors Views on Symptoms, Etiology,
and Management. Can J Gastroenterology 2003;17(6):363-368.
Muller-Lissner SA. Effect of Wheat Bran on Weight of Stool and
Gastrointestinal Transit Time: A Meta Analysis. Br Med J 1988;296:615-
617.
Villaneva A, Dominguez-Munoz J, Mearin F. Update in the Therapeutic
Management of Irritable Bowel Syndrome. Dig Dis 2001;19:244-250.
Floch MH, Narayan R. Diet in Irritable Bowel Syndrome. J Clin
Gastroenterol 2002;35:S48.
Francis CY, Whorwell P. Bran and Irritable Bowel Syndrome: Time for
Reappraisal. Lancet 1994;344(8914):39-40.
Lea R, M Bch B, Whorwell P. The Role of Food Intolerance in Irritable
Bowel Syndrome. Gastroenterol Clin N Am 2005;34:247-255.
Rao S, Welcher K, Zimmerman B, et al. Is Coffee a Colonic Stimulant?
Eur J Gastroenterol Hepatol 1998;10:113-118.
Serra J, Salvioli B, Azpiroz F, et al. Lipid Induced Intestinal Gas Retention
in Irritable Bowel Syndrome. Gastroenterology 2002;123(3):700-706.
Jones VA, McLaughlin P, Shorthouse M, et al. Food Intolerance: a
Major Factor in the Pathogenesis of Irritable Bowel Syndrome. Lancet
1982;2(8308):1115-1117.
Stefanini GF, Saggioro A, Alvisi V, et al. Oral Cromolyn Sodium in
Comparison with Elimination Diet in Irritable Bowel Syndrome,
Diarrheic Type. Muti Center Study of 428 patients. Scand J Gastroenterol
1995;30(6):535-541.
Atkinson W, Sheldon T, Shaath N, et al. IgG Antibodies to Food: a Role in
Irritable Bowel syndrome. Gut 2004;53: 1459-1464.
Collins SM, Vallance B, Barabra G, et al. Putative Inflammatory and
Immunological Mechanisms in Functional Bowel Disorders. Bailleres
Best Pract Res Clin Gastroenterol 1999;13(3):429-436.
Niec AM, Frankum B, Talley NJ. Are Adverse Food Reactions Linked to
Irritable Bowel Syndrome? Am J Gastroenterol 1998;93(11):2184-2190.
Fernadez-Banares F, Esteve-Pardo M, de Leon R, et al. Sugar
Malabsorption in Functional Bowel Disease: Clinical Implications. Am J
Gastroenterol 1993;88(12): 2044-2050.
Nelis GF, Vermeeren MA, Jansen W. Role of Fructose-sorbitol
Malabsorption in the Irritable Bowel Syndrome. Gastroenterology 1990;
99(4):1016-1020.
Symons P, Jones MP, Kellow J. Symptom Provocation in Irritable Bowel
Syndrome. Effects of Differing Doses of Fructose-sorbitol. Scand J
Gastroenterol 1992;27:940-944.
Carroccio A, Montalto G, Cavera G, et al. Lactose Intolerance and Selfreported
Milk Intolerance: Relationship with Lactose Maldigestion
and Nutrient Intake. Lactase Deficiency Study Group J Am Coll Nutr
1998;17:631-636.
Di Stefano MD, Veneto G, Malservis S, et al. Lactose Malabsorption and
Intolerance and Peak Bone Mass. Gastroenterology 2002;122:1793-
1799.
Choi YK, Johlin F, Summers R, et al. Fructose Intolerance: An Underrecognized
Problem. Am J Gastroenterol 2003;98:1348-1353.
O'Sullivan MA, O'Morain CA. Bacterial Supplementation in the Irritable
Bowel Syndrome. A Randomized Double-blind Placebo Controlled
Crossover Study. Dig Liver Dis 2000;32(4):294-301.
Mahoney L, McCarthy J, Kelly P, et al. Lactobacillus and Bifidobacterium
in Irritable Bowel Syndrome: Symptom Responses and Relationship to
Cytokine Profiles. Gastroenterology 2005; 128(3):541-551.
Drisko J, Bischoff B, Giles C, et al. Evaluation of Five Probiotic Products
for Label Claims by DNA Extraction and Polymerase Chain Reaction
Analysis. Digestive Disease and Sciences 2005;50: 1113-1117.


http://www.med.unc.edu/wrkunits/2depts/medicine/fgidc/collateral/digest/fall_2005_digest.pdf



--------------------
My website on IBS is www.ibshealth.com


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Pauline new
      #244094 - 02/04/06 07:57 AM
Augie

Reged: 10/27/04
Posts: 5807
Loc: Illinois

How do you test for wheat intolerance and gluten intolerance separately? So that you can determine if it's all gluten that's a problem...or just the wheat?

--------------------
~ Beth
Constipation, pain prodominent,cramps, spasms and bloat!

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Re: 11 year old daughter been in pain every night for a year! new
      #244096 - 02/04/06 08:00 AM
PaulineNZ

Reged: 02/02/06
Posts: 26


Thanks again for posting great info seaneric. There is a lot for me to 'digest'. I will read fully over the weekend.
Thanks again, Pauline

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Re: Pauline new
      #244101 - 02/04/06 08:14 AM
PaulineNZ

Reged: 02/02/06
Posts: 26


Hi there, gluten is the protein in wheat, barley, rye.
You can have IgG gliadin tests done to see if you are sensitive to gluten. There is a specialist here in NZ, do a search for Dr Rodney Ford, Christchurch, NZ. He is a paediatric gastroenterologist who has helped us find out about the gluten intolerance - he is doing ground breaking research in this area and also his findings are medically proven but they are not medically accepted in this country yet. He lives many hundreds of miles away so going to him for consultations was not an option and he had helped us all he could via email.

If you are not a coeliac but have a problem eating normal bread etc, go for the wheat free bread i.e. rice and rye etc, eat barley etc, if there is no problem then maybe your problem is with the wheat rather than the gluten. You may also be able to eat oats, oats are questionable as to whether they contain gluten, the main reason they are not included in a gluten free diet is because they can often come into contact with wheat at harvesting or production time and thus causes contamination with gluten.

The gene testing our specialist is doing supposedly shows whether or not she has antibodies (I think this is how it works, but we visit him again on Tuesday, so I should know more then). If she has got the antibodies it means it is
not the gluten that is causing the problem but probably the wheat.

Does any of this make sense? I hope so.

Take care
Pauline

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Re: 11 year old daughter been in pain every night for a year! new
      #244103 - 02/04/06 08:23 AM
PaulineNZ

Reged: 02/02/06
Posts: 26


Hi Shawneric, she has had routine bloods - all clear. Specialist called for extra tests which we will get the results of next Tuesday. She has had repeat faecal tests for parasites - clear. Bacteria (faeces) we will get the results on Tuesday.
She has had a barium swallow and follow - thru - this was clear, showed not inflamation - radiologist said this basically ruled out crohns disease. Thanks goodness.

Thanks for taking your time it is appreciated.
Pauline

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Confused new
      #244105 - 02/04/06 08:36 AM
Augie

Reged: 10/27/04
Posts: 5807
Loc: Illinois

Quote:

If she has got the antibodies it means it is
not the gluten that is causing the problem but probably the wheat




Doesn't the positive antibodies mean it is gluten that is the problem? Or were you talking about the wheat antibodies? In the states, here, I don't think they have separate tests for gluten antibodies and wheat antibodies.

That is marvelous that you have found this doctor for your daughter. what is her name? How is she doing?

--------------------
~ Beth
Constipation, pain prodominent,cramps, spasms and bloat!

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Re: Confused new
      #244107 - 02/04/06 08:44 AM
PaulineNZ

Reged: 02/02/06
Posts: 26


Hi there, oops yes I knew I would put the wrong thing LOL
I will know more on Tuesday - hopefully.

Gabrielle was very sore last night - finally groaned herself off to sleep poor kid at about 10 pm.

Thanks
Pauline

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Re: Confused new
      #244111 - 02/04/06 08:49 AM
Augie

Reged: 10/27/04
Posts: 5807
Loc: Illinois

Well, I'm still not sure what you mean...but please let us know how the doctor's appointment goes on Tuesday.

What a pretty name! My heart aches for this childd. It's one thing to be in pain and be an adult...but not fair that a 12 year old should have to be dealing with this already. I hope you find some answers. Heather had trouble starting at age 9 and look at how wonderful she is doing now!

--------------------
~ Beth
Constipation, pain prodominent,cramps, spasms and bloat!

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Re: Confused new
      #244115 - 02/04/06 08:54 AM
PaulineNZ

Reged: 02/02/06
Posts: 26


Sorry, I meant I had written the wrong thing. I should have written if she has the antibodies then it is gluten,instead I wrote the opposite by mistake. Sorry to have caused you such confusion.

This started just after she turned ten and she has just turned 11. I am going to try and see if I can order Heather's books I think they will be very beneficial.

Thanks for caring and listening to my sharing.
Blessings
Pauline

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Re: Confused new
      #244162 - 02/04/06 02:25 PM
Honey mix

Reged: 11/16/05
Posts: 285
Loc: USA wish it was England

I"m 12 I've had IBS sense 9 the best thing i do is eat pasta and french bread AND ABSOLUTLY STAY AWAT FROM DAIRY AND DEEP FRIED FATTY FOODS. Also try to relax her with some tea it really helps! cheers

--------------------
Puppies Are Cute But I'm Cuter

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Question for shawneric new
      #244195 - 02/04/06 06:45 PM
Augie

Reged: 10/27/04
Posts: 5807
Loc: Illinois

So this article is saying that people with IBS have shown to have an intolerance for wheat but not necessarily all gluten? Meaning Spelt breads, oats, and barley would be okay? Well, maybe not barley because that was also listed.

And it sounds like the one article is also suggesting that SF is easier to handle than IF...just like Heather says, right.



--------------------
~ Beth
Constipation, pain prodominent,cramps, spasms and bloat!

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Re: Question for shawneric new
      #244209 - 02/04/06 11:40 PM
shawneric

Reged: 01/30/03
Posts: 1738
Loc: Oregon

Augie,

The questions are actually complex and I will try to shed some light on it all for you and remember its just my perceptions and some of my own personal understanding of it all.

First, I am not sure if you know this but I am also a chef. I don't personally eat a lot of wheat because it can bug me and I am not especially found of it anyway. Also, I don't eat a lot of fructose or juices with high acidity. They can sometimes be triggers to the underlying IBS and problems.

I have had IBS for thirty five years now and have been studying it a long time with a lot of help and its a lot to learn. My own IBS, I believe was caused by amoebic dysentery when I was ten in Mexico. It fits pretty "classic IBS" and I alternate. My IBS in the past has been severe for sure and its still important for me to manage it.

Not all IBSers might have a problem with wheat although its probably a pretty good proportion, it maybe individual still. There may also be other reasons besides intolerences or allergic reactions, but how foods are chemical broken down to make chemicals in the body that run the body. For example they know there are issues with serotonin in the gut. These are some examples kindof, but its much deeper then this in regards to foods and the gut.

"L-Tryptophan and Carbohydrates
L-tryptophan may be found in turkey and other dietary proteins, but it's actually a carbohydrate-rich (as opposed to protein-rich) meal that increases the level of this amino acid in the brain and leads to serotonin synthesis. Carbohydrates stimulate the pancreas to secrete insulin. When this occurs, some amino acids that compete with tryptophan leave the bloodstream and enter muscle cells. This causes an increase in the relative concentration of tryptophan in the bloodstream. Serotonin is synthesized and you feel that familiar sleepy feeling.


Fats
Fats slow down the digestive system, giving Thanksgiving dinner plenty of time to take effect. Fats also take a lot of energy to digest, so the body will redirect blood to your digestive system to tackle the job. Since you have less bloodflow elsewhere, you will feel less energetic after eating a meal rich in fats."

I asked one of the leading experts on IBS about foods.

"Since I have suffered for thirty years of IBS I wonder what role foods play in IBS. So I asked Dr Douglas Drossman at the UNC Center for Functional GI and Motility disorders and here was his response. This is not a substitute for seeking medical advise from your doctor on any specific conditions you may have, but for educational purposes only.

Dr. Drossman is a Co-director of the Center and Professor of Medicine and Psychiatry at UNC-CH. He established a program of research in functional gastrointestinal disorders at UNC more than 15 years ago and has published more than 250 books, articles, and abstracts relating to epidemiology, psychosocial and quality of life assessment, design of treatment trials, and outcomes research in gastrointestinal disorders.


Dr Drossman's comments on foods for IBS Health.

Shawn,
To say that people with IBS may get symptoms from food intolerances is an acceptable possibility, since the gut will over react to stressors of all types including food (high fat or large volumes of food in particular). Futhermore, there can be specific intolerances. So if you have a lactose intolerance for example, it can exacerbate, or even mimic IBS. Other examples of food substances causing diarrhea would be high consumers of caffeine or alcohol which can stimulate intestinal secretion or with the latter, pull water into the bowel (osmotic diarrhea). The same would be true for overdoing certain poorly absorbed sugars that can cause an osmotic type of diarrhea Sorbitol, found in sugarless gum and sugar substituted foods can also produce such an osmotic diarrhea. Even more naturally, people who consume a large amount of fruits, juices or other processed foods enriched with fructose, can get diarrhea because it is not as easily absorbed by the bowel and goes to the colon where it pulls in water. So if you have IBS, all of these food items would make it worse.

However, it is important to separate factors that worsen IBS (e.g., foods as above, stress, hormonal changes, etc.) from the cause or pathophysiology of IBS. Just like stress doesn't cause IBS, (though it can make it worse), foods must be understood as aggravating rather than etiological in nature.

The cause of IBS is yet to be determined. However, modern research understands IBS as a disorder of increased reactivity of the bowel, visceral hypersensitivity and dysfunction of the brain-gut axis. There are subgroups being defined as well, including post-infectious IBS which can lead to IBS symptoms. Other work using brain imaging shows that the pain regulation center of the brain (cingulate cortex) can be impaired, as well as good evidence for there being abnormalities in motility which can at least in part explain the diarrhea and constipation. So finding a specific "cause" of IBS has grown out of general interest in place of understanding physiological subgroups that may become amenable to more specific treatments. Hope that helps.
Doug "


This is also pretty good on:

Food Allergy and Intolerances

By The National Institute of Allergy and Infectious Diseases
WebMD Public Information from the National Institutes of Health

Food allergies or food intolerances affect nearly everyone at some point. People often have an unpleasant reaction to something they ate and wonder if they have a food allergy. One out of three people either say that they have a food allergy or that they modify the family diet because a family member is suspected of having a food allergy. But only about three percent of children have clinically proven allergic reactions to foods. In adults, the prevalence of food allergy drops to about one percent of the total population.

This difference between the clinically proven prevalence of food allergy and the public perception of the problem is in part due to reactions called "food intolerances" rather than food allergies. A food allergy, or hypersensitivity, is an abnormal response to a food that is triggered by the immune system. The immune system is not responsible for the symptoms of a food intolerance, even though these symptoms can resemble those of a food allergy.

It is extremely important for people who have true food allergies to identify them and prevent allergic reactions to food because these reactions can cause devastating illness and, in some cases, be fatal."

http://www.webmd.com/content/article/5/1680_50303.htm

People can also have more then one condition going on which makes it all even harder to figure out.

Some may have celiac or a wheat sensitvity through an immune reaction or an intolerence.

However, a big part of IBS and eating is the act of eating itself. There are problems with this and the bowel can over react to basically the amount of calories in the meal itself and fat content etc.. Even the schedule a person keeps in eating.

The next thing is something called a mast cell and I will post on that for you next.

so this is possible

"an intolerance for wheat but not necessarily all gluten? "

This is individual.

"Meaning Spelt breads, oats, and barley would be okay? Well, maybe not barley because that was also listed. "

I am not sure what this means, SF and IF?

And I highly respect Heathers information.











--------------------
My website on IBS is www.ibshealth.com


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Questions about food and eating for my daughter new
      #244251 - 02/05/06 11:00 AM
PaulineNZ

Reged: 02/02/06
Posts: 26


Hi there, firstly I want to thank each and everyone for their great caring and educational postings. It is the first time in a year that as a parent I haven't felt so 'alone'. Next I need to ask some questions they may seem really stupid questions but please bear with me :-)

First I am just going by what is on the site, I have not been able to order the book into NZ as yet.
In the IBS cheat sheet it says under soluble fiber

Make the basis of all meals and snacks. First thing to eat on an empty stomach.

Does this mean that if say Gabrielle has her breakfast bowl in front of her with g/f cereal and peaches and rice milk, that she is to eat a large portion of just the cereal before she can touch the peaches?

Also at lunch i.e baked potato stuffed with chicken bacon and mushrooms and vege
Is she to eat nearly all of the baked potato and then have some vege.

Dinner, Brown rice with chicken and stirfry.
Should she eat nearly all the rice and chicken before eating any vege.

You're probably wondering if I have 'normal intelligence'
by asking such questions - it's just that I am desperate to help Gabrielle. She has been having her cereal and fruit but eating it together, not putting the cereal in her tummy first and then adding the insoluble fibre. Also with the baked stuffed potato, she would eat say 1/4 of it and then just eat her vege with her potato i.e. together in each bite.
Likewise with the rice, chicken and vege, she would eat it all together i.e. like a fried rice (but not fried) and therefore the insoluble fibre is going in at the same time as the soluble fibre.


I am embarrassed to even post this really as I am sure it is so 'elementary' to you all, just wondered if I was missing something by not having the book yet and clicked that this maybe why she isn't getting better.

Also she is better on the days that she has had no fruits or vegetables not even the safe soluble fibre ones, but I struggle with her not having a balanced diet i.e. with red meat and dairy gone, she doesn't like the calcium fortified rice milk, so only has the bare necessity, can't have soy cheese or anything like that, and because of her weight loss, I just am really hesitant to take fruit and vege out of her diet (we have always eaten large amounts of fruits and vegetables as a family).

Anyway I hope something in here makes sense and that you don't write me off as a 'nut case' if you haven't already LOL

Thanks heaps
Pauline


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Re: 11 year old daughter been in pain every night for a year! new
      #244252 - 02/05/06 11:26 AM
penpal

Reged: 01/19/06
Posts: 56
Loc: Pacific Northwest

I have also had predominently nighttime IBS pain for the past seven years. My heart goes out to your daughter, I hope she gets some relief soon.

You mentioned that she eats bacon. That is a definite trigger for me and I've given up eating it, even in small amounts. Stir fried veggies would also give me a hard time because the vegetables are not cooked very much, plus the oil is hard to digest, but everyone is different. As you have probably seen on this forum, everyone has different trigger foods or foods they can tolerate with no problem.

Do you have almond milk in NZ? I really like the taste and I've recently found some hazelnut milk, which is delicious.

I think it's a good idea for your daughter to eat the soluble fiber first to get a "buffer" in her system before eating any protein or insoluble vegetables or fruit. I enjoy eating applesauce instead of raw apples - this seems to be less irritating for me. I'm totally avoiding "gassy" veggies like broccoli, brussels sprouts and cabbage and this seems to have alleviated my symptoms a bit. I used to like my veggies barely cooked, but now I cook them till they're soggy!

Foods like sweet potatoes, steamed fennel, well-cooked or canned asparagus, boiled celeriac root (cooked like mashed potatoes) are good alternatives for me.

I hope Gabrielle soon feels better.

--------------------
Penny

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Re: 11 year old daughter been in pain every night for a year! new
      #244253 - 02/05/06 11:37 AM
PaulineNZ

Reged: 02/02/06
Posts: 26


Hi Penny, thanks for replying. You say you have pain predominantly at night for the last seven years. Is it your evening meal that is causing this, or is it a build up of gas from what you have eaten throughout the day. When I do a stirfry I don't use oil, I should really have said steamed mixed vege, also the bacon is chicken and grilled and fat removed. I haven't found out about the almond milk here, but I will. Thanks for taking your time to respond.

Pauline

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Re: Questions about food and eating for my daughter new
      #244325 - 02/05/06 08:34 PM
shawneric

Reged: 01/30/03
Posts: 1738
Loc: Oregon

PaulineNZ.

IBS is extremly complex and no worries on questions.

Heather or someone can help you with specifics on the foods.

However "large portions" are not a good thing. The sizes of the meals and the fat content and calories are important.

This stresses the digestive system.

Smaller meals through out the day are better. Part of this is to keep the bowel slightly distended. Its part of how the bowel works.

Also Heather wrote this for me here and I have some food information on the page, until you can get Heather's book's.

http://www.ibshealth.com/ibsfoodsinfo.htm


On vegetables some are more of a trigger then others and the same goes for fruits. Fruits high in frutose can be a problem. Vegtables with a high acidty can be problematic for some people.

This is also some info on that.

http://www.aboutibs.org/Publications/chronicdiarrhea.html

That's a slight clue.

"Also she is better on the days that she has had no fruits or vegetables "

Because they can be triggers and these can be individual to the person.

"weight loss"

That is an issue, if its weight loss and she is still eating enough food as well as how fast and how much weight.

Or if she doesn't eat enough food, because foods=pain?

We also totally understand your concern as a mother. As some one who had this at a young age and with the help of others here we will try to help you out and this is important, there are things to do and try that will make her better. Not all of them will make total sense at first, but things can be done for sure. A big part of that is education and questions and all questions are no problem.


--------------------
My website on IBS is www.ibshealth.com


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Thank you Shawneric new
      #244329 - 02/05/06 11:21 PM
PaulineNZ

Reged: 02/02/06
Posts: 26


Thanks so much once again for your caring and educational posts, also thanks for not making me feel a real 'idiot'.

Her weight loss came about four weeks after the constipation started, she and some friends came down with a stomach bug, she got the vomitting but no diarrhea - we were hoping it would clear the impaction but no! She had a violent bug for 24 hours and virtually had about 4 hours where she wasn't vomitting, we kept pushing the fluids even though she couldn't keep anything down, just so she didn't become dehydrated. We had been to the Dr the day before and she weighed 3.5kg heavier (we had checked her on our scales as well). What followed was 8 months of trying to get some weight on her. I think the big thing is that she was always such a big bread, cereal and pasta eater and she has had to go gluten free, which is different in taste and she is still getting used to g/f foods. She has put on a about a kilo and a bit. She was never a big child so the weight loss is noticeable and of concern. But her energy levels are good and she is able to do sports and function completely normally during the day unless she has been 'glutened' it is the pain at night that is just such a ....pain :-)
Thanks once again
Pauline

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A note about the dinner new
      #244361 - 02/06/06 08:12 AM
Augie

Reged: 10/27/04
Posts: 5807
Loc: Illinois

I don't think brown rice can serve as her SF base. I think that is IF just like the veggies.

What types of veggies does she eat with the potato for lunch? That sounds like a yummy lunch! Does she eat the peel of the potato? That may be helping the C or causing more pain...hard to know which one. And are the mushrooms and veggies cooked? I think cooking the mushrooms would help...but maybe some people do okay with fresh mushrooms. I just feel better mentally, cooking everything right now since I hurt so badly. No time to experiment.

--------------------
~ Beth
Constipation, pain prodominent,cramps, spasms and bloat!

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Re: A note about the dinner new
      #244377 - 02/06/06 08:51 AM
PaulineNZ

Reged: 02/02/06
Posts: 26


Hi there, thanks for this. After posting I spent a lot of time, getting my head around the whole sf and if thing.

Yes you are right brown rice is too if. I have changed it to basmati rice.

Yesterday I made sure that all her meals were mostly sf.
she was a bit better last night - she didn't get sore until about 7.30, she was sore but coping, not sobbing in pain. We are off to the specialist today, I am hoping he will have some insight.

I struggle with the 'healthy side of things'. i.e. we have always eaten a lot of brown rice, jacket potatoes, lots of broccoli, cauli, green beans, garlic, tomatoes,cabbage, lettuce, etc etc.
This has been the basis of all our lunches and dinner, with chicken and fish and red meat, organic eggs and yoghurt and good quality tasty cheeses. Lots of homemade organic wholewheat breads, apples, bananas, pears, almonds, sunflower seeds, sesame seeds, so you can see it is a whole different mind set for me, and although I have been trying the sf thing, I realise I have been making a lot of mistakes in this area, thanks for helping draw attention to some more. For years this country has pushed the importance of good quality proteins, high fibre vegetables and fruits and lots and lots of whole grains.

This way of eating had never been a problem for us, I have lots to learn.
Thanks for taking the time to respond.
Pauline

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Nighttime IBS Pain new
      #244390 - 02/06/06 09:11 AM
penpal

Reged: 01/19/06
Posts: 56
Loc: Pacific Northwest

Hi Pauline,

I'm still trying, after all this time, to figure out exactly what triggers the pain, which is a burning and sharp pain that gets worse the longer I stay in one position at night. Sometimes it starts right away when I go to bed and other times in the early hours of the morning. Of course, I've had every test under the sun to rule out anything life-threatening. I've recently discovered this site and was not aware until now about the differences in soluble and insoluble fiber.

I seem to be doing a little better since I've started cutting out certain foods or preparing them differently. As to your question, I tend to think that it may not necessarily be the foods that I've eaten that day, but could be from the day before (which makes it even harder to pinpoint exactly what causes the problem).

When I get a bad attack of IBS-C I take a laxative as a last resort and get very narrow stools. I get the feeling that I'm swollen inside and this is causing the blockage. This seems to be caused by a reaction to certain foods that irritate my colon. It usually takes a few days to settle down to less intense pain after a bad attack.

As I may have mentioned, some of my triggers seem to be cheese, fatty food and "gassy" vegetables, especially onions, beans, broccoli, brussels and cabbage. I know I've not been careful enough lately (had some pizza yesterday) and I'm paying the price! I'm trying to get my act together to try another elimination diet, i.e. eating only "safe" foods for a week and slowly adding other foods back in. This is very tedious, but I think I'll have to give it another go if I ever want to get out of this cycle of pain.

One thing that helps a bit is to sleep on my back, propped up with a few pillows. This is not the most comfortable position for me, but it tends to lessen the pain (lower left abdomen). The pain is worst when I sleep in my favorite positon (on my left side) for any length of time. A warm bath before bedtime helps too. I know your daughter doesn't like using a heat pad, but I find it quite soothing sometimes.

Good luck in your search for a cure for your daughter.

--------------------
Penny

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Did you switch it to white basamati? new
      #244397 - 02/06/06 09:25 AM
Augie

Reged: 10/27/04
Posts: 5807
Loc: Illinois

That is more SF...and hopefully won't cause worse C. And how about that recipe for the potato?

Yes, it sure is a whole new way of viewing what's healthy for us, isn't it. Goes against everything I thought would be best for me. I thought whole wheat and All Bran and veggies would help the C.

Don't go totally SF. Since she is a C, it is imparative that she get enough IF to help her go.

--------------------
~ Beth
Constipation, pain prodominent,cramps, spasms and bloat!

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Re: Nighttime IBS Pain new
      #244447 - 02/06/06 12:00 PM
avril

Reged: 12/16/04
Posts: 5
Loc: england

Hi Penny,
First time on board.Like you I am at my wits end with night pain. Every afternoon it starts to build up and gets worse until I go to bed. It is affecting my sleep bigtime. Not sure about relation to food. Have tried
acacia but that causes pain and bloating. Bowel symptoms as you. Only hope is to try various acacia doses. Have you found any cure for the pain and gas?
All the best for your problems
Avril

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Re: Nighttime IBS Pain new
      #244524 - 02/06/06 05:16 PM
penpal

Reged: 01/19/06
Posts: 56
Loc: Pacific Northwest

Hi Avril,

I'm sorry to hear that you are also suffering from nighttime IBS pain. It's one thing to have pain in the daytime but then at least one would get a decent night's sleep. The years of sleep deprivation have been very hard for me. It's almost like a fact of life now and I have almost given up that it will get better. Sometimes it's only mild, but often it is enough to keep me tossing and turning all night.

I don't know how long you've had the problem or if you've had a thorough check up, but I haven't come across too many people with this type of IBS-C. Mine feels like a gas pain, but I don't think that's all it is. Before I had IBS I would occasionally get gas pain, but it wasn't like it kept me awake at night. I think it might have something to do with the fact that I've been on lots of antibiotics in the past (after 5 surgeries). Maybe my intestinal wall was damaged because of this - who knows? (I joked to my husband that IBS should be called "none of the above" disease because it's just a label they give you when nothing else is found). I've also had my gallbladder removed about 12 years ago and that can make digestion of fats more difficult.

Right now I'm again trying to cut out "suspicious" foods. It's so hard, because I'll stop eating one type of food thinking that I've solved the problem and then it starts again. I must admit I've not been disciplined enough to completely cut out trigger foods in the past but lately I'm attempting to be more strict with what I'm eating. I had kind of given up because nothing I tried seemed to help.

For the past few weeks (since I discovered Heather's diet) I've been trying to eat mostly soluble vegetables instead of lots of salads, broccoli, cauliflower, etc. and I'm not eating any cheese. I think it's a very interesting theory about not eating too much insoluble fiber. I've tried cutting out cows milk in the past, but that didn't make any difference. I seem to be doing a little better on the soluble fiber diet but it's too soon to tell. A few weeks ago I started using the acacia fiber (1 tbsp. per day) and also some liquid acidophilus. One of the two caused me to really bloat up with gas, so I'm confused now which to cut out.

Despite having this horrible health problem, I lead a very full and busy life - I don't have time for this! I just would love not to be tired all the time and being afraid of food. I'll just have to make it more of a priority again to find out what is causing it.

The only thing that helps a bit is when it starts to get difficult to pass stools I take a dose of milk of magnesia. This helps to get things "moving" again. Also, a heating pad on my lower abdomen helps quite a bit if it's really spasaming (is that a word? lol).

Good luck to you in finding some relief.

--------------------
Penny

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Just back from Specialist - update on my daughter new
      #244637 - 02/07/06 08:44 AM
PaulineNZ

Reged: 02/02/06
Posts: 26


Went to the Paediatric Gastroenterologist yesterday. He had the results of her bloods and faeces all were normal except the she does carry the coeliac gene factor. Which basically means although not a coeliac she can be sensitive to gluten. I don't understand it all completely yet, whether this means she may still develop coeliacs later in life, and/or whether she can pass this gene on to her kids and they may be coeliacs, I'm not sure. At least we were on the right track witht the gluten :-) He wants her to have a hydrogen breath test to see if she is dairy intolerant. Also he said he wanted to refer her to an alergist because she is in pain every night and wonders if in addition to gluten and dairy if she is alergic or intolerant to some other food which she is eating every day that does not agree with her. Also he wants her to have an endoscopy and colonoscopy done.

I said do you think this is ibs and he said he could not begin to give that diagnosis yet as it is a diagnosis of exclusion and he said he had not excluded every posibility.

He also said the barium swallow although didn't show inflammation does not rule out crohns the other endo or colonoscopy would be better for this.

He is still taking the whole thing very seriously and was lovely to us, my dad had colitis and both my sister have irritable bowel and I am dairy intolerant and so is my husband.

But the good news is she has put on 1 kg and has grown 1 cm in five weeks, I'm hoping she can keep the weight on this time.

We are pleased he is being thorough and not just brushing it under the 'irritable bowel carpet' as the Drs in the public system had done, sent us home told Gabrielle to take peppermint oil capsules, defocus herself from the pain and think happy thoughts (fabulous professional diagnosis eh)

Look the final diagnosis may be that it definitely is irritable bowel.

He didn't want me to do Heather's diet felt it was going to exclude too many things that she needs and that we were to concentrate on gluten and dairy only.

But I will keep to the principles of Heather's way of eating i.e. soluble mostly, no dairy, low fat, very little red meat rather than none etc. as I think there is definitely something in this way of eating.

Thanks for reading and once again thanks to you all for caring and posting and helping me feel 'not so alone' as a parent and thanks for never making me feel silly for asking some of the questions I do. Pauline

Thanks for reading

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Re: Did you switch it to white basamati? new
      #244641 - 02/07/06 08:47 AM
PaulineNZ

Reged: 02/02/06
Posts: 26


Yes I did switch to white basmati. Yes the balance of fibre is important but extremely hard to get a handle on isn't it? Too much rice products and it 'bungs' her up, that is the problem with the gluten free foods, but we will start giving her a fibre supplement in small doses.

Thanks, Pauline

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Sounds like a great doctor!! new
      #244644 - 02/07/06 08:51 AM
bamagirl

Reged: 04/02/04
Posts: 1407
Loc: Alabama

I'm so glad they are being thourough! Hang in there for the tests and keep us updated!!

--------------------
God is Faithful!

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Re: Just back from Specialist - update on my daughter new
      #244657 - 02/07/06 09:31 AM
shawneric

Reged: 01/30/03
Posts: 1738
Loc: Oregon

PaulineNZ

Its good your working with the doctor on all this.

Here is some Celiac Disease information.

http://www.aboutkidsgi.org/Celiac.html


"I said do you think this is ibs and he said he could not begin to give that diagnosis yet as it is a diagnosis of exclusion and he said he had not excluded every posibility."

This actually isn't so true anymore, but some doctors go by exclusion still to make sure.

You might print these two things also and take them with you next time they can really help.

Questions To Ask Your Doctor
Ten Questions To Ask Your
Doctor

http://www.medicinenet.com/script/main/art.asp?articlekey=13683

Current Approach to the Diagnosis of Irritable Bowel Syndrome
By: George F. Longstreth, M.D., Chief of Gastroenterology, Kaiser Permanente Medical Care Plan, San Diego, CA [Partcipate, IFFGD, 2001]

"In the past two decades, medical opinion has changed regarding how to diagnose IBS. The older view emphasized that IBS should be regarded primarily as a "diagnosis of exclusion;" that is, diagnosed only after diagnostic testing excludes many disorders that could possibly cause the symptoms. Because many medical disorders can produce the cardinal IBS features of abdominal discomfort or pain and disturbed bowel habit as well as other symptoms caused by IBS, this approach often led to extensive diagnostic testing in many patients. Since the era when such thinking about IBS was common, laboratory, motility, radiologic, and endoscopic tests have proliferated. Although each of these tests is useful in evaluating certain problems, their routine or indiscriminate use can cause unnecessary inconvenience and cost for patients, and complications even occur infrequently from some of the tests. Fortunately, physicians can now diagnose IBS in most patients by recognizing certain symptom details, performing a physical examination, and undertaking limited diagnostic testing. This simpler approach is grounded on recent knowledge of the typical symptoms of IBS, and it leads to a reliable diagnosis in most cases. Extensive testing is usually reserved for special situations. "

http://www.aboutibs.org/Publications/diagnosis.html

"Of course, the gastroenterologist in referral practice may not be content to accept these probabilities without first excluding those rare conditions overlooked by routine evaluations. So how far should the gastroenterologist go in the workup of patients referred to them who typically present with IBS, and have negative screening studies? One gastroenterologist, recently commented to me: "I order breath hydrogen studies and sprue serologies on all my patients referred with IBS". No doubt this comment reflects the concern that as referral gastroenterologists we have an obligation to contribute additional expertise to the diagnostic effort. "

http://www.romecriteria.org/reading1.html

"He is still taking the whole thing very seriously and was lovely to us,"

That is a major plus!!!

"Look the final diagnosis may be that it definitely is irritable bowel. "

This is possible and a person can also have IBS and another condition. She fits IBS in a lot of respects, but as mentioned some things do mimick SOME ibs symptoms.

That she is having a colonoscopy done is good and and endoscopy.

No matter what the cause of pain, what they said here is very important.

"defocus herself from the pain and think happy thoughts"

State of the art Pain research has come a very long way, distraction for chronic pain episodes can be very benefical as well as staying positive and learning methods to cope with chronic pain is VERY important and its a very serious matter. The brain remebers pain episodes and nerve pathways are developed from them and the continuial back and for communication between the brain and the digestive system.

There is a very complex relationship between the autonomic nervous system, which runs breathing, heart rate, digestion and other involuntary body functions and the sympathetic nervous system and parasympathetic nervous system and the enteric nervous system or "gut brain."

You might notice when she is in pain, her breathing becomes shallower and increase, muscles almost always tense up making pain worse, she might sweat, and perhaps turn a shade whiter. Reactions from the nervous systems.

This good on Abdominal Pain
Medical Author: Dennis Lee, M.D.
Medical Editor: Jay W.Marks, M.D.
What is abdominal pain?
What causes abdominal pain?
How is the cause of abdominal pain diagnosed?
Special problem in irritable bowel syndrome (IBS) of diagnosing the cause of abdominal pain
Why can diagnosis of the cause of abdominal pain be difficult?
How can I help my doctor to determine the cause of my abdominal pain?
Abdominal Pain At A Glance

http://www.medicinenet.com/abdominal_pain/article.htm

Answers to Common Questions about Bellyaches in Children

http://www.aboutkidsgi.org/Bellyaches.html

On the end of this is something to practice which can help.

Question from a 13-year-old in Oregon -- I have had stomach pains for over one year that make it hard for me to do anything. I have recurring abdominal pain syndrome. My doctor said there is nothing wrong with me and nothing he can do to treat me. Do you have any suggestions?
Answer -- We assume that you have been seen by a physician who gave you the diagnosis of "recurring abdominal pain syndrome," (functional recurrent abdominal pain).

Tests are done to look for the presence of disease as the cause of symptoms. If the tests find no evidence of disease, the symptoms are termed "functional." Diagnosis of this functional gastrointestinal disorder is based on the symptoms, after ruling out the presence of disease or tissue damage. These symptoms are defined as abdominal pain severe enough to disrupt routine activities three or more times during a three-month period. Studies show that it is pretty common, affecting 10%-15% of school-aged kids.

So if it is not a disease that is causing these symptoms (you are not sick and that is good news), what is causing it? The answer is not entirely clear. Ongoing research is looking for the explanation.

Recent studies point to an increased sensitivity of the sensory nerves in the intestines. Normal movements of your intestines may be perceived as cramps or other discomfort.

The intestines share nerve pathways with the brain. In many situations, when the brain reacts to something -- like the sound of a dentist's drill -- the intestines, or gut, pick up the same signals and react.

The majority of people will ultimately have some kind of gastrointestinal (GI) symptom when exposed to stressful situations. If your GI system is a bit too reactive, you will experience symptoms in more types of stressful situations than someone else will whose gut is not quite as reactive. What is stressful for one person may not be stressful to another, and lots of people don't even realize it when they get stressed -- they just feel sick.

Finally, there is the "gate theory" of how pain is experienced. When pain originates at some point, nerve messages pass through something like a gate on their way to the brain. The wider open the gate is, the more pain that is experienced. By thinking about and focusing on the pain site, we open the gate. Plus, feelings of anger or worry or sadness can open the gate.

However, we can also help close the gate. Turning attention away from the site or feeling of pain, through relaxation or focusing on some other activity, can help close the gate and lessen or even eliminate pain.

A well-known phenomenon that demonstrates this is that of the athlete who plays a game while injured, oblivious to the pain. The athlete is completely focused on the game and does not feel pain. Then, after the game is over, the athlete turns attention to the injury and feels pain.

Whatever the cause, you can do something about it! It takes some effort but there a number of ways that you can help yourself.

First, think about this example. Have you ever experienced a muscle cramp or a side-ache during strenuous running or exercise? You feel real pain in muscles that are not diseased. But they have been stressed beyond some point that in you causes discomfort. What do you do to avoid it in the future? You might think about what you were doing that resulted in the muscle pain. Maybe next time you do more warm-up exercises, or start out slower, or don't run as far.

The first time you felt a side-ache, you might have felt concerned and stopped running. After you learned that it was nothing to be concerned about, you may have barely taken notice the next time it happened, perhaps slowed down a bit, but then kept right on going.

This is the same type of thing that happens with functional recurrent abdominal pain. Your intestinal muscles may be causing you to feel pain. To get it under control, try this:

1) While the pain you feel is very real, do not worry that you are sick. You are not. Your body is reacting to events in a way that is causing you discomfort but is not cause for alarm.

2) Try to figure out if your symptoms are connected with anything else that may be triggering them. Do symptoms flare at certain times, before certain events, on weekdays, on weekends, etc? If you can identify triggering factors (like certain foods or activities) you can try to avoid them, or if that is not possible, try to deal with them in different ways.

3) Are you missing school because of this? Worry over missing school can make symptoms worse. Try to keep going.

4) Are you doing too much-school plus lots of outside activities? If so, take some time off to relax. Too much of anything can be stressful.

5) The next time you feel the pain, don't let it stop you. Keep on going. Practice focusing your thoughts on what it is you want to do next and then go ahead and do it. Don't let pain take your awareness hostage.

http://www.aboutkidsgi.org/questionsandanswers.html#fap







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My website on IBS is www.ibshealth.com


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Re: Just back from Specialist - update on my daughter new
      #244689 - 02/07/06 11:06 AM
lalala

Reged: 02/14/05
Posts: 2634


Hi, Pauline, and welcome! I don't have much to add because you've received so many excellent responses! (I'm always amazed at how supportive and smart the folks on these boards are!) I just wanted to say I'm sorry your daughter is suffering so much. Abdominal pain/cramping has also been one of my major symptoms and after a few months of following the diet I saw a major reduction in the frequency and severity of this pain.

Your daughter is lucky to have a doctor who is taking her symptoms seriously and a mother who's doing all she can to help her out. I hope your daughter gets some answers and starts feeling better soon!

Take care,


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A note for PenPal about triggers and gas possibly from Acacia new
      #244726 - 02/07/06 11:49 AM
Sand

Reged: 12/13/04
Posts: 4490
Loc: West Orange, NJ (IBS-D)

Quote:

Right now I'm again trying to cut out "suspicious" foods. It's so hard, because I'll stop eating one type of food thinking that I've solved the problem and then it starts again. I must admit I've not been disciplined enough to completely cut out trigger foods in the past but lately I'm attempting to be more strict with what I'm eating. I had kind of given up because nothing I tried seemed to help.

For the past few weeks (since I discovered Heather's diet) I've been trying to eat mostly soluble vegetables instead of lots of salads, broccoli, cauliflower, etc. and I'm not eating any cheese. I think it's a very interesting theory about not eating too much insoluble fiber. I've tried cutting out cows milk in the past, but that didn't make any difference.
With regard to cutting out one trigger at a time, you might take a look at this post about how hard it is to identify triggers when you're not stable.

I seem to be doing a little better on the soluble fiber diet but it's too soon to tell. A few weeks ago I started using the acacia fiber (1 tbsp. per day) and also some liquid acidophilus. One of the two caused me to really bloat up with gas, so I'm confused now which to cut out.
If you really mean one TABLESPOON of Acacia per day, that's a lot for a starting dose. Heather recommends starting at one teaspoon per day (1/2 tsp twice a day) and I was very cowardly and started at 1/4 teaspoon per day. If you started out at one Tablespoon per day, that could well be causing the gas - your body just couldn't adjust to that much SFS all at once.




And just one more note: when you say "I think it's a very interesting theory about not eating too much insoluble fiber", remember you really do need to eat as much IF as you can tolerate especially if you're C. You just need to eat it carefully: chopped, cooked, after SF.

HTH.


--------------------
[Research tells us fourteen out of any ten individuals likes chocolate. - Sandra Boynton]

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Re: Nighttime IBS Pain new
      #244752 - 02/07/06 12:14 PM
avril

Reged: 12/16/04
Posts: 5
Loc: england

Penny,
Thanks for your reply. Some interesting similarities. I started this IBS lark after taking SSRI antidepressants. I'm sure the pills were to blame. Loads of stress , IBS so bad I couldn't work and a time of treatment for food allergies led me to find Heather's page. My doctor says it's IBS so he can't help.Heathers ideas have helped to control during the day but the night is very dodgy. I struggle to get enough sleep to work!
Like you I have tried missing out many foods and I've found diary is bad. Unfortunately, I do like my wine and coffee but try to be careful.
Last night was better with a small amount of acacia before I went to bed. See what tonight brings!
All the best
Avril

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Re: A note for PenPal about triggers and gas possibly from Acacia new
      #244854 - 02/07/06 05:28 PM
penpal

Reged: 01/19/06
Posts: 56
Loc: Pacific Northwest

Sand - Thanks for taking the time to reply to my post. I appreciate all the help I can get!

That thread about people who have trouble identifying triggers was very eye-opening. It seems that others have also tried for years to find out what their triggers are. The triggers for IBS-C and IBS-D can be quite different.

You may be right about me taking too high a dose of acacia to start out. 1/2 tsp. just seemed such a tiny amount (compared to other fiber supplements I've tried), I didn't think it would make any difference. I have lowered the dose and will see what happens.

As far as insoluble fiber goes - I do eat foods like soft canned asparagus but I really get very gassy if I eat even well cooked veggies like broccoli and green beans. I eat sweet potatoes, yams, carrots, parsnips, celeriac, yucca root - lots of soluble fiber and vitamins in those. I do eat one slice of sprouted 20 grain bread each day and that has quite a bit of insoluble fiber in it. I also have a tablespoon of freshly ground flax seed in my protein shake which I think contains both soluble and insoluble fiber.

By the way, last night I had relatively little pain, so I'm keeping my fingers crossed that I'm doing something right!


--------------------
Penny

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Re: Nighttime IBS Pain new
      #244859 - 02/07/06 05:45 PM
penpal

Reged: 01/19/06
Posts: 56
Loc: Pacific Northwest

Avril - My doctor kind of brushed me off too. I don't think they like to deal with IBS because they really don't have much advice once they've ruled out celiac, IBD or cancer. When I had my colonoscopy, for instance, the doctor removed a benign polyp. I asked when I should be checked again he said "never - everything's fine". I find that a bit strange as I understand that polyps can recur. This is a from a so-called "top specialist" in his field. I will get another test done in a couple of years anyway, especially as colon cancer runs in my family (doc knew this) and I have had breast cancer which means I'm more at risk for colon cancer. Here in the US we have private insurance and because our deductible is sky high we have to pay for these tests out of pocket, which run about $1,800 each. I think this is exhorbitant and prevents people like me from getting necessary tests. So far I have paid out thousands of dollars trying to get an answer to my problem, with no success. Hopefully I'll get some good ideas from people on this board. I've already learned a few new things to try.

I hope you get some answers too.

--------------------
Penny

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Re: A note for PenPal about triggers and gas possibly from Acacia new
      #245065 - 02/08/06 01:03 PM
Sand

Reged: 12/13/04
Posts: 4490
Loc: West Orange, NJ (IBS-D)

Quote:

That thread about people who have trouble identifying triggers was very eye-opening. It seems that others have also tried for years to find out what their triggers are. The triggers for IBS-C and IBS-D can be quite different. As I've said before, I'm a strict constructionist when it comes to Heather's diet, so I think her trigger list is valid for everyone. My feeling is that once you're stable, you may be able to cheat a little with alcohol, coffee, even a little dairy, but when you're starting out it's best to avoid everything on the list until you stabilize. It's also possible you won't be able to eat some things that are generally safe when eaten carefully: for me it's whole wheat.

You may be right about me taking too high a dose of acacia to start out. 1/2 tsp. just seemed such a tiny amount (compared to other fiber supplements I've tried), I didn't think it would make any difference. I have lowered the dose and will see what happens. You get a higher yield of SF with Acacia than with other SFS. It does seem like an awful little bit, but I knew I'd stick with it better if I hardly knew it was going down.

As far as insoluble fiber goes - I do eat foods like soft canned asparagus but I really get very gassy if I eat even well cooked veggies like broccoli and green beans. I eat sweet potatoes, yams, carrots, parsnips, celeriac, yucca root - lots of soluble fiber and vitamins in those. I do eat one slice of sprouted 20 grain bread each day and that has quite a bit of insoluble fiber in it. I also have a tablespoon of freshly ground flax seed in my protein shake which I think contains both soluble and insoluble fiber. Hmmm. How about fruits, maybe in a smoothie? Throw in a banana for SF, some peeled peach for mostly SF, and some berries for IF.

By the way, last night I had relatively little pain, so I'm keeping my fingers crossed that I'm doing something right!
I'm so glad to hear this!




--------------------
[Research tells us fourteen out of any ten individuals likes chocolate. - Sandra Boynton]

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Re: A note for PenPal about triggers and gas possibly from Acacia new
      #245109 - 02/08/06 03:53 PM
penpal

Reged: 01/19/06
Posts: 56
Loc: Pacific Northwest

I'll have to tape Heather's list of "trigger" foods to my fridge! The thing is, I eat such a wide variety of healthy foods including lots of veggies and fruits, so it's hard to figure out what is causing the problem. I've never liked junk food and hardly ever eat red meat. I'll have to get down to the basics and work from there. Thanks for your input.

--------------------
Penny

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