My struggle with Dermatitis Herpetiformis (DH)

Seeing as today is my Birthday, I wanted to share with you all a personal story of mine. It has now been 5 years since I was diagnosed with celiac disease. My health is back to normal and although I still struggle from time to time I am doing so much better.I hope my following story helps you or someone you know. The best gift for me is helping fellow celiacs and those with gluten sensitivity.

Dermatitis Herpetiformis (DH) is “a blistering, intensely itchy skin rash.” It’s usually symmetrical in shape and is most commonly located on the elbows, knees, buttocks, and upper back. People can experience the rash on other parts of the body, and severity of symptoms can vary.

I unfortunately not only have celiac disease but also have DH. Staying off of gluten really is the only lasting solution for DH. I do my best to stay away from gluten but with a busy life and sometimes eating on the go I occasionally consume gluten unknowingly.

Recently I had a DH outbreak that was probably one of the worst I have ever had. Many small patches all over my back and one right in the middle of my chest. No only was it embarrassing but also extremely uncomfortable.

I knew I needed to find a solution for future if I ever accidently consumed gluten. I first tried using cortisol cream for the itching. It did help a little with the pain but it didn’t help the blisters go away. A few of the blisters opened up and were extremely painful so I thought to put Neosporin on them. It once again helped with the pain but they were not going away.

At this point I was stuck to wearing very covering clothes and putting band aids over the open blisters. Being only 22 years old this was even more devastating. I had to turn down social events due to the DH.

I did some research and my mother, Tina Turbin, put out a message on the celiac listserv to see if we could come up with any solutions. The feedback we got was absolutely amazing. So many people had the same problem as me and had solutions. I felt a sense of relief.

I decided to get a prescription for Dapsone seeing as it seamed to me to be the best fit. Although Dapsone is a very strong drug and should be used sparingly I figured it was the perfect match for me because it is quick acting and I don’t eat gluten purposely ever so I knew I wouldn’t have to use it often at all. I like to keep things natural as much as possible in my life so this was important for me.

I got my little jar of Dapsone cream and followed the directions exactly. Two times a day I applied a thin layer to the areas of the DH outbreak.  Not only did it relieve the pain but within 3 days of using it I saw a huge change in the appearance of the DH. I only used it for at total of 5 days because I wanted my body to be able to fight the DH on its own as much as possible. The DH is almost gone now and I am not getting any more outbreaks whereas before it was as if it was spreading all over me.

I know there are many people with Celiac disease who have DH. I hope my story helps you or someone you know. I am going to go eat some gluten free cake now!

 

Miranda Jade Turbin

http://www.GlutenFreeHelp.info

From our home to yours, Tina Turbin
If you have any questions or suggestions just email me at info (at) GlutenFreeHelp.info.


About Us

I'm a cookbook-collecting, recipe-developing paleo junkie, and I live in the kitchen. I'm hooked on farmers' markets, traveling, eating healthy, and hiking until my legs scream at me. There's nothing better than hanging out with family and good friends. I have fun and sleeping is just plain boring. Read more About Tina Turbin.


8 thoughts on “My struggle with Dermatitis Herpetiformis (DH)

  1. Doctors discourage finding solutions on the internet but that is the best source for my own research. I have oral lichen planus and follow many of the holistic treatments I find on the internet since the medical establishment has none. So far, I have kept my condition at mild to moderate level. I’m glad you found the medicine on the internet that was perfect for you.

  2. I get DH on my face, primarily (although also on my arms, legs, chest and back). My mother had it primarily on her back. Because mine was an unusual presentation it baffled the doctors and was misdiagnosed for over a decade. The lesions take forever to heal (around 2 months), so most recent photos of me show healing lesions. I actually still have not had a proper diagnosis because I went gluten free accidentally and that was the clue to help figure out that this was what I needed. I went back on gluten for a couple weeks for the bloodtest, but it wasn’t enough to get the test to come back positive, and I am NEVER doing that again. I don’t need the official diagnosis to convince me that I need to stay off gluten. Like you, I try to stay gluten free, but when I am inadvertently glutenized, all it takes is that little bit to impact my appearance for a very long time, and I never seem to be able to avoid it long enough to completely heal. I’ve only been gluten free for about six months, so maybe I’ll get there. I’m still hopeful. Right now, I’m as close to healed as I’ve been since starting the diet. If I can get through another week or two … 🙂

  3. Pingback: Miranda Jade Turbin of GlutenFreeHelp.info Is Asked For Help by the Gluten-Free Community
  4. My 11 year old daughter is celiac and gets dh on her thighs. At the first sight of the tiny blisters, we give her sublingual selenium. So far, it has kept the blisters from progressing. We are strict about gluten free, but of course it is nearly impossible not to inadvertently ingest some from time to time. Their is some research in regards to selenium and vit e in treating dh. I hope this will be of some help to others.

    Also, we had a wonderful nutritional test, the NutraEval, done on my daughter which showed current nutrient deficiencies. Now we can target exactly what she is lacking.

    My best.

  5. I found your article helpful. I have DH, not celiac. I have been GF for about 5 years including the skin care products I use. However, I still get out breaks that are itchy and painful. I use Aczone cream which is very expensive but does help over time. My dermatologist wants me to take Dapsom in tablet form and I’ve yet to do that as the side effects seem intense. Have you taken the Dapsom prescription and if yes, did you have side effects?
    Thank you

    1. I have never taken the pill form. I really stay away form gluten though. I let every single waiter know I am celiac and even have them tell their kitchen staff. I know it’s probably annoying for them to have me harp about i but by being this careful, I have not had a DH outbreak in a very very long time. I really hate taking pills and medication so my solution has just been to be fully 100000% gluten-free.

  6. I started itching four years ago. I had no idea where this sudden itch was coming from. I went to a doctor and two dermatologists. The diagnosis was dermatitis and eczema. I was prescribed prednisone and countless cortisone cremes. Nothing helped. One day, doing my own research, I determined I had scabies! I was convinced I had these microscopic parasites and I convinced my doctor and I was prescribed Ivermectin and Permethrin. I wanted to believe the meds would help but they didn’t. I began to wash my clothes in hot water every day, and spray all the furniture with scabicides. I thought maybe I was doing something wrong. I took these meds on and off for one year. In frustration, I went to see three more dermatologists. They all agreed, It was not scabies. They said it was eczema or dermatitis.

    I began to get little tiny bumps all over my body. The itching was so intense I couldn’t sleep. I tried everything for relief including burning the skin with a hairdryer. Various hot Essential oils would give me relief. One day I realized that whenever I ate gluten, the itching became more intense. I stopped eating gluten and after a week I felt some relief. After two months the itching and bumps were all gone. A year goes by, and I eat some bread. Nothing happens. Over a two-month period, I begin to incorporate gluten back into my diet. I am still perfectly fine for months, and then one day the itching comes back with a vengeance. Again I went through the whole routine, is it scabies? Finally, I stopped eating gluten. it’s been three weeks, I am beginning to see big results. I know it’s a process but I will never eat gluten again! I’ve now learned my lesson twice. There will be no third time.

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