Gluten intolerance?- Please,Desparate for answers
#122382 - 11/16/04 10:55 AM
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Augie
Reged: 10/27/04
Posts: 5807
Loc: Illinois
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I have had the work done to see if I am Celiac or not. Well, had the test done twice. Both times the first two antibody tests came back post, and the endomysial tests came back neg (this is the one most specific for celiac). The endoscopies both came back neg as well.
All this being said, my GI doc still believes I should be on a Gluten Free diet. I don't want to be on this restrictive diet if I don't need to be. I have been on a GF diet for a year, and still suffer pain and symptoms, which the doc attributes to IBS. I know you can have both gluten intolerance and IBS.
Has anyone else out there had this situation? Did you decide to go on a GF diet, and if so did it help. I know some have tried the GF diet, but did you go back to just the IBS diet?
If anyone can get in touch with someone who has had this experience I would greatly appreciated. I am sick over the confusion to this shuffling back and forth for over a year now: yes you can eat gluten from one doctor, and no you can't from another. I don't know who to believe or trust. And my body is so stressed over the inconclusiveness. I am desparate to hear from others and their experiences and what they found most helpful.
thank you all.
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~ Beth
Constipation, pain prodominent,cramps, spasms and bloat!
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but I did have a false positive once. The doc recommended a biopsy which I postponed and I went on GF for awhile and had no benefits. I think doctors were/ are just into Celiac right now as a pat answer for all tummy trouble. I heard it is mostly prevalent in Irish or Italian heritage which I am not.
I had a second blood test a couple years after the first and it was totally negative. If you have been gluten free for a long time and it hasn't worked I'd say you don't have Celiac.
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IBS-A for 20 years with terrible bloating and gas. On the diet since April 2004. Remember this from Heather's information pages:
"You absolutely must eat insoluble fiber foods, and as much as safely possible, but within the IBS dietary guidelines. Treat insoluble fiber foods with suitable caution, and you'll be able to enjoy a wide variety of them, in very healthy quantities, without problem." Please eat IF foods!
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Thanks, I don't care if people dispute the doctors. I've come to learn they aren't Gods. Not nearly Gods. Just think they are guessing along with the rest of us.
Problem is my 2 tests came back positive twice, but Kandee told me that sometimes they can come back positive when other things are going on.
Anyone else have this happen to them? I really am frustrated and confused at whether I can eat gluten. I want to so bad. I'm so wanting to try those antidepressant brownies.
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~ Beth
Constipation, pain prodominent,cramps, spasms and bloat!
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Maybe you should ask your doc to run the next test- which I think must be a biopsy. It seems wrong that you can't know for sure if you have it or not. How long are you supposed to be able to stand waiting for a definite answer?
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IBS-A for 20 years with terrible bloating and gas. On the diet since April 2004. Remember this from Heather's information pages:
"You absolutely must eat insoluble fiber foods, and as much as safely possible, but within the IBS dietary guidelines. Treat insoluble fiber foods with suitable caution, and you'll be able to enjoy a wide variety of them, in very healthy quantities, without problem." Please eat IF foods!
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I went to see a naturopath for allergy testing a couple of months ago, about 3 months before I was 'diagnosed' with IBS. The allergy testing showed I was intolerant to a wide dose of foods, gluten being one of these. I stopped eating gluten (along with dairy, soy, red meat, nuts, caffeine, alcohol and certain fruits and veges) and my BM gloriously returned to normal  My problem was that I still suffered (and still suffer) bloating and gas.
I recently started the IBS diet and have been incorporating gluten back into the diet. Unfortunately my BM have completely ceased and I'm not sure whether its the eating of gluten again thats done it or the drop in insoluble fibre intake. I'm sorry I can't give you anything more definitive!
My plan of attack from here is to go back to a GF diet while also doing the IBS diet (gluten free bread is actually quite yummy!). Once I'm stable again (pray to g*d it happens soon!) I'll start incorporating gluten again and see how I go. I actually think it may be wheat not gluten thats my problem as there is hidden gluten in so many things and I was no doubt inadvertently eating it without realising, and still remaining stable.
I've had an endoscopy and the results for ceoliac were negative, so I too am not keen to cut out gluten if I don't need to. I think its all about experimentation, a little bit at a time. I can sympathise 100 % with your frusturation about conflicting information and not knowing what to do! I think the more I worry about IBS and diet the worse my symptoms have become 
Good luck, I'll keep you posted with how I go.
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~ Live life, don't let life live you ~
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Hmmm. I'd try going off the GF for a couple of weeks whilst being really careful to follow the IBS diet etc. If you get decidedly worse, then I'd say you're gluten intolerant. If not, then it's unlikely.
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I agree.
#122695 - 11/17/04 06:02 AM
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atomic rose
Reged: 06/01/04
Posts: 7013
Loc: Maine (IBS-A stable since July '05!)
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If you've been following a GF diet for this long with no real improvements in your symptoms, I would try the other 'extreme' for a couple weeks and see how you feel. Fortunately, pasta and bread are a heck of a lot cheaper when you're not fiddling around with GF varieties, so it won't even be an expensive experiment.
If you feel worse, then switch back to GF and figure that it's true that you're intolerant. If you feel *better*, then you'll know that there's no need to keep eating GF, which will open up your options significantly. 
Good luck!
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I've had the biopsy and it came back negative as well.
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~ Beth
Constipation, pain prodominent,cramps, spasms and bloat!
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Non GF bread, pasta, cereals... And how much in one day?
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~ Beth
Constipation, pain prodominent,cramps, spasms and bloat!
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I'm no expert at this, but I also agree... you should do a little experiment with non-GF food and see how you feel. Good luck. I hope you feel better soon.
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~ Rachel (IBS-C)
If life hands you lemons, make lemonade!!
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