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Dermatitis Herpetiformis, Maybe that Rash isn't just Eczema

Updated on March 20, 2013

My Story

When the first rash appeared, I was a foster parenting a premature baby and a one year old. I assumed it was a reaction to the wet wipes and constant diaper changing, and I really wasn't too worried. The secondary staph infection was way less than pleasant, and it was honestly what led me to the doctor. My doctor treated me with an antibiotic for the staph and steroid cream for what we assumed was an eczema break out. I was almost thirty-five, and I'd never had eczema. Believe me, I was less than impressed but I knew that it was possible to develop eczema as an adult so I didn't panic. The next two years were an almost constant stream of really itchy, swollen rashes that frequently became infected and never completely went away. I had to sleep in gloves, because sometimes I'd literally wring my hands together (in effort to stop the itching) until they bled. My wedding rings moved to the jewelry box, because my fingers were to swollen to wear them. I spent a small fortune on lotions and different herbal treatments that would bring minimal relief. It was not much fun, and I was never fully convinced it was just eczema. I couldn't believe that it was not going to get any better, but nothing I tried seemed to help. It wasn't until the hydro-cortisone cream stopped helping that I got really desperate. I started looking even more earnestly for answers.

During a miserable few days of what was essentially my worst break out, the answer (praise God) finally came. A friend had recently discovered that she had celiac disease, and while she was researching her new diagnosis, she found my rash on a celiac website. celiac disease is a basically an intolerance to gluten, or wheat products. It can cause serious damage to the intestines (and can be responsible for a host of other problems), and the only treatment for the disease is to completely eliminate wheat from the diet. That means no bread, cake, cookies, noodles, donuts, or pizza that are made the traditional way (lots and lots of wheat flour) can be in the celiac patient's diet. My friend urged me to try going gluten free. I was not exactly sold on the idea of leaving wheat products behind, so I visited the health food store in search of yet another herbal treatment. The lady behind the counter asked if I had ever tried eliminating my gluten. Not exactly what I wanted to hear but I acknowledged that it might be worth a try. The final straw came the following day when my breakout had become completely unbearable and I went to the doctor. My regular doctor was out of the office, so I went to see the doctor who takes care of my kids (not a pediatrician, but a fabulous family doctor). She had seen me a few times throughout my two and a half years of struggling, so she understood I was serious about getting better. She prescribed a different cream and suggested that I might consider a more whole food, or raw, diet. I told her what my friend and the health food store had suggested, and she thought it could help so I decided to give it a try. Within a week of living gluten free, my hands were back to normal. Now, understand, my hands hadn't been completely rash free since the first outbreak, and suddenly my hands were clear. Because I'm human and I really like donuts and pizza, I completely blew my new “diet” on vacation. I thought it would be okay to add the gluten back in because the rash was finally gone, but I was so wrong. Within two days, my fingers began to swell. On day three, the itching started and the rash followed within hours. I didn't need a blood test to tell me that I was gluten intolerant. I needed to get serious about changing my lifestyle and the beginning of that was research. Here is what I learned about Dermatitis Herpetiformis. We'll call it DH for short.

My Hands on Gluten

My Hands Gluten Free

Defining Dermatitis Herpetiformis

DH is, in essence, a celiac rash. It affects approximately 10 percent of celiac patients, but it affects about 25 percent of celiac patients who also have Hashimoto's disease (which I also have). More men are affected than women, and the rashes usually don't start until the twenties or thirties. It is a type of eczema, because eczema is basically a noncontagious inflammation of the skin, characterized by redness, itching, and the outbreak of lesions that may discharge serous matter and become encrusted and scaly (American Heritage Dictionary). But, DH is unbearably itchy and usually has a burning sensation that seems to get better after the little lesions begin to break open. Unlike most skin rashes, it doesn't generally go completely away. It just gets better and then worse again. As long as there is gluten in the diet, the irritant continues to cause the rash.

Possibly the only positive thing about DH is that celiac patients who have DH tend to have fewer of the telltale celiac symptoms, namely the intestinal problems. The bad news is that without the intestinal issues, DH tends to go undiagnosed for much longer and is often not diagnosed at all. I did not bother being tested for celiac, because my little vacation break in the diet was all the confirmation I really needed but testing is readily available. The testing must be done before going gluten free to be accurate, and it can either be a blood test looking for IgA antibodies or a skin test (also looking for IgA antibodies). As I did my research, I discovered that eczema patients who did make a dietary change to a whole food diet tended to have fewer breakouts. Since a whole food diet would inevitably involve less processed foods (gluten havens), it seems likely that many of those patients probably have DH and just haven't been officially diagnosed.

So, What's the Bottom Line?

DH will only get better on a strict gluten free diet, and, at least at this time, that diet is for life. But without the gluten, the rashes go away and stay away. The price is high, but, for the patient who has suffered through a DH rash for any length of time, it is an acceptable price to be pain free. I'm trying to avoid temptation to indulge in gluten-filled favorites, but I definitely fall and eat the occasional no-no. I pay for it quickly with a breakout and swear to do better next time.

Living gluten free involves more planning and some expense, but it is possible. Wheat flour is not the only flour out there. Rice and potato flour are becoming more and more available. Just before I went gluten free, I was going through a $10 container of lotion every single week and spending money left and right on herbal treatments that only provided a little relief, so I funneled that money into the grocery bill. And, thankfully, more and more food manufacturers (including Frito lay and General Mills) and restaurant chains (like Mazzio's and Shorty Smalls) are producing more and more gluten free choices, including donuts and pizza.

Gluten Free Pizza made with Gluten Free Bisquick

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    • kashmir56 profile image

      Thomas Silvia 4 years ago from Massachusetts

      A very interesting hub with all useful information within this well written hub for anyone who suffers with Dermatitis-Herpetiformis. Well done !

      Vote up and more !!! SHARING !

    • Mommy Needs a Nap profile image
      Author

      Michelle Clairday 4 years ago from Arkansas

      Thank you very much. I really appreciate you sharing my story. Hopefully others won't have to suffer as long before discovering the truth.

    • Winsome profile image

      Winsome 4 years ago from Southern California by way of Texas

      Nicely told M,

      You are a trooper giving up what we all crave. I'm on a carb free (not counting vegetables or other natural low carb foods) and I feel better. Can you use rice or oat flour? =: )

    • Mommy Needs a Nap profile image
      Author

      Michelle Clairday 4 years ago from Arkansas

      Thank you Winsome. It was totally worth giving up a few things to feel better. I use a lot of rice flour, and I have found several really good flour mixes. It just takes time to learn how to cook with other flours, but it is getting easier all the time. More major product lines are getting rid of the gluten all of the time. Since I wrote this article, I've learned that Dorito's and Bear Creek (a soup mix line) have reformulated several products in their lines. Life is good again.

    • AliciaC profile image

      Linda Crampton 4 years ago from British Columbia, Canada

      This is an informative hub that should be very useful to other people with unexplained rashes, Mommy Needs a Nap. I'm sure that it must be hard to avoid all the gluten-containing grains at first, but like you I'm seeing more and more gluten-free products in the stores. I'm glad that your new diet is helping you!

    • Mommy Needs a Nap profile image
      Author

      Michelle Clairday 4 years ago from Arkansas

      Thank you. It is a bit of an irritation sometimes, but the new diet is worth not having to hurt.

    • lindacee profile image

      lindacee 4 years ago from Arizona

      So glad you found the root cause of your horrible rashes. You are fortunate that there are so many gluten-free products and recipes now available. I'm sure it is not an easy dietary transition, but at least there are great alternatives out there so you can still enjoy foods that you love. Voted up, useful and interesting. :)

    • Mommy Needs a Nap profile image
      Author

      Michelle Clairday 4 years ago from Arkansas

      Thank you. I'm very grateful for all the options, and I'm extremely grateful that the list of options seems to grow weekly. It does get easier with time.

    • Peggy W profile image

      Peggy Woods 4 years ago from Houston, Texas

      Thanks for sharing your experience with us and the information about Dermatitis Herpetiformis and what can be done with regard to avoiding it by eating gluten free foods. Did the rash just appear on your hands or was it on other parts of your body as well? Up and useful votes and will share.

    • NMLady profile image

      NMLady 4 years ago from New Mexico & Arizona

      Wow this is interesting! May I also offer a suggestion. For years I was diagnosed with psoriasis. It turns out what I had was NOT psoriasis. It was a fungal infection from one of my trips abroad. It is still difficult to control BUT here is what works wonderfully! mix 1/2 white vinegar with 1/2 rubbing alcohol. Swab it on the areas several times a day. The vinegar kills the fungus and the alcohol dries the area so the fungus that is left has a difficult time growing. Works exceptionally well!

    • Mommy Needs a Nap profile image
      Author

      Michelle Clairday 4 years ago from Arkansas

      Thank you so much for reading. The really bad outbreaks tended to be other places, too. For me, the hands tend to be worse but I've heard of others getting it in other places.

    • Mommy Needs a Nap profile image
      Author

      Michelle Clairday 4 years ago from Arkansas

      Very useful information. Thanks for sharing it NMLady.

    • adity5 profile image

      adity5 4 years ago

      One of my friend is suffering from this. Thanks for sharing this. Very informative and useful !!

    • Mommy Needs a Nap profile image
      Author

      Michelle Clairday 4 years ago from Arkansas

      Thank you. I am glad it was helpful.

    • profile image

      Jo 3 years ago

      This story is pretty much exactly what I went through as well. For years and years I was misdiagnosed with dishydrotic eczema and put on prednisone, an endless amount of steroid creams, told to avoid nickel, stop washing dishes.. but nothing helped. As soon as I cut out gluten, within two weeks, the painful terrible rash that had been plaguing my life and at one point put me on the edge of a nervous breakdown, simply went away. I'm not going to bother doing the tests since it would mean going back on gluten. I'll just listen to my body and live a happy gluten free diet. It actually feel like a miracle happened. Just amazing. :)

    • Mommy Needs a Nap profile image
      Author

      Michelle Clairday 3 years ago from Arkansas

      I understand completely. It was an adjustment, but it's been well worth it.

    • profile image

      patty 3 years ago

      From my lifetime experience with gluten, I suggest you be wary of 'gluten-free' labeled products as well. I found my autoimmune allergic responses increase when I consume: teff, tapioca, soy and numerous other such glutenous fillers used in gluten-free foods. And be sure have your B12, vitamin D3 & calcium blood levels checked as with Celiac Disease there are frequent malnourishment issues. Best wishes to you!

    • Mommy Needs a Nap profile image
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      Michelle Clairday 3 years ago from Arkansas

      Thank you. That's very good advice. I'm so glad you shared it

    • profile image

      Carly 3 years ago

      Thank you so so very much! Last August a small rash of briny white pumps appeared between my middle and ring fingers on my right hand. I assumed poison ivy so I treated it as such and it just got worse. Since then it has NOT gone away at all. I've woken up with blood on my sheets from scratching my skin open while sleeping. Those two fingers look old and wrinkled (I'm only 26) because of this rash. I've been to two very prominent dermatologists and two primary physicians and none of them knew anything, just "oh it's excema" I'd wake up every night crying because of the constant itch to the bone. Soak my hand in ice water and then wrap tightly in gauze so I wouldn't reopen it by wringing my hands. I honestly thought about getting those fingers amputated. But then I started thinking it was something I ate. Maybe coconut? Gluten? Nuts? Thank you so much for this article. I now know I'm not crazy and alone in this awful condition. I'm gonna go get tested ASAP.

    • Mommy Needs a Nap profile image
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      Michelle Clairday 3 years ago from Arkansas

      I'm glad this helped you. I hope they can figure things out. Even if you don't test positive for gluten allergies, I would still try an elimination diet. Some people with sensitivities don't test positive the first time.

    • profile image

      Hilal 2 years ago

      Thank you sooo sooo much for the Gluten free recipes. This is very exnciitg for ppl like me who cannot eat chappati, puri, upma, sheera, and many many things made from maida, rawa, wheat flour !! Can this flour be used to make Samosas?

    • Mommy Needs a Nap profile image
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      Michelle Clairday 2 years ago from Arkansas

      I am glad it helped. I've never tried but u think you could make them with it. It may not taste exactly the same but it's worth a try.

    • profile image

      Emanoel 2 years ago

      Gluten Free Dutch Sugar Cookies 1 cup rice flour1/2 cup tapioca flour1 cup crasntorch1 teaspoon baking powder2 1/2 teaspoons xanthan gum1 teaspoon salt1 cup sugar1 cup Butter Flavor Crisco1 egg or 1/4 cup liquid egg substitute2 teaspoons vanilla1/4 cup potato starch, for kneading 1. Preheat oven to 350 degrees.Have on hand 2 ungreased cookie sheets. 2. In a small bowl, whish together the flour mix, baking powder, xanthan gum, and salt. Set aside. 3. In the bowl of your mixer, cream sugar and crisco. Beat in the egg and vanilla. Add the dry ingredients, mixing enough to combine. The dough will be a soft ball. With your hands, knead in enough of the potato starch to make the dough easy to handle and roll out. 4. Using about half at a time, place a piece of plastic wrap over the ball and roll out to about 1/8 inch thickness. 5. Cut into desired shapes and place on pan. 6. Decorate with coloured sugars before baking or use frosting to decorate after baking. 7. (With this dough, you can use all the scraps.) Just scrape them together and roll out again. They will not get tough. 8. Bake for about 13 minutes. Cool very slightly before removing from the pan. Was this answer helpful?

    • Mommy Needs a Nap profile image
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      Michelle Clairday 2 years ago from Arkansas

      Thank you.

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