Dermatitis Herpetiformis: What It Looks Like and What You Can Do

Here’s a blunt fact: dermatitis herpetiformis (DH) is not herpes. It’s an intensely itchy skin condition that causes clusters of small blisters and bumps, usually on elbows, knees, buttocks, and the scalp. The itch can feel unbearable and often shows up alongside gut problems tied to gluten sensitivity.

If you’ve been scratching off and on for months, or you get repeating bursts of the same rash in the same spots, DH could be the cause. The rash often comes in waves — bad for a few weeks, better for a while, then back again. People describe the itch as deep and relentless, worse at night.

What Causes It and How Doctors Find It

DH is an autoimmune reaction closely linked to celiac disease. Eating gluten (wheat, rye, barley) triggers an immune response that deposits IgA antibodies in the skin. Your dermatologist will usually do a skin biopsy — not the same as a blood test — to look for those granular IgA deposits in the dermal papillae. Blood tests for celiac antibodies and a gastroenterology referral are common next steps.

Don’t be surprised if your doctor asks about digestive symptoms: bloating, diarrhea, or unexplained weight loss. Some people with DH have subtle or no gut symptoms at all, which is why the skin test matters.

Treatment That Actually Helps

Treatment has two parts: quick relief for the rash and long-term control. Dapsone is the most common drug to stop itching fast — many people see relief within days. Dapsone has side effects (like anemia or low white blood cells) so your doctor will order blood tests before and during treatment. If dapsone isn’t right for you, other antibiotics or meds may be tried.

The longer-term, most important step is a strict gluten-free diet. Over time, avoiding gluten reduces the immune attack that causes the rash. Some people can stop medication after months on a strict diet; others need meds longer. Work with a dietitian if you’re unsure how to follow the diet safely.

For day-to-day relief, cool compresses, fragrance-free moisturizers, and loose cotton clothing help reduce irritation. Antihistamines may not cure the rash but can help you sleep by reducing the urge to scratch.

When should you see a doctor? If the rash is spreading, not improving after a short trial of treatment, or if you have new digestive symptoms, get evaluated. If you start dapsone, keep up with lab checks. Pregnant or breastfeeding? Talk to your doctor — some treatments change during pregnancy.

DH is manageable with the right steps: accurate diagnosis, short-term medication to control the itch, and a strict gluten-free plan to prevent relapses. You don’t have to live with constant scratching — ask for a skin biopsy and a celiac workup if this sounds familiar.