Confusing Test Results

[MSmo]

I'm new to this so please forgive the long post. I'm having trouble getting a difinitive diagnosis but suspect that I am gluten sensitive. My trouble started with a rash in the winter of 2003. The rash was very, very itchy red bumps (not blistery). Over the course of the next several months I saw my family doctor (many times), two dermatologists, and an allergist and after getting nowhere, I ended up back at my family doctors office. I mentioned to him that my father has celiac disease (never diagnosed through any test but confirmed by diet, he had the typical symptoms which completely disappeared after going gluten free). He ordered the blood test for the anti-gliadin antibody and, lo and behold, the IgG test was elevated (38 units, Normal Range 0 – 19 units). The IgA test was within normal limits (8 units, Normal Range 0 – 19 units). He then sent me to the gastroenterologist who refused to do any testing because I didn't have any intestinal symptoms. He said the test must have been a false positive. Back to the dermatologist I went for a skin biopsy (another one, the previous biopsy showed a hypersensitivity reaction to something I was ingesting or inhaling), this time looking for DH. The biopsy was negative for DH. I did decide to go gluten free after the blood test results (May 2004) however, and the rash has disappeared for the most part. I'd just like to know for sure if I am truly gluten intollerant. The positive blood test and the family history certainly point that way. And the fact that the rash went away while on the diet. Now if I cheat even a little, my skin gets itchy but so far no rash has developed. Any advice or stories of similar experiences would be greatly appreciated. Thanks.

[Guest nini]

The Dr. refused to do the test despite the family history and the blood test results??? Find a new GI. You do not have to have gastrointestinal symptoms to have Celiac. It is the most OBVIOUS symptom but not the de facto end all only one... this really irks me.

OR you can just assume you are based on your elevated levels and go ahead and stay gluten free. Just my .02

[KaitiUSA]

Get a new GI doc that's for sure. That GI must not know about celiac and some people just don't get symptoms. How did he get to be a doctor with saying that. You should get a complete blood panel run on you.

[MSmo]

The GI docs attitude irked me as well. I had been on the diet for a couple of months when I saw him and he told me to go off of it, that I was torturing myself needlessly with such a restrictive diet. He said that if I had diarrhea and weight loss he would consider a diagnosis of celiac disease but not until then. From everything I've read, once you have the diarrhea, you've damaged your intestines. Why not embrace the diet now before the damage is done? I just wish there was one test that would indicate for sure that this is what I'm dealing with. It's not knowing for sure that bothers me. For now I'll remain gluten free so I don't itch!! Thanks all for your input!

[Rachel--24]

Well, I agree with the others about your doctor giving you false info. and basically blowing your chance for a diagnosis back then. I'm assuming you've been gluten-free for over a year now?? Tests would be pretty much useless now but since you did have positive IgG, family history and a positive response to the diet...I would just assume you're doing the right thing and stick with it. Its either that or go back on gluten for a few months.