Confusing Results

[lbv6684]

I am hoping that someone can give some input into some confusing test results. I have had what I call issues with my digestive track for a very long time, I finally gave in and went to see a GI for what I thought were reflux type symptoms. I also had bloating, gas, diarrhea and constipation on and off. I am always tired (but a very busy person so this wasn't even something I linked together). Because I have a strong family history of stomach and esophageal cancer on my mothers side, I decided that I should get some sort of baseline exam (also of some Swedish descent). I was scoped and told initially that things looked great, continue on with the OTC Prilosec etc. A week later a phone call that my biopsy was showed vilious blunting suspect Celiac(never thought of that!), come in for blood work, see the physician again. I had all labs done, B12 was low, IgA fine. Saw the dr. he put me on a gluten free diet, and ran more blood work, which came back normal. I also have other food allergies (certain nuts, and various fruits). I got a B12 shot, and started the diet immediately, and I think that I do feel better (B12 or is this in my head?). To put it in the Drs terms he is "perplexed", says it could be celiac or could be autoimmune enteropathy (very mild no recommended tx), or nothing at all. He recommends gluten free for at least several months to see how I feel. I just don't know what to think. Is there still a chance that this could be celiac? Should I continue on with the gluten-free diet, then test it out later. The symptoms I had were not so severe that I couldn't take them anymore, but bothersome enough that they were beginning ot affect my life, and they were progressing.

[ravenwoodglass]

I would continue the diet as the doctor reccommended, but for life. For one thing the villi blunting trumps the blood test as far as diagnosis goes. There are however fairly high rates of false negatives for both so I would go with the biopsy results. Also if you had already gone gluten free that causes a false negative on blood work anyway. If your not consumeing what your body is making antibodies for them the antibodies are not going to be in your blood work.

I am glad the diet is helping, stick with it as the risks if you don't are pretty severe.

[lbv6684]

I would continue the diet as the doctor reccommended, but for life. For one thing the villi blunting trumps the blood test as far as diagnosis goes. There are however fairly high rates of false negatives for both so I would go with the biopsy results. Also if you had already gone gluten free that causes a false negative on blood work anyway. If your not consumeing what your body is making antibodies for them the antibodies are not going to be in your blood work.

I am glad the diet is helping, stick with it as the risks if you don't are pretty severe.

My thoughts were the same. I hadn't given up gluten prior to the blood work. Additional findings on the biopsy were for intraepithelial lymphocytosis, and the scope identfied hetertrophic gastric mucosa, so I feel like there are more things that point in this direction that may over ride the negative blood tests. Call it an instinct, but I feel like this is what is happening with me, and frankly I am relieved that its something that I can manage. I think most of us know that there are those who are skeptics and I need to find a way to deal with them. Glad I found a place to get some answers and support! Thanks for your response.