So, I Was Wrong.

[Gluten=bad]

Well, I had an appointment with my doctor today and discussed with her my seemingly negative lab results for Celiac disease. See this topic for more info: Open Original Shared Link

Turns out my doctor didn't just order the antibody test, but also the gene test and for some reason they didn't send it to me. I tested positive for the HQ2 gene and will be seeing a GI doctor soon. Also, I'm still having the itchy rash that I've had for quite some time now, but she doesn't think it's the Celiac-related dermatitis herpatiformis, but rather something called tinea versicolor??? I seen a dermatologist within a few weeks. She also wants me to go on an elimination diet for four weeks and not eat any dairy, soy, peanuts, corn, or wheat (I'm already gluten free) and then slowly add those foods back in one at a time to see how my body responds. I'm still new to all of this, but feel much better that I now have a definitive diagnosis.

[ravenwoodglass]

It is good that now you know. Your doc sounds like a pretty good one. The elimination she is having you do is a good idea. Not only will it help you perhaps pinpoint other intolerances but it will really speed you healing. I found it difficult and boring at first but the results in how I felt were unbelievable. Celiac can do a lot of weird stuff to the skin, and not all DH seems to present exactly the same. I wouldn't be surprised if by the time you go to see the derm you are pretty well cleared up. I hope you are feeling better soon.

[Rachel--24]

Turns out my doctor didn't just order the antibody test, but also the gene test and for some reason they didn't send it to me. I tested positive for the HQ2 gene and will be seeing a GI doctor soon.

I just wanted to point out that having the gene doesnt actually mean that you have Celiac Disease. A large percentage of the population carries the genes but do not have the disease.

If your bloodwork was negative a diagnosis cant be made on positive gene testing alone.

Having said that...if the diet is working for you thats all that really matters.

[MDRB]

when you see the dermatologist ask them to do a biopsy of the effected area, not just a scraping but a proper biopsy. If you want a diagnosis you could consider getting a small intestine biopsy but you would need to go back onto the gluten (same for the blood tests, you would need to be on gluten for the antibodies to show up).

I have an itchy, blistery rash that I think is DH, from what I've read it can take a really long time to go away even after taking the gluten out of your diet. If you the post 'feet?' in the DH section on this site, a couple of posters recommend things to avoid that trigger DH, this might be helpful for you