Results!!
#30167 - 12/05/03 10:01 AM
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So finally there is medical evidence to show i have a problem...got test results back today showing i am wheat intolerant...am not happy obviously because it means its gonna be a huge effort to change my diet...but i am happy at the same time cus after months and months of tests and getting no-where, i finally can look forward knowing that now i know what i need to do to help my problems!
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Re: Results!!
#30170 - 12/05/03 10:11 AM
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Karin
Reged: 02/11/03
Posts: 483
Loc: Southern California
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Wheat intolerant or Celiac? What test showed this, blood or biopsy?
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Karin - did a blood test from www.yorktest.com - food intolerance.
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Many years of C-IBS and pain too for past 2 years-
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I have preodmintantly C tho i have noticed that over the last couple of months (i.e. since moving to Uni) I have have occasionally had D. by the way, if anyone is stuck over what to eat and like me has spent months trying to work out exactly which foods are 'bad' for them, then i do recommend food testing. ok, so i have only had the result yesterday and havent started the new elimination diet yet, but many people have been sceptical about doing food intolerance testing, especially off the internet. but i do recommend it if you're at your wits end and it feels like everything you eat is reacting badly with your body. I will keep you up to date and let you know if there's any significant improvements over the next few weeks or so.
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well actually two questions actually!
1) now that ive been told that im intolerant to wheat and gluten, does that mean that other trigger foods are safe i.e. dairy and red meat, or should i still avoid them for the reasons stated on here?
2) im getting through the acacia pretty fast and am thinking about ordering some more. Is is cheaper to order say 2 or 3 packs at a time than 1 (remember im in the UK) and does it ever go 'off' or can i order in bulk then keep it for months until i need it?
cheers
by the way, i dont think ive been one of the people to say this so far, but finding this site has been like a godsend. any times ive felt at my lowest, ive always been able to come on here and feel tons better afterwards. so thanks to everyone - heather for creating this and everyone else for all the support they give to one another, you're truly all angels! 
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I'm really interested in learning if the elimination diet helps you b/c I've always heard that the only reliable and scientifically valid way to document gluten sensitive enteropathy was w/ a biopsy and that the food testing was hocus pocus. SO, if you have success that will be cool.
BTW, I'm not Heather but I would suggest that for the first month or so of eliminating gluten you also stay on the exact same diet you've been eating up until now- minus the gluten- and NOT add any other high risk foods to your diet. Otherwise, if your constipation remains a problem, you won't be able to tell if eliminating the gluten has helped.
Hope this helps. Can't wait to hear how it goes for you....literally and figuratively! lol
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Many years of C-IBS and pain too for past 2 years-
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Re: Results!!
#30306 - 12/06/03 10:45 AM
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Karin
Reged: 02/11/03
Posts: 483
Loc: Southern California
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One more question Katgirl: Did they specifically include Gluten when they said you had a wheat intolerance? Usually
a wheat intolerance doesn't necessarily mean a Gluten intolerance. Being gluten intolerant, I believe, means being Celiac. If you're gluten intolerant, it means much much more than just avoiding wheat products, it means avoiding over 50% of the food on the open market and that's very hard to do. Most foods contain some sort of gluten product, such as any soy item, salad dressings, rice milks, etc. etc.. This is an interesting subject for me, I'll be anxious to hear what they told you. Thanks.
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hI; Putting a name to a problem is always a big relief. GOOD FOR YOU!
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No just wheat intolerance but the antibodies associated with gluten were high, but not high enough to be under the complete avoid column. Gluten is in my rotate column, which means that im meant to have a small amount every 3 or 4 days. Wheat is meant to be cut out entirely. you say you're interested in this...have you also got the same intolerance?
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Re: Results!!
#30321 - 12/06/03 01:27 PM
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Karin
Reged: 02/11/03
Posts: 483
Loc: Southern California
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I've been trying to figure out the wheat intolerance part of my diet now for about a year. Wheat does not bother my IBS, but it bothers the rest of my body. While trying to figure out whether or not I was Celiac, I found that other things such as headaches, clearing throat, joint pain, foggy brain thoughts cleared up totally while off grains. When I was diagnosed NOT to be Celiac, I added it all back in and then all the other problems came back. I now try and only eat wheat when desperate, such as while out of the house and starving........lol. I'll be interested to see if your wheat avoidance will help your IBS. Do you have any other symptoms other than IBS that this could help you with?
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Hi - Thanks for your kind comments!!
For your questions, if you are JUST gluten intolerant and you do NOT have IBS, then all you have to eliminate from your diet is gluten. All of the resources at celiac.com will be really helpful for that - also check the recipe board for gluten free recipes.
But, if you have IBS and are gluten intolerant as well, then yes, you'll have to avoid the other trigger foods, keep your soluble fiber level high, and be careful with insoluble fiber foods. What might be a good idea is to just this things this way at first until you're stable and feeling good. Even if you don't have IBS, this will help stabilize your digestive tract, and as you recover from any damage the gluten did to your gut the IBS diet will help things along in general. Then, once you feel that you're back to normal, keep yourself gluten free but try adding in foods that would trigger IBS (a big raw salad, coffee, something high fat) and see what happens. For celiac these things won't cause problems - for IBS, they will - and that will help tell you what's going on with your gut.
Also be aware that an insult to your gut - such as damage from gluten when you're gluten-intolerant - can actually affect the gut's nervous system and lead to the development of IBS. So, if this has not already happened, following the IBS diet while you get the celiac under control will lessen the odds that it will happen while you recover.
It is cheaper to order the Acacia in bulk because shipping costs drop for each additional item you order. Right now our prices are set (for foreign orders) at 9$ for the first item and $6 for each additional item. I'm actually trying to figure out a way to make a big bulk bag of the stuff with a special shipping price, because this is something other folks are asking for too. It's tricky, because foreign shipping is just really expensive, especially once you're at or over 3 pounds, and there's no getting around that. The Acacia will stay fresh for a long time, especially unopened (but opened as well). It will certainly keep for many months without problem.
Best,
Heather
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Heather is the Administrator of the IBS Message Boards. She is the author of Eating for IBS and The First Year: IBS, and the CEO of Heather's Tummy Care. Join her IBS Newsletter. Meet Heather on Facebook!
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even if you were eating gluten at the time of the celiac test, you could still get a false negative. And celiac has been found to cause the joint pain, headaches, etc. and other non-gut problems that you experienced.
If you can track this down, the February 2003 Today's Dietitian had an excellent article on celiac testing, the different types of celiac, the different types of tests, and the difficulty of getting any type of accurate diagnosis. I really, really wish that article was on-line because it's the best thing I've ever seen on the topic, and quite shocking.
- Heather
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Heather is the Administrator of the IBS Message Boards. She is the author of Eating for IBS and The First Year: IBS, and the CEO of Heather's Tummy Care. Join her IBS Newsletter. Meet Heather on Facebook!
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Quote: "Also be aware that an insult to your gut - such as damage from gluten when you're gluten-intolerant - can actually affect the gut's nervous system and lead to the development of IBS."
Being one who was positively diagnosed as being wheat allergic over 25 years ago, I never followed up on the tests for gluten intolerance. Now I am wondering, being mostly Irish, if in fact I AM. Guess that is something I need to bring up with the gastro next time there. If the biopsy endoscope test is anything like my colonoscopy from hell I'll have to have general anesthesia to get through it. Ug. I would hate to think that this IBS was caused from undetected celiac disease.
Thanks for the info Heather.
Kandee
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thanks heather
if you manage to find a way to get acacia in bulk to the U.K., then i think you'll become a millionaire (if you're not one already  ) have ordered two more packets of acacia and two lots (so 4 pots of peppermint caps) - think that should keep me going for a while!
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Heather, this is great info.! Thanks for teaching me, as always!
Katgirl: I would also add to be careful of dairy products for a while. The research I've done on Celiac suggests dairy can be a prob for folks with celiac until they get on track. Eventually dairy might be ok, might not. You also might be careful of soy and eggs for a while. There should be more info. regarding this on celiac.com. HTH and hope you begin to recover soon!
*hugs*
Ruchie
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Formerly known as Ruchie
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Kandee,
I just had my upper endoscopy this past week to test for Celiac. I was AWAKE for my colonoscopy so I made sure to be asleep for this one...even though I heard it isn't nearly as bad. I don't remember a thing! The prep is no biggie, no eating or drinking for 8 hours before the procedure...and no lotion or cream, no apirin for like 5 days before the test, that kind of thing. I say get it...you'll feel better knowing. I'll let you know my results when I get em'! Let me know what you decide 
*hugs*
Ruchie
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Formerly known as Ruchie
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"The most wasted of all days is one without laughter." -- e e cummings
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Hi Ruchie,
Well, you eased my mind A LITTLE, anyway. I just get this nervous twitch <G> even thinking about that tube down my throat, not to mention any pain involved.  When I went in for the follow up for the colonoscopy the gastro (head of the dept. of a well recognized med center here in So Cal) said I was one of a few that would need to be "knocked out" (not the way he put it) when I have a colonoscopy again. I do believe he would honor my request to do the same for the endoscope proceedure.........
By all means, keep us posted and I'll do the same.......
Cheers
Kandee
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it's a really good thing that you were totally out for the colonoscopy. That procedure, if it traumatizes the gut, could also lead to IBS. Not commonly, but it can happen. Basically anything that insults the gut to a severe degree could then lead to the development of IBS. So everything from an inflammatory bowel disease, to food poisoning, dystentery, abdominal surgery, pregnancy, eating disorders (especially bulimia), traveler's diarrhea, a rough colonoscopy, etc. all have the potential. It's well worth it to coddle your gut like a baby whenever possible if you're facing any one of these traumas and trying to recover.
- Heather
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Heather is the Administrator of the IBS Message Boards. She is the author of Eating for IBS and The First Year: IBS, and the CEO of Heather's Tummy Care. Join her IBS Newsletter. Meet Heather on Facebook!
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Shanna,
Just curious...what symptoms are you having that sound like Celiac?
Love,
Ruchie
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Formerly known as Ruchie
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ME TOO!
I cana't have any grains but rice...lets share food ideas!!!
good luck!
babycarrot!
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I have to have my upper endoscopy and colonoscopy done next Tuesday! Not something I am looking forward to and I'm not sure whether they're putting me out or not. I know I'm getting sedated, but not sure to what degree. I thought maybe if I stayed up the night before I might be able to fall asleep during the procedure!
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- Jennifer
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I tried that! I wish I hadn't stayed up all night...I needed the sleep...and they put me under anyway. I told them I wanted to be out and I wanted the anestheseologist there...it wasn't a problem. Hope it all goes well for you...let us know!
*hugs*
Ruchie
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Formerly known as Ruchie
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Hi Jennifer,
I hope all goes well for you, but I have to admit that I'm glad I'm not in your shoes. I'm scared to death of an endoscope after going thru what I did with the colonoscopy. But then I may be unique in the fact that before IBS I had a very high tolerance to pain overall. Once an IBS'er that went away and I have NO tolerance for pain no matter where it is in my body. It is rather embarrassing since I have to even tell my dentist who once was in ah of how much pain I could handle that he now needs to pull out the big guns to help with any procedure he does to me. I also need much more anesthetic, overall, to handle pain than a normal body. This is another puzzle piece I haven't fit into the IBS disorder.
If it's any help it is usually a given that most people just sleep thru the entire procedure and that the sedation is plenty adequate for most people so they don't even know what happened. I doubt it would be a good idea to loose sleep over it. You need to stay positive with no high anxiety levels or fatigue going into the tests. (Don't let people like me scare you since I'm an exception to the rule.)
There is ONE piece of advise I would give and it is based on my own experience of the colonoscopy experience. That is to tank up immediately after the tests on probiotics. With the "clean out" phase you are washing all the good flora from your intestinal tract and that needs to be replaced ASAP. When mine was over I couldn't figure out why I craved drinkable yogurt so much, but I downed it by the pints with no ill affects at the time. It was later pointed out to me why.
Good luck and I have no doubt you'll do fine.
Kandee
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Jennifer, Good luck, I had the same procedures done in Aug.
Have them put you out. I didn't feel or remember a thing.
Best of all it was the best sleep I have had in weeks.
Afterwards I was a little sore in my tummy region. Take it easy for a couple days, I stayed on blan foods for about 3 days after the procedure and began eating on Heather's diet plan and have been stable since. Remember you might not have a b/m for about 3-5days it's pretty normal for most folks. The best thing will be no bad results only good.
rooting for you and in my prayers. Sherri
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Hi Kandee,
Thanks for the encouragement. To be honest, I'm not sure that they're putting me out. Although they are doing the procedure in a hospital, it is being done in my doctor's office rather than the downstairs main portion of the hospital. I think I might call sometime this week to ask if I can be put out. My sigmoidoscopy was very painful for me.
I'm not really too worried about the tests themselves - just the IV that has to go in my arm! I have major needle phobia and get dizzy just thinking about it. My dentist has to give me valium and the gas just to get through the needle for numbing my gums. LOL
I'll have to look into probiotics, although from what I've read on the board, I don't think I'm very comfortable starting those. My body's done okay without them but maybe I'll do a little more research into them.
Thanks for your help!
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- Jennifer
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Hey Sherr,
Were you able to go to work the next day? I've only got one sick day left (and that's for the day of the procedure) and am worried that I might not feel well enough to go to work the next day, although I really can't afford not to.
I am actually looking forward to having my body "cleansed" so I can start over and try to stick to the diet as close as I can.
Thanks for your help!
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- Jennifer
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Jennifer, good luck with your procedures! Definitely have them put you out. Or in the words of my uncle after having a colonoscopy, "Go with the drugs!"
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"Anyone can exercise, but this kind of lethargy takes real discipline." -Garfield
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One having that proceedure will have drugs regardless. The question is will it be with a "general" anestisia where an anestisiologist is present the entire time, or an RN tech that does the IV with a combination of relaxers and drugs that put you in la-la land whereby you can hear and take orders but are not aware of it afterwards. Best to find out way in advance which it will be.
I DO like you uncle's advise!!!
Kandee
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Quote:
"If you can track this down, the February 2003 Today's Dietitian had an excellent article on celiac testing, the different types of celiac, the different types of tests, and the difficulty of getting any type of accurate diagnosis. I really, really wish that article was on-line because it's the best thing I've ever seen on the topic, and quite shocking."
Some years ago when I became semi-retired I gave up all the professional journals I subscribed to (darn it) so I don't have access to it. Maybe someone on the Celiac boards, a moderator possibly, could gain permission from the publication to post this one on line. We would sure like to know more and I do believe this is a viable subject given the number of people with IBS who are wheat intollerant and could possibly be celiac too.
Kandee
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Many years of C-IBS and pain too for past 2 years-
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ok so day 4 of the wheat-free diet!....
so day 2 and 3 weren't very good in terms of what things i ate...but its just going to take some time i suppose and cheking everything very carefully!
I can def see how the wheat has been causing problems tho...on sunday i went for a chinese buffet...i thought i had been extra careful but turns out some wheat managed to sneak its way onto my plate! anyways i felt awful for the rest of that evening and most of yday. today however, i have had a completely wheat/gluten/dairy free day and my symptoms have slightly improved...and im determined to stick to a strict diet!
will keep you updated on how things go...god i sound like a soap opera!
kat x
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Hi Katgirl,
Here are two websites with great recipes on wheat free food.
http://www.livingwithout.com/recipes_glutenfreebasics.htm and http://www.savorypalate.com
I hope these help you.
There are two excellent authors you might want to check out their books. Betty Hagman and Carol Phenster.
Good luck!
Cloudygirl 
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cloudygirl - thank you, i'll check them out!x
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Hey watch those chinese fast food places they say they serve grilled chicken for there bowls but the use wheat and other preservatives for the chicken to keep it soft.
Same thing with charboiling ask them before you order it.
If you make you own stir fry at home you can but La choy soy sauce it's wheat free to use in your stir fry.
Here is a website for wheat/free/gluten free mall.
www.glutenfreemall.com.
Good luck oh ya here's another for ya for frozen waffles.
www.wheatstonefoods.com they have wheatfree/gluten free waffles you can get at most whole food stores. Again good luck..
Sherri
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Sorry I didn't answer earlier.I was in a pretty bad way prior to the procedure. I needed a whole 4 days to recover and get back into the swing of things. My recovery from the gasterional infection It took a toll on me. By the time they decided to run the test what ever caused the infection had already left my body and 40lbs lighter. So the only thing my Dr. said I might of been was a real bad case of gasternitis in the bowel, big DDD. I was always a little IBS prone before nothing real big just occassional around that time of the month. Now I have to watch out for everything I eat. That post by Heather not to long ago on Gasternitis fit me to a tee. now take tht extra day or two if your in a bad way now, if your ok you should bounce back right away. Just take it slow for the next few days.
Wish you luck... Sheri
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Endoscopy is no biggie like the colonoscopy!!!!!!!!!!!!!!! Go for it!!!
As for the quote on insult to the gut, you may well be insulting yr. gut by eating the wheat...... Just think........maybe your problems w/be over if you are allergic to wheat............or at the very least........muchooo better!
Best of luck and
Marnie
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I had both test done in one month.getting ready for the one is the bad thing but the test it self was ok.then the other one wasn,t bad.so please try to relax an keep your self cool.I know that is had to tell some one. at my age I don,t like to be put a sleep but won,t have it done with out being put to sleep.it all comes out in the end ha .ha.
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Neta G.Yale
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yes you can go to work the next day as long as you get some rest the day you had the test.an ofcourse if they don,t fine anything.but I,ll say a pray for you an hope that will help.
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Neta G.Yale
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Thanks for the insight Marnie. I've been allergic to wheat for over 25 years so I know the ropes and avoid wheat. (I can do a little wheat about once a week with no ill affects.) Gluten is another story since it is in over 50% of all the foodstuffs out there and has MUCH more long term serious affects than a food allergy or sensitivity. Celiac desease is serious! Every look at the list of foods to avoid? It's scary. Avoiding just wheat is a peice of cake compared to all the many foods with gluten. Nonetheless, one never knows unless one is tested with the most reliable test for celiac, which, I understand it the endoscope.
Ok, since you all say it is not biggy, I'll GO for it!!!
Thanks heaps, and happy holidays....Kandee
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