Do I have celiac?

[elizee]

Hello everyone!

I'll try to keep this short. I'm looking for others to share their knowledge and experience with their journey of being diagnosed. I've been struggling with celiac like symptoms for almost two years, but have yet to be officially diagnosed by anyone. I've done all the testing, but doctors still are scratching their heads. 

These test results led me to seek help: Immunoglobulin A,  25 Low mg/dL Reference Range 87-35 and t-Transglutaminase (tTG) IgG 6 High U/mL Reference Range 0-5

I then had an upper endoscopy done after months of going gluten-free. My GI doctor at the time told me I could remain gluten free until three days prior to the procedure. Which I later found out to be completely unhelpful in obtaining any sort of diagnosis. So, of course the biopsies came back negative and I was told I was "fine". 

Since then, I've had repeat celiac panels completed, all showing very low IgA levels. 

Now recently, I had HLA typing done to see if they could rule out celiac disease. I tested positive for HLA-DQ2 and negative for HLA-DQ8. 

Anyone out there with similar experiences? I feel confused and frustrated by being told "maybe" I have celiac time and time again from different doctors. 

[trents]

There is really nothing to tell you that you don't already know so know one can solve your dilemma without your being willing to commit to a deliberate gluten challenge for weeks/months toward the end of getting another endoscopy/biopsy. The sad part of your story is the bum steer given by your GI doc who told you you could eat gluten free up until 3 days before the procedure after you had been gluten free for months. He/she should have their license revoked. But honestly, this is not the first story like this we have heard on this forum. There is still profound ignorance in the medical community when it comes to celiac disease. It is slowly improving but many physicians, particularly those who have been practicing for many years, are operating on very dated information and unsound notions. 

You never mention any IGA testing done except the total IGA. Were tTG-IGA and EMA tests run? Was the DGP-IGA test run? Perhaps these were all negative or perhaps they were not run because it was assumed a low total IGA would render them necessarily invalid? I think the DGP-IGA test is not affected by low total IGA as the other IGA tests are.

One important thing you neglect to mention is if going gluten free resulted in symptom improvement. If so, you either have celiac disease or NCGS and at the end of the day both require a life-long commitment to gluten-free eating.

 

[Scott Adams]

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.

 

If going gluten-free relieved your symptoms, then you may already have your answer--you likely have celiac disease. If you need a formal diagnosis to help you stay on a gluten-free diet, then you may want to do the gluten challenge and repeat the biopsy.