What Is Celiac Disease Rash?

Here's what you should know about the itchy condition.

Most people think celiac disease only affects the gut. After all, gluten (a type of protein naturally found in wheat, barley, rye, and triticale) can damage the small intestine. But gut-related changes aren't the only symptoms of celiac disease. A wide range of symptoms can affect virtually every part of the body.

Because of the varied symptoms it causes, celiac disease can be hard to identify. And many people with it go undiagnosed. According to the patient advocacy and research organization Beyond Celiac, up to 83% of Americans who have celiac disease are undiagnosed or misdiagnosed with other conditions.

But one symptom, in particular, can make diagnosis especially tricky. Celiac disease rash, aka dermatitis herpetiformis (DH), is an itchy, blistering skin rash that could be the only symptom of celiac disease.

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DH is the skin form of celiac disease, affecting 15% to 25% of individuals with celiac disease, says Beyond Celiac. The rash most often develops in adults aged 30 to 40, with men and people of northern European descent most at risk, per the National Organization for Rare Disorders.

The rash is the result of a localized immune response, and it appears symmetrically on both sides of the body in high-flex places, like the elbows, knees, and butt, as well as the face, scalp, back, and groin, the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) notes. The rash develops from consuming gluten, not touching gluten.

In more than 80% of individuals with DH, the rash is the only symptom of celiac disease. "Most people do not think this is celiac. Instead of gluten triggering an inflammatory response in the gut, it triggers this response in the skin," Salvatore Alesci, MD, PhD, chief scientist and strategy officer at Beyond Celiac, told Health. "If you have the dermatitis herpetiformis rash, you have celiac disease. Period. You do not need to have any gastrointestinal symptoms."

What Does Celiac Disease Rash Feel and Look Like?

The itch is one of the worst and most significant parts of celiac disease rash. "Patients complain that they're so itchy, they want to take their skin off," said Dr. Alesci. Furthermore, individuals with the rash may experience a burning sensation before any lesions appear, the NIDDK says.

In general, the rash consists of bumps and blisters and is typically symmetrical where it appears, per MedlinePlus. Additionally, instead of blisters, some individuals might have scratch marks or skin erosions (shallow skin lesions).

But just like diagnosing celiac disease itself can be hard, identifying celiac disease rash can be tough, too. That's because the blistering lesions look similar to herpes, which can lead to a misdiagnosis. (As Dr. Alesci points out, one of the root words of dermatitis herpetiformis is "herpes" because of how much the two conditions look alike.)

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Due to the intensity of the itch, it's common for individuals with DH to scratch so hard that they remove these lesions with their nails, making the rash look different, according to the NIDDK.

"Because dermatitis herpetiformis is so itchy, it can frequently be misdiagnosed as eczema, especially if someone comes in after they popped and scratched off the blisters," Amy Burkhart, MD, an integrative medicine physician and registered dietitian who specializes in gut health, told Health. If your provider has told you that you have eczema or a rash and typical treatment for those conditions isn't working, then ask for a referral to a dermatologist, advised Dr. Burkhart.

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A fifth of people with DH will also have dental symptoms, the NIDDK reports. You might see enamel problems (such as teeth discoloration) or oral lesions (canker sores), said Dr. Alesci. If you have both a rash and teeth discoloration or frequent cavities, it's a good time to ask your dermatologist if your rash could be a manifestation of celiac disease.

Diagnosis

If DH is suspected, your dermatologist will need to take a skin biopsy next to the lesion to get an accurate test result. If you have DH, they will find IgA antibody deposits from the biopsy, and that will confirm the diagnosis, according to the NIDDK. (IgA antibodies are one of the most common antibodies in the body, but they are often found at high levels in people with autoimmune conditions like celiac disease.) At that point, while an intestinal biopsy probably won't be needed, some providers might still recommend one, said Dr. Alesci.

Of note, diagnosing DH in children is not always easy, as its presence may not fit typical DH symptoms or may occur at the same time as eczema, per the authors of a December 2016 article published in the Annals of Medicine.

Treatment

Unfortunately, DH is stubborn, and a strict gluten-free diet is the only treatment for the underlying disease. "Patients need to be on a strict gluten-free diet for two years," said Dr. Alesci. It can take that long for the rash to begin to clear.

Going gluten-free eases symptoms a lot quicker for people who have celiac disease without DH. Even with a gluten-free diet, medication therapy may need to be continued from a few months to two years in persons with DH, according to NIDDK.

That's why a gluten-free diet isn't the only treatment for DH. You'll also need relief from the itchiness and burning of the rash in the meantime.

Dermatologists are experts in the skin and are best for helping diagnose and treat DH. If you're diagnosed, your provider will likely prescribe dapsone, an oral antibiotic and anti-inflammatory that will help relieve the symptoms of the rash. Sometimes, dapsone may need to be taken for one or two years, according to Dr. Alesci.

If dapsone doesn't help, then people with DH might also use a topical hydrocortisone or lidocaine cream for relief, said Dr. Burkhart. Dapsone can also cause side effects, including hemolytic anemia, which is when red blood cells are destroyed faster than they can be made, according to Johns Hopkins Medicine.

If side effects of dapsone are experienced, alternative medications, including sulfapyridine (an antibiotic) or sulfasalazine (a disease-modifying anti-rheumatic drug used to treat autoimmune conditions), may be prescribed, per the Merck Manual.

One thing you want to avoid is taking an oatmeal bath, which is a commonly recommended skin-soothing treatment. Even if this rash isn't triggered by touching gluten, it's best to stay away from oatmeal soaks, according to Dr. Burkhart. "People who have celiac can react to oatmeal," said Dr. Burkhart. You'll also want to practice gentle skincare—such as taking short, cool showers—to promote skin barrier repair and function.

Without treatment, there are some potential complications of DH, including autoimmune thyroid disease and the development of certain cancers, according to MedlinePlus.

Prevention

The goal is to eventually stop medication once the rash has disappeared. But you'll still need to stay gluten-free. This won't just help clear up the rash long-term: It will also prevent gluten from damaging the small intestines.

According to the NIDDK, it's possible for DH to go into remission, where lesions and DH symptoms are not present for two years or more without treatment or avoiding gluten. But while a gluten-free diet will decrease the risk of DH coming back, it's not a guarantee. Relapses of DH are common, according to Dr. Alesci. However, in some cases, even without treatment, DH can disappear seemingly at random, though no one knows why.

For some people, a diet high in iodine may trigger future flares of DH, noted Dr. Burkhart. If that's the case, your healthcare professional or a registered dietitian can help give you advice about avoiding iodine-rich foods, such as seaweed, cod, shrimp, yogurt, milk, and iodized salt, according to Celiac Disease Foundation.

A Quick Review

If you become diagnosed with celiac disease, it's possible for your only symptom to be celiac disease rash or DH. The rash comes with bumps and blisters; it tends to be itchy and can sometimes feel like it's burning. If DH is suspected, a skin biopsy will be needed to confirm the diagnosis.

Maintaining a gluten-free diet can help with celiac disease rash—though medication therapy may be necessary to treat the rash and get relief from the itchiness that comes with it. Overall, it's important to see a healthcare professional if you end up with a stubborn rash to determine the cause.

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