Dermatitis Herpetiformis

[Tori]

After suffering for many years with severe intestinal problems, this summer my husband discovered information on celiac disease. It sounded exactly like what I'd been going through, but I wasn't ready to commit to a gluten-free diet. A short time later I went to my doctor because the lymph nodes on the right side of my groin were swollen huge and in horrible pain. She discovered a rash at the base of my tailbone and told me I had herpes! I told her it wasn't possible and she told me I must have gotten it from a toilet seat and sent me home with info. I went home and read the info (which said you can't get it from a toilet seat - duh!) I started taking the anti-viral meds she gave me and the next day the rash started itching so bad I thought I'd lose my mind. It went on for about 10 days despite taking the meds. Two weeks after I went to the doctor I got my test results back - negative. No other information. I decided to look into celiac disease further and read about dermititis herpetiformis which means "a skin condition that looks like herpes." That is what finally convinced me I had celiac disease. (Besides the fact that by then I was so weak I could barely lift my head from the pillow.) I've been on a gluten-free diet since then (that was in June) and have not had another episode since then and I'm regaining my strength and my health. At this point I've chosen not to have a biopsy so I'm treating it myself.

Interestingly, my grandmother went to the doctor recently for a horribly itchy rash "down there" and the doctor told her she had herpes! She freaked out! Of course her test came back negative too but I haven't been able to convince her to try a gluten-free diet. Has anyone else had the horribly embarrassing experience of being told you had herpes when it was really dh? ( I had to come home and tell that to my husband. . . !)

[mom of 5 celiac]

My daughter is 18 and she was told she had vaginal herpes. She had blood tests and they came back that is wasn't herpes. It may have been the cold sore type. I wonder is this was DH. She was diagnosed with Celiac disease 2 years ago. she ahd the biopsy and it was really positive. Man these dr. need to get with the program. She was really up set and we couldn't umderstand how she could have got this. Do you think it could be DH. DOWN THERE. She hasn't had anymore problems. She did take the herpes med and it cleared up. It is so weird. IT was really awful for her too. this is really interesting. Can you have DH as well as the intestinal part too?