4 replies to this topic

[mmaccartney]

For those that have DH.

Do the skin lesions/blisters only appear when you have been glutened? Or is there some level/amount of lesions/blisters that are always present even if you are gluten-free?

[glutenfreenew]

i have severe dh and i used to think that i was being glutened everytime i had a break out and couldnt pinpoint what caused it . i come to find out that your body takes years to rid itself of the gluten deposits in your body and breakouts just happen. sometimes stress can bring on mine. i am completely gluten free and very careful but unfortunately the breakouts still come and go. they have been a lot less severe each time. Hope thats helpful

[SissySue]

For those that have DH.

Do the skin lesions/blisters only appear when you have been glutened? Or is there some level/amount of lesions/blisters that are always present even if you are gluten-free?

I never even knew about gluten until my latest outbreak, and now I have started a gluten-free diet based on the information I have learned about its association with Celiac disease and lymphoma. I always thought (and still do) that my "trigger" is stress. Though I am not very expressive emotionally, I find my skin is a "barometer."

My first year of college my dermatologist gave me samples of Atarax; it was like "a miracle!" Anytime I have an outbreak I reach for the Atarax or the telephone to have my physician call in a prescription for me.

I had been outbreak free for 27 year, and a couple of weeks ago I got this rash that initially I thought was from maybe petting my cat, who runs through poison oak; it took about a week for me to realize this was not poison oak but my old friend DH had returned. I asked for a prescription to be called in for 100 mg Atarax; Wal*Mart was told they could give the generic, so they only had 50 mg tablets of the generic; I took loading doses of 200 mg for the first day and slept almost 24 hours, but I have dropped it down to 100 mg every four hours yesterday and today, and the rash is almost gone, and has not been itching.

I have not tried Dapsone; after reading the side-effects, I think I'll stay with something that I know works and does not have the long-range sid-effects.

[ravenwoodglass]

I had severe DH from childhood. I was a constant oozing mess. After going gluten-free it actually took about 2 years for the outbreaks to stop. For me even the smallest amount of CC would cause new blisters or a reactivation of any that had almost healed. This lessened after about 6 months when a light bulb went off in my head ( I didn't have the folks here and their great amount of knowledge until I had figured it out on my own almost 2 years after diagnosis) and I started checking everything I touched or came in contact with. Still it would be the first sign of a glutening for over 2 years. Some of the worst offenders for me were cosmetics, shampoos and conditioners, art supplies and grain derived alcohols and vinagers.
Now I am 5 years into gluten free. My DH is now the last thing to appear when I get a good glutening, and even then the sores are small, singular and short lived. Oh and my hair grew back. It does take a long time to clear the deposits out of the skin, and IMHO we need to pay careful attention to when they appear and what we have eaten and come into contact with.

[heathen]

i developed DH after starting the gluten-free diet. I don't notice that it's worse when i'm glutened, but it does flare with stress. Mine doesn't get oozy--only itchy.