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Dermatitis Herpetiformis: Diagnosing and Treating the "Gluten Rash"

Celiac.com 04/25/2012 - In my experience growing up with undiagnosed celiac disease, I had to deal with several symptoms that my doctors had no answers for. One of the most frustrating of these was my skin troubles—dermatitis herpetiformis. After my experiences with misdiagnoses, and finally more recently, learning how to effectively get rid of dermatitis herpetiformis, I encourage parents to be particularly watchful for signs of dermatitis herpetiformis in their children, and I have some useful advice for those—children and adults—who have already been diagnosed with this annoying and sometimes quite troublesome rash. Since dermatitis herpetiformis occurs in 15 to 20% of celiacs, it’s worth any celiac’s time to learn more about this condition.

Photo: CC - AnosmiaBy definition, dermatitis herpetiformis is a blistering and extremely itchy skin rash. It’s usually symmetrical in shape and is most commonly located on the elbows, knees, buttocks, and upper back. It’s common for people with dermatitis herpetiformis to have rashes appear in the same spot, and they can either be consistent or come and go. People can experience the rash on other parts of the body, and severity of symptoms can vary. Dermatitis herpetiformis is sometimes called the “gluten rash” or “celiac disease rash” because it occurs in people with a gluten intolerance or celiac disease. It is commonly misdiagnosed as eczema.

Gluten is a protein found in wheat, barley, and rye. In people who have celiac disease, gluten causes an autoimmune response which results in the immune system attacking the lining of the small intestine—specifically the villi, the absorptive hair-like structures of the lining. With dermatitis herpetiformis, outbreaks are also triggered by gluten.

Interestingly, unlike celiac disease which appears more in women than men, dermatitis herpetiformis is more commonly found in men by a ratio of about two-to-one. It is rarely seen in children under ten and first appears in the teenage years or even in one’s twenties or thirties. It may come and go, even if you’re eating a gluten-containing diet.

Diagnosis is done with a skin biopsy. In most cases, a dermatitis herpetiformis diagnosis means celiac disease as well, even if you’re not obviously suffering from the characteristic intestinal symptoms of this disease. No matter what, the treatment is the same: a strict gluten-free diet.

Dermatitis herpetiformis rashes are treated in two main ways--the gluten-free diet, of course, and antibiotics such as dapsone or sulfapyridine for those who aren’t able to tolerate dapsone. A truly gluten-free diet can eliminate dermatitis herpetiformis, but in my experience and according to the National Institutes of Health, a dermatitis herpetiformis rash responds dramatically to dapsone, within 48 to 72 hours. To treat the underlying cause of dermatitis herpetiformis, which is celiac disease, a strict gluten-free diet must be followed, but according to the National Institutes of Health, “Even with a gluten-free diet, dapsone or sulfapyridine therapy may need to be continued for 1–2 years to prevent further dermatitis herpetiformis outbreaks.”

As a celiac with dermatitis herpetiformis, completely eliminating gluten from my diet has been the only lasting solution for dermatitis herpetiformis, but unfortunately I can accidentally ingest gluten from time to time, especially when I travel. In my most recent outbreak, I decided to get a prescription for dapsone. Although dapsone is a very strong drug with side effects and should be used sparingly, I was in need of something fast-acting. I followed the instructions exactly, and not only did it relieve the pain but within three days, I could see a remarkable change in the appearance of the dermatitis herpetiformis. After reexperiencing the painful and frustrating symptoms of dermatitis herpetiformis and the relief that came with proper treatment, I knew I had to address this topic to help others. I encourage everyone to get the word out about dermatitis herpetiformis so more and more people dealing with this misdiagnosed condition can get help just as I did.

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31 Responses:

 
beverly lees
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said this on
30 Apr 2012 10:57:40 AM PST
I too have a big rash on my leg and have tried everything under the sun to get rid of it, even bleach. My doctor said it was only a skin rash but whenever it comes it itches so bad when I have jeans on because my legs get hot and there it goes--I'm scratching again.

 
san
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said this on
29 Dec 2015 9:25:32 AM PST
Someone said to stop eating sheep/lamb. I no longer have that crawling feeling and no sting like an invisible bug has bitten. What do you think?

 
Barb
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said this on
30 Apr 2012 11:10:40 AM PST
I have used Dapsone Cream with great success rather than taking oral Dapsone. Really worth the time to have the cream made up at a special pharmacy.

 
hans
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said this on
02 May 2012 6:20:33 AM PST
Can you tell me what kind of dapsone cream that you used and what's the difference between the oral and the topical cream? I am afraid of its side effects since I've been taking lots of different drugs caused of misdiagnosed in the past one year. Thanks.

 
Naomi
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said this on
15 Apr 2015 7:30:49 PM PST
I had a terrible reaction to oral Dapsone. Did you? Is that why you took topical dapsone? 4 Months gluten-free and I am still suffering terribly from DH.

 
Pamela
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said this on
30 Apr 2012 11:53:55 AM PST
I was misdiagnosed for 41 years and work in the healthcare field, my dermatologist had no idea what my rash was, had she known I would have been diagnosed 20 years sooner, I printed out material on Dematitis Herpetiformis from the internet and send it to her.

 
Hilary Adams
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said this on
01 May 2012 3:19:47 AM PST
I basically diagnosed myself with DH and found dapsone. I use it sparely and only with an outbreak. My information 10 years ago was that you can stop the itching and burning quickly and it works! If you are itching and can't stand it (no kidding!) one dose (I use 50 mg) will stop the itching within 30 minutes. I can usually get away with just one dose unless the outbreak is severe or the hidden gluten a large amount. Thanks for bringing it up!

 
oscar
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said this on
20 Jul 2012 5:52:50 PM PST
Check for scabies. I had something similar and waited a month before the second doctor I saw said it could be scabies. They gave me a cream prescription and now I am getting way better.

 
Kathryn
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said this on
31 Jul 2013 7:01:16 AM PST
Trust me, it's not scabies. If you have DH, you know it's different from anything else.

 
Joe Eustis
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said this on
30 Jul 2012 10:16:33 AM PST
My dermatitis herpetiformis manifestation began at age 64 and it took my dermatologist one year to finally diagnose it. Dapsone initially did the job, but it is very dangerous as it causes anemia by destroying your red blood cells. After about 6 months on Dapsone (and recovering from prostate cancer surgery), the Dapsone lost its effectiveness. One year after the dermatitis herpetiformis diagnosis, I was diagnosed with celiac disease and began the gluten-free diet. The rash continued to flare up and really got worse when I began taking Synthroid for low thyroid. I suspected the iodine was aggravating the dermatitis herpetiformis. A desperation visit to renowned dermatologist, Dr. John Zone (Salt Lake City), confirmed that a small percent of us dermatitis herpetiformis folks are also sensitive to iodine and must reduce iodine intake for a while. After about 2 years on the gluten-free diet and watching my iodine intake, I am doing much better. This information has helped another iodine sensitive dermatitis herpetiformis member of our local New Orleans CSA chapter.

 
Jaynie
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said this on
13 Sep 2012 3:05:36 PM PST
Thank you. This the information I was looking for. Do you still take Synthroid or another brand?

 
PLJ
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said this on
11 Sep 2013 9:53:45 AM PST
Hi, thanks so much for posting this! I have celiac disease and a rash that looks like DH on my elbows but my doctor took a biopsy and says it's not DH it's "urticaria". I'm confused because, from what I understand urticaria simply means "hives" yet the symptoms I'm experiencing in relation to my "hives" are that of DH, so I wonder if this is a misdiagnosis... were your hives at first misdiagnosed? Thanks!

 
Magda
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said this on
20 Sep 2013 8:31:16 PM PST
Hi, I just found I have DH 3 days ago, I've been having skin problems for almost year and a half. My first dermatologist told me it was ring worm, second one that it was impetigo. Third dermatologist took a couple of skin samples and the biopsy shown it was DH. I have some GI problems and I'm going on gluten free diet, but I've been reading a lot about cross reactive foods to gluten and it worries me a bit. Do you find this food harmful or do you just skip wheat, rye and barley?

 
Jen
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said this on
16 Dec 2014 6:38:54 PM PST
You have to avoid all of them and anything that may be made with them. Even a small amount causes a reaction in me. It is the only way I know I was glutened, since I do not have GI issues with my celiac.

 
s.middleton

said this on
03 Oct 2013 1:03:49 PM PST
My daughter who is 4 years old was recently diagnosed with DH. She had caught chicken pox and after 2 weeks of having it we took her to the doctors only to be told that it was normal to last this long. After 6 weeks we returned to the doctors who told us it was bites. 4 weeks later we returned yet again and this time admitted to hospital. The doctor tested her for chicken pox, which was positive, but also tested her for DH, even though the dermatologist said it was highly unlikely. Well it came back positive. After looking on the internet of pictures of the rash I believe my daughter had it when she was just 7 months old and was misdiagnosed. I am left feeling let down and guilty that I have let my daughter down. She is due to have an endoscopy next week to confirm celiac.

 
Jan

said this on
10 Nov 2013 9:42:52 PM PST
I have had a rash on my shoulder, neck, and shin area for a year! My doc said it was dermatitis-- My dermo asked me if I was dying my hair. Both prescribed cortisone lotion and suggested a cortisone shot. The PA put gloves on; the doc did not. When I went to Ireland for three weeks the rash disappeared which further suggests American wheat is bad news. When I got back the rash reappeared within a week: burning, itching. I am on my 4th doc and she continued the cortisone lotion and wants me to go back to my dermo to have a culture/biopsy. The bumps/welts look just like the pics for DH. Finally, I may have it figured out. I have suspected gluten sensitivity due to headaches etc. but did not know it could cause DH.

 
Marlene
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said this on
07 Feb 2014 2:06:53 PM PST
Very good information. Thanks very much.

 
Rachel
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said this on
10 Mar 2014 10:10:20 PM PST
People, please inform and advocate for yourselves and loved ones. There are too many doctors who are completely uninformed and non-experienced with DH. I have been suffering from dermatitis herpetiformis/DH since the start of fall 2013 and have seen a total of 4 doctors all of whom seemed to have no experience or knowledge of what I was experiencing and all wanted to treat the symptoms with cream rather than confirm the cause.
Even when I told each of them I went gluten free for 2 whole months and the DH went away, even when I showed them pictures of the rashes' progression starting/prior to scratching, full blown after scratching and as it was in retreat, they all gave conflicting explanations such as dermatitis, eczema, and "allergy." I knew much more than all of them COMBINED but since they hold the degrees and the prescription pads, they stuck to their lack of DH and kept the Dapsone to themselves despite my suffering and refused even a 2 or 3 day course for diagnosis like some doctors that I keep hearing about apparently do. WHY oh WHY could I not have found one of those doctors????
After much investigating on my own, I am going to be seeing an allergist and internist who I have confirmed upfront has treated people with dermatitis herpetiformis/DH. You might have to fight like heck and call dozens or hundreds of places but at least you will not waste your time and money with doctors who are wrong and refuse to admit it all the while lengthening your suffering.

 
Melissa
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said this on
26 Apr 2014 2:26:23 PM PST
I have been suffering with severe itching for months! I saw a dermatologist and she said it was eczema. She gave me a cream which I put on my elbows and side of my butt and it seemed to help. Days later I started getting burning/itching and bumps on my neck, shoulders, low back, middle back and around to chest. They are small bumps and I do not see any blistering but they do turn to scabs after itching them. They don't itch 24/7 and seem to be worse toward evening. Does this sound like DH? They itching is severe when they do itch. I just saw my primary Dr. and she wants me to see a different Dermatologist. I am hoping this is not DH. Any input?

 
christeena
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said this on
05 May 2014 6:35:38 AM PST
Besides the side effects of the dapsone my problem is oral medications in general. After a long discussion with the pharmacist my suspicions were confirmed, pharmaceutical companies roll tablets in modified food starches and flour to keep them from sticking together. I am extremely allergic to gluten and cannot risk oral medications so maybe the cream would be an option. I would welcome some relief from the blisters when I get that accidental gluten poisoning.

 
Carol

said this on
14 Jul 2014 8:53:56 AM PST
Try the Vaseline Intensive Rescue cream, together with a strictly gluten free diet when you have a flare up. All the other creams for itchy skin have oats in them...which are not gluten free. With this rash, the surface of the skin is often broken and the oats make it worse. Use only hypoallergenic soap without oats or oatmeal (Dove works great), as the skin dries out, making the itching worse.

Good Luck!

 
Liz
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said this on
14 Aug 2014 9:23:31 AM PST
I've been struggling with a rash for about 15 years. Saw several dermatologists and docs and was told it was an allergic reaction, shingles etc. Two years plus ago my oldest daughter was diagnosed with celiac. Trying to educate myself I finally found the answer to my rash!! During that time it would come and go to varying degrees. So, GF I went. Then after a couple of month I had some gluten and then some more only to find myself covered in the rash from head to toe!! Burning and itching to the highest degree!!! I couldn't sleep, still can't. I went GF once again and have followed it with the occasional glutening. Then I begin all over...I'm so tired. I'm 61 and now diagnosed with diabetes type 1 and Hypothyroidism. Started meds a month ago for both and 3 weeks in I began to break out like crazy!! So, figuring it was the diabetes meds I stopped taking them. The inflammation has subsided some, waiting on my dr to call. Now I'm wondering if it could be the iodine in my Synthroid! I've heard that Dapsone works well and I'm willing to try it, but first I need to be officially diagnosed with has come back negative since I was GF for 6 months waiting for the appointment!

 
Lisa
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said this on
21 Nov 2014 11:56:31 AM PST
FYI...Snythroid has Gluten in it! I have had this rash since August. This is the first information that I have read that makes sense. No doctor has had any answers for me. I have been gluten free for the last 2 years but I must be getting glutened somewhere. I also have corn, egg and most GF grain allergies. I also believe stress activates it.

 
Annalisa
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said this on
24 Aug 2014 1:40:35 PM PST
I have had celiac and DH for 15 years...misdiagnosed for 10 of those years. I have been strictly gluten free for the last 5 years however earlier this year my DH came back, with a vengeance. I went to many doctors and nobody can tell me why this has come back. My best guess is stress at work which was pretty hectic for me at the beginning of the year.

I found Dr Terry Wahl's on TedTalk (Minding Your Mitochondria) and she gave an excellent presentation on how she has effectively healed herself as she as MS. The idea that what we are eating can hurt and heal us intrigued me. I read her book which discusses a diet specifically for autoimmune diseases (celiac is autoimmune). I began her diet and also dove into hours and hours of research. I found another Dr with autoimmune issues and she wrote an excellent book called the Paleo Approach.

After the last 8 months of DH on a gluten free diet... I changed to the "autoimmune protocol". AIP is meant to be an elimination diet that removes most allergens from our diet. once you heal you add one item in at a time and check for reactions. Ultimately you end up on a modified paleo lifestyle... Which has been amazing for me!! I sleep so much better, have tons of energy, my sporadic tummy issues are gone and most importantly my DH is completely gone. No drugs, just the right foods. Dapsone is dangerous as is destroys your healthy guy bacteria...which our damaged immune system desperately needs.

If you have one autoimmune disease...you are susceptible to any other autoimmune disease (diabetes, multiple sclerosis, lupus etc)

 
Colleen
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said this on
20 Mar 2015 8:21:06 PM PST
I'm with you Liz. I am in despair myself. I have had it for 2 years. Completely undiagnosed. I went to 5 dermatologists, most of which insulted me. I have been called crazy with no self control. Everything, been told eczema, folliculitis, etc....I finally found someone who knew what it was but was not under my insurance and he got all "ethical" whatever THAT is and said he couldn't test me. So back to insulting dumb guy I was forced to go. I gave up. I tried again. He wouldn't test me correctly, he didn't know how. I was in despair. I had stayed on gluten for THEM the ones who dare not help me. I finally went GF 2 months ago after back and forthing all of last year...emotional and painful roller coaster. I am STILL blistering in my scalp really bad and my back...I have a constant oooze on my skin...I know when they are forming...I know where they'll be....but I don't know what I am doing wrong. Things have gluten that even say they are GF I guess. I can't sleep because I can't lie on either side of my head OR my back...I close my eyes for 3 hours every night in a crossed legged position sitting up...I don't hardly eat anymore because I can't take the blisters. I really feel , this is it, there is no help for me. Do i quit my job? what do i do. i cant go out in public anymore. I cant wear clothes. I cant get medicine. I cant do anything. They don't care. I am destroying my liver with Benadryl, Motrin and Excedrin and anything I can get..

I get ya liz.

 
Lydia976
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said this on
30 Aug 2015 10:11:55 AM PST
Liz, you have to stop taking NSAIDs! They can exacerbate your symptoms, if not bring on gluten related neuropathy altogether. Try circuit extract capsules as a substitute.

 
liz
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said this on
23 May 2015 8:44:20 PM PST
Definitely good to read info from other sufferers. It's a little known or spoken about condition but has huge consequences on quality of life.

 
Jennifer M.
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said this on
14 Jul 2015 11:21:01 PM PST
I'm a female diagnosed at age 44. I suffered for more than 40 years. My earliest memory is scratching the rash in the back of my neck. I remember as a child scratching the back of my legs behind my knees. As a teen, the posterior neck and above the hairline was terrible. The sores from scratching were weeping and I lost some hair. I got itching bumps on my knees and elbows too. All my childhood memories involve itching! My daughter's rash came when she was four. I thought it was chicken pox. The Dr said it was a staff infection. Later the Dr said eczema. After months of research, I asked the Dr to do a Celiac panel. It was positive. My son also tested positive but he does not have DH. Curious thing, she also used to complain of leg cramps as I did as a child. Not sure if that is related to DH though. The article said DH is rare in females and children but, not rare enough for my family. We have been 2 years GF and my daughter has no more skin problems. I forgot I had arthritis and peripheral neuropathy as I am so much better(cured?) I do have some trace itch and the skin on the back of my neck will never be the same after 40 years of inflammation and scratching.

 
Eloisa
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said this on
29 May 2016 7:41:03 AM PST
Awesome article.

 
Jen
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said this on
26 Jun 2016 1:44:47 PM PST
Do you have to eat gluten to have a skin biopsy? I get the rash from time to time. I've been gluten free for several years. I have just had genetic testing and I have several genes linking to celiac and this. I don't really want to eat gluten just to confirm.

 
Sheila
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said this on
05 Nov 2016 1:30:46 AM PST
Hello Everyone. Reading all your stories gives me hope to try all that is possible. I have read stories way up to 2013 and I hope all of you have been feeling better. rnrnIt is frustrating that doctors made a wrong diagnosis on us. Others suffered for as long as 20 years or more and still not being able to heal.rn rnI haven't been confirmed with DH or celiac but like all of you from reading and investigating on my own gave me somewhat of a confirmation of what this super itchy rashes that started on my finger is now all over my body. I will visit my doctor soon.rnrnI have been going to Internal doctor due gastro problem that started I believe last year and was given different medicines. This May I was having stomach aches and was told it that too much unreleased gas (due to pork and beef diet). That's when I noticed a blister type rashes on my fingers that come and go - red, burning pain, itchy. It spread on my elbows on Aug. I was given ointment that helped a lot. But I had it again. This time on my lower back, buttocks, side of my legs, knees, shoulders, neck, nape. I went to 2nd doctor and told me stop using the meds and gave me another one. It helped and another one breaks out again, I had the KOH test that scrapes the skin and tested for fungus and came out negative. She just told me you're clean and its drying and you will be fine soon. I AM NOT FINE up to this writing. The rashes spread over my legs front and back, its all around my arms, armpit and shoulder blades. I've been using now only the virgin coconut oil as moisturizer. But I can't use it in the office, too embarrass because I will smell like a big dessert or rice cake. I suspected that this is DH after reading a blog on gluten. I have used coconut oil, olive oil and oats as salve for the itch but after spreading it on my body; I itched nonstop and scratching it like crazy and took a shower right away.rnrnHas any of you read the book Eczema free forever by Rachael Anderson. I hope its not a hoax and be able to help a lot of people. rnrnWishing you all the best and we may all surpass this without going lunatic. Keep the faith.rnrnBy the way do you have recommendation on what else I can use as moisturizer? Or at least short relief of each. From yesterday I'm on GF to the best of my knowledge and I still itch all over. Does it take a while to effect?




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