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roxnhead

Latent Celiac Disease?

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Hello Everyone!

New here, although I've been reading post for awhile now. I was pre-diagnosed as a Celiac thru my blood test (all negative) with exception IgA Gliadin Ab IgA 79 High( Normal 11-17). Just received results from biopsy and they were Negative! G.I. said I do Not have Celiac disease. I asked him if this means I am gluten sensitive because being gluten-free for just this week has began to resolve symptoms? He stated that I am either sensitive to gluten or not!(that blood test was a false -positive) That I am not showing damage to intestines therefore I am not a Celiac. He then said that if the gluten-free diet is making me feel better to continue, perhaps I am a Latent Celiac! This guy is all over the place-I believe he really doesn't know! My question is "What test can I have done that can assure me that I am on the right track?" I continue to live gluten-free (trying), but wonder if there is a differential diagnosis that I may be missing! My symptoms are so varied- has anyone had immediate weakness-brain fog after ingestining a Granola bar? (Fiber One)or any other gluten-can symptoms happen this fast? No food allergies. Eye Pain, Neck Pain, extreme fatigue, weakness,hard to hold arms over-head, shortness of breath, insomnia,restless legs,numbness & tingling in feet-toes---- these are just the most prominent symptoms. My most common symptom of course is diarrhea. I have no pain, no stomach issues-except bloating. If any of these symptoms sound familiar, then my dreams have becme true- I am a Celiac! Being sick and on disability for 7 mos now and can't wait to get back to work! Of all the disease's that I could have had- cancer -survivor 5 years, lupus, lyme, ms,-I would be very happy to confirm this diagnosis.

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If they didnt take a lot of samples from your intestines in a variety of places, they could have missed damage. Often it is patchy. PLUS - do ask for a copy of ALL of your labwork and the biopsy interpretation. You will want these for your records and many have found out that the biopsy was POS but their doctor didnt know how to read them correctly. Leave no stone unturned. :)

You can ask for genetic testing to see if you carry either of the primary Celiac genes. This does not dx Celiac, but it could be one more piece to the puzzle for you in deciding if you feel you have Celiac.

If you can afford it, you can also use Enterolab, to see if they detect gluten intolerance from your stool. They also offer genetic testing if your doc. says no.

If the diet is working, why question it? :rolleyes:

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Yes, thye will report marsh 1 and 2 and parts of 3 as negative for celiac. I the past, they reported only total villousrophy as positive for celiac, aand flattended villi was considered negative.

I personally think you are in the early stages. That is why they do not detect all the t findings on the samples, and that is why only tha antigliadin test is positive.

There are some abstracts on pubmed about longitutinas studies of retives of diagnosed celiacs. First their antigliadin turned positive, then afte a long time the other tests turned positive.

The other possibility could be you are HLA DQ1, with mainly neuro symptoms, and lots of them, and little or no visible damage to the gut. Antigliadin antibodies are typical in neuro gluten intolerance.

They even found another ttg in those cases, the ttg6 antibody. Google for Hadjivassiliou and you find more.

nora

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