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Celiac Vs. Ibs
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13 posts in this topic

Anyone out there diagnosed with IBS or another GI-related disorder instead of celiac disease when you thought you had celiac disease?

I recently had a biopsy that came back normal, so my GI doc is going to look into other disorders. I've read wheat can be an IBS trigger food, but I'm just curious to see if anyone else had "text book" Celiac symptoms with no positive diagnosis.

Thanks for your stories.

billy

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I've been diagnosed with ibs for about 13 years.

My daughter was diagnosed with celiac by genetic testing.

We are on a gluten free diet (about 9 months) and doing a lot better.

Didn't have positives on the bloodwork tests. Staying on gluten for the rest of the testing was not a healthy option. My daughter was hospitalized for dehydration, she was about 17 months at the time. I have to be healthy enough to take care of my 2 kids, not stuck in the bathroom.

Laura

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:( personelly billy--i feel IBS is just something a doctor tells us when they really dont know what is wrong :P ----i was diagnosed with IBS for years and years and the only thing that has helped me is going gluten-free---besides that--the more i read the more i find things that click in my head and i go---wow, that is me-----celiacs is real to me--IBS is the same as telling me---you have a virus :angry:---i agree with laura-----i want to be healthy enough to have a life and not be stuck in the bathroom :rolleyes: ---deb
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I was told that I have IBS for at least 10 years as well as spastic colon and many other things, but finally in March of this year diagnosed with celiac disease. I guess what bothered me the most is that you know something is wrong, and the doctors keep giving more pills, not doing tests as I feel they should. After being diagnosed with celiac disease, I was so good not trying to get glutened (as we all know, this is a huge learning experience) but kept on getting sick. Until October, after having 5 attacks, they finally realized that it was my gallbladder. Now I feel wonderful, healthy and will defintely stay away from gluten. (my general doc. told me to go ahead and try eating something with gluten and see what happens. What is she goofy?) :angry:

Best of luck to all

Linda

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I've only been diagnosed as IBS, for 8 years now.... I had some blood tests for Celiac and they came back normal. Today I sent in my genetic testing for Entero Labs so I will know more in a few weeks. However, the only thing that has helped me is going gluten-free. I tried everything else, drugs, diet changes, lactose changes but nothing helped. I went gluten-free 4 weeks ago and all my symptoms are gone.

So the doctor can "label" me IBS or anything he likes, but I'm gluten-free, period.

Susan

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IBS= I Be Stumped

This quote came from a doctor at the NIH Conference on Celiac Disease!!! I thought it was hillarious, just thought I would share.

I too was given that diagnosis for a while. It is just a cover for the doctors not knowing what in the heck is going on with your body.

-Jessica :rolleyes:

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My GI doc told me that I had IBS years ago but symptoms continued to get worse instead of better, even when staying away from "trigger foods."

My biopsy just came back a few months ago as normal. My son's blood test was negative for celiac disease, even though we both have a LOT of celiac disease symptoms. His are not as severe as mine are now but are close to what mine were at his age (13).

I think I have finally elimated all the foods that bother me and WOW, I finally feel good. I have even faced the fact that even though all the tests show nothing physically wrong, I will never eat mainstream again. I fianlly feel good and I am now realizing how long I didn't feel good.

My GI doc and PCP looked at other possibilities - all came back normal. Do what works best for your body; do what you need to do to finally feel healthy again.

-Kate

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It's mentally comforting to hear everyone's responses. I've been fighting this phantom celiac disease for the past four years...taking myself off gluten, putting myself back on, taking myself off again. And when I finally got sick enough to go to a specialist, all tests come back normal. Just today I had fajitas and cake thinking "I'm not a celiac" and now I feel horrible. It's hard taking something out of your diet (especially when there's not much there to begin with...I'm a vegan) when a doctor can't tell you what's wrong. What a frustrating thing!

billy

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I was diagnosed IBS when I was 16. That was 16 years ago and the doctor did nothing but listen to my symptoms, push around on my belly and send me home. No tests, no meds, no special diet, nothing. I was told I just had to learn to live with it. I temporarily seemed to get better, although it never went completely away, then after I got married and pregnant at 22 I started getting progressively sicker. Ten years later I am gluten free, no thanks to any of the doctors I saw. I know there are great doctors out there, but I was never blessed with one for myself! My children have seen some wonderful doctors at out local children's hospital though! Makes me wish I were a kid sometimes, so I could get me a good doctor. Belatedly (last month) my own primary care doctor said he would request that my insurance cover a referral to a teaching hospital like Stanford, UCLA or UCSF. I told him not to bother, since I would have to go off the diet to repeat the tests and I am not willing to do that. I know I have celiac disease and that is enough for me. I know my kids have it and that is enough. The schools have been cooperative, the other doctors who see my kids for other issues have been supportive of the diet, and we are all adjusting to the gluten-free life wonderfully. I am not going to make myself sick once again, just to prove to some doctor out there that I have celiac disease, not IBS!

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I agree with all the answers here. My bloodwork came back negative, too. But i have to say i already was glutenfree for about a week, before doing the bloodwork. But i told that to my doctor, that you shouldn't do that and he answered: 'Oh no, that should be fine.' Yeah, very FINE. I knew right from the start, that it's negativ. He just doesn't have a clue. First he thought, it's this reflux disease (whatever it's called), then he suggested IBS. When he told me the bloodtests are negativ i told him, that i started to go glutenfree already and i'm feeling a lot better. His answer: 'Hm. Strange...' Tell you what, this doctor doesn't have a clue, whatsoever. Just yesterday i had an Amstel light accident and i felt horrible today. I'm staying glutenfree and nobody is ever going to change that. I feel so much better since going glutenfree in july AND i'm doing the Enterolab tests in a few weeks. I heard a lot of good things about them and the best of all: You don't have to go back to glutenfood.

Stef

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Well IBS diagnoses stands for unexplained diarhea. Thats like saying every airplane is a UFO.

The big moron (oops I meant to say gi doctor) said I was "too young to have celiac" and not to worry about being on a gluten free diet for almost 3 months before the biopsy, "because the test was so sensitive that they would be able to catch it if it was c d."

I need a refund!

Laura

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My GI specialist actually admitted to me that a lot of her IBS patients put themselves on the gluten-free diet and feel better. Hmmm...what would this suggest? <_< She says that she has only seen about 5 true Celiacs in her practice. The way she defines a true Celiac is total absence of villi. I tried explaining to her that the beginning of damage is still Celiac Disease, but it was like talking to a brick wall. She still says it's IBS, but I know better.

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I have been gluten-free with a couple of "lapses" early in the time since July 30,04. To date my chief improvements are more energy and better sleep. My digestive problems remain. I suspect that they may have more to do with post gall bladder surgery problems than with celiac just now. I have been told I have ibs since the 40's, but had digestive problems since early childhood. Am now 76. In early childhood mostly constipation. Beginning in adolescence, alternating diarrhea of a very painful kind, not watery passages, but formed stools very painful to pass, all day long . This would come on periodically. From what the rest of you say of your symptoms, I am beginning to doubt if I actually have celiac disease, but the diet is a healthy one. I have achieved needed weight loss and the benefits named above. I plan to stick with it. Cheers, Ruth S.

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