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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.


Gluten-Free since September 15, 2005.

Peanut-Free since July 2006.

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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.


McDougall diet (low fat vegan) since 6/00

Gluten free since 1/6/07

Soy free and completely casein and egg free since 2/15/07

Yeast free, on and off, since 3/1/07 -- I can't notice any difference one way or the other

Enterolab results -- 2/15/07

Fecal Antigliladin IgA 140 (Normal Range <10 units)

Fecal Antitissue Transglutaminase IgA 50 (Normal Range <10 units)

Quantitative Microscopic Fecal Fat Score 517 (Normal Range <300 units)

Fecal anti-casein (cow's milk) IgA antibody 127 (Normal Range <10 units)

HLA-DQB1 Molecular analysis, Allele 1 0501

HLA-DQB1 Molecular analysis, Allele 2 06xx

Serologic equivalent: HLA-DQ 1,1 (subtype 5,6)

Fecal anti-ovalbumin (chicken egg) IgA antibody 11 (Normal range <10 units)

Fecal Anti-Saccharomyces cerevisiae (dietary yeast) IgA 11 (Normal range <10 units)

Fecal Anti-Soy IgA 119 (Normal Range < 10 units)

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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!


Celiac blood testing negative July 2007

Confirmed diagnosis of wheat allergy by skin test Dec 2007

Gluten-lite since July 2007 (didn't know all the hidden sources of gluten)

Gluten-free since December 2007

Life Long Symptoms

Extreme fatigue--needing 10-12 hours of sleep and still woke up exhusted

Allergic to everything--allergies remained out of control despite shots and strict enviornmental controls in my home.

Severe "sinus" headaches

More Recent Symptoms

IBS symptoms

Severe stabbing stomach pains that started 6 months before diagnosis of wheat allergy.

In my heart I feel it is more than an allergy and that I am gluten intolerant. This is based on my how eerily my childhood maladies match most celiac's histories, and my more recent increase in the severity of my usual symptoms and new digestive symptoms that have already started to subside on the gluten-free diet.

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