The Autoimmune Connection: Celiac Disease and Dermatitis Herpetiformis

By Caroline Doernhoefer, Delight Editorial Assistant

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 for 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 immunofluorescence.”

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.

12 comments (Add your own)

1. Kate wrote:
This is the clearest explanation of the connection between Celiac and DH I've seen yet. I've self-diagnosed with DH and been on a gluten free diet for three months. My skin has significantly improved, but I've been wondering if having DH means I have Celiac. This pretty much answers my question! Thank you.

Wed, May 9, 2012 @ 2:02 PM

2. Zafer wrote:
Since my gluten-free reimgen began after diagnosis for intolerance ; I've sought nutritional direction and assistance with finding a new path for cooking. However, baking has never been high on my list of favorites, mostly because my own consumption of wheat flour-based desserts was never enjoyable and their creation just as unsatisfying. In this book, the ingredients, steps, methods and results are all TOP NOTCH. Great attention and just-enough explanation has helped me create very delectable cakes and pies that I would have never bothered attempting before. As with most recipe books, the paperback version is void of helpful photos. However, it has given my family and friends another glance into the challenges of eating gluten-free; it's great for sharing recipes with those who'd cook for those with intolerances/allergies.

Sun, September 9, 2012 @ 10:19 PM

3. Merry Davis wrote:
I was finally diagnosed with dh & celiac disease through a skin biopsy. I have had gastro problems since 2002 and I have been on a gluten free diet since 7/2011 and no real results yet. I am taking 50mg of dapsone daily & will have another colonoscopy tomorrow to see if there is something else going on. I am always looking for new articles about dh and gluten problems. Thank you for this article.

Thu, November 1, 2012 @ 1:11 PM

4. Susan wrote:
For some people this is a bit of a stretch. I am gluten free and after long enough it will work, but it is hard to not nip on the wrong foods now and then and it takes a long time for your insides to heal and get used to the right foods. Be patient.

For those so inclined, check "Essential Oils Desk Reference". I bought mine on Amazon. It is a huge and complete book. Usually you can find Young Essential Oils on Amazon too. Theives Oil will kill the bacteria you find in your gut that is associated with celiac. I have the lab work to prove it. You might try the Lavender on your skin. Dilute with Almond oil, maybe 50/50. It is gentle and will do no harm. Put on first under your lotion. It will not interfere with your scripts, but check with your Dr, according to your comfort level. Mine handed me the book reference and said to buy it. I am glad I did. I don't use it all the time, you will find favorites, but when things come it, it is nice to have gentle alternative to add to things. Sweet smelling is a bonus :)

Wed, December 19, 2012 @ 10:40 PM

5. Nils wrote:
And sea salt. After getting rid of sea salt and gluten am I now "normal".

Mon, April 29, 2013 @ 7:56 PM

6. Jan wrote:
I am so glad I found this writeup. I think I have harmed myself by not being 100% gluten free all the time. I'd say 98% of the time I am gluten free after being diagnosed with celiac 18 yrs ago. at that time, not a lot of info was available. Did not know I could get DH by not following 100% the gluten free diet. I thought, I don't have the diarrhea that I always got so I must be okay. I'm thinking that now I was so wrong and find myself in this itchy state. Can anyone tell me, my family (husband and 2 kids) do not have celiac. Can I still cook their regular foods for them or is this going to cause me MORE problems even if I don't digest it?
Scared of the DH possibility (doctoring now for a diagnosis of this 'breakout'). I am hoping it's cureable as long as I go 100% gluten free. Afraid of if I slip up. 8-(

Sat, May 4, 2013 @ 11:32 PM

7. Daneil Thom wrote:
My son was diagnosis with celiac decease 4weeks ago he is eaten gluten free foods since but he still has terrible pains in stomach everyday I have bought all new pots and pans cutlery and an careful as I hate to see my son in such pain he eats bacon every morning is this the cause off his pain, I have ask him to take proactive drinks once a day would this help pain please help

Thu, May 23, 2013 @ 7:48 AM

8. old dame reporter wrote:
I hear you about pain, and also the dermititis herpitiformis. I had pain for 50 years, now I feel 20 years younger. no extreme migraine or gut pain or skin probs. I cheated yesterday and woke up with itchy eyelids and itchy ears. won't cheat again. the bacon should be soothing. also lutein for eye health is from bacon. might take a while to get used to new program. could it be milk products. with every good wish to ya'll. glad I know how to cook and bake but in the second year of our GF program, I am back to the simple recipes.......
P.S. kids GF cookbook had super simple ice cream: 1 can coconut milk, 1 cup sugar, bring to boil, and freeze.
sending the best feel like we are all "related".

Sat, June 29, 2013 @ 5:10 PM

9. Skin rash all over in Ohio wrote:
I started getting itchy bumps on my legs last summer, went through wrong diagnosis like scabies. None of the treatments made a difference, none of the pictures of all listed skin problems matched until I searched celiac skin problems. Now I have the very itchy skin on my arms, torso and bottom. It starts out looking like a red bump and some areas like a rash all very itchy. I finally quit coffee and all gluten eating only fresh vegies and meats over the weekend and it seemed to start to go away. But back to work and eating at the salad bar my symptoms returned. It is so hard to figure out what to eat with the cross contamination issues. I am self diagnosed Celiac as this skin problem has had 4 doctors of which one a dermatologist could not give me a cure. I can say that even though I ate or drank something that caused my skin to get more itchy bumps, going gluten free my fatigue has faded and I feel better inside. I never had diarrhea or stomach pain, my bowel movements are skinny though and were dark until starting probiotics and gluten free they are now lite colored but still skinny. Is there any other men out there that has this condition? As my legs get the worst of it and my groin itches the worst.

Wed, March 5, 2014 @ 8:48 PM

10. Chris wrote:
For many years ive be going to doctor's and been treated with all imaginable creams and such. had mild ibs and chronic reflux. recently I went gluten free and was amazed the rash ive had for years is going by it self, no more ibs, no more reflux went from 40ml omaprazole to nothing in a few weeks. no point looking for a doctor to confirm by the time im done on the waiting list ill have no symptoms lol

Sat, October 11, 2014 @ 8:04 AM

11. Cheryl wrote:
Has anyone considered gluten in skin care products? Would this be contributing to the skin problems, even when a person is maintaining a gluten free diet?

Thu, March 5, 2015 @ 4:07 PM

12. Laurie Barrie wrote:
I was very fortunate to be accurately diagnosed at the age of two with DH due to gluten. That was fifty years ago! As I've gotten older I have dealt with intestinal issues when encountering gluten as well as DH. Accurate diagnosis by a dermatologist is key. Thank you for this article. Spreading the word about DH is vital.

Fri, March 6, 2015 @ 7:58 AM

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