Dermatitis Herpetiformis (DH), also commonly referred to as Celiac Skin, is a rare skin disease that is commonly found in people with Celiac Disease. Some quick research on the subject unveiled a few interesting things.
Here is what I’ve learned so far about DH:
What are the Causes of Dermatitis Herpetiformis?
The rash is caused when gluten in the diet combines with IgA, and together they enter the bloodstream and circulate. They eventually clog up the small blood vessels in the skin, which attracts white blood cells (neutrophils), and releases powerful chemicals called complements. This is how the rash is created. Iodine is required for the reaction, so people with DH should avoid using Iodized salt if possible.
What are the Symptoms of Dermatitis Herpetiformis?
The symptoms of Dermatitis Herpetiformis are intense burning, stinging, and itching around the elbows, knees, scalp, buttocks, and back. More locations can also be affected and the severity can vary depending on the person.
What Does Dermatitis Herpetiformis Look Like?
DH looks like small clusters of red, itchy bumps. There are tiny water blisters, but these are quickly scratched off. Before they form, the area usually has a burning feeling. They scab and heal over within 1-2 weeks, but new spots continue to appear. DH is a lifelong condition, but remission may occur in 10 to 20 percent of patients.
What are the Tests for Dermatitis Herpetiformis?
Diagnosis of DH usually requires at least one skin biopsy, and sometimes a blood test (looking for anti-gliadin, anti-reticulin, and anti-endomysial antibodies).
How Do You Treat Dermatitis Herpetiformis?
Complete elimination of gluten will often cure DH, but improvement often takes months. This means sufferers must follow a strict gluten-free diet. Cutting down on wheat and gluten may reduce the amount of medication needed, but will not be curative.
In the meantime, there is a very effective treatment available to sufferers of DH. Dapsone is a drug that will improve DH in only a few days. Because there can be side effects, the dose of Dapsone is usually started at a small amount, and then raised up over a few weeks until all symptoms are suppressed. Dapsone may have adverse effects, so weekly or bi-weekly blood tests will be needed for the first three months. There are a few alternative treatments if Dapsone cannot be used (sulfapyridine, tetracycline), however, these do not work as well.
I suspect I may have dermatitis herpetiformis (DH) as I have done extensive research and symptoms seem to indicate DH. However, I have been to 2 different docs, one being a dermatologist, none of which have suggested testing for DH. What other kind of specialist would be recommended to do appropriate tests? I am guessing a gastroenterologist since there is the G.I. component. The only G.I. symptoms I have are occasionally I notice some whitish mucus in stools and very foul smelling gas. Any advice would be greatly appreciated!
A
Hi Angela,
I have had DH for 6 months, though not knowing what it was until today! I had blood tests, expensive visits to a useless Skin Specialist, allergists, my GP 1,000 times, biopsies coming back with vague answers, many (too many)creams, lotions & potions, bucket loads of anti-histamine,patch tests, prick tests. My Allergist found I had Ceoliac Disease through a blood test taken as “grasping at straws” diagnosis. The DH is because of Celiac . In 3 days my GP is starting me on Dapsone, as he needs to find out more about this drug :dosages, side effects etc.
I suggest you have a simple blood test for Ceoliac Disease & take it from there. Good Luck!
Niki
I was diagnosed 24 years ago with DH, and have been on Dapsone ever since. I have had DH for about 30 years, as it took awhile to diagnose it. I was diagnosed with Celiac Disease a month ago. I have never had any problems with the Dapsone. It has been hugely important in keeping my DH comfortable to live with. The blisters are extremely painful, and the Dapsone keeps them at bay. I wanted to share that when I was pregnant with all 4 of my children, the DH went into complete remission, during the pregnancy, but the day after delivery it came back with a fury. I did not get diagnosed until 2 weeks after the birth of my last child, as I could not tolerate the pain of the lesions. My dermatologist did a biopsy and found out what it was. I started to suspect a few years ago, I would eventually get a Celiac diagnosis someday, and I did. I want to close in saying, for me, eating gluten free for the DH, never worked. I am experimenting with removing all skin products I use, that contain gluten. DH is a nasty, painful, chronic skin disorder, that I have lived with since I was 15. I would not wish it on anyone.
Leslie
Hi Leslie
My name is Missy, I’m 35 and I have been dealing with what I THINK is DH since May of last year (2014)!?
I jumped the gun after 4 months of My Primary Dr not knowing what to do with my sudden rash onset and went Gluten Free and now I am having the hardest time getting a diagnoses without going back on Gluten and going through HELL again—
it started on my right arm as one itchy bump one night that I thought was a bug bite and as the night went on it spread down my under part of my arm past my elbow to my wrist…then the next day it started on my left arm same pattern then went to my right top leg and spread down (meanwhile these are all little tiny itchy bumps) and again went down the front of my left leg and then wrapped around to my butt on both sides. And I have itchy little bumps that come and go on my scalp throughout the day…
I decided to go gluten free in late August for 30 days by recomendation of my Chiropractor and he thought maybe it would help. It did, I daw improvemnt of the rash,but I also had other symptoms with the rash, like when its on my elbows my actual joints ache badly and when its on my knees they ache too — did you ever get joint pain with onset of the rash?
I also get really itchy eyelashes and some itchy bumps on my left eyelid.
I ate some gluten and dairy and sugar (which I had avoided all of them the first 30 days) and 2 days later after eating all of them at once (my bad for not reintoducing one at a time) I broke out again with tiny little itchy bumps, joint pain, anxiety, night sweats, brain fog etc…
My question is this…I have now been gluten free for 5 motnhs and I STILL get itchy bumps here and there and random small itchy patches that take a week or two to calm back down.
When you used Dapsome all those years….where you still eating GLUTEN The whole time?
I want to maybe go back to eating gluten, so I can get an offical diagnoses….I did a biopsy of my rash in December, but the resluts were negative….I’m wondering if its bc I’ve been GF for so long that its not showing?
How did you get a Celiac Dignoses? Were you still eating Gluten?
Do you think I could go back to eating Gluten, but take the Dapsome while eating it for a few months, so that I could go get a Endoscopy of my small intesting to see if I really have Celiac or not???
I am a Mom of two little girls and I really want to know for their sake, if I have Celiac for sure?
ANy advice would be so appreciated…Thanks so much
My email is mteal1@cox.net
Hope all is well.
Oh and let me add that I have seen two derms and all say Dermatitis…but they all think its weird that I have joint pain with the rash…but they said its not psoriasis so it cant be psoriatic arthritis and no one knows much about DH, but all the places I break out sound exactally like DH…one night over last summer before I stopped eating Gluten I woke up with an intense burning pain in my elbow and about an hour later I had little water blisters going in a circle around my elbow — other than those little blisters, I mostly get the itchy bumps and turn into a bunch of itchy bumps next to eachother…small like little bites…
Its not bed bug – I’ve had our bed checked and I’ve been scraped for Scabies and ntohing else has helped except my diet…so I don’t want to self diagnose, but I don’t know how else to go back to eating gluten saflety and be a good Mommy at the same time and not feel like total **** everyday while glutening myself back up to get a real dignoses….
I also want to know for their sake…my little 6 year old has had little itchy bumps on her arms too and a few on her fingers and then they go away and now she has some pimples on her butt and she pulls at her underwear all day litke they irritate her…
do any of your children have it? Do you know any other signs? Bc none of us have Tummy issues and my kids are more on the constipated side, not the classic GI stuff….
Ok thanks. Hopefully you will see this seeing as this was posted 5 years ago 🙂
I have just recently been diagnosed with DH as a result of Celiac Disease. I have been only living with the DH since last April and finally went to a dermatologist who performed the skin biopsy’s. He then recommended that I go to a GI as it may prove to be Celiacs -and it was. I have began the gluten-free lifestyle and the skin healing by taking Dapsone. I have heard some bad comments about Dapsone causing blood problems, but so far tests are negative. I am hoping that after a year or so on Dapsone and a gluten-free diet, I will be able to drop the Dapsone completely.
Thank you, Pete
Pete, your correct in that you will be able to drop Dapsone completely after time. You should even be able to scale it back more and more as time goes on. I am Celiac positive, as well as having DH I was also vitamin D deficient. After over a year of misinformation on DH and Dapsone, I finally saw the light from doing research on the net. DH is only a symptom of Celiac.. All others that posted to this topic, if you have DH then you have Caliac.. You need to go 100% GF, absolutely no gluten in you diet, in you personal care products. I guarantee that the damage is still being done, Dapson is really only a mask to DH (Celiac). Celiac is NOT only a GI issue, in fact I had NO GI symptoms at all, mine was DH, followed by Severe Fatigue, and exhaustion, and what feels like Neuropathy (which I still get when exposed) and a feeling of my head in the clouds, very tired legs (Calves). On Biopsy, My Duodenum was at Marsh 3.
Check out Celiac.com to use as another resource of info
Also A MUST!! Pick up this book at Amazon: Celiac Disease: A Hidden Epidemic, by Peter H.r. Green
The varied symptoms of Celiac as outlined in this book will blow your mind.
hey, around last year i went to the emergency room because i had something that was growing on my thumb. i got scared and went to the ER, there the nurse told me that it was herpes, she checked every where in my body but didnt find anything. at that time i was sexually active so that made me curious as to why i might have herpes. they sent me to the dermatologist and he wasn’t sure if it was herpes because the blisters opened up and there was this yellowish liquid in it. the doctor gave me a topical cream and i have to use it every day because if i don’t use it the thumb starts feel a bit itchy and i see something forming there. what can you guys tell me about it because from what i know herpes leaves then comes back but this reappears of i dont apply the cream to the site every day.
Sounds like Moluscum Contagiosum.
I am the friend of a very desperate family. Their 14 year old son was diagnosed with celiac disease at age of 10… Despite 5 years of being misdiagnosed due to his extreme dermatitis herpetiformis which was wAs later diagnosed with a skin biopsy. Despite a 100% gluten free diet starting 4 years ago, his diet is also soy, msg, and dairy free. He currently takes vit B supplements, probiotics, iron and now has a new doc who has him on copius amounts of merc sol (confused by that one) He has been treated by homeopath for last 5 years and despite numerous changes and supplements has had little to no success with the suppression of SEVERE DH covering aprox 90% of his body….parents have lost faith in traditional doctors as most would have him on cortizone cream and various types of antibiotics which work temporarily followed by a major relapse… Not sure what their reception to dapsone treatment would be… Considering there past experiences. Are there similar cases out there?… What else can they possibly remove from his diet? He is 14 going on 80 in constant pain and itch that nothing seems to relieve. I have found this site to be very informative in regards to some of these issues…. These people need help! Like yesterday…any information or recommendations or refers to an “experienced” specialist would be greatly appreciated…. This kid has been “guinea pigged” to near death