For those of you with DH, can you please help? I had two positive skin biopsies - first of lesional skin and then, because the first suggested DH, of peri-lesional skin by immunofluorescence. Came back with DH diagnosis. Had blood tests and they came back like this: 313 for T. Transg IGA. 79 for A-Gliadin IGG and 205 for A-Gliladin IGA; A-Endomysial AB = positive; Endomysial IGA GIV = 1:320. Doctors said that was clearly indication of celiac disease.
I went gluten-free for 10 days: the rash started to clear and I felt much better, though startled that this was what I have (it was the last think I expected. In fact, I never thought this rash of two years was anything more than an allergic reaction to something I couldn't define). But last week the GI doc said I had to go back on gluten and have endoscopy and biopsy of the small intestine. So I started intesting gluten again and I feel horrible.
Do I have to have the GI biopsy? Could I say no? Is there a good reason to go for this? I am getting depressed and sad, not to mention sick. Of course, the rash has reappeared and my gut is a mess. I don't want to devolve into depression. I'm thinking I could benefit from antidepressant medication just to get through this.
I have always had DH, and the drs could never tell me what it was. Went gluten free and found this forum. That's how I found out. I have been gluten-free for a year now, except for occasional cross contamination - maybe once every 4 mo. I have had a scope done recently without eating gluten and they were still able to give me a positive for celaic. I might just be a rare case? My Dr. told me that the elimination diet along with my heart issues stopping was good enough of a diagnosis for him. He wasn't going to ask that I continue risking my heath for it. I would suggest talking to your Dr. and explaining how horrible you feel. Maybe they can do a blood test now instead of making you wait. I know the blood tests aren't always accurate, but if you feel that bad there's a def. reaction.
Good luck and I hope you feel better.