What is Dermatitis Herpetiformis?

If you have been recently diagnosed with Dermatitis Herpetiformis (DH) or Celiac Disease, you most likely have a bubbly rash on your skin.

Here is everything you need to know about this extremely itchy rash…

This is DH on my hands

What is Dermaitis Herpetiformis (DH)?

Dermatitis herpetiformis (DH) is an autoimmune reaction and can cause a common rash among anyone with or without celiac disease and is bumpy, bubbly, and can be very itchy. Celiac disease is an autoimmune disorder in the small intestine that flares when a protein called gluten is consumed. Gluten is found in wheat, barley, rye and sometimes oats.

DH is also known as Duhring’s disease, and it causes blisters that look very similar to herpes or warts, but this condition does not come from the herpes virus, instead it is triggered by gluten for anyone with a gluten sensitivity, or celiac disease.

Who is affected by Dermatitis Herpetiformis?

Dermatitis Herpetiformis affects 10-15% of people with celiac disease. DH can affect people of all ages but primarily will show up in people between the ages of 20-40 or in your teens. People of northern European descent are more likely than those of African or Asian heritage to develop DH. This condition is also more common in men than women.

Can you have DH if you do not have Celiac Disease?

Yes, if you have DH it does not mean that you also have celiac disease, and vice versa. People with DH are having an autoimmune reaction after consuming gluten. IgA antibodies are produced in the body and will show up on the skin through the DH rash.

Your family genetics plays a role in if you get DH and you are 5% more likely to get DH and/or celiac disease if a first-degree relative also has either conditions. The genes related to both celiac disease and DH is: HLA-DQ2 and HLA-DQ8.

What causes a DH flare in the body?

The main culprit of a DH flare in the body is consuming gluten.

There has also been research done on if iodine can cause DH. As mentioned on the Celiac Disease Foundation website, “According to John J. Zone, MD, Professor and Dermatology Chair at the University of Utah and CDF Medical Advisory Board member, “There is little question that ingestion of large amounts of iodine dramatically worsens DH. It should be understood,” he continues, “that iodine does not cause DH. It worsens DH. Gluten causes DH.” Dr. Zone explains that through seeing hundreds of celiac disease patients over the years, he has found that some react to highly concentrated solutions of iodine in cough medicines, shellfish, and kelp, often found in sushi. He also cautions that dietary supplements may contain large amounts of kelp or iodine (usually in the form of potassium iodide or sodium iodide) which can worsen DH.”

A note about stress, dermatitis itself can be brought on by stress. It can also be brought on by hormonal changes, the environment and irritating substances. HOWEVER, there is no research that I have been able to find about stress triggering dermatitis herpetiformis on it’s own. Consuming gluten is a very stressful event in the body of someone with celiac disease. Therefore, it is the act of eating gluten that flares the DH and the stress that comes with it could potentially exacerbate the symptoms.

How long after gluten exposure does Dermatitis Herpetiformis show up on the skin?

Typically, the rash will present itself within a few hours or up to 12-72 hours after consuming gluten. But keep in mind that it all depends on your individual body and how it reacts to gluten. For some, you may get the rash or you may not. The rash will usually always show up in the same location as the time before.

For people with a wheat allergy the rash may begin within minutes or up to 2 hours after eating gluten.

How does Dermatitis Herpetiformis present itself?

Above is DH on my buttocks

Dermatitis Herpetiformis looks like a cluster of bumps that can also have blisters form on it with clear fluid. It is an extremely itchy rash and can sometimes cause a burning or stinging sensation as well. More likely than not, it will show up bilaterally but it can sometimes be unilateral as well. Before the actual dermatitis herpetiformis rash breaks out, your skin may itch in that location, or it might feel as if it’s burning. This rash is most commonly found on:

  • Elbows
  • Knees
  • Buttocks
  • Back
  • Abdomen
  • Hairline
  • Hands

The locations above is not the full list, as the rash has been found on other parts of the body as well.

Not everyone with DH has celiac disease and vice versa. Inline with that fact, not everyone with DH will have the digestive symptoms that comes with having celiac disease either.

As mentioned above, it is sometimes mistaken as herpes, as it does look similar, but it has absolutely nothing to do with the herpes virus. This is however, why it is called “herpetiformis.” It is also commonly mistaken as warts if they are on the hands, acne, psoriasis, shingles, scabies, eczema, papular urticaria and other types of dermatitis. To properly know what it is, your doctor may send you for a biopsy of your skin and have some testing done on it.

How is Dermatitis Herpetiformis diagnosed?

DH is diagnosed through a skin biopsy and a blood test. A local anesthetic is used before they use a tool that looks similar to a small cookie cutter to punch a part of your skin out to be tested. It is only a 4mm sample of skin and can be stitched back up with minimal scaring.

It is important to have this test done by someone who has experience with it as the sample needs to be taken directly adjacent to the site of the rash. If the sample is taken right over the rash there may be a false negative as the rash itself is inflamed and this can destroy the Immunoglobulin A (IgA) antibodies they are looking for in the test.

A supplemental tissue transglutaminase (TTG) blood test can be done as well to check for the antibodies that are commonly found in people with celiac disease. If the blood test comes back positive and the biopsy has the regular findings of DH, then patients do not need to go for intestinal biopsy to confirm the diagnosis of celiac disease (this information can be found here).

What is the treatment for Dermatitis Herpetiformis?

Now that you are well rounded with the information about DH, you may be asking how is it treated?

Your dermatologist may prescribe you a drug called Dapsone. This can be prescribed as an oral tablet or as a topical gel to put directly on the lesion site. This medication is used to treat DH and helps by decreasing the swelling brought on by inflammation and helps to stop the growth of bacteria. This medication is also helpful to decrease the itching that can occur with DH and will start to take effect within 48-72 hours after starting to take the medication.

However, even with taking dapsone, you still need to follow a strict gluten free diet. Following a gluten free diet for life is what will help to put your DH rash into remission. There is an exception however, in some cases people may need to heal from DH and continue taking dapsone for up to 1-2 years to stop further outbreaks of the rash.

“Dapsone carries some significant risks, so healthcare providers generally recommend you stay on it only for long enough to bring the rash under control and to learn to eat gluten-free (Reference from Very Well Health).”

All in all, the only long-term treatment for Dermatitis Herpetiformis is following a gluten free diet for life.

A word from LEW to you

Whenever you have a new rash pop up on your body that you have not had before, ALWAYS get your rash looked at by your family doctor or a dermatologist. A rash is your bodies way of telling you that there is something wrong within your body. Even if you have had this rash before, it may look like it is presenting as something else that needs to be taken care of right away. Take it from me, listen to your body and get help right away.

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