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Re: ANOTHER COLLEGE GIRL-- wants to help new
      #23949 - 10/19/03 11:06 PM
barb n

Reged: 10/14/03
Posts: 65


Hi Kiks -- Thank you for your thoughtful and informative and kind post. I would like to respond more fully but don't have much time just now so maybe in a day or two. I just wanted to thank you and mention a couple things. We think our daughter might be wheat intolerant, so alot of things that people are suggesting won't work right now -- but I think we have enough other stuff.... She has not been tested (yet) for any of this - for certain reasons. So right now she is avoiding wheat. But if this IBS diet continues to work for her, maybe she will try adding some of it back in, since so many soluble fibers are wheat -- it could be the problem was more IBS related than wheat related. It might be really nice for her to email with you, I will ask her if she would like to -- it is hard that other people really just don't understand what she has been through. Thank you for that offer. I am very involved right now because she has been in a such a crisis state and this time last week it looked like she would have to leave school - maybe. So we are trying to help her stay there, really. But if this diet and the fiber capsules continue to help her so much I think she may be fine and I will certainly back off as soon as I can. She is very very good at managing things on her own -- once she knows what she needs to do and has some food to work with. She's very disciplined because she is inspired to be healthy and so tired of being sick.

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Barb - have your daughter tested for celiac BEFORE she new
      #24007 - 10/20/03 12:09 PM
HeatherAdministrator

Reged: 12/09/02
Posts: 7799
Loc: Seattle, WA

eliminates wheat/gluten from her diet. If she's gluten intolerant, and she's been avoiding gluten, her blood won't have the gluten antibodies and she'll test false-negative.

- 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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Re: celiac testing right now impossible - maybe ever new
      #24045 - 10/20/03 05:40 PM
barb n

Reged: 10/14/03
Posts: 65


Thanks, Heather, for your comment. We looked into celiac disease somewhat a few months ago, when it seemed like most of her stomach (not bowel) "episodes" were after eating heavy wheat things (lasagna, bagel and cream cheese, pizza )(Previous to this onset of C and stomach problems 8 months ago -- she ate those things without a problem, but did always have a sensitive stomach -- but no problems with C )....... We are realizing now that all those things which caused big problems also had cheese so....maybe that was the problem... or the combination. ( She was living on low fat yogurt for breakfast ( or whey protein powder ! drinks )till we found your website -- now she has stopped all dairy -- she didn't notice any bad reactions to the yogurt and shakes but maybe it was causing the ongoing C problems in a more subtle way (?)..... For a while, we thought we had found the answer with the wheat, as she improved quite alot on that for about 2 months, but she has been almost totally avoiding wheat and then
started having way more C problems lately. So far (only 5 days) she seems to be responding rather dramatically to the fiber supplements (she is still taking a low dose) and doing the IBS diet as best she can. There is no way she could do an endoscopy now. She is barely managing school and all this diet and sick stuff. She is truly terrified of invasive medical procedures-- you should see what it took for me to get her to do just a blood test -- that's a long story, she had a very very bad experience with a blood draw when younger -- and it would stress her out completely, which is the last thing she needs. She is also terrified of medication (like being put under) so I don't want to put her through it unless I am really convinced there is no other alternative. When we looked into the testing a few months ago -- it seemed that the endoscopy is not even really definitive -- seems like alot of torture for something you cannot be sure of. Why wouldn't it be ok to test and experiment with her reaction to wheat - the same way you all are doing with all foods? The whole celiac thing is confusing and disturbing, so extreme -- i really don't know what to do with that. I am kind of leary of western medicine, i have to say. I know it has a place -- but you don't have to look far (on your own message board) to see how off base some doctors can be sometimes, and how often they can make things worse. I really hope I don't offend anyone -- these are just my own very personal feelings, I realize alot of people would not agree with me on this -- i'm probably too extreme in that direction. For all those reasons, I am leary of torturing her with alot of scary tests, when it seems like trying the diet ideas and seeing how she reacts should be good enough, if they work. Of course -- if she doesn't improve dramatically, then I think we need to pull her out of school and do some testing while she is home. Does that make sense?

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Re: I agree with Steph new
      #24050 - 10/20/03 06:35 PM
maryh

Reged: 10/02/03
Posts: 192
Loc: IL

I agree totally for her to be tested for diabetes! Weight loss, increased water intake, increased urination are cardinal signs. I am a diabetic with IBS-so they can exist together. I know you don't like western medicine-but it is really necessary at times!!! Get some testing done Mary

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Whatever doesn't kill me will make me stronger!

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Re: I agree with Steph new
      #24084 - 10/21/03 08:34 AM
Jennifer Rose

Reged: 04/02/03
Posts: 3566
Loc: Fremont, CA

I can definitly relate to not wanting to get the medical tests done. I've had a sigmoidoscopy, barium enima, flouroscopy with a bowel series, and lots and lots of blood tests. When I went in to my GI Specialist a couple weeks ago, I was determined to tell her no more tests. Well, she raised a very good point that she couldn't prescribe me any medication that might help me unless she is thoroughly convinced that I do not have any other disease that might be worse than IBS. The medication she might prescribe me might make it worse if it's not just IBS. So the end result was that I walked out with an appointment next month for an upper endoscopy and a colonoscopy. Although I'm very nervous about having to get an IV in me, I know that these are my last two tests and then the GI Specialist and I can work on seeing what works and what doesn't with my IBS.

Getting blood tests done is also a horrific experience for me too. I have a phobia of needles (we can't figure out why) and am very lucky that I have such a wonderful mother that goes with me everytime to get my blood taken. Everytime I need one, I can't eat for the entire day (have been known to be so upset that I throw up) and have to lie down as I faint everytime I'm upright. Even when I'm lying down, I end up sobbing uncontrolably for a good 20 minutes before, during, and after just because of all the built up stress/tension - not to mention my IBS flaring up.

Although it is ultimately you and your daughter's decision, I would really recommend getting the testing done to rule out any really serious problems that she may have. It will put your and your daughter's mind to rest knowing that it's only IBS. I'm very thankful now that my mom has made me go through all these tests, even when I've protested and made excuses why not to do them.

Also explain to your doctor about your daughter's fear of bloodtests and sedatives. He/she may be able to come up with a different alternative or be able to run all the tests on one vile of blood maybe.

--------------------
- Jennifer

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Re: still working on helping my suffering college girl - thanks for any help new
      #24200 - 10/22/03 08:39 PM
Kristen

Reged: 08/07/03
Posts: 9
Loc: Barre, VT (Home): Syracuse, NY (School)

Hi Barb

This sounds all to familiar! I am in college (senior at Syracuse University), but I was diagnosed with IBS my sophmore year when I too was living in a dorm. Like your daughter, I was losing a ton of weight and my mom was going crazy trying to figure out what to do for me. My mom was a wreck...she was crying also and said she hated to see me so tortured. It is torturing and I know where your daughter is at right now. It feels like an uphill battle, but it can get so much easier if she talks to people about it. Please have her email me and I can try to help answer some of her questions and explain what I did. To give you an idea of how sick I was, I went from about 107 to 88 pounds in less than a year (and now I am at 105). My mom was beside herself. The best thing she did for me was support me and offer to help me in any way possible. She would send me homemade breads from Heather's book and she would email Heather with questions.
I think you should contact her because she knows exactly where you are comming from. She went throught the same thing and I know she would want to help you. Her email is Taxi275@aol.com and her name is Robin. She will have lots of advice and support for you! My email is KrisBact7@aol.com and feel free to contact me anytime, and tell your daughter to also because I would love to help her!

I hope to hear from you soon
Kristen

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