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Gi Said. I Didn't Need To Be Gluten-Free

Libra1952

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Libra1952 Newbie
Libra1952
Posted

New to this, but 10 years ago diagnosed with biopsy that I had celiacs disease.All that was said by my gastrologist was as long as you dont start loosing weight without dieting and have cronic diarrhea no need to go gluten free.Well 10 years later bones, mustles, anemia to name a few are driving me nuts!!! And oh yeh still heavy and no diarrhea!!! Anyone else go through this??

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kareng Grand Master
kareng
Posted

Sorry. I split this post off because it needed its own thread. My spell check messed up the title. GI not Gina! I'll see if I can get it fixed

mushroom Proficient
mushroom
Posted

Welcome to the forum, libra, where you will learn that your GI is not the only one to have given such unfortunate advice. I think (trust / hope) that it is finally coming to an end, but there are still some old school types out there who refuse to update their knowledge.

I am so sorry that you were given and followed this advice, and have now suffered its consequences. As you have discovered, gluten can still be doing its damage even if you are not suffering overt symptoms. It can be very sneaky that way. I hope you have now found yourself a good doctor who is taking care of you. Have you had your tests rerun? Have you had nutrient testing for key vitamins and minerals? :)

Perhaps most importantly, have you gone gluten free and are you starting to feel any better? Please talk to us some more and let us know if there is any way we can help you.

shadowicewolf Proficient
shadowicewolf
Posted

this is one of those moments when we need a facepalm emotion. Ugh, doctors huh?

Please tell me you are gluten free, there is no need to put yourself through all that. :(

tarnalberry Community Regular
tarnalberry
Posted

Your GI was entirely, completely, wrong. Like malpractice level wrong. Even for the level of understanding of the disease 10 years ago.

SMDBill Apprentice
SMDBill
Posted

I agree with the "malpractice wrong". I wonder if they put any of that advice in writing so you'd have grounds to act on other than he said/she said. That's ridiculous advice for a celiac patient. There are no caveats on when to and when not to eat gluten for celiacs. You can't...period.

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      By Samanthaeileen1 · Posted

      Okay that is really good to know. So with that being positive and the other being high it makes sense she diagnosed her even without the endoscopy. So glad we caught it early. She had so many symptoms though that to me it was clear something was wrong.   yeah I think we had better test us and the other kids as well. 
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      Am I nuts?

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      One doctor suggested it, but then seemed irritated when I asked follow-up questions. Oh well—
    • trents
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      @GlorietaKaro, your respiratory reactions to gluten make me wonder if there might also be an allergic (anaphylaxis) component at work here.
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      Am I nuts?

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      Thanks to both of you for your responses!  Sadly, even after several years of very strict gluten avoidance, I remember the symptoms well enough that I am too frightened to risk a gluten challenge— heartbeat and breathing problems are scary— Scott, thank you for the specific information— I will call around in the new year to see if I can find anyone. In the meantime, I will carry on has I have been— it’s working! Thanks also for the validation— sometimes I just feel crushed by disbelief. Not enough to make me eat gluten though—
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      Welcome to the celiac.com community, @GlorietaKaro! As Scott indicated, without formal testing for celiac disease, which would require you to have been consuming generous amounts of gluten daily for weeks, it would be not be possible to distinguish whether you have celiac disease or NCGS (Non Celiac Gluten Sensitivity). Their symptoms overlap. The difference being that celiac disease is an autoimmune disorder that damages the lining of the small bowel. We actually no more about celiac disease than we do about NCGS, the mechanism of the latter being more difficult to classify. There are specific antibody tests for celiac disease diagnosis and there is also the endoscopy/biopsy of the small bowel lining. Currently, there are no tests to diagnose NCGS. Celiac disease must first ruled out. Researchers are working on developing testing methods to diagnose celiac disease that do not require a "gluten challenge" which is just out of the question for so many because it poses serious, even life-threatening, health risks. But we aren't there yet.
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