What is dermatitis herpetiformis? What does it look and feel like?
Dermatitis herpetiformis (sometimes known as DH, Duhring’s disease, the gluten rash or the celiac rash), is a long-term (chronic) skin condition that causes itchy bumps and blisters. The direct cause of dermatitis herpetiformis is a sensitivity to gluten. Gluten is found in common foods such as wheat, rye and barley.
Of those diagnosed with celiac disease, 10% to 25% also have dermatitis herpetiformis. Dermatitis herpetiformis patients usually don’t have the digestive symptoms that go along with celiac disease.
Almost all patients with dermatitis herpetiformis have celiac disease, though the disease is asymptomatic (they have no gastrointestinal symptoms). Dermatitis herpetiformis is sometimes called the skin manifestation of celiac disease. Diarrhea, exhaustion, weight loss and abdominal discomfort are all symptoms of celiac disease.
In the word “dermatitis,” “derm” means “skin” and “itis” means “inflammation.” The word as a whole means “inflammation of the skin.” The word “herpetiformis” is used because the blisters and bumps look like herpes lesions. Note, however, that dermatitis herpetiformis is not caused by the herpes virus. The only connections it has to the herpes virus is sharing its name and the way it looks.
How common is dermatitis herpetiformis?
Dermatitis herpetiformis is most common in people of northern European heritage. One statistic states that up to 75 per 100,000 people in northern Europe have it. Dermatitis herpetiformis affects 10% to 25% of celiac disease patients. It is rare in children and in people of African American or Asian descent.
Can dermatitis herpetiformis be misdiagnosed?
Sometimes dermatitis herpetiformis is mistaken for herpes, scabies, papular urticaria and other types of dermatitis. Your healthcare professional may need to test your skin to determine an accurate diagnosis.
What does dermatitis herpetiformis look like?
Dermatitis herpetiformis looks like a cluster of itchy bumps that can be easily confused with acne or eczema. Blisters can also form, and you could be misdiagnosed with herpes.
Dermatitis herpetiformis commonly occurs on the:
What is the difference between how dermatitis herpetiformis looks and how herpes looks?
The bumps and blisters of herpes look similar to those produced by dermatitis herpetiformis.
Who does dermatitis herpetiformis affect? Who is at risk?
Dermatitis herpetiformis can affect anyone at any age. However, it is most likely to affect people between the ages of 30 and 40. You’re more likely to have it if you’re of northern European descent, and men commonly get it more often than women. Men are also more likely than women to have oral or genital problems.
You’re at a slightly higher risk – five percent – if you have a first relative who has dermatitis herpetiformis or celiac disease. Many people with dermatitis herpetiformis also see autoimmune diseases in their families. Those diseases include pernicious anemia, thyroid disease, vitiligo, type 1 diabetes, alopecia areata and Addison’s disease.
Is dermatitis herpetiformis contagious?
No. No type of dermatitis is contagious.
How does dermatitis herpetiformis affect the rest of my body?
Dermatitis herpetiformis does not harm the rest of your body, and it is not deadly. Also, if you have dermatitis herpetiformis, that doesn’t mean that you have celiac disease. It also does not mean that you have herpes.
Can dermatitis herpetiformis come and go?
Yes. The symptoms of dermatitis herpetiformis can “come and go.” There are periods of remission (defined as two years of zero symptoms) and periods of flare. Remission is spontaneous, and only about 12% of people experience it. Even if you’re in remission it is still recommended that you eat a gluten-free diet.
The bumps and blisters will sometimes go away spontaneously. They may leave behind brown or pale marks on your skin.
Can dermatitis herpetiformis cause hair loss?
Dermatitis herpetiformis does not directly cause hair loss. However, hair loss can be associated with celiac disease, and 10% to 25% of patients with celiac disease also have dermatitis herpetiformis.
Is dermatitis herpetiformis an autoimmune disease?
Yes. Dermatitis herpetiformis is a chronic autoimmune skin condition. Celiac disease is also an autoimmune disorder.
Symptoms and Causes
What causes dermatitis herpetiformis?
Patients with dermatitis herpetiformis have an autoimmune reaction when they eat gluten. When gluten is digested, the immune system is triggered. Antibodies (IgA) are produced, which subsequently deposit in the skin. This causes the itchy, red bumps and blisters commonly seen in dermatitis herpetiformis.
Genetics play a role in dermatitis herpetiformis. You’re five percent 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.
What are the signs and symptoms of dermatitis herpetiformis?
If you have dermatitis herpetiformis, you may have one or more of three problems: skin problems, problems in your mouth and gastrointestinal problems.
- Skin problems: Skin problems are the most common and the key sign of dermatitis herpetiformis. Problems include red bumps (lesions) and itchy, sometimes burning blisters. Skin problems are found on your elbows, buttocks, knees and scalp.
- Oral problems: Dermatitis herpetiformis can cause tooth enamel problems. You may see pitting, discoloration, horizontal grooves and (rarely) canker sores.
- Gastrointestinal problems: Celiac disease inflames and damages the small intestine. Almost all people with dermatitis herpetiformis are sensitive to gluten and have celiac disease but are less likely to have gastrointestinal issues. But, patients who do have symptoms may have bloating, cramping, diarrhea, constipation and pain.
How do you get dermatitis herpetiformis?
You get dermatitis herpetiformis when your body is sensitive to gluten. It is not something that is contagious, or an infection.
Does dermatitis herpetiformis hurt?
Dermatitis herpetiformis sometimes causes a burning sensation in addition to the itching.
Do certain foods worsen or improve dermatitis herpetiformis?
Any food that has gluten in it (barley, rye, wheat, some breads, cakes, crackers, cereals, pastas) will make your dermatitis herpetiformis worse.
How long does dermatitis herpetiformis last?
If you continue to eat a gluten diet, then your dermatitis herpetiformis will stay with you all of your life. Prevent that by eating gluten-free.
Diagnosis and Tests
How is dermatitis herpetiformis diagnosed? What tests are done?
After examining your bumps and blisters, your healthcare provider may do a skin biopsy and/or blood test to see if you have dermatitis herpetiformis. The tests will help determine if you have this type of dermatitis or a different skin disorder.
- Skin biopsy. Your healthcare provider may take a sample or two of your skin to check for evidence of dermatitis herpetiformis.
- 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.)
What questions might my healthcare provider ask to diagnose dermatitis herpetiformis?
- Do you have itchy bumps?
- Do you have 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?
There are some conditions that can affect people with dermatitis herpetiformis who also have celiac disease. It is not guaranteed that you will have these problems if you have dermatitis herpetiformis, but there is a risk.
- Recurrent miscarriages (spontaneous abortion).
- Canker sores and irritation around your mouth.
- Dry skin, nail and hair abnormalities.
- Fatty liver resulting in abnormal liver function tests.
- Neurological problems: ataxia (loss of balance), polyneuropathy and epilepsy.
- Non-Hodgkin lymphoma (NHL) affecting the intestines or any part of the body.
- Heart problems: pericarditis and cardiomyopathy.
Management and Treatment
How is dermatitis herpetiformis treated? What medicines help?
Dermatitis herpetiformis is treated with a gluten-free diet and an oral antibiotic called dapsone. Dapsone will relieve your itching in as soon as an hour, and typically before 48 hours. If dapsone doesn’t help, your healthcare provider may prescribe sulfapyridine or sulfasalazine. These medications are less effective.
You may need to continue taking dapsone for one to two years to prevent more dermatitis herpetiformis bumps and blisters from forming. Getting the full results of a gluten-free diet may take several months. See a nutritionist if you need help with your new diet.
A gluten-free diet helps your dermatitis herpetiformis by:
- Reducing the need for medication to control the 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.
What can I do at home to relieve my symptoms of dermatitis herpetiformis?
There are no at-home remedies that can relieve your dermatitis herpetiformis symptoms, aside from eating gluten-free. This is not like other types of dermatitis (like contact dermatitis) that can be helped by moisturizers, oatmeal baths, sunlight and other treatments.
Is there a cure for dermatitis herpetiformis?
If you don’t eat gluten, the bumps and blisters will most likely go away.
Are there complications/side effects of treatment for dermatitis herpetiformis?
You’ll need to have regular blood tests if you’re taking dapsone. Also, 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. Talk about that possibility with your healthcare provider.
Should I see a dermatologist?
Skin conditions are best treated by a dermatologist. Also, if you have celiac disease, see a dietician for help eating gluten-free.
How soon after treatment will my symptoms improve?
The dapsone should improve the itchiness within 48 hours.
How can I reduce my risk of dermatitis herpetiformis?
There are no known medications that can prevent dermatitis herpetiformis.
What foods can I eat or avoid to reduce my risk of dermatitis herpetiformis?
If you don’t have celiac disease then there is no food you need to avoid with regards to dermatitis herpetiformis. If you have celiac disease, you must avoid all foods with gluten. Doing that will help you manage your celiac disease and your dermatitis herpetiformis.
Outlook / Prognosis
How long will I have dermatitis herpetiformis?
Dermatitis herpetiformis can be lifelong unless you eat gluten-free.
Can dermatitis herpetiformis go away on its own?
Yes. Dermatitis herpetiformis is not always predictable. It may go away on its own, or it may go away with treatment. Sometimes the bumps and blisters leave behind a small section of color.
Can dermatitis herpetiformis be cured?
The symptoms of dermatitis herpetiformis can be successfully managed with a gluten-free diet and medication.
Can dermatitis herpetiformis get worse?
If you eat gluten then yes, it is guaranteed that your dermatitis herpetiformis will get worse.
Is dermatitis herpetiformis contagious?
Dermatitis herpetiformis, like any other type of dermatitis, is not contagious. It can’t be spread from you to anyone else.
Will I get another disease in addition to dermatitis herpetiformis?
Those with dermatitis herpetiformis are at a higher risk for other autoimmune disorders including:
- Thyroid disorders.
- Pernicious anemia.
They is also a higher risk for:
- Small-bowel lymphoma.
- Addison’s disease.
How do I take care of myself?
Take your medications on time and as prescribed. Follow your healthcare provider’s instructions. Don’t eat any gluten.
Giving up gluten is a difficult but necessary consequence of celiac disease and dermatitis herpetiformis. It means avoiding all of these ingredients and foods, and more:
- Wheat, rye and barley.
- Beer and malt.
- Pastas and noodles.
- Cookies and brownies.
Make sure you do your homework and find a complete list of foods you should stay away from. Also, be sure you understand the derivatives of the foods. For example, varieties and derivatives of wheat include graham, farina and durum. If you eat one of those ingredients, you’re essentially eating wheat.
When should I see my healthcare provider?
See your healthcare provider as soon as you notice the symptoms of dermatitis herpetiformis. This condition can cause uncomfortable itchiness and burning that can interfere with your quality of life. You’ll want to get treatment as soon as possible.
What questions should I ask my healthcare provider about dermatitis herpetiformis?
- Is this dermatitis herpetiformis or a different skin condition?
- Which medication should I be on: dapsone, sulfapyridine or sulfasalazine? Or a different medication?
- 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 get tested?
- Do I have any other types of skin conditions?
- Do I need to see a dermatologist? Can you recommend one?
- Do I need to see a nutritionist? Can you recommend one?
A note from Cleveland Clinic
Living with dermatitis herpetiformis can be difficult. 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.
Starting a new diet is also difficult. Going gluten-free means giving up foods that might be your favorites like cookies, muffins and brownies. But remember that it’s worth it to avoid those itchy bumps and burning blisters, not to mention the symptoms of celiac disease.
Be sure to follow your healthcare provider’s instructions. Take your medicines and never, ever eat food that has gluten. If you stay gluten-free then you’ll be dermatitis herpetiformis-free, too.
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