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Dermatisis Herpetiformis (dh)

stomper

By stomper
in Dermatitis Herpetiformis

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stomper Newbie
stomper
Posted

I need to hear from anyone who has controlled their DH. I have only been gluten free for a month now as that was when I was diagnoised with DH and Celiac, but feel so much better except for the DH. It is still bad especially on my elbows. Red, sore, spots that open and sting with almost any cream I have tried. Any suggestions for help?

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tarnalberry Community Regular
tarnalberry
Posted

until the dh is healed, try eliminating sources of iodine from your diet (iodized salt, seafood, etc - google can help find the list). iodine is necessary for forming the IgA deposits in the skin that make dh what it is. it may take a number of months for the deposits to clear and healt.

MGoers37 Rookie
MGoers37
Posted
I need to hear from anyone who has controlled their DH. I have only been gluten free for a month now as that was when I was diagnoised with DH and Celiac, but feel so much better except for the DH. It is still bad especially on my elbows. Red, sore, spots that open and sting with almost any cream I have tried. Any suggestions for help?

My Dermatologist told me to consult a nutritionist about the gluten free diet as there are a lot of products that contain gluten that you would never think of.You may not be completely gluten free. I've been somewhat on a gluten "reduced" diet for about a month now and i don't get any relief from these bumps. As with eliminating iodine from your diet, it is a viable solution since it effectively eliminates a part necessary for forming the bumps on your skin, but i've read you should consult your doctor before trying to eliminate iodine from your diet as your body needs it for something or other.

hope that helped

Guest Hydra
Guest Hydra
Posted

I am new to this too and have been dx'd with DH and pending Celiac test. Aloe seems to work to control it but not completely yet. Straight aloe right from the plant, not store bought.

lovegrov Collaborator
lovegrov
Posted

If it's really bad I'd talk to my doctor about using dapsone for a while.

richard

almostnrn Explorer
almostnrn
Posted

I know this sounds silly but this was my award winning combo to help a bad outbreak. I originally figured out that it helped after my first biopsy. I was told to use straight vaseline on the biopsy spot and when I did I noticed that it was clearing up my elbow. I then started smearing vaseline anywhere I had an outbreak. Depending on how bad it was I would do it several times a day if I could get away with it. If I am really itchy I use benadryl spray first let it dry and then slime up with the vaseline. Maybe this will help those nasty little spots heal up for you!

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    • par18
      Is it gluten?

      By par18 · Posted

      Thanks for the reply. 
    • Scott Adams
      nothing has changed

      By Scott Adams · Posted

      What you’re describing is actually very common, and unfortunately the timing of the biopsy likely explains the confusion. Yes, it is absolutely possible for the small intestine to heal enough in three months on a strict gluten-free diet to produce a normal or near-normal biopsy, especially when damage was mild to begin with. In contrast, celiac antibodies can stay elevated for many months or even years after gluten removal, so persistently high antibody levels alongside the celiac genes and clear nutrient deficiencies strongly point to celiac disease, even if you don’t feel symptoms. Many people with celiac are asymptomatic but still develop iron and vitamin deficiencies and silent intestinal damage. The lack of immediate symptoms makes it harder emotionally, but it doesn’t mean gluten isn’t harming you. Most specialists would consider this a case of celiac disease with a false-negative biopsy due to early healing rather than “something else,” and staying consistently gluten-free is what protects you long-term—even when your body doesn’t protest right away.
    • Scott Adams
      Is it gluten?

      By Scott Adams · Posted

      Yes, I meant if you had celiac disease but went gluten-free before screening, your results would end up false-negative. As @trents mentioned, this can also happen when a total IGA test isn't done.
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