Your situation is actually more common than many realize, and while confusing, there are logical explanations for your test results. The key points are that your biopsy showing villous blunting and increased lymphocytes does indicate intestinal damage typically seen in celiac disease, despite your negative blood tests. This phenomenon is known as seronegative celiac disease, which affects about 10% of celiac patients. Your partial HLA-DQ2 genetic result doesn't rule out celiac either, as a small percentage of celiac patients don't have the complete genetic markers. The fact that you've responded so dramatically to a gluten-free diet is another strong indicator that this is likely celiac disease rather than NCGS, since NCGS doesn't usually cause intestinal damage. Your doctor might consider ordering additional tests like IgG-based celiac tests (tTG-IgG or DGP-IgG), or repeating the endoscopy after you've been gluten-free for a longer period to check for healing. Many celiac specialists would actually diagnose you with celiac disease based on your biopsy results combined with your positive response to the gluten-free diet, regardless of the blood test results. It may be worth consulting with a gastroenterologist who specializes in celiac disease for further evaluation. Your experience highlights why celiac disease can be so challenging to diagnose and why doctors need to look at the whole clinical picture rather than relying on any single test.

Hi all, I have to have gum surgery tomorrow and was wondering if I should ask for this new drug, Journavx, instead of Vicodin.  I tried looking it up online and got, Not gluten free.  There is no gluten in the ingredients for this drug.  ????  Has anyone else had experience with Journavx?  Advice?   Many thanks, Charlotte

Hi Faye,  Sorry I didn't see your post sooner.  I suffered from ataxia as well.  None of my drs. thought it was dairy.  They were wrong.  Turns out lactose intolerance was the cause.  Pancreas just isn't making the enzymes like it used to.  I now drink lactose free milk for the calcium and eat lactose free yogurt by Green Valley, when I can find it.  My ataxia problems vanished.  Hope this helps.

This article might be helpful. It breaks down each type of test, and what a positive results means in terms of the probability that you might have celiac disease. One test that always needs to be done is the IgA Levels/Deficiency Test (often called "Total IGA") because some people are naturally IGA deficient, and if this is the case, then certain blood tests for celiac disease might be false-negative, and other types of tests need to be done to make an accurate diagnosis. The article includes the "Mayo Clinic Protocol," which is the best overall protocol for results to be ~98% accurate.    

Let us know how things turn out.