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  • Jean Duane PhD

    Living with Dermatitis Herpetiformis

    Jean Duane PhD
    Reviewed and edited by a celiac disease expert.

      Journal of Gluten Sensitivity Summer 2014 Issue

    Image: CC--Practical Cures
    Caption: Image: CC--Practical Cures

    Celiac.com 09/13/2016 - Six times from 2003 – 2005, I had a mysterious full-bodied, itchy, blistery rash that landed me in the emergency room the first time, where seven doctors shook their heads. The ER physicians agreed that it was a "systemic chemical reaction" and tried to identify what I could have been exposed to. A dairy allergy was ruled out immediately since I have been completely dairy-free for twenty years. For the next three years, between hiding from the world for the ten days of intense itching and for the six weeks it took my skin to heal after an outbreak, I saw numerous dermatologists, internists, gastroenterologists, allergists and chiropractors. No one could figure out what was causing this miserable rash.

    I finally met the "best diagnostician" according to Denver's 5280 Magazine who told me he would figure out what was causing my plight, but that it wouldn't be fun. At that point, I was willing to take any test to identify what my enemy was. I endured ninety-eight needle sticks (who's counting?) eight skin biopsies, invasive scopes and tests for allergies, rheumatoid arthritis, diabetes, thyroid disease and a host of other procedures. The skin biopsies erroneously concluded that I had scabies. Scabies are biting mites that leave bumps on the skin. It couldn't have been mites, because my husband, who lives in the same environment, didn't have a bump on his body.

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    There was only one test that I did not pass – elevated levels of IgG antibodies in my blood. My doctor suggested that the rash could be correlated with gluten consumption and recommended that I try a gluten free diet. After being vigilant for several months, five out of seven long-term chronic complaints, including the rash, gradually went away.

    Here's my understanding of the DH lifecycle. An intestine that cannot break down the protein gluten leaks it out of the intestine and into the bloodstream. The blood sees this as a foreign protein and over-produces the immunoglobulin G to attack it. The antibodies build up, and purge out through the skin causing the rash. Completely avoiding gluten eliminates the antibody buildup, and the rash. One clue that might have streamlined my diagnosis is the knowledge that the DH rash is symmetrical. If it appears on one elbow, it will appear on the other, etc. In my case, it appeared on both sides of my entire body from the neck down.

    Please understand, I am not a doctor and the following is not to be considered medical advice. I am sharing this to pass along a few things I've learned from personal experience, research and lectures on the subject with the hope of helping others who suffer from a chronic, pervasive, itchy rash.

    Initial Testing
    Since I had the eight skin biopsies, I've learned that immunofluroescent biopsies should have been taken of the healthy skin near the rash rather than of the actual bumps. I was never given this test.

    After all those tests, the elevated IgG was the only indication that gluten is the culprit. I endured what was considered the "gold standard" for diagnosing celiac disease, the upper GI scoping, and my gastroenterologist did not find any damage. I have since learned that the upper GI scoping is no longer thought to be the "gold standard" diagnostic process by many celiac experts because it is too random. If the doctor doesn't biopsy the intestines in exactly the right place, you may be deemed to be celiac-free when you actually have considerable intestinal damage several inches away from the biopsy site. Furthermore, people with DH may or may not experience damage to their small intestine. A study done in 2010 found that 67 percent of the time people with DH only have elevated IgG-TGA levels (1).

    My doctor divulged that there simply are not yet 100 percent conclusive tests for celiac disease. He said that the best way to be sure of the diagnosis is to observe that the chronic symptoms disappear over time by vigilantly following a gluten free diet.

    Residual Rashes
    Residual rashes can reappear for up to five years even though the person is following a gluten free diet. The accumulated antibodies purge in a histamine response (the rash) periodically through the skin. Horrible as an outbreak is, the rash is actually how the body cleanses itself of the antibodies. The good news is, rashes diminish in time with strict adherence to a gluten free diet.

    Ongoing Testing
    I've learned that the best way to monitor the healing process is to have the IgG antibodies tested once a year until they are in the normal range. The number should decline each year, which implies compliance to the gluten free diet and that residual rashes will diminish. Mine took several years to finally reach the normal range. Having IgGs in the normal range does not mean that I can ever go back to eating gluten. DH is a life-long condition controlled by a gluten-free, and often, a dairy-free diet. Some studies talk about a spontaneous remission. This is very rare.

    Other Triggers
    People who have a propensity to develop rashes need to be aware of other triggers.

    1. Iodine triggers the rash in people with DH. Seaweed, shellfish, especially shrimp and lobster should be avoided. Sushi wrapped in Nori seaweed has caused me to have an outbreak before. Watch out for thyroid medicine and water filters because both can contain iodine.
    2. Sunburns can cause rashes. If your skin is sensitive enough to get a rash, chances are, sun will irritate it and could trigger an outbreak. Stay in the shade, wear translucent zinc oxide sunscreen and avoid too much exposure.
    3. An overgrowth of Candida (yeast) can cause an outbreak. Candida is naturally present in the body. To avert an overgrowth, eliminate simple sugars from the diet. According to a study done at Rice University, 70 percent of the population have an overgrowth of Candida somewhere in their body(2) due to over-exposure to antibiotics, steroids and hormones.
    4. Women who are "estrogen dominant" may not be producing progesterone. This can happen during perimenopause and in menopause. According to the book What Your Doctor May Not Tell You About Menopause by John R. Lee and Virginia Hawkins(3), estrogen dominance causes autoimmune and histamine reactions in some people. This could be the reason that women who have eaten gluten for years without symptoms are suddenly are plagued when they are in their 40's or 50's.
    5. Pharmaceuticals can trigger rashes in people with DH. If there is a choice of two drugs and one says a side effect may be a rash, and a similar drug doesn't, opt for the one that doesn't say "rash" for a side effect.
    6. Inadvertent gluten consumption can also cause the rash. Gluten is in nearly every processed food, and in many cosmetics and drugs. Some mushrooms are even grown on gluten! Transglutaminase enzymes are used to revive aging fish and meats – to extend their shelf life and to make them look appetizing. Grocers do not have to declare that they add these enzymes because they are naturally occurring in the human body. Dr. Peter Green mentioned at a Gluten Intolerance Group conference that people with celiac disease develop antibodies to tissue transglutaminase, and that the addition of those enzymes may be causing people who are already sensitive to get sicker. The point is that even foods that are supposedly gluten free can contain small amounts of it. To be safe, test products with ELISA test strips. ELISA test strips are available at http://www.elisa-tek.com/ez-gluten/. Since these strips are so expensive, this is also a website for everyone who uses them to post their results. I have learned a lot by reading this forum.

    Day-to-Day Life
    The longer I have been gluten free, the less tolerant my body has become. I've heard this anecdotally from others following the gluten-free diet. My DH is so severe, I react to even the most minor infractions. It makes eating out very difficult because cross-contamination is common and waiters are not always aware. I have a little test for waiters to decide whether to trust them to bring me a ‘safe' meal. I order a club soda with lemon before I order food. If the soda comes with lime, I know this waiter is not listening, and will be more likely to bring me something that could contain gluten. In restaurants that flunk my club soda test, I play it safe and order salad, a fruit plate or steamed vegetables.

    I've been to restaurants that tout a gluten free menu, only to be presented with a laminated disclaimer saying they are not liable for cross-contamination or inadvertent gluten after I order. How can anyone enjoy a meal with that kind of disclaimer? Not to mention the disruption of the conversation with your meal-mate when presented with a disclaimer card. It can be a little embarrassing!

    The most frustrating aspect of living with this is when accidental infractions occur. In November 2011, I wasn't feeling very well, so I took an aspirin and went to bed. Ten days later, the rash started appearing. It was a very bad rash, and I had to wear gloves to cover my hands that had doubled in size. I could not figure out what I had consumed that had gluten in it. My home is gluten free! I thought perhaps a product that I habitually used changed ingredients, so I read all the ingredients of everything in my house. Using the ELISA test strips, I tested 44 different products – foods, pharmaceuticals, over-the-counter drugs, cosmetics – everything that came in contact with my skin, or that I ate. Nothing I tested contained gluten. Then I remembered taking the aspirin. I tested it, and it contained gluten! I read the ingredients, the label said "Inactive ingredient: starch." It did not say what kind of starch. This happens in binders in pharmaceuticals too. The ingredients of pharmaceuticals will say "starch #3," and further investigation reveals this can alternate between wheat, tapioca, corn or potato. This means every time a prescription is refilled, it must be tested to be sure that particular batch wasn't made with wheat starch.

    I was in a car wreck and had to be taken to the emergency room. My sternum was broken, and I needed pain medication. The nurse offered me a pill and I asked if they would please make sure that it was gluten free. The nurse said, "pharmaceuticals are gluten free." (I've had pharmacists tell me this too – but as mentioned above, it is not true!) I said, "The reaction I get from consuming gluten is worse than the pain of this broken bone. Would you mind checking?" The nurse came back 30 minutes later and told me the pill did, indeed contain gluten. I went home in the middle of the night without any pain medication. I found a website the next morning that lists all gluten free pharmaceuticals, and asked my doctor to call in the specific brand of pain medication. The website is http://www.glutenfreedrugs.com. I have learned to keep a bottle on hand at home, and when I travel in case something like that ever happens again.

    I really wanted to eat the gluten free oats, so in 2009, I decided to go completely grain free for three months to cleanse myself for the "oat challenge." Then I made some oatmeal cookies with the gluten free oats. I took one bite, and waited ten days. Sure enough, the rash appeared on my legs. Through this experiment, I learned that I am not tolerant of even some "gluten free" foods.

    Through my studies of alternative diets and trying to discover the optimal way to eat to improve health, I have learned that a diet centered on eating vegetables, fruits, beans and some nuts and seeds improve the autoimmune system. Once the immune system is restored, (after strict adherence for several years), I've been told that it may be possible to undergo gluten desensitization under doctor's supervision. Locating a credible doctor to do this may be tricky, and deliberately exposing myself to gluten would take a lot of courage. However, I am considering this down the road with the hope that if I am inadvertently exposed to tiny amounts of gluten, I won't suffer through another rash.

    Since my reaction is so severe, I asked my doctor to write an undated letter on his letterhead "To Whom It May Concern" that states my reaction to gluten. I take this with me whenever I travel, just in case I was ever hospitalized, I could show the staff a letter from a bona fide medical doctor stating the severity of my situation. Without a letter, I am not sure if anyone would adhere to the strict gluten free guidelines I need to follow.

    Rash Remedies
    In those dismal three years before I was diagnosed, I was given mega doses of steroids, antibiotics, antihistamines, countless prescription creams, gels, histamine blocks, anti-viral drugs, anti-fungals and offered Dapsone. Since it took years to diagnose, well-meaning doctors offered a smattering of drugs to see what might work.

    Most of the drugs listed above were not the right medicine for DH. Steroids proved ineffective. Antivirals and antifungals did not work either. Dapsone is commonly given to people with DH who are not able to adhere to a gluten free diet. It is a strong drug originally given to lepers and has severe side effects. I'd rather live the gluten free lifestyle than take Dapsone.

    Once diagnosed, the two drugs that worked for me to ease symptoms for outbreaks were Zantac and liquid Hydroxizine. I am told that Zantac is a histamine block. It helped to reduce the number of itching days from ten to eight. I was also told to take it as precaution, if I felt I had inadvertently eaten gluten to thwart off an outbreak. I took the liquid hydroxizine around 4:00 o'clock in the afternoon when the histamines are highest, to ease the itching through the night. An un-exotic over-the-counter remedy that works is the clear calamine lotion from Walgreen's. There were days that I dreamed of taking a bath in that wonderful stuff!

    Another remedy recommended by a DH friend is a product made by Bayer called Domeboro Astringent Solution. It is a powder that is mixed with water and applied with a cloth to the affected area. It is said to give relief from the itching for several hours.

    Fluocinonide gel .05 percent is another remedy I have heard helps with the extreme itching. Fortunately, I have not had an outbreak since I learned about this remedy.

    Ever Onward
    Though my doctor recommended the gluten free diet, he didn't tell me how to do it, and I found there was a lot to learn! Luckily, during that time in the midst of outbreaks, I was attending cooking school. The school was not gluten free, but I took all of the methods and lessons home and converted everything I learned to be allergy free. The diagnosis and certification from the school launched me on an epicurean adventure and changed the course of my life. I started the Alternative Cook to help others who want to eat safe, delicious foods.

    If you are suffering with an incredibly itchy, pervasive rash, or know someone who is, consider that gluten could be the offender. Celiac disease is much more prevalent in this country than once thought. If you need moral support with DH, I'd love to hear from you.


    1. Dahlbom, Ingrid, Korponay-Szabo, Ilma R, Kovacs, Judit B, Szalai, Zsuzsana, Maki, Markku, Hansson, Tony. "Prediction of Clinical and Mucosal Severity of Coeliac Disease and Dermatitis Herpetiformus by Quantification of IgA/IgG Serum Antibodies to Tissue Transglutaminase." Journal of Pediatric Gastroenterology and Nutrition. Vol. 50(2), February 2010, P 140-146.
    2. "Biologists ID Defense Mechanism of Leading Fungal Pathogen. Psych Central. June 25, 2004. http://psychcentral.com/news/archives/2004-06/ru-bid062504.html.
    3. Lee, John R., Hawkins, Virginia. What Your Doctor May Not Tell You About Menopause. Mass Market Paperback. September, 2004.

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    Recommended Comments

    Well written article with lots of useful information. I have had celiac disease for 12 years and suffered the steep learning curve of the gluten free diet when a great deal less was published and known about it. In fact many of the things I initially learned have now been proven incorrect. in fact when I was first diagnosed I was sent to a nutritionist, in the two weeks it took to get an appointment I had learned a little bit from the internet but it was far more than the little the nutritionist had learned in her schooling. She apologized and admitted that my appointment was a big waist of time, that she didn't have anything to teach me or that would help me any further and sent me on my way without charging me for her time. All that to say that thankfully I have not suffered the slings and arrows that those with DH have in battling rashes, my heart goes out to all that do. In reading your article I have learned a great deal about what it is like to for someone with DH to deal with on a daily basis and I have even learned some new information about my own disease. THANK YOU VERY MUCH!!! For writing an article that did not waist my time in reading it and for providing useful information for users of this site to put into practice.

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    This really is an excellent article and contains lots of info that I have found to be true. In my case I have only had one outbreak of DH and that was one too many! I found that the intense itching was reduced by vinegar, (wine not malt vinegar), I would dab it on with cottonwool repeatedly and though there was a stinging sensation it greatly reduced the itching, creams prescribed by my doctor were somewhat useful but not as good. Also soothing was aloe vera gel as this also has a cooling effect.

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    Guest Jacqueline Cahelo


    Very good article although my experiences are a little different. I discovered I had celiac disease (and DH) when I broke out in a rash that I went to my primary care physician for. I had a history of IBS and thought it was just acting up and causing my stomach issues. He immediately had me tested for celiac with a blood test (later confirmed w/an endoscopy). A friend suggested I detox-- and I got a detox tea from the local Earth Fare. Big mistake- I broke out everywhere practically

    and was an itching blistered mess (head and eyes as well- both sides just like the article). The calamine lotion did not help me- but aloe gel did.. I have kept it under control with a gluten-free diet ever since. I am on 2 thyroid meds and they do not affect my DH. Anyway my "early warning system" if I have accidentally ingest gluten is within 1/2 to 1 hour I start itching. I grab the Zantac and an antihistamine like Allegra, or Zyrtec and it calms it down until I get the gluten out of my system (the stomach affects usually take 12 hours to appear) If I don't get the Zantac and antihistamine within the first hour, then the bumps appear. Other than that I have a much easier time than in the article.

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    I have had DH for about 5 years and I broke out like crazy the first time. I went to my dermatologist and he put me on dapsone, and I have not had but one small breakout in five years. I have had no side effects except it did make me a little anemic according to one of my blood test, that I only have to Take every six months now. If anyone has any additional information or severe side effects from dapsone please let me know. I can basically eat anything I want as long as I am on dapsone. I still try to eat mostly gluten free except I do cheat every once in a while. This was a fantastic article and I do appreciate the advice.

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    Great article and lots of familiar experiences with the rash & itch. It´s terrible. I was diagnosed two years ago (Sep 2014) subsequent to having a surgery. My theory is that before surgery the hospitals follow a protocol of heavy doses of antibiotics to fight off the potential infection during and after surgery. The consequence is that the antibiotic kills off all the bugs - good and bad - leaving you susceptible to conditions like dermatitis herpetiformis. I have been treating the last 9 months at Mayo in Rochester, where I have gone through the Dapsone, creams, etc - all while being totally gluten free. I still have outbreaks of the miserable blisters & itching almost every day, even being on the restricted diet and taking the Dapsone. It has the doctors puzzled. Just this week we decided to drop the Dapsone, since it doesn´t seem to be doing anything - and it does have some very undesireable side-effects. I too have undergone the upper scope, without finding any conclusive damage to my small intestine. Just recently the blisters seem more like water blisters, but with the very painful consequence if scratched. I had heard about a natural medicine doctor that addressed these autoimmune problems a bit differently, but we don´t live close enough to treat with her. If anyone has a lead on such a healthcare provider, I would sure be interested. Again, thanks for your article.

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    I really enjoyed your article and all the information provided.After a couple of years of a rash that  continued to spread, was finally diagnosed with DH. I have been gluten free since May 2017 but continue to have the rash and the itching is unbelievable.  I do take dapsone although I am not sure it helps that much.  My doctor tried a larger dose but I became extremely anemic.. The rash does seem to be less over time but I still have it on both legs, both arms.  As long as it continues to itch I am afraid it will never go away.  And as you know, it is not an itch that can be ignored. I am going to try your suggestion of zantac and liquid hydroxyzine. I will also try to continue to research this as much as i can because I would really like to find a way to get rid of the not only the rash but the itching. Thanks for listening.

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    This is a great article, with wonderful contributions following!  I was diagnosed with DH about 10 years ago, after having four insanely itchy, somewhat blistered rashes, each about 8-10 years apart, that got worse with each outbreak. The rashes are always symmetrical, cover my entire body and are so horribly itchy that I'm awake most of the night, scratching. The last time I broke out, I traced it back to something processed on equipment shared with wheat. I really wonder if that would have done the trick if it hadn't been Christmas Eve, and I wasn't eating unhealthy or drinking alcohol (I wonder if leaky gut perpetuates this for me sometimes). I have had some cross contamination (I think) in the past, but didn't break out, so I'm baffled. For me, the rashes last for months, and cover my entire body. Pure misery.

    Bonnie, I'm not sure if this will help you (or anyone else), but what has been my go - to is Doxepin. It is actually an antidepressant, but it is prescribed off label for rashes (a much smaller dosage than what is therapeutic for depression) and it gets it under control quickly, and I can gradually taper off. I take it with me when I travel, in case of an outbreak. 

    Good luck!

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    Thank you, Jean!  Really enjoyed the article and learned a few new things.  My doctor is unaware of some of the things I've been reading about (iodine, vitamin deficiencies) and since I'm newly diagnosed (approx. 2 mos.) I'm still winnowing fact from fiction.  

    I was very lucky it sounds, to have been diagnosed with a bad biopsy where they took a blister, and through bloodwork.  I started with a rash on one elbow that I thought was poison ivy, but it didn't behave as poison ivy rashes should.  Then it appeared on the other elbow.  Then the knees.   I researched rashes and there are amazingly few with blisters that have clear fluid; add in the symmetry I first experienced and the locations and I went to have my doctor check for possibilities including DH.  Luckily, the dermatologist they sent me to had some experience with it.  I have not had to take Dapsone and I'm doing my best going gluten-free, but that really is it's own challenge.

    I am definitely looking for … advice?  support?  good factual knowledge?  My husband and I would like to vacation a bit.  How the heck do I do that?  I'm assuming there's no 'touch' sensitivity since this is Celiac - am I wrong?  I have had some asymmetrical rashes which from my reading sounds fairly normal.  I think.  I've been extremely lucky again with rashes that are not as virulent as others have described - itching is not as incredible, as painful thank heavens.  Not out of the ordinary?  What do I need to be aware of medically?  Watch  for in the way of 'complications' from my DH?  What other health issues may arise?  

    I certainly don't expect you to answer all this - just venting a bit about how overwhelming it all is.  I know it will just take time and there will be mistakes, but it really is a whole new world and it's nerve wracking.  This site and all the affected people have really helped me feel less alone and bewildered.  Articles like this are terrific and I'm very grateful to you - thank you!

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  • About Me

    Dr. Jean Duane is a social scientist currently focused on researching the social aspects of food/gluten sensitivities and celiac disease. Her company, Alternative Cook, LLC produces instructional DVDs (Chocolate, Mexican, Italian and Kids' Meals), video streams (alternativecook.comBake Deliciously! Gluten and Dairy Free Cookbook and The Complete Idiot's Guide to Gluten Free Cooking Cookbook. She shows how to cook without gluten, dairy and other food-allergens. Prior to becoming a social scientist, Dr. Duane produced several spots for Comcast's Video on Demand, made television appearances on PBS and was a featured speaker at two International Association for Culinary Professionals' Conferences and at the Gluten Intolerance Group of North America's International Conference. She developed recipes for Betty Crocker Gluten Free Cooking Cookbook, for Beautiful Sweets bakery and was featured in Better Homes and Gardens special Christmas Cookies. Dr. Jean Duane is a certified chef, has an MBA, and a PhD. A researcher, cooking instructor, speaker, and magazine writer, she won Kiplinger's "Dream in You" contest in 2006.

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