Dermatitis Herpetiformis–What is It?

In this week’s giveaway post I mentioned how much I hate mosquitos.  Who likes itching bumps on their body?   It’s annoying.

That’s why I don’t envy people with dermatitis herpetiformis (DH).  They have to deal with very itchy, watery blisters. DH is associated with celiac disease, and the blisters appear when a person with DH eats gluten.

scratching-squirrel

While people with DH can and often do have intestinal damage from eating gluten, that damage is usually less severe than it is with celiac disease.  The reaction is primarily one of the skin.

The blisters can appear anywhere on the body but most commonly affect pressure points such as elbows, knees, and buttocks.  The blisters occur on both sides of the body (not just one elbow).

Interestingly, DH is more common in males than females and is not seen very often in young children.  It is diagnosed by skin biopsy in the area of ruptured blisters.  The biopsy tests for IgA deposits.  Celiac tests may also be done, but DH alone does not result in positive blood tests.

DH is treated with a gluten free diet.  As with celiac disease, it is a life long diagnosis and treatment.  DH may also be treated with the drug Dapsone, but the drug is not intended to replace a gluten-free diet.

I’m not an expert on DH, and I’m only trying to introduce you to the problem.  You can read more at the following links:

Gluten Intolerance Group
About.com Celiac Disease
Celiac Sprue Association

question markDo you have dermatitis herpetiformis or know someone who does?  What’s your experience with it?

Photo credit: ratranch




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Comments

  1. Zusiqu says:

    I have it. So does my daughter. I haven’t had a breakout in 7 or 8 years but she breaks out when she accidently consumes gluten. It covers her entire face and is very painful.

  2. I do. A year before I was diagnosed with celiac disease, I thought I had hives on both of my elbows, they were there for several weeks but I didn’t go get it checked out. Too bad, as it would have saved me from another year of stomach aches etc. I was also getting alot of unexplained rashes, and couldn’t figure out what was triggering them.

    On a side note, does anyone think the caramel flavouring in pop products might be a problem for celiacs?

  3. Zusiqu says:

    “On a side note, does anyone think the caramel flavouring in pop products might be a problem for celiacs?”

    We can’t eat that. Don’t know why, but it does cause a reaction. Frankly, we just stopped drinking pop altogether. We mostly drink water or coffee or tea or diluted fruit juice. Once you get used to that, the sweetened stuff (and artificially sweetened stuff) just tastes gross.

  4. Thanks for raising awareness. My little brother has celiac disease but he’s never gotten anything like this. I’ll have to stay aware for him.

  5. Marleena says:

    I have it, I also get GI problems like 80% of other DH patients. A study was done a few years ago by a Dermatologist and Gastroenterologist to find out how many DH suffers also had GI symptoms and it was found that 80% did so now DH is referred to as “the skin manifestation of Celiac” http://digestive.niddk.nih.gov/ddiseases/pubs/dh/
    When a DH patient goes in for a diagnosis they do the skin biopsy near a new lesion to check for IgA (also they may test for IgG too), they also run a Celiac panel on your blood. If you have DH you have Celiac, it is no longer seen as a different disease with the same treatment as Celiac. So in a way those of us with DH as one of the symptoms of Celiac are easier to diagnose since we don’t need scopes done to confirm the findings. You do need to be eating gluten for at least a minimum of 12 weeks before hand (according to the University of Chicago Celiac Center) , the newest blister is best for testing and don’t scratch it if you can help it. My dermatologist gave me Hydroxyzine HCL for the itching, after the first pill all the itching was gone; it was amazing after so many years of intense itching not to have to wake up in the middle of the night rubbing your leg against the edge of the bed because you broke out in the middle of the night.
    Dapsone did very little for me and it took so long to work to wasn’t worth it. I have found that Cat’s Claw, an herb, works much better and it only took 3 days to see the open sores start healing and any new blisters stayed small drying up quickly, didn’t do anything for the itching though.

  6. Herbert L. Smith Jr. says:

    I have had DH since the middle 60′s. Back then they didn’t know anything about Celiac. I was taking a sulfa drug until the Goverment banned it. Than I went to Dapsone. 100 mg. one a day. Then in the 80′s I found out that the Gluten was the cause of DH. After staying off Gluten for years I take one pill every 6 to 8 weeks. I am now 84 years old and check every label. They even put Wheat in some candy bars and ice cream.I guess by now everyone knows there is no cure and to stay Gluten free for life.

    • I’m glad to hear that you’re controlling your DH well with a gluten free diet. It sounds like you’re very careful about what you eat. Thanks for sharing your story here.

  7. David Augst says:

    I was diagnosed with DH in 2008. I started getting blisters, and sever pain, and went to the VA Hospital, and the doctor after the biopsy told me, i have the worse case of DH he has ever heard of. I first thought it might be Shingles but, the doctor told me that the blister pain from DH is 10 times the pain of Shingles, and the itching is much worse than poison ivy. He also told me that i probably have had Celiac disease for 10 or 15 years, and it went un-diagnosed. I can’t go anywhere that has a kitchen in use within 24 hours because, i am susceptible to gluten by, touch, or, ingestion by, eating or breathing. I am on Dapsone but, that is just so i can live in my home. Even when i go to the doctor office or hospital, i come home with hundreds of blisters!!! For me DH has been equivalent to a life sentence of house arrest.

    • Wow. That sounds really challenging. I know that I am not as sensitive to gluten as I was in the early years after my diagnosis. I’m not sure when my reactions began to lesson but it may have been about 5 years. I hope that happens for you. Thanks for sharing.

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