Dermatitis Herpetiformis (Itchy Skin Rash Seen in Celiac Disease)

Itchy, Oozing, Painful Rash?  I had a real bad case of this, stumping all doctors and a top NIH dermatologist for so many years; it comes back if I get ‘glutened’ and I get it primarily on my scalp and the back of my arms but sometimes it will show up on my abdomen, buttocks, ankles and my face.

It could be an autoimmune condition known as Dermatitis Herpetiformis.  The complete article is below and written by Caroline Doenhoefer, Editorial Assistant at Delight Gluten Free Magazine. I chose to copy the entire article because I don’t think that paraphrasing this could do it justice. If you have GI Symptoms and a rash, make sure you point this out to your gastroenterologist! From what I see and hear from our customers in our cafe, this is the number one symptom of Celiac Disease that is missed by GI docs and dermatologists.

Anyone familiar with celiac disease knows the typical symptoms: gas, bloating, fatigue, and various other signs of gastrointestinal distress. But what if your body materialized the illness in a completely unexpected way and to an area completely unrelated to the digestive tract?  About 20 to 25% of people with celiac disease don’t actually show any gastrointestinal upset in response to the gluten protein. Instead, they break out in an intensely itchy and painful rash-an affliction related to celiac disease and known as dermatitis herpetiformis.

Shortly after the birth of her son, Beth Triner noticed an irritating skin rash on her knees. For months, she brushed off the existence of the itchy, hive-like pustules as stemming from the stress of being a new parent. Eventually, Beth noticed that her rash came and went but always reappeared at some point, primarily on her knees and elbows. She figured it was connected to seasonal allergies and didn’t feel it necessary to seek out a physician.

Years later, however, after Beth returned from vacation in Cancun, Mexico, her skin rash spiraled out of control. After almost two decades of painful and itchy patches on her body, Beth and her doctors finally diagnosed her mystery outbreaks: dermatitis herpetiformis (DH), due to celiac disease.  DH is the outward and visible result of the body’s abnormal immunological reaction to gluten. The chronic itchy lesions are deposits in the skin which are the body’s response to IgA, the antibody used to fight the toxins in gluten. The only way to the fix the damage to the skin is to maintain a gluten-free diet. “It was so intensely itchy that I’d wake up scratching,” Triner explains. “In my case, the rash eventually moved from the knees and elbows to the buttocks. That was what bothered me the most. At one point, it hurt to sit.” 

Triner tried everything in her medicine cabinet, from hydrocortisone cream to Benadryl, yet nothing seemed to work on her skin eruptions, which doctors originally thought were caused by eczema or perhaps chigger bites.

“DH is hard to pinpoint because you want to scratch it so much, it often looks different when you finally get into the doctor’s office,” Triner notes. Unfortunately, general practitioners are less likely to be familiar with the nuisances of DH and its connection to celiac. Triner, like many, actually helped to diagnose herself by bringing in an article from the Journal of The American Dietetic Association that featured a picture of a DH rash, which looked extremely similar to her own.

Triner had always suffered from a mild case of IBS. She had never thought twice about her GI-symptoms until her DH diagnosis. “DH was my ‘aha!’ moment,” notes Triner, who immediately embraced a gluten-free diet after tests for DH came back positive, and later celiac tests came back positive.

According to Dr. Dan Leffler, a GI/celiac expert at Beth Israel Deaconess Medical Center in Boston, “DH is a specific manifestation of Celiac Disease.” Celiac and DH are both the result of the body’s reaction to the immunoglobulin A (IgA) antibody, which is produced in an abnormal immune response to the presence of gluten: in the celiac, the antibody transforms from a benign protein to a toxin. “Skin happens to have antibodies most closely related to those in the stomach,” Dr. Leffler explains, so while one celiac may show inflammation solely in the gut, another may produce inflammation in the form of a DH rash on the skin.

As is the case for celiacs who show symptoms in the gut, the only way to reduce and remove the damage done by IgA antibodies is a life-long gluten-free diet. Patients may seek immediate and temporary relief in Dapsone, but this antibacterial pharmaceutical medication can be harsh on the liver. Patients typically only stay on Dapsone for a period of about six months-generally the amount of time it takes IgA deposits to leave the skin.

Melinda Dennis, Nutrition Coordinator at the Celiac Center at Beth Israel Deaconess Medical Center, stresses the importance of nutritional therapy as “the only way to heal the lesions. Though going gluten-free can be overwhelming, getting rid of DH, which can cover large amounts of the body, even the scalp, is a big motivating factor.”

According to Dennis, the positive effects of going gluten-free are often seen in the GI system before the skin. “IgA in the skin takes longer to clear up, so it often takes a few months, though it depends on the individual, the severity of the rash, and the scars and scabs associated with scratching the lesions,” Dennis advises. It is important to note that excessive amounts of iodine, which can be found in seaweed, fish, and milk, can for some reason actually exacerbate the DH rash.

Unfortunately, data explaining why DH affects only 20-25% of celiacs is limited. There is not much information on or awareness of DH, and as a result, doctors are more likely to incorrectly diagnose the problem. “Dermatologists are slowly becoming more aware,” Dr. Leffler explains; “however, the problem starts at primary care. It’s difficult to add more problems, more things to diagnose, to [the burdens of these physicians].”

Patients are encouraged to take a pro-active approach and stand up for themselves, much as Beth Triner did in 2004. After an incorrectly performed biopsy by her physician, Triner was referred to a gastroenterologist and a dermatologist. “Go straight to the dermatologist to get the biopsy,” Triner recommends to anyone who thinks he or she may be struggling with DH-like symptoms. “For patients with typical symptoms but an unexplained negative blood test, it is still wise to do a biopsy.”

A proper biopsy is imperative to diagnose DH. Triner, whose physician performed an incorrect biopsy, thereby slowing her diagnosing and healing process, asserts doctors “should not try to diagnose a lesion [in isolation]. They must also do a biopsy of unaffected skin next to an IgA deposit and perform a very specific process called direct immunoflourescence.”

Dermatitis herpetiformis has proven to be another branch of celiac disease that desperately needs a campaign for awareness. To “g.i.” celiacs and non-celiacs alike, DH is a surprising discovery: the idea that the gut and skin can both be affected by gluten is astonishing. Unfortunately for general care physicians, DH is another affliction to add to the list of things needing quick and efficient diagnosis. As a result, patients need to be proactive with their health and spark the awareness. Know your health condition and improve your life! It may be as simple as a gluten-free diet.

For me, now; 4 weeks after my “glutening” on vacation, my mouth sores have just cleared up but I still have the DH rash all over my scalp, it hurts to wash and comb my hair and I also have the rash on my buttocks.  In the past it has taken 6 months or more for it to clear up. For more information, see our Resources Page on our website! (see Blog Post: “Maureen Gets Glutened on Vacation”)

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