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Do I Have Dh?

num1habsfan

By num1habsfan
in Dermatitis Herpetiformis

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num1habsfan Rising Star
num1habsfan
Posted

not sure if you remember me posted about having that 'rash' from mid back to my neck...chest to face..and head..butt..first i got put on some hydrocortisone cream, but that only stopped the itch for a couple hours and it came back. I got put on Dapsone, beginning of january, after I suggested the doctor to put me on it. The 'rash' is not nearly as itchy as it used to be, and the redness is vanishing, but its not quite gone. But there IS a difference. The doc isnt convinced its DH and I dont feel like travelling 2 1/2 hours to get the dermatoligist to do a biopsy, and he knows that too. So i gotta stay on Dapsone for another 5 weeks yet. And go back to him and see what happens..

again, the 'rash' looks like milky filled pimples..so i dont know what to do..

~lisa~

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cdford Contributor
cdford
Posted

Sounds like our version of DH anyway. If you don't want to travel a long distance to verify the DH, have you considered working with your doc to do a trial period of going gluten-free? It is the only thing that will fix the problem if it really is DH. Only problem is that it seems to take much longer for going gluten-free to make a big difference if you are dealing primarily with DH and not major celiac disease as well.

Yes, for those of you reading this and panicking, I know that if you have DH you also have celiac disease, but for some the DH is the primary indicator. and it seems to take longer to see changes. It sure is worth the effort, though, not to have those nasty, itchy places.

It might be worth your while to read some of the DH posts here and see how others have handled it. Good luck.

num1habsfan Rising Star
num1habsfan
Posted
  • Author
Sounds like our version of DH anyway. If you don't want to travel a long distance to verify the DH, have you considered working with your doc to do a trial period of going gluten-free? It is the only thing that will fix the problem if it really is DH. Only problem is that it seems to take much longer for going gluten-free to make a big difference if you are dealing primarily with DH and not major celiac disease as well.

Yes, for those of you reading this and panicking, I know that if you have DH you also have celiac disease, but for some the DH is the primary indicator. and it seems to take longer to see changes. It sure is worth the effort, though, not to have those nasty, itchy places.

It might be worth your while to read some of the DH posts here and see how others have handled it. Good luck.

I've been gluten-free since Feb 2003 and the supposed DH got the worst last summer/fall time. And being lactose intollerant, I am usually like 99% diary free :P

~lisa~

pixiegirl Enthusiast
pixiegirl
Posted

Hmmm it makes me wonder if it is DH if you are gluten free...

I was only diagnosed in the fall of last year and I've had a rash on my foot and butt cheek for years, if I use cortisone they do tend to get better (not gone but better). No one ever knew what the rash was.

Then I got diagnosed and did a lot of research about being Celiac and of course I ran across information about DH and I though, Bingo, thats what I have. My rash didn't quite look like the pix on the internet but it resembled it close enough... since being gluten-free for about 4.5 months now the rash is better then it ever has been and doesn't itch at all any more and has shrunk down to about 1/3 the size it was on my foot and the one on my butt check (sorry to be so graphic) is totally gone. So I'm pretty sure that's what my issue was.

Perhaps you have your reasons for not wanting to drive a couple of hours to get a positive diagnoses but don't you think it would be worth it to be sure... that Dapsone is pretty powerful stuff (from what I've read, I've never used it) and I'd think that its not the best option to be using it if you don't have DH. I think your health is more important then a couple hour drive (I drive into Boston to see my doctor, 150 mile round trip every 2 months).

I'd consider getting a biopsy.

Susan

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