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Specific Gene Tied to Dermatitis Herpetiformis

Celiac.com 01/08/2008 - Scientists at the University of Finland have announced the discovery of a particular gene that is tied to the development of the celiac-associated skin disease dermatitis herpetiformis, which is the form of celiac disease found in a full 25% of all celiacs. The gene is called myosin IXB, and it is located on chromosome 19p13.

In addition to being connected with a higher risk of celiac disease in both Dutch and Spanish populations, the gene has been associated with a higher risk of inflammatory bowel disease, systemic lupus, erythmatosus, and rheumatoid arthritis, which means that myosin IXB is likely a shared risk factor in all of these disorders.

Researchers looked at nearly 500 Hungarian and Finnish families, plus another 270 patients and controls. What they found was a substantial linkage to chromosome 19p13 (LOD 3.76 P=0.00002) that lends great weight to the notion that this is a substantial risk factor. Other variants of the myosin IXB gene showed no connection with celiac disease, though they did show a small connection to dermatitis herpetiformis.

Both phenotypes show a significant connection indicating that the role meaning that there still may be a role being played by nearby genes. They are calling for more comprehensive genetic and functional studies to determine what the exact nature of the role the myosin IXB gene in both celiac disease and in dermatitis herpetiformis.

As more studies are conducted, and more data emerges, we are likely to get a much clearer genetic picture of both celiac disease and dermatitis herpetiformis. A clearer genetic picture will likely lead to new and novel approaches to treatment that permit much more effective targeting of treatment.

Journal of Med. Genet. 2007 Dec 12

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47 Responses:

 
Jenny Hughes
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said this on
10 Jan 2008 3:44:20 AM PST
I found this extremely interesting as I am a celiac and also have a tendency to dermatitis herpetiformis. Before I discovered that I have celiac disease I did have DH on my upper arms and back but I find that now I control my diet I only get the odd patch occasionally.

 
Dave
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said this on
10 Jan 2008 12:22:13 PM PST
Having both celiac and Dermatitis Herpetiformis I am very interested in research on both topics

 
bill byrd
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said this on
11 Jan 2008 10:41:22 AM PST
I was diagnosed with dermatitis herpetaformis in 1972 I took dapasone for years then had to go on 100% diet. I sometimes get DH on my elbows.

 
sally
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said this on
13 Jan 2008 9:12:02 AM PST
I have dermatitis herpetaformis - very severe. I am on 100% gluten free diet. I had 70% of my body covered with lesions before going on the diet. I still have to take dapsone. I have about 2% of my skin still involved...but it's improving. However, anything I eat that has any traces of gluten causes a severe bout of itching followed by lesions that take months to clear up. I have to be extremely vigilant about what I eat. I can NEVER cheat.

 
Lisa
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said this on
16 Jan 2008 3:36:54 PM PST
This is great news. I was diagnosed with Dermatitis Herpetaformis, then celiac disease 4 months later. I am also vigilant where they gluten is concerned (and am on the BOD of my local Celiac Disease Foundation Chapter). I wish there was more to help others with Dermatitis Herpetaformis, perhaps this will get us on track.

 
Kristen
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said this on
17 Jan 2008 1:31:12 AM PST
This is fabulous research to track. After plenty of research and experiments, I've found my 3 year old son also suffers Dermatitis Herpetaformis, as well as cocoa and lactose allergies, all thanks to his skin reacting - from blisters to rough patches. So much for the 'dermatolgist' suggesting steroid cream and 'Hamiltons' lotions - ha! Find a good diet and naturopath and stick to him! Keep the research coming!

 
Robyn
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said this on
20 Jan 2008 7:09:35 AM PST
Wow. It took us 18 months to find the celiac diagnosis in my wheelchair-bound, renal failure son. The existing diagnosis led the dermatologist to 'assume' the sudden appearance of skin issues were related. Although we are now almost 4 weeks into the celiac diagnosis (2 previous gastroenterologists missed it), it was not until I read this article that I knew what the skin condition is called. Maybe I should educate the dermatologist.

 
Pattie White
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said this on
02 Jan 2012 12:19:00 PM PST
I searched symptoms online and requested that my dermatologist and gastroenterologist test for dermatitis herpetiformis and celiac disease, both later confirmed by blood test and biopsy. The gastro doctor had actually ordered the test among others 2 months prior, but didn't send enough blood to the lab, so I spent another 8 weeks wondering about the unknown final test. The dermatologist could only say that the lesions covering me from head to toe "didn't look like DH", but to humor me he tested anyway. It took 2 years on the gluten free diet for the lesions to heal for good.

 
mindy
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said this on
20 Jan 2008 4:13:36 PM PST
I have terrible itchy area that I believe is Dermatitis Herpetaformis, and I have celiac disease as my tTG was very very high (181) I am always looking for info. on DH, as i suffer terrible from painful itch. It eased with gluten free but worse while in FLA. So might have some other issues. Anyone know an expert in DH in the northeast?

 
Sandra
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said this on
24 Jan 2008 10:48:47 PM PST
I have it on my face all of a sudden. I went on the gluten-free diet and it cleared mostly but now....yuk!

I got glutened when the hurricane hit and couldn't get my gluten-free foods and have had a terrible time getting things back to where I was prior to that event.

I have found that using hydrogen peroxide after washing with a mild soap and rinsing well seems to help the lesions heal faster.

 
Norma
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said this on
04 Feb 2008 11:30:11 AM PST
I was treated by my Dr. For ulcers on my hands [ I had had a + lupus test and had told him I was allergic to penicillin] with penicillin and lost all the skin on my body tanned by the sun I almost died. He Died, new Dr would not take biopsy for celiac. I had rash on 70% of my body I went gluten free and have only small rash on feet, hands and elbows. What do you do to get 100% proof, without going back to gluten and the rash.

 
johnny parker
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said this on
04 Feb 2008 5:09:57 PM PST
After years of treating my Dermatitis Herpetiformis with Dovonex and fluocinonide creams I found out 6 weeks ago that I had celiac disease. I then went on a gluten free diet and my Dermatitis Herpetiformis is clearing up. I have Dermatitis Herpetiformis on my elbows, knees and shins. I still have to get the B12 shot each month and still take folic acid (2 pills ) everyday but I am feeling better. I am just amazed that with all the doctors and dermatologist that it took the Veterans Hospital in Richmond VA to find out the correct diagnosis of this disease.

 
Peggy Pazdro
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said this on
14 Feb 2008 7:34:06 AM PST
Good article on Dermatitis Herpetaformis. I hope they will find a cure for this soon.

 
Anita
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said this on
15 Feb 2008 12:26:42 PM PST
Each bit of quality info we can gather about this disease will help us cope--some people have it worse than others.

 
Lilian Argrave
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said this on
18 Feb 2008 1:17:38 AM PST
It is enlightening to read such articles as there is paucity of information from the medical world.

 
Anne Fernandes
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said this on
01 Mar 2008 7:28:53 AM PST
So interesting to read about others in the Celiac 'boat.' I too am on a 100% gluten-free diet, however, with the occasional unwitting contamination, my elbows, knees, back, and often the bottoms of my feet react immediately. The more truly gluten-free I am, the quicker my body reacts to the offending protein. Experience is a good teacher!

 
Eliane Gates
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said this on
01 Mar 2008 9:33:51 AM PST
I had a terrible itchy rash over most of my body for over 30 years ; it then developed into severe bullous dermatitis, while I developed many nutritional deficiencies - that's when I finally made the diagnosis , asking my dermatologist to confirm it by biopsy. I was right , and my doctor humbly recognized that he would have never thought of that disease .

At that time , I already had gone gluten free , so that the blood tests were negative . The jejunal biopsies still show an inflammatory state 2 years later, but I keep hope.
Thank you for the research , keep on looking and please , find us a drug that is less dangerous than dapsone!
Thank you America , from France.

 
Katie Schoot
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said this on
13 Apr 2008 7:30:47 PM PST
I had the dermatitis herpetiformis in January but none of my lesion biopsies, blood tests, or intestinal biopsies conclusively diagnosed celiac but my gastrointestinal doctor is having me do the gluten-free diet. I am definitely one of the unusual ones with catching the disease before it was full tilt in the tests. I have had gerd surgery and my gall bladder removed about ten years ago. I have had the intestinal & bowel difficulties for over 20 years and can't wait to see if the diet clears these difficulties up.

 
liz cogan

said this on
15 Jun 2008 6:35:12 PM PST
My husband found out he had celiac 13 years ago. He developed an itchy rash on his eye lids very itchy and burning. We went to 3 different doctors in N.Y. no one could help him. I found a web site about dermatitis herpetaformis and got him off iodized salt. Within days it went away. That was 6 years ago. It came back a couple of months ago. We only used un- iodized salt in my house. Does any one have any suggestions. I have yet to hear if anyone else suffers from DH on their eyelids.

 
Denise Martin
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said this on
24 Aug 2009 8:22:59 PM PST
I HAVE ITCHY EYELIDS BUT NO RASH. I DID NOT THINK IT WAS RELATED TO MY DERMATITIS HERPETIFORMIS. I HAVE SCALP PROBLEMS FROM DH. I ALSO HAVE CD. AFTER A YEAR ON THE GF DIET, I AM STILL NOT FEELING BETTER. THE MORE TESTS THAT ARE DONE, MORE PROBLEMS ARE DISCOVERED. i AM LOOKING FORWARD TO THE DAY I FEEL BETTER.

 
Denise
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said this on
17 Oct 2009 5:19:31 PM PST
I can really relate. I suffer from scalp, facial, chest and back lesions. I've been gluten-free for over a year now and I've seen very little progress. I also never ever cheat. I don't eat out, refuse to take any pills besides dapsone and have basically become a hermit. I only leave the house when I have to go to work. Thankfully, I work in a cube that is far away from the public. I resumed Dapsone at a low level because I cannot take these facial lesions anymore . I have had low blood counts on this medication before but I do not see any alternative. I've used Flucocinide (steriods) on my scalp for over a year and they are still not "disappearing". There are days that I just want to die. I do not relish the thought of living 40 plus more years with this disease.

 
Brenda
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said this on
23 Oct 2011 9:49:20 PM PST
Try avoiding corn. I found it caused what I called 'deep cystic acne' for me. I'm just figuring out that it must be DH. The dermatologist always called it acne off the scalp and seborhea (sp) on the scalp. When I get off all grains --especially CORN---it goes away!

 
Herbert
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said this on
03 Nov 2012 12:50:22 PM PST
Please, do not make the mistake of not eating corn. It is TOTALLY gluten-free. You may have been eating corn that came in contact with a product that has gluten. Try Polenta, the one made in Italy. It is delicious and totally gluten-free, just like corn on the cob, tortillas, and all corn products.

 
Sandra
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said this on
30 Jan 2013 11:14:51 PM PST
I have not been diagnosed formally by a doctor, but in researching the disease and realizing most of my flare ups have correlated with wheat (and perhaps iodized salt)--I'm assuming it's related. Years ago I had itchy blisters on my hands that didn't go away until I went on a very strict diet. I don't have health insurance, and am otherwise fairly healthy--but will try gluten-free and un-iodized salt.

 
judy campbell

said this on
07 Jul 2008 10:21:05 PM PST
My husband gets Dermatitis Herpetaformis on his eyelids. Makes his eyes very red and watery too. Often looks like he's cried for a week. He also gets them around his brows when he wears sunglasses for any length of time. Just the hot weather often brings them out. Belt lines, close clothing brings them on. He is 90% better than he was before he went gluten free 8 years ago. He's also Coeliac. Dermatitis Herpetaformis is horrible. Turned him into a monster for a few years until diagnosed.

 
Karen
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said this on
22 Jul 2008 10:00:58 PM PST
I went to my doctor last Oct. and was diagnosed with Dermatitis Herpetiformis and Celiac Disease. I am trying so hard to be 100% free...Dermatitis Herpetiformis on elbows, underarms , on knees was much better...I must have gotten gluten somewhere..I have broken out so bad ...summer has got to be the worse..itching burning... Thanks for this site and for the conversation...Anything that will cool down the itching and burning besides a prescription ?

 
Karen C.
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said this on
29 Jul 2008 2:20:13 PM PST
Great article. I may need to resort to genetic testing. Nearly six years ago, I experienced the itchy, red rash on my arms and legs for nearly 9 months. I must have had Dermatitis Herpetaformis but the dermatologists could not determine what it was. They kept treating me with steroidal creams and steroids until there was nothing left to try. It was pretty disheartening. I was about to give up when I read an article about a young boy and his science project about diabetes and that's when I realized I, too had the same symptoms he described. I had been misdiagnosed all my life as having IBD, but immediately on a gluten-free diet, the rash disappeared and never returned. Sure, it's been tough living Gluten Free and maybe even harder to make others understand celiac disease. Since I've been gluten free for 5 years, all gastro tests have been clear and they have not been able to determine the diagnosis of Celiac Disease. But why is it that doctors never focus on your diet when there is a problem with the skin?

 
anneli
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said this on
11 Aug 2008 5:02:05 AM PST
Hi! I have had Dermatitis Herpetiformis 18 years and amd doing well. I can recommend: If you have a diet of absolutely 100 % free of gluten ( NATURALLY free), you'll not get any 'patches' on your skin again. In some countries, according the law, the gluten free products can contain 0.03 % gluten and still be called a gluten free product. So, you may still be eating small quantities of gluten and get the symptoms on the skin. Only naturally gluten free diet helps. ALWAYS read ' ingredients' on the package, and do not trust automatically the ''gluten-free'' label. Best regards to you all.

 
judy
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said this on
01 Sep 2008 3:16:58 PM PST
Diagnosed in mid 50's at University of Washington by famous researcher studying the the endoscopy tube - despite not having obvious symptoms as a young teen I and other children were put on the Gluten Free diet - our biopsies were positive and at least my mother had full blown celiac . The Dermatitis Herpetiformis didn't show up until age 30 when I stopped the diet - finally I learned my lesson after three positive skin biopsies and thinking I had scabies and finally experiencing dramatic relief with both Bromocriptine and later after another dietary lapse Dapsone . I believe the UW researcher saved
my life and made me a much healthier person by encouraging me to follow the diet even at such a young age.

 
C.L. Weidemeyer
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said this on
03 Jun 2009 3:54:13 PM PST
I was diagnosed with Dermatitis Herpitiformis while in the US Naval Hospital, Bethesda Md. in 1953 and it was months before it was confirmed. No one had any idea that it was gluten connected then and I took Diasone of Sodium and Dapsone for 55 years before I was advised to avoid gluten by the VA. By that time, the Dapsone left me with severe neuropathy of the feet. Since going on a strict gluten free diet with colchicine pills, it is finally under control. When diagnosed, I was told it was not an allergy but iodine should be avoided. My Doctors scoffed when I told them that I break out when I drink Beer. I was right all the time and it took years before the medical community accepted that fact.

 
georgianne
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said this on
06 Jun 2009 4:50:09 PM PST
There is someone other than me that has dermatitis herpetiformis. So SORRY that we have it, but glad I'm not alone. I sure do feel alone though...

 
Cheryl
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said this on
07 Jun 2009 4:59:56 PM PST
This is good info. There are so many celiacs who are hostile to the genetic side of this disease.

 
sammy
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said this on
29 Oct 2009 3:58:24 PM PST
Does beer, wine and spirits affect DH? Anyone with this experience like to hear from them.

 
joe
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said this on
31 Dec 2009 10:52:56 AM PST
You can have DH/Celiac reactions to any alcoholic drink that is made from wheat, rye or barley. I have not had a problem with Jack Daniels or other purely corn mash derived whiskey. Budweiser now makes Red Bridge, a gluten free beer that is excellent with a nice full flavor. I have never had a problem from any wines except those that contain tannins from oak. Tannins can cause extreme swelling of the esophagus.

 
Deb
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said this on
11 Nov 2009 7:47:56 AM PST
I too suffer with severe acute "eczema". I am convinced after much research that I have DH. being 100% gluten free for 6 months has not helped. some days I feel like I am going to lose my mind.

 
Bill West
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said this on
15 Nov 2009 3:38:16 AM PST
I have had DH and celiac disease for over 50 years, and have found that there are over 300 different DX that things that can show up as celiac disease or DH. It took 9yrs before I new I had DH and 40 more to find about celiac disease. I would not wish this on anyone.

 
marietomates
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said this on
29 Jan 2010 7:57:29 PM PST
Six months gluten free and this just showed up. I thought I had dust mites or spider bites, and now I have Dermatitis Herpetiformis. Home remedies? HELP! I don't have health care...

 
Kevin prince
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said this on
15 Mar 2010 5:26:35 AM PST
I found this after Googling dermatitis herpetiformis and eyes. I am 33. My dermatitis herpetiformis broke out in college when I started drinking tons of beer. I can sympathize with everyone on this blog. My dermatologist diagnosed me after about five office visits. His diligence saved my life. Dapsone and diet help tons, but relapse is horrible.

 
jim
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said this on
11 May 2010 10:24:37 PM PST
I have to completely avoid wheat, rye, barley and oatmeal or I itch badly. I take vitamin C pills (ester c) 2 to 6 per day which really helps stop the itch. You must stay gluten-free diet. I also am allergic to dairy.

 
Alexis
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said this on
22 May 2010 6:49:22 PM PST
I wonder if celiac could have caused a condition which I had, years ago, Hydatidiform molar pregnancy. This resulted in a hysterectomy at age 24. Now, granted, this was back in 1963...and, yes, I have been confirmed as having celiac.

 
Sigridur K.
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said this on
22 Jun 2011 2:07:24 PM PST
Thank you people! I also Googled D.H. + eyes and just realized the burning rash on my eyelids is DH. The rash started a few month's after going gluten free (4 years ago) and I didn't think it was DH because I have never seen the eyelids mentioned before. But now I see small blisters appearing on the eyelids as well. The only thing that has giver me any relief from the discomfort is Vaseline.

 
Christa
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said this on
29 Aug 2011 6:28:39 PM PST
I have DH and there is something I want to add. I can keep my rash gone about 95% of the time through diet alone. I have never been on medication for it. Avoid the iodine, and heavy iodine seafood. Also, I no longer go into barns or allow regular flour based mixes in my home. If you are breathing gluten, you are eating gluten!

 
Melissa Childs
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said this on
13 Dec 2011 6:27:32 AM PST
These comments are SO helpful. I was diagnosed about a year ago and still haven't been able to clear up my lesions. My doctor had never even heard of this - I basically forced testing. It's unbelievable to me that this the medical world is so blind to this... Hopefully more testing will help bring attention.

 
hans
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said this on
02 May 2012 8:08:45 AM PST
I would like to ask to anyone about the exercise or any kinds of sport activity, is it advisable to do it moderately or something? Shouldn't we have intensive exercise? For the past one year I have found it pretty hard to do exercise since when I sweat it gets really uncomfortable and the next day my skin gets worse because I get too tired and it seems I've been "forcing" myself that much (which in fact, no. before I got DH I exercised much, much more), I feel like I'm super fragile and weak physically and it really bothers me since doing sports was my hobby, and I am unable to do so since I've been having this dermatitis herpetiformis. Thanks.

 
Herbert
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said this on
03 Nov 2012 12:59:15 PM PST
Same here. I had to stop exercising because I feel so run down from celiac disease and dermatitis herpetiformis combined. Complex B vitamins help a lot.

 
Veronica
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said this on
30 Oct 2012 4:31:48 PM PST
I was diagnosed with DH at the age of 12. My twin sister was finally diagnosed with celiac disease about 5 years ago (we're 42). I've finally committed to a gluten-free diet within the last 18 months but still occasionally get breakouts. I've taken 100mg/daily of dapsone for about 20 years. Since going gluten-free, I've dropped over 50 pounds and I have much less fatigue. I do b12 shots monthly as anemia is a big problem. I break out in all the usual places but also get rashes inside my nose, mouth, ears (right at the entrance of my ear canals) and eyelids. I've never been lesion free on my scalp.

 
Alma
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said this on
14 May 2013 4:18:01 PM PST
Along with gluten, iodine, there is also fruit sugar. Fruit sugar you would think would be very health, but no!! Apples and pears at the top of the list. Look it up. And make sure to cut all fructose. honey, etc. from your diet. There is a lot of information and you need to look everything up to help to stay healthy. This is serious, so don't sell yourself short.




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