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Ask the Doc: Positive biopsy but negative blood tests

Posted By Alison On Sep 29, 2010 @ In Ask the Doc,Celiac Disease,Gluten Intolerance | No Comments

Q. I suffered my whole entire life with intestinal issues (I am 46). I have been gluten free for over 3 years now, I went in for an upper GI (for gerd) and I had him test me for celiac disease, it came back positive (I had blunted villi). I then went for blood work and all came back negative, on the HLA genetic testing, it came back DR1/DQ5. But listen to this…I lost 3 pregnancies, first one at 8 months gestation, the second and third at 5 months (I had to labor and deliver them all) and they were never able to “officially” tell me why. After I lost my second one (1991) they did blood work and told me I had anticardiolipin antibody syndrome. Two years ago at the age of 44 I was diagnosed with osteopenia (a little on the young side!). Last year I saw a hematologist (for a cosmetic procedure I’m going thru) I gave him my complete history including being gluten-free. He told me that some people who have anticardiolipin antibody syndrome and are then diagnosed with celiac disease, once they go gluten-free, it clears up the anticardiolipin syndrome. He tested all my numbers, and they were indeed negative (first time in 20 some odd years!!). I’m so confused as to what to think about all this! Can you provide any feedback?

A. You are not the first one to have blunted villi and negative celiac serologies. There are many other genes involved in gluten sensitivity and we are not clear on exactly what they are doing.  If you have really been completely gluten-free for the past three years, and your villi are still blunted, you probably have had advanced disease for years, given your infertility and osteopenia. It may take longer for your villi to return to normal, but you must be perfectly gluten-free. If you have been, then you may have refractory celiac disease, and there are other therapeutic options to explore. You should see a gastroenterologist to discuss this further.

Health and happiness,
Dr. Aron

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