I've had problems for as long as I can remember (pain, bloating, constipation, fatigue, really skinny as a kid - albeit tall, mouth ulcers, etc.). I was actually tested for celiac three years ago. My blood tests were negative due to me producing very low levels of IgA, and my biopsy was negative. However, the doctor did find some "unspecified" inflammation that he didn't mention to me. I only found this out about two weeks ago when I was reading my file (I have a copy because I moved to a different country). I was always told that I definitely don't have celiac and there's no reason for me to eat gluten-free. I did try eating gluten-free in the past, and it did make me feel somewhat better. I never managed to stick to the diet for a very long time, though, my longest time was 4 months. Since I wasn't significantly better I ended up listening to my doctor and quiting. Since then I've been sort of gluten light, avoiding wheat and sometimes gluten. I usually did eat a little wheat once a week. All of this with me feeling somewhat better but not 100% improved.
After I found out about the inflammation that my previous doctor found, I decided to have the gene test. I got the results yesterday, I have the two alleles HLA-DQA1*0501 and HLA-DQB1*0201 that predispose me for a celiac disease. The report said that 95% or celiac patients and 20% of healthy individuals have this gene combination.
I was finally able to get an appointment with a new gastro who got really good reviews on the local celiac web sites. I'm seeing her on the 26th of August. We briefly chatted over the phone about my symptoms and she said that she'd like to do a biopsy on me, and of course, I would have to eat gluten for this for about 6-8 weeks. I thought about it and decided to go for it. It really matters to me to get a proper diagnosis. I mean, I think I already have my answer anyway because of the gene test and dietary response, but now in the back of my mind I'm curious about what that inflammation my doctor found really was. It'd be different had I been strictly off gluten for years, but since I haven't I think I can put up with feeling sick for two more months. I've been sick for years, so what's a couple more weeks.