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Please Help - If I Dont Have Celiac...


blondebombshell

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blondebombshell Collaborator

besides a food elimination diet, is there ANY valid test that i can have done to tell whether or not i have food intolerances and what they are? i keep getting hives on my legs only and i always thought it was related to that of gluten but 'apparently' i dont have celiac. years (since toddlerhood) of constipation, and for the past 2 years - the isolated hives, i definitely thought i had celiac. endoscopy was negative and bloodwork was too. but when i didn't ingest wheat after a few months, i actually 'felt' better. however, i would like to really get to the bottom of this once and for all.

any help?


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mommida Enthusiast

You have already had a positive response to the elimination of wheat from your diet. That is a scientific diagnostic test. Sometimes you have to take what you can get for help with this or any disorder. You shouldn't have to feel that you need to justify why you can't eat wheat.

It seems to me that Celiac/DH/gluten intolerance have suffered some bad press. Too many people (doctors included) are considering it as a fad diet.

You can try allergy testing. It was very expensive for us. It proved my daughter is not "allergic" to anything. Allergy testing can not prove Celiac/DH.

There is genetic testing for the common genes associated with Celiac/gluten intolerance. It is not as accurate as the 98% they (Prometheus labs)say it is.(Especially if you fall in the 2% miss range.) Human error in handling the blood draw and sample is estimated at a 30% error rate.

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    • trents
      I would say two things and then I'm done. Many celiacs have been misdiagnosed for years with IBS. Testing for celiac disease requires regular and significant consumption of gluten for weeks/months in order to be valid.
    • RMJ
      Can the rest of your household eat the food with gluten instead of getting rid of it? Can you create one shelf, or partial shelf, for your new food in the pantry, in the fridge and in the cabinets as a start? My husband is not gluten free so we each have a cabinet, and separate shelves in the fridge. If we have to share space the gluten free foods go on the upper shelves so crumbs with gluten can’t fall onto them. Good luck!
    • The Logician
      Thanks for the advice, if my sensitivity comes back i’ll do that but I am 74, in good health for my age and probably have been sensitive to gluten for over 30 years the beginning of which I didn’t even know or suspect It was gluten. I’m seen by my doctor every three months with fasting labs, he knows I avoid gluten and has never suggested I should be concerned. It is quite possible a doctor did those tests on me 30 years ago, I just don’t remember, if they did and they were negative that’s why I wouldn’t remember. If you are interested I’ll keep you posted, but from what i’ve read there is no cure for genetic celiac disease and right now I’ve never felt worse than diarrhea eating wheat or better than I do now eating wheat. If there is no cure I doubt my episode with an antibiotic is the cure which means I don’t have celiac. This antibiotic may be a cure for sensitivity however….i hope.
    • trents
      Diarrhea is a classic symptom of celiac disease and may be the only symptom many people experience until damage to the small bowel lining becomes severe enough to spinoff other health issues. There are many with what we call "silent" celiac disease whose symptoms are so minor or occasional like yours that they blow them off. The only way to distinguish between celiac disease and NCGS (Non Celiac Gluten Sensitivity) is to get tested. I strongly recommend that you request your doctor to run these two blood antibody tests: total IGA and tTG-IGA. The antibiotic seems to have put you into some kind of remission at the present time but that may not last.
    • The Logician
      Not that I can remember but my reaction has never been more than diarrhea and I probably ate a lot of wheat products for years not knowing I was sensitive to it. Dr. never tested me because he attributed it to IBS. 
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