Dermatitis Herpetiformis

What is Dermatitis Herpetiformis?

Dermatitis Herpetiformis is a rash that is extremely itchy.  It contains both bumps and blisters. It is chronic, so one can plan on having it for a good measure of time. It is usually seen in people who are 20 years of age or older, although children do get it from time to time.  It is common in both men and woman.  There is not a known cause to dermatitis herpetiformis.  It is linked to gluten disease, which is referred to as celiac sprue disease. Fifteen to twenty-five percent of those that have celiac sprue disease have dermatitis herpetiformis (DH).   The rash is  believed to be caused  when gluten from the foods and drinks in one’s diet are mixed with IgA, which then enters the bloodstream.  It will circulate in the body, causing small blood vessels in the skin to clog.  The white blood cells will then release complements, which are powerful chemicals, which create the rash.  However, iodine is needed for the rash to form, so if one is diagnosed with DH, it is best to avoid iodine in the diet.  Despite the name,the herpes virus does not cause this disease.

Dermatitis Herpetiformis Symptoms

Symptoms of dermatitis herpetiformis include a rash that looks like eczema, extremely itchy bumps and blisters that are usually seen on the back, buttocks, knees and elbow, scratch marks instead of blisters, or a rash that is the same size and shape on both sides. Usually before the skin breaks out into a rash, the skin that will develop the rash will begin to burn or itch. Bumps that look like pimples will appear,  with a clear liquid in the center.  After a few days, the bumps will heal, however, they will leave a purple mark that does last for a few weeks or more. As the old bumps go away, new ones will form.  The disease may go into remission, but can return at any time.   It is a lifelong disease, but remission does happen in 10 to 20 percent of patients.  DH can cause negative health effects, such as anemia, vitamin deficiencies, and gastrointestinal cancer.  This kind of cancer can develop quite easily as there is constant inflammation of the intestines.

If your doctor suspects that you have dermatitis herpetiformis, a skin biopsy will most likely be done.  A biopsy of the intestines may also be performed, as well as blood tests. The blood tests will look for antibodies that are present in the blood.

Dermatitis Herpetiformis Treatment

Often times when dermatitis herpetiformis is diagnosed, an antibiotic will be prescribed. Dapsone is a common one that is used. However, there are some serious side effects for this strong medication. To have full effect on DH, the dose will have to be slowly raised over a course of several months.  Weekly or bi-weekly blood testing may be needed if one is prescribed Dapsone.    The side effects include damage to the liver, muscle weakness, sensitivity to sunlight, anemia, and peripheral neuropathy. If your doctor does not feel the need to prescribe to you Dapsone, he or she may give one sulfapyridine, tetracycline, or another immunosuppressive drugs.  Do note that these are not as effective as Dapsone.

A huge treatment is going gluten free in the diet.  No food or drinks that you consume will be able to contain rye, oats, barley, or  wheat products. Getting rid of the gluten could lead to much less medication that one needs to take. Going gluten free will enhance bone density and nutrition, reduce the risk of intestinal lymphoma, and improve gluten enteropathy.   It could also reduce the risk of developing other autoimmune conditions.

7 replies
  1. Susan
    Susan says:

    I suffer from not having gluten. I have never had the rash that was described, thankfully. I am very used to being gluten free now. Yes it was an adjustment when I first started getting sick from eating gluten foods. I do miss those products that I can no longer have. However, it is a lifestyle that I will have to live with the rest of my life. I guess I look at it this way. I can eat something that has gluten in it and be in heaven because it tastes so good, and then in a few hours suffer. Or I can still eat good foods and not have to pay the price later in the evening or the day. Going gluten free is not the end of the world. Many supermarkets are now catering to us, and many foods are labeled Gluten free. It is a change in the beginning but just keep telling yourself how good you will feel. Plus you can even lose weight by not eating the gluten, so overall it is a win win situation.

  2. Carissa
    Carissa says:

    I have a rash that is on my elbow. I wonder if perhaps it could be dermatitis herpetiformis. From all I have read in this article, it sounds like it could be. I really do not want to have a skin biopsy done. I fear that it would hurt to have skin taken like that from my elbow. How much skin do they take for a skin biopsy and what does it feel like? That is what is putting me off from contacting a doctor. I don’t want to be in pain and I want this healed, but I do not want to have to do the skin biopsy.

    • Adele
      Adele says:

      Carissa, my son had the biopsy performed by his dermatologist….don’t worry about the pain as the area is well numbed before the procedure…the only pain was from the needle pricks injecting the numbing meds.
      His DH rash was well spread in patches over his entire body , so u may be worrying about having DH & it may be something else? Best thing to do is to see a dermatologist. Goodluck:)

  3. Haddy
    Haddy says:

    I see that it says avoid iodine if you have dermatitis herpetiformis. However, I thought that one needed some iodine in their diet in order to be healthy? Does this apply to most people? How easy is it to cut out all iodine? Sure you can cut it out from your diet, but I am assuming that processed foods and such could still have that iodine it them?

  4. Tracy
    Tracy says:

    What a great read. I now understand dermatitis herpetiformis much better now. I never knew that with Dapsone you had to have blood work done that often. My friend suffers from DP. He is on Dapsone but never once said anything to me about doing weekly or bi-weekly blood tests. I am sure that he has been on it for a while now. I wonder if his blood testing is a thing of the past now or if he just has to have it taken once in a while…maybe all his tests came back good and he was cut back on testing? I am not certain. But I want to thank you for letting me understand this disease better. I know now why my friend can not have gluten foods or refuses to eat anything with gluten.

  5. Merrisa
    Merrisa says:

    I have DH. Currently I am in remission from it. I had a flare up about a year ago, and have not had one since. I did switch my diet to be gluten free. Once you understand what gluten does to the body, you might consider switching to a gluten free diet. I stick to it strictly. Absolutley no gluten for me. I feel wonderful now, and am very happy that my skin does look better. Plus I agree with the no iodine. I watch the salt that I buy and make sure that it is iodine free.

  6. Tim
    Tim says:

    I was diagnosed with coeliac disease about 1 year ago, it came up through regular blood work, I didn’t have any symptoms. No sickness or stomach/gut issues. But I slowly removed all gluten from my diet as I didn’t want to increase my chances of developing intestinal cancer. Also I was worried about symptoms of coeliac slowly developing.
    While cutting out the gluten, the rash appeared. It started on elbows, knees and buttocks. After various incorrect diagnoses and treatments I had a biopsy done. By this time the rash was under my arms, armpits, all around groin area, and all over my scalp. It was not only itchy but painfull. I wasn’t sleeping properly as I would wake many times during the night scratching and bleeding. My biopsy came back positive for DH. And my doctor put me on a low dose of dapsone. It cleared up almost immediately. I stayed on dapsone for around 3 months and had regular bloodwork etc. But my doctor felt that the drug was too dangerous for me to stay on. Even though my bloodwork was fine. She felt that if I stayed strictly gluten free that I would be fine. Well, the rash came back, and I put it down to discovering that the sauce I put on my steak had a warning, ‘may contain traces of gluten’ I went to my pharmacist and asked if he could advance me a script of dapsone which he did. Then went to my doctor the following week and told her what had happened. She understood but really didn’t want me on dapsone. So I threw the rest of the bottle away. This was about 2 months ago. Since then I have been super strict with my gluten free diet. Double checking absolutely everything. Not eating out. Sticking to simple foods. And until last week, all was good. Now the DH has flared up worse than I’ve ever had it. I’ve gone through everything and can’t see that I’ve had any gluten. I just can’t understand why it would flare up, and so badly. The itch and the pain are unbearable. My scalp is covered in sores and scabs, as is my neck, armpits stomach, belt-line buttocks, groin thighs, elbows and knees, calves and ankles. It really is awful. I haven’t slept more than 4 or 5 hours in the last week and am terrified to eat anything. Even my lower eyelids are itchy and sore. I have an appointment with my doctor today but I’m so worried that she will just say I must have inadvertently had gluten. And that she won’t prescribe the dapsone.
    I’m sorry for using this forum to vent and whinge. I just needed to get it out. If anyone has any ideas about how to relieve the itch and the pain. Please let me know. Thanks.


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