Dermatitis Herpetiformis

What is dermatitis herpetiformis?

Dermatitis herpetiformis is a long-term (chronic) condition that causes itchy bumps and blisters on your skin as a result of a gluten sensitivity. Gluten is found in common foods such as wheat, rye and barley.

Most people diagnosed with dermatitis herpetiformis have celiac disease, but they may or may not have gastrointestinal symptoms like diarrhea, weight loss and abdominal discomfort. This happens because celiac disease can be asymptomatic with dermatitis herpetiformis. Dermatitis herpetiformis is sometimes called the skin manifestation of celiac disease. You can have dermatitis herpetiformis without having celiac disease.

Other terms for dermatitis herpetiformis include:

• Duhring’s disease.
• The gluten rash.
• The celiac rash.

Is dermatitis herpetiformis caused by the herpes virus?

No, the herpes virus doesn’t cause dermatitis herpetiformis.

In the word “dermatitis,” “derm” means “skin” and “itis” means “inflammation.” The word as a whole means “inflammation of the skin.”

The word “herpetiformis” refers to the blisters and bumps that look like herpes lesions. The only connection it has to the herpes virus is sharing its name and the way it looks.

Who does dermatitis herpetiformis affect?

Dermatitis herpetiformis can affect anyone at any age. However, it’s most likely to affect people:

• Between the ages of 30 and 40.
• Who have celiac disease.
• Who have a first relative with dermatitis herpetiformis or celiac disease.
• Who have a history of autoimmune conditions in their biological family history, like anemia, thyroid disease, vitiligo, Type 1 diabetes, alopecia areata and Addison’s disease.
• Men and people assigned male at birth, but women and people assigned female at birth have it, too.
• Of Northern European descent.

It’s possible but rare among children, people who are Black and people of African or Asian descent.

How common is dermatitis herpetiformis?

Dermatitis herpetiformis affects 10% to 25% of people diagnosed with celiac disease. An estimated 0.4 to 2.6 out of 100,000 people in the United States receive a dermatitis herpetiformis diagnosis each year.

What are the symptoms of dermatitis herpetiformis?

Symptoms of dermatitis may include:

• Skin problems: The most common symptoms of dermatitis herpetiformis affect your skin. You may experience discolored bumps (lesions) and itchy, sometimes burning blisters. These bumps and blisters can form on a rash.
• Oral issues: Dermatitis herpetiformis can affect your tooth enamel. You may see pitting, discoloration or horizontal grooves on your teeth. Although rare, you might have canker sores.
• Gastrointestinal problems: Many people with dermatitis herpetiformis are sensitive to gluten and have celiac disease. Celiac disease inflames and damages your small intestine. You may or may not have symptoms of celiac disease, like bloating, cramping, diarrhea, constipation and stomach pain if you also have dermatitis herpetiformis.

What does dermatitis herpetiformis look like on my skin?

Dermatitis herpetiformis looks like a cluster of itchy bumps on a patch of discolored skin (rash). These bumps can be darker than your natural skin tone or red to purple. Blisters can also form on your skin. Blisters are circular, often fluid-filled lumps on the surface of your skin. Blisters caused by dermatitis herpetiformis sometimes look like symptoms of herpes.

Where will I have skin symptoms of dermatitis herpetiformis?

Dermatitis herpetiformis commonly occurs on your:

• Knees.
• Elbows.
• Buttocks.
• Hairline and scalp.

Can dermatitis herpetiformis cause hair loss?

Dermatitis herpetiformis doesn’t directly cause hair loss. However, hair loss may occur if you have celiac disease. Many people diagnosed with celiac disease also have dermatitis herpetiformis.

What causes dermatitis herpetiformis?

An autoimmune reaction to gluten causes dermatitis herpetiformis. When you eat and digest food products that contain gluten, your immune system activates and produces antibodies (IgA). These antibodies deposit into your skin, which causes itchy bumps and blisters.

Autoimmune conditions like dermatitis herpetiformis can run in your biological family. You’re more likely to get dermatitis herpetiformis and/or celiac disease if a first-degree relative has it. The genes closely associated with dermatitis herpetiformis are HLA-DQ2 and HLA-DQ8.

Is dermatitis herpetiformis contagious?

No. You get dermatitis herpetiformis when your body is sensitive to gluten.

How is dermatitis herpetiformis diagnosed?

A healthcare provider will diagnose dermatitis herpetiformis after physically examining your skin. They may offer tests to confirm a diagnosis like:

• A skin biopsy: Your healthcare provider may take a sample of your skin to check for evidence of dermatitis herpetiformis.
• A blood test: There are two antibodies commonly found in people with celiac disease: anti-endomysial and anti-tissue transglutaminase. If you test positive for these antibodies, and if your skin biopsy confirms dermatitis herpetiformis, then you likely have celiac disease. Some people need to have an intestinal biopsy to confirm celiac disease.

The tests will help determine if you have this type of dermatitis or a different skin condition.

What questions might a healthcare provider ask to diagnose dermatitis herpetiformis?

When you meet with a healthcare provider, they might ask the following questions:

• Do you have itchy bumps or blisters that itch or burn?
• Where are these bumps and blisters located on your body?
• Do you have celiac disease?
• Is there anyone in your immediate family who has celiac disease?
• Have you been tested for celiac disease?
• Do you have problems with your tooth enamel?
• Do you have intestinal pain, stomach cramps, bloating, diarrhea and/or constipation?
• Have you discussed your skin conditions with a dermatologist?

Can dermatitis herpetiformis be misdiagnosed?

Sometimes, dermatitis herpetiformis is mistaken for:

• Herpes.
• Eczema.
• Scabies.
• Papular urticaria.

A healthcare professional may need to test your skin to determine an accurate diagnosis.

Will I get another disease in addition to dermatitis herpetiformis?

You may be at a higher risk of developing another autoimmune condition if you have dermatitis herpetiformis, including:

• Thyroid disorders.
• Pernicious anemia.
• Diabetes.

You’re also at a higher risk of developing:

• Small-bowel lymphoma.
• Vitiligo.
• Addison’s disease.

Can you have dermatitis herpetiformis without celiac disease?

Yes, it’s possible to have dermatitis herpetiformis without celiac disease. Of those diagnosed with celiac disease, 10% to 25% also have dermatitis herpetiformis. If you don’t have celiac disease, then there isn’t any food you need to avoid with regard to dermatitis herpetiformis. If you have celiac disease, you must avoid all foods with gluten to prevent symptoms.

How is dermatitis herpetiformis treated?

Treatment for dermatitis herpetiformis includes:

• Eating a gluten-free diet.
• Taking an oral antibiotic (dapsone).

Dapsone will relieve your itching as soon as an hour, and typically before 48 hours. If dapsone doesn’t help, your healthcare provider may prescribe sulfapyridine or sulfasalazine.

You may need to continue taking dapsone for one to two years to prevent more dermatitis herpetiformis bumps and blisters from forming.

How does a gluten-free diet help treat dermatitis herpetiformis?

A gluten-free diet helps your dermatitis herpetiformis by:

• Reducing the need for medications to manage your skin condition.
• Reducing the risk of developing other autoimmune diseases.
• Reducing the risk of intestinal lymphoma.
• Improving any gluten-sensitive intestinal disease.
• Enhancing nutrition and bone density.

Gluten triggers your immune system to overwork, and it targets your skin. When you eat gluten, you’ll experience symptoms of dermatitis herpetiformis. When you avoid gluten, you won’t have symptoms.

Common foods to avoid that contain gluten include:

• Barley.
• Bread (rye and wheat).
• Cakes.
• Crackers.
• Cereals.
• Pasta.

Getting the full results of a gluten-free diet may take several months. See a nutritionist if you need help with your new diet.

Can I treat dermatitis herpetiformis at home?

There aren’t any at-home remedies that can relieve your dermatitis herpetiformis symptoms, aside from eating gluten-free. This isn’t like other types of dermatitis (like contact dermatitis) that improve with moisturizers, creams and other treatments. It isn’t recommended that you use at-home remedies like apple cider vinegar on your skin to treat dermatitis herpetiformis, as it could irritate your skin.

Are there side effects of the treatment?

A healthcare provider will monitor how well you feel while taking dapsone with regular blood tests. While rare, if the dermatitis herpetiformis flare-ups continue despite the gluten-free diet and medication, you might need to remove iodine from your diet as well. A healthcare provider will help you navigate changes to your diet to help you feel better.

How soon after treatment will I feel better?

When you begin treatment with medications, you may feel less itchy within an hour or up to 48 hours. It could take a few days to a few weeks for your skin to clear up completely. The bumps and blisters will sometimes go away spontaneously. They may leave behind brown or pale marks on your skin.

How can I prevent dermatitis herpetiformis?

There aren’t any known ways to prevent dermatitis herpetiformis. You can reduce the likelihood of your symptoms flaring up by eating a gluten-free diet.

What can I expect if I have dermatitis herpetiformis?

The symptoms of dermatitis herpetiformis can come and go throughout your life because there isn’t a cure. You may have periods of remission, which are timeframes when you don’t have any symptoms, and periods when symptoms flare up. Remission is spontaneous, and only about 12% of people diagnosed with dermatitis herpetiformis experience it. Even if you’re in remission, you should still eat a gluten-free diet.

Should I see a specialist?

A dermatologist can help you treat symptoms that affect your skin. You may want to visit a dietitian or a nutritionist if you have celiac disease to help you eat a gluten-free diet.

Is there a cure for dermatitis herpetiformis?

There’s no cure for dermatitis herpetiformis. If you don’t eat gluten, the bumps and blisters caused by dermatitis herpetiformis will go away. Staying on a gluten-free diet keeps your symptoms in remission. Dermatitis herpetiformis doesn’t harm your body and it’s not deadly.

When should I see my healthcare provider?

See a healthcare provider as soon as you notice symptoms of dermatitis herpetiformis. This condition can cause uncomfortable itchiness and a burning sensation that can interfere with your quality of life. You’ll want to get treatment as soon as possible.

What questions should I ask my doctor?

• Is this dermatitis herpetiformis or a different skin condition?
• Which medication do you recommend?
• Do I have dermatitis herpetiformis or both dermatitis herpetiformis and celiac disease?
• Should I get tested for celiac disease?
• Should I have my kids and close family members tested?
• Do I have any other types of skin conditions?
• Do I need to see a dermatologist?
• Do I need to see a nutritionist?

A note from Cleveland Clinic

Living with dermatitis herpetiformis can be difficult. Giving up gluten is a challenging but necessary consequence of celiac disease and dermatitis herpetiformis. You may feel awkward in social situations if your bumps and blisters are visible. You may feel distracted by the itchiness — you might even be unable to sleep because of it. Be sure to follow your healthcare provider’s instructions for treatment. Take your medicines and read product labels to avoid eating food that has gluten. If you stay gluten-free, then you’ll be dermatitis herpetiformis-free, too.