When I was first diagnosed, my doctor left me a voicemail regarding the diet that said "You are a smart woman, I'm certain you will figure it out". That was it. I got a letter in the mail with a business card for a local nutritionist (who also stunk). When I asked about testing for vitamin deficiency I was told it wasn't necessary and to take calcium. So, I never went in for my 3 month follow-up because he didn't impress me.

It's been six months now and I decided I'd give him the benefit of the doubt and go one more time. Though my visit with him was a waste of time and a co-pay, he did agree to do all the blood tests that I requested. I was happy about that. He also said he was going to run a Prometheus Celiac Plus panel. When I looked it up it said that it tests for genetic factors as well as the usual serological tests. I'm anxious to get the results back. Is anyone familiar with this panel? I don't know why he's doing this test now and why he didn't do this test initially, but I'm happy he decided to do it today.

Moondanse

My Dr. just ran a panel from Prometheus lab. I got a letter if insurance does't cover I'm responsible for the $799.00 tab for the test. Mine came out negative as I have been gluten free for 1 year. I did not have the genetic markers either. My PCP ran all of the tests I requested with pleasure because I am advocating for myself. Yes the medical profession has let me down also.

Susan

Yes, I had my blood work sent to Prometheus labs too. Here were my results:

AGA IgG - 11.9 U/ml
AGA IgA - 5.9 U/ml
IgA ELISA (TTG IgA) - >100 U/ml
IgA IFA (EMA IgA) - Positive
Total IgA - 100 mg/dl
HLA DQ2 - Detected
HLA DQ8 - Not Detected

Results of my Biopsy - Inconclusive evidence of Celiac Disease (they did this first, then ran the blood test, they said that it was microscopic evidence)

Who really knows what all this means?

When you say diagnosed I assume like me you had a biopsy? I had no blood tests done for Celiac prior to my diagnosis because I was so malnourished that the GI went straight for the scope. Anyway back to your question. I responded so well to the diet I did not get any testing done for the first year except for a bone scan. I attended a talk given by Dr. Fasano (U of Maryland) the following year and asked him about follow-up testing. He said I should get the blood tests at least once to check the progress and see if "any" gluten was getting into my diet. I did this and also got gene tested at the same time. All the anti-body levels were the negative number of "1". I did have the DQ2 gene. I don't think I will get these tests done again anytime soon even though my insurance would probably pay because I feel fine just doing the diet.

Tom

This is suggestive of Celiac Disease for sure (TTG >100, positive EMA, DQ2). If you have been gluten-free for a while that may explain what seems to be a lower AGA IgA value. You can have an inconclusive biopsy if not enough samples were taken, or your amount of intestinal damage is mild to moderate. Your doctor should still be recommending you follow the gluten-free diet.