Pabb is absolutely correct. They need to rule out IgA deficiency, a condition where one just doesn't make IgA, or makes significantly less IgA than 'normal'. There is an increased association between celiac disease and IgA deficiency. IgA antibody tests are not reliable tests for those who don't make IgA because it may cause false negative results!

So... they should either test Total IgA, to be sure you are not IgA deficient. OR... they could test for anti-tTG IgG, or anti-endomysial IgG, which are available tests. Failing to rule out IgA deficiency is a common pitfall in diagnostic testing.

Celiac Disease and Immunoglobulin A Deficiency... by Kumar, et al.

Selective IgA Deficiency -IDF Patient/ Family Handbook


I am not convinced celiac disease has been properly ruled out... because
1) Your biopsy results are suspicious to me, showing mild chronic ileitis with slightly flattened mucosa in the lamina propia, terminal ileum
2) They haven't ruled out IgA deficiency which could cause false negatives on your blood work.


But.... beyond that... your very high antigliadin IgG should not be dismissed!!! For many, many, many of us, a positive antigliadin IgG is the ONLY clue we had that gluten was our enemy. It DOES indicate gluten sensitivity. My daughter had an isolated positive antigliadin IgG of just 30, and has benefited hugely from a gluten free diet.

This gets into the definitions of gluten sensitivity vs. celiac disease.

Celiac disease, by definition, requires biopsy evidence of flattened villi. This flattening is caused by autoantibodies, anti-tTG, which attack the intestinal villi. When these autoantibodies are present, there is 95% or better odds that damage will be found on biopsy. It should be noted that up to 20% of those with biopsy proven celiac disease do not have a positive anti-tTG, according to several studies.
http://jccglutenfree.googlepages.com...testsandbiopsy

Antigliadin antibodies indicate an abnormal immune response to gluten, but they are not autoantibodies that attack intestinal villi.

Antigliadin antibodies are not as specific to celiac disease (not as specific to villous atrophy), but they may the only antibody present in those who suffer wide ranging systemic problems associated with gluten sensitivity. Unfortunately, many doctors discount gluten sensitivity unless it shows as celiac disease, and many many patients continue to suffer because of it. Thankfully, more and more doctors are becoming aware. Researchers over the last ten years have proved gluten sensitivity can cause serious health problems without showing as 'celiac disease', but still... most doctors are operating under old truths.

Let me offer these links for further explanation.

On gluten sensitivity vs. celiac disease:
http://jccglutenfree.googlepages.com...sceliacdisease
(this includes links to various articles and sites from doctors who understand the broader reach of gluten sensitivity)

On the meaning of antigliadin antibodies:
http://jccglutenfree.googlepages.com...niggantibodies
(be sure to read the right column excerpt, and check out all the conditions associated with antigliadin antibodies... many of which remit on gluten free diet.)

Here are some of the best articles to explain the wide reaches of gluten sensitivity... that isn't necessarily celiac disease.

"Early Diagnosis Of Gluten Sensitivity: Before the Villi Are Gone" by Kenneth Fine, MD

Gluten intolerance: a paradigm of an epidemic by Stacy Astor Shaul

Gluten sensitivity as a neurological illness, M Hadjivassiliou, et al.
(this article is free, but you have to register..but I have excerpts of it here: http://jccglutenfree.googlepages.com/diagnostictesting , )



Bottom line, do yourself a big favor, and go gluten free and take your daily mega dose B12, despite you negative celiac diagnosis. Kudos to you for your continued persistance in obtaining the right tests. You may still want to pursue total IgA (can be done anytime in the future...no need to be eating gluten) or anti-tTG IgG (sooner rather than later because you need to be eating gluten). However, the extremly high antigliadin antibody is all the evidence you need to justify being gluten free for life, imo.

I was B12 deficient, too, btw. Intrinsic factor and parietal cell antibody were negative for me, too. I didn't have any positive gliadin antibodies, but went gluten free to support my daughter (story here)... and benefited greatly. Many lifetime symptoms disappeared. In theory, if B12 deficiency is caused by gluten/celiac, once the intestines heal and there is better absorption, the B12 deficiency should self correct. Well... after 8 years gluten free, I still need my daily dose of 1000mcg B12. My symptoms return within weeks if I stop or get slack. Still have no absolute reason for why. You can have pernicious anemia without the antibodies (intrisic factor, parietal cell)... and many other things can cause B12 deficiency...including low stomach acid, use of antacids, and many other things).

You didn't mention your symptoms. I assume you have some if you have been going through this testing. Gluten sensitivity, even without celiac disease, can cause wide ranging symptoms... neurological disease, GI disease, skin disease, bone disease, liver disease, kidney disease, psychiatric problems, on and on and on.

Hope this helps....

Cara