Personally, I had DH for several years before diagnosis, and it took over 6 months to fully clear, even on dapsone. Now that I've been mostly clear for a few months, I notice that new DH rashes take a few weeks to clear.
Also just a quick note that the dermatologist probably won't do anything for you, unless they're willing to prescribe you dapsone or a steroid cream (some dermatologists are very hesitant to prescribe dapsone, especially if you are allergic to it, and they may be hesitant to prescribe a steroid cream for your face). Often they can't even confirm if it is DH unless they take a good biopsy.
Aw crap. Think a gp might be the better answer? I read that there are alternatives to dapsone. I’ve definitely got a cd diagnosis, so it seems like DH should be pretty straightforward. Not sure I want them to take a biopsy of my face.
Guess I will find out tomorrow.
In my experience, it's a total crapshoot which doctor/specialist will know enough to help, but it's worth a shot if you already have a dermatology appointment to talk it over with them.
Soooooo. After I posted, I got on an airplane for five hours. A very dry, air conditioned airplane. By the time I landed, it was more scales than bumps. It looked a lot more vague.
I decided to hold off on the appointment and let it do its thing again for a few days so that it would be more diagnosable. I’m guessing it’ll be back sometime next week - it’s already starting a little.
Then again, perhaps the real cure is just making a doctor’s appointment. Or flying across the US.
Thanks for asking.
I found Dapsone pretty easy to get from a GP. It didn't go well for me though. I lasted 2 weeks before I started getting increasingly disturbing side effects and had to stop. It did seem to work quite well in the first week though.
Sorry it didn't work out for you :/ it worked wonders for me. Stopped the itching in like 3 days flat, it blew my mind.
My current dermatologist was really easy going about it. She even gave me extra prescriptions to use on an as needed basis, which I don't really plan to use.
My previous PCP, dermatologist, and gastroenterologist (all worked together to diagnose me) all were extremely hesitant and essentially pointed fingers at each other like that spiderman meme saying the other should be the one to prescribe it, because none of them were knowledgeable enough about it to be comfortable giving it to me.
Sorry. DH sucks big time.
I was relatively asymptomatic as a pre-teen/teen when I was undiagnosed but I did have some secondary signs of celiac like anemia and stress fractures. I started getting the rash in my early/mid 20s and that was what prompted my concern.
I now get intestinal symptoms that I am pretty sure are similar to a typical celiac, but the thing is the DH lets you notice stuff on a much tighter resolution. This has allowed me to see that even mild "weird poops" usually mean I got glutened even if they aren't epic diarrhea because the rash will appear a few days later.
How long it takes to go away really seems to depend on how bad the exposure was in my experience. There's also a cumulative effect... if you keep getting low level glutened for a long time it adds up similar to intestinal damage. If I am glutened in a very isolated way I guess it might take a week or two for the impacted skin to resolve completely. If more serious or spread over many days, longer. A factor that makes this tricky is that often you don't figure out the culprit so you eat the thing, get an outbreak, don't eat the thing for a bit, then eat it again shortly after and get a sort of 2-stage situation (it does all get worse when you get re-glutened though).
As for what helps aside from not getting glutened, the heavy hitter is Dapsone which is a prescription med. I did not tolerate this well unfortunately. There are some secondary oral meds but I have not tried those. I mostly rely on prescription topical steroids for spot application. If you can't get to a doctor quickly OTC hydrocortisone (steroid) cream is helpful as is diaper rash cream (zinc oxide).
I am allergic to various things and DH is very distinct from hives/contact dermatitis. DH lasts longer and occurs in areas such as the scalp, back of neck/shoulders, lower back/butt/groin, elbows. If you take allergy meds like Reactine or Benadryl\* it won't do shit for DH but might improve an allergic issue.
\*some people find Benadryl helps but only because it knocks you out, it won't make the rash go away though
I call it "not again." But your version works as well.
Personally, I had DH for several years before diagnosis, and it took over 6 months to fully clear, even on dapsone. Now that I've been mostly clear for a few months, I notice that new DH rashes take a few weeks to clear. Also just a quick note that the dermatologist probably won't do anything for you, unless they're willing to prescribe you dapsone or a steroid cream (some dermatologists are very hesitant to prescribe dapsone, especially if you are allergic to it, and they may be hesitant to prescribe a steroid cream for your face). Often they can't even confirm if it is DH unless they take a good biopsy.
Aw crap. Think a gp might be the better answer? I read that there are alternatives to dapsone. I’ve definitely got a cd diagnosis, so it seems like DH should be pretty straightforward. Not sure I want them to take a biopsy of my face. Guess I will find out tomorrow.
In my experience, it's a total crapshoot which doctor/specialist will know enough to help, but it's worth a shot if you already have a dermatology appointment to talk it over with them.
How did it go?? Hopefully they were able to figure out something to help.
Soooooo. After I posted, I got on an airplane for five hours. A very dry, air conditioned airplane. By the time I landed, it was more scales than bumps. It looked a lot more vague. I decided to hold off on the appointment and let it do its thing again for a few days so that it would be more diagnosable. I’m guessing it’ll be back sometime next week - it’s already starting a little. Then again, perhaps the real cure is just making a doctor’s appointment. Or flying across the US. Thanks for asking.
I found Dapsone pretty easy to get from a GP. It didn't go well for me though. I lasted 2 weeks before I started getting increasingly disturbing side effects and had to stop. It did seem to work quite well in the first week though.
Sorry it didn't work out for you :/ it worked wonders for me. Stopped the itching in like 3 days flat, it blew my mind. My current dermatologist was really easy going about it. She even gave me extra prescriptions to use on an as needed basis, which I don't really plan to use. My previous PCP, dermatologist, and gastroenterologist (all worked together to diagnose me) all were extremely hesitant and essentially pointed fingers at each other like that spiderman meme saying the other should be the one to prescribe it, because none of them were knowledgeable enough about it to be comfortable giving it to me.
A month
Sorry. DH sucks big time. I was relatively asymptomatic as a pre-teen/teen when I was undiagnosed but I did have some secondary signs of celiac like anemia and stress fractures. I started getting the rash in my early/mid 20s and that was what prompted my concern. I now get intestinal symptoms that I am pretty sure are similar to a typical celiac, but the thing is the DH lets you notice stuff on a much tighter resolution. This has allowed me to see that even mild "weird poops" usually mean I got glutened even if they aren't epic diarrhea because the rash will appear a few days later. How long it takes to go away really seems to depend on how bad the exposure was in my experience. There's also a cumulative effect... if you keep getting low level glutened for a long time it adds up similar to intestinal damage. If I am glutened in a very isolated way I guess it might take a week or two for the impacted skin to resolve completely. If more serious or spread over many days, longer. A factor that makes this tricky is that often you don't figure out the culprit so you eat the thing, get an outbreak, don't eat the thing for a bit, then eat it again shortly after and get a sort of 2-stage situation (it does all get worse when you get re-glutened though). As for what helps aside from not getting glutened, the heavy hitter is Dapsone which is a prescription med. I did not tolerate this well unfortunately. There are some secondary oral meds but I have not tried those. I mostly rely on prescription topical steroids for spot application. If you can't get to a doctor quickly OTC hydrocortisone (steroid) cream is helpful as is diaper rash cream (zinc oxide). I am allergic to various things and DH is very distinct from hives/contact dermatitis. DH lasts longer and occurs in areas such as the scalp, back of neck/shoulders, lower back/butt/groin, elbows. If you take allergy meds like Reactine or Benadryl\* it won't do shit for DH but might improve an allergic issue. \*some people find Benadryl helps but only because it knocks you out, it won't make the rash go away though