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    Do you have questions about celiac disease or the gluten-free diet?

BarbaraAnn

Negative Diagnosis But Evidence Says Yes

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Earlier this year, I had a blood test for celiac disease disease done..and endoscopy because it was clear wheat was giving me a problem. Results say "Benign small bowel mucosa without specific histopathologic abnormality. Morphologic features of celiac sprue not seen". In other words, no celiac disease. Still, I've gone off wheat because it gives me GI distress. So I feel fine (except when I cheat).

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I had baby colic and lots of tummy aches when I was a child but around puberty it all went away. I'm 56 and problems developed about 15 months ago. Is it possible that estrogen provided some sort of buffering effect until menopause hit?

My daughter apparently has celiac disease - doctor says her blood test was negative and they screwed things up, doing a colonoscopy but not an endoscopy (we didn't know better at the time) - but she clearly has to be gluten-free - is finally getting health after 2 years of being quite sick. We ended up doing the diagnosis using web resources.

So.. question is...how important is it to go gluten-free if I feel OK as long as I am wheat-free? Because my daughter is gluten-free, I know the extra hassle involved in being totally gluten-free.

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It seems like with your daughter probably having celiac, it's highly likely that's what you've got, too. I would go gluten-free if I were you. You may feel much better, but if you're not truly gluten-free you'll be setting yourself up for a lifetime of health problems.

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Were you eating gluten up to the time of your tests? If not, that could cause false negatives. You also could be reacting but the damage hasn't worked itself up to the level of giving you a positive result. (See https://www.enterolab.com/StaticPages/EarlyDiagnosis.htm)

How do you react if you have barley or rye? I guess that is a simple way of finding out if it is wheat or gluten.

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I'm kinda in the same boat. Blood tests for celiac negative, and as a result, they won't do an endoscopy. (I probably could've talked them into it if I hadn't just had one that looked for an ulcer.) I kept persuing it, and was able to get food allergy testing that showed only a wheat allergy. DH thinks I should take that as a sign that only wheat is the problem. But I'm going to stay gluten free and then maybe challenge it with some barley later and see.

I'm very new to this diet, but so far, gluten-free isn't that much more of a pain than wheat free. I never did like rye, and most stuff with barley seems to also have wheat. The only thing that is a pain for me, is all the corn and rice based cereals with barley extract. Why, food manufacturers, why!

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I just had my kid retested for celiac disease and we are waiting for the results.  Her doctor does not hesitate to test since I have a firm diagnosis.  I can also say that my PCP and GI  never hesitate to check for other AI issues either.  They know that you can develop more than one autoimmune disorder.  Better to catch it early before damage!   If you get an endoscopy, be sure to do a gluten challenge 2 to 4 weeks prior or your result will be negative!  
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