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DH Dermatitis Herpetiformis

Posted , 4 users are following.

sandy37977
sandy37977

Thought I was Gluten Free for 4 years but the blisters just got worse and worse. Went to a Dermatoligist and he biopsied my rash to confirm DH. Trying to figure out where I'm getting contaminated with gluten. Someone said my other food alergies Soy, Eggs, Dairy, Garlic, etc.) could be triggering the Gluten Rash. Taking Dapsone scares me. Anyone out there have experience with Dapsone? Is it a cure or just a bandaid?

 

1 like, 3 replies

3 Replies

  • natcann
    natcann sandy37977

    Posted

    Hi there. I was clear of DH for several years after being diagnosed and gluten free. Suddenly it came back. I started researching everything again as I didn't want to use medication if poss. I came on this forum and somebody told me that the same thing happened to them and they gave up gluten free oats. Apparently there is something in oats which is similar to gluten and some people with CD can't tolerate it. I ate gluten free oats every morning so gave them up to see what happened. The DH disappeared again in a short time. This was my solution but of course you may not eat oats. Good luck with it.

  • tm62
    tm62 sandy37977

    Posted

    Hi Sandy, yes I have had a similar experience, was diagnosed with CD about 5 years ago and then also DH.  I gave up dairy and found a big improvement,  not only in the rash but also in the way I felt.  I found if I ate cheese that it could trigger the rash at first, however I am now able to cheat a bit and eat some dairy.

    I was quite despondant when I first went gluten free and still had the rash, to make matters when first diagonsed someone on a forum said that it was caused by my not sticking to the GF diet and I knew I was very strict ( no gluten in house) however I have since found out that people with DH are sometimes more senstive than those with CD and because I started having the rash about 25 years ago and was told it was dermititis or excema my body has been in conflict all of that time and its understandable that it might think that another foods such as dairy are a problem instead of gluten.  My consultant and CUK said that it might take years ( up to 10) to stop the flare ups.  I am happy to say that the rash has now calmed down a lot in the last year.

    With regards Dapsone, my personal experience of it is good.  When first diagnosed I was given it for a month and found that too much, as my lips were blue and my legs felt heavy, however I have it now when I have a flareup, I am lucky that I only need one 50mg tablet to take away the rash and it really does work, I was taking the tablets on average of about one every fortnight, now its far less than that. If you do decide to take them everyday  then you will need regular blood tests, if I were you I would have them prescribed and only take one when required ie when you cant sleep becuase of the itch etc.  I would rather do that than be miserable. 

    Hope this is helpful to you, hopefully like me you will find that if you stick to the diet the rash will subside, good luck 

    • sandy37977
      sandy37977 tm62

      Posted

      Thank You. So glad to know I'm not alone.

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