So, I've been reading here for a while now trying to figure out what's going on. Thanks to many of you as you have helped immensely. Simply feeling like I'm not alone has been a huge help!
Like most of you I've had GI problems of and on for years. Been told I have IBS, reflux, the usual, but it never seemed right. Last summer I started to itch, insane itchy small bumps that lasted forever. They were head to toe, my knees, elbows, shoulders, tail bone, and hairline you name it. Saw my allergist and he threw out DH. Did the celiac blood test, negative. Saw a dermatologist who thought I was crazy, "that's so rare!" but agreed to biopsy. Of course after the fact, I read here how he did it wrong, it was negative. I went gluten free and the rash went away, after a few week I tried to re-introduce, got really itchy! Surprise, surprise.
I asked my primary for a recommendation on a better dermatologist and she recommended just calling the local university/medical hospital, they have a special derm department. It was a bit of a drive but the Dr. was great. He listened, said, "yes, it's rare but it does happen." The fact that steroid creams have no effect was a sign it was DH, and of course the fact that I can control the rash with the proper diet was also a clear sign it was DH. Basically, everything I described he said sounded like DH.
I did go back on gluten for just a little bit before the appointment and there was enough rash on my upper back/hairline for the punch biopsy, next to the rash I might add, but it was still negative. He nearly apologized for not being able to "officially" diagnose me with DH but said to continue the gluten free diet.
Interesting is that one other recommendation he had for the itch is benadryl. He also gave me a prescription for a stronger version of benadryl. Said to take it every night regardless and it will help. It makes you really sleepy though so I only take it when needed. It doesn't heal the DH or anything, the antihistamine simply helps take away the itch. He also mentioned the dasapone but without the official diagnosis I think he's hesitant to prescribe it which is fine, I don't think I need it anyway. He did say come back if I can't control the rash with the diet.
Though it seems like most doctors are clueless, there are a few out there that DO know about DH. It feel good to be validated by a medical professional instead of second guessing everything.
Like most of you I've had GI problems of and on for years. Been told I have IBS, reflux, the usual, but it never seemed right. Last summer I started to itch, insane itchy small bumps that lasted forever. They were head to toe, my knees, elbows, shoulders, tail bone, and hairline you name it. Saw my allergist and he threw out DH. Did the celiac blood test, negative. Saw a dermatologist who thought I was crazy, "that's so rare!" but agreed to biopsy. Of course after the fact, I read here how he did it wrong, it was negative. I went gluten free and the rash went away, after a few week I tried to re-introduce, got really itchy! Surprise, surprise.
I asked my primary for a recommendation on a better dermatologist and she recommended just calling the local university/medical hospital, they have a special derm department. It was a bit of a drive but the Dr. was great. He listened, said, "yes, it's rare but it does happen." The fact that steroid creams have no effect was a sign it was DH, and of course the fact that I can control the rash with the proper diet was also a clear sign it was DH. Basically, everything I described he said sounded like DH.
I did go back on gluten for just a little bit before the appointment and there was enough rash on my upper back/hairline for the punch biopsy, next to the rash I might add, but it was still negative. He nearly apologized for not being able to "officially" diagnose me with DH but said to continue the gluten free diet.
Interesting is that one other recommendation he had for the itch is benadryl. He also gave me a prescription for a stronger version of benadryl. Said to take it every night regardless and it will help. It makes you really sleepy though so I only take it when needed. It doesn't heal the DH or anything, the antihistamine simply helps take away the itch. He also mentioned the dasapone but without the official diagnosis I think he's hesitant to prescribe it which is fine, I don't think I need it anyway. He did say come back if I can't control the rash with the diet.
Though it seems like most doctors are clueless, there are a few out there that DO know about DH. It feel good to be validated by a medical professional instead of second guessing everything.