I found out I had HD in April of this year. I had the rash for 2 months trying to find out what caused it. After searching the internet myself and with the help of co-workers, (Science Dept at a Community College) we came up with HD and I shared my concerns with my Dr. who did the Biopsy at the rash site and confirmed my suspicians. I have been on Dapsone since the first of May and will have my first appointment since the diagnosis this June 17. The Dr. is keeping me on the Dapsone for 6 months and then we will see what happens, I have been gluten-free to the best of my knowledge since diagnosis. It is very hard and I am still learning. I have not had any new break outs since the Dapsone.
Be sure to ask a physician about Dapsone and pregnancy, don't take any chances.
For the rash I found Calamine lotion worked best for me. Before I was diagnosed, the Dr. did put me on prednisone and it cleared up the rash immediately, but the minute I stopped it, the rash was back the very next day. Cold packs also help the itching, but when you have it in your scalp, on both arms and knees, it a little hard to keep all the cold packs in place! LOL!
I have no GI symptoms and never have. So I look at the HD as a blessing in disguise, that maybe I've gotten gluten-free in time before any GI symptoms. My Mother died from Colon cancer in 95 and looking back on her life now, I am convinced that she had celiac and was never diagnosed, so was never gluten-free and all her health problems were probably from celiac disease.
I have met a woman in my town that suffers from celiac disease and she has been a tremendous help. Recipes, cookbooks support etc..
I could use any hints on baking with the gluten-free flours and mixes, I can't get things to turn out very well. All my breads and crusts are gummy and heavy, any suggestions? I had to laugh at my husband today, he was looking for something to take in his lunch, and I had some left over gluten-free pizza and offered it to him, he said "I don't think I would have enough time to chew it" I will leave on that note. Good luck and remaining totally gluten-free is the key.