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    Specific Gene Tied to Dermatitis Herpetiformis


    Jefferson Adams

    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.


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    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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    Guest Jenny Hughes

    Posted

    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.

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    Having both celiac and Dermatitis Herpetiformis I am very interested in research on both topics

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    Guest bill byrd

    Posted

    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.

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    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.

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    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.

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    Guest Kristen

    Posted

    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!

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    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.

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    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?

     

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    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.

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    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.

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    Guest johnny parker

    Posted

    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.

     

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    Guest Peggy Pazdro

    Posted

    Good article on Dermatitis Herpetaformis. I hope they will find a cure for this soon.

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    Each bit of quality info we can gather about this disease will help us cope--some people have it worse than others.

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    Guest Lilian Argrave

    Posted

    It is enlightening to read such articles as there is paucity of information from the medical world.

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    Guest Anne Fernandes

    Posted

    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!

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    Guest Eliane Gates

    Posted

    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.

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    Guest Katie Schoot

    Posted

    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.

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    Guest liz cogan

    Posted

    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.

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    Guest judy campbell

    Posted

    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.

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    Guest Karen

    Posted

    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 ?

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    Guest Karen C.

    Posted

    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?

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    Guest anneli

    Posted

    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.

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    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.

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    Guest C.L. Weidemeyer

    Posted

    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.

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    Guest georgianne

    Posted

    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...

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    Scott Adams
    Iodine testing for DH: This is an old procedure used to create DH blisters. By applying a 30 percent solution of iodine as a patch, a DH outbreak can be created. This may be applicable in some patients when a biopsy is needed and no blisters are available.
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    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.
    Resources:
    About.com: Dermatitis Herpetiformis, The ‘Gluten Rash’. Celiac Disease Awareness Campaign: Dermatitis Herpetiformis. eMedecine.Medscape.com: Dermatitis herpetiformis.

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    Whatever the reason that stuttering has not been reported in the medical literature in association with gluten ingestion, a number of personal disclosures and comments suggesting a connection between gluten and stuttering can be found on the Internet. Abid Hussain, in an article about food allergy and stuttering said: “The most common food allergy prevalent in stutterers is that of gluten which has been found to aggravate the stutter” (10). Similarly, Craig Forsythe posted an article that includes five cases of self-reporting individuals who believe that their stuttering is or was connected to gluten, one of whom also experiences stuttering from foods containing yeast (11). The same site contains one report of a stutterer who has had no relief despite following a gluten free diet for 20 years (11). Another stutterer, Jay88, reports the complete disappearance of her/his stammer on a gluten free diet (12). Doubtless there are many more such anecdotes to be found on the Internet* but we have to question them, exercising more skepticism than we might when reading similar claims in a peer reviewed scientific or medical journal.
    There are many reports in such journals connecting brain and neurological ailments with gluten, so it is not much of a stretch, on that basis alone, to suspect that stuttering may be a symptom of the gluten syndrome. Rodney Ford has even characterized celiac disease as an ailment that may begin through gluten-induced neurological damage (13) and Marios Hadjivassiliou and his group of neurologists and neurological investigators have devoted considerable time and effort to research that reveals gluten as an important factor in a majority of neurological diseases of unknown origin (14) which, as I have pointed out previously, includes most neurological ailments.
    My own experience with stuttering is limited. I stuttered as a child when I became nervous, upset, or self-conscious. Although I have been gluten free for many years, I haven’t noticed any impact on my inclination to stutter when upset. I don’t know if they are related, but I have also had challenges with speaking when distressed and I have noticed a substantial improvement in this area since removing gluten from my diet. Nonetheless, I have long wondered if there is a connection between gluten consumption and stuttering. Having done the research for this article, I would now encourage stutterers to try a gluten free diet for six months to see if it will reduce or eliminate their stutter. Meanwhile, I hope that some investigator out there will research this matter, publish her findings, and start the ball rolling toward getting some definitive answers to this question.
    Sources:
    1. Toft M, Dietrichs E. Aggravated stuttering following subthalamic deep brain stimulation in Parkinson’s disease--two cases. BMC Neurol. 2011 Apr 8;11:44.
    2. Tani T, Sakai Y. Stuttering after right cerebellar infarction: a case study. J Fluency Disord. 2010 Jun;35(2):141-5. Epub 2010 Mar 15.
    3. Lundgren K, Helm-Estabrooks N, Klein R. Stuttering Following Acquired Brain Damage: A Review of the Literature. J Neurolinguistics. 2010 Sep 1;23(5):447-454.
    4. Jäncke L, Hänggi J, Steinmetz H. Morphological brain differences between adult stutterers and non-stutterers. BMC Neurol. 2004 Dec 10;4(1):23.
    5. Kell CA, Neumann K, von Kriegstein K, Posenenske C, von Gudenberg AW, Euler H, Giraud AL. How the brain repairs stuttering. Brain. 2009 Oct;132(Pt 10):2747-60. Epub 2009 Aug 26.
    6. Galantucci S, Tartaglia MC, Wilson SM, Henry ML, Filippi M, Agosta F, Dronkers NF, Henry RG, Ogar JM, Miller BL, Gorno-Tempini ML. White matter damage in primary progressive aphasias: a diffusion tensor tractography study. Brain. 2011 Jun 11.
    7. Lundgren K, Helm-Estabrooks N, Klein R. Stuttering Following Acquired Brain Damage: A Review of the Literature. J Neurolinguistics. 2010 Sep 1;23(5):447-454.
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    Jefferson Adams
    Celiac.com 06/14/2018 - Refractory celiac disease type II (RCDII) is a rare complication of celiac disease that has high death rates. To diagnose RCDII, doctors identify a clonal population of phenotypically aberrant intraepithelial lymphocytes (IELs). 
    However, researchers really don’t have much data regarding the frequency and significance of clonal T cell receptor (TCR) gene rearrangements (TCR-GRs) in small bowel (SB) biopsies of patients without RCDII. Such data could provide useful comparison information for patients with RCDII, among other things.
    To that end, a research team recently set out to try to get some information about the frequency and importance of clonal T cell receptor (TCR) gene rearrangements (TCR-GRs) in small bowel (SB) biopsies of patients without RCDII. The research team included Shafinaz Hussein, Tatyana Gindin, Stephen M Lagana, Carolina Arguelles-Grande, Suneeta Krishnareddy, Bachir Alobeid, Suzanne K Lewis, Mahesh M Mansukhani, Peter H R Green, and Govind Bhagat.
    They are variously affiliated with the Department of Pathology and Cell Biology, and the Department of Medicine at the Celiac Disease Center, New York Presbyterian Hospital/Columbia University Medical Center, New York, USA. Their team analyzed results of TCR-GR analyses performed on SB biopsies at our institution over a 3-year period, which were obtained from eight active celiac disease, 172 celiac disease on gluten-free diet, 33 RCDI, and three RCDII patients and 14 patients without celiac disease. 
    Clonal TCR-GRs are not infrequent in cases lacking features of RCDII, while PCPs are frequent in all disease phases. TCR-GR results should be assessed in conjunction with immunophenotypic, histological and clinical findings for appropriate diagnosis and classification of RCD.
    The team divided the TCR-GR patterns into clonal, polyclonal and prominent clonal peaks (PCPs), and correlated these patterns with clinical and pathological features. In all, they detected clonal TCR-GR products in biopsies from 67% of patients with RCDII, 17% of patients with RCDI and 6% of patients with gluten-free diet. They found PCPs in all disease phases, but saw no significant difference in the TCR-GR patterns between the non-RCDII disease categories (p=0.39). 
    They also noted a higher frequency of surface CD3(−) IELs in cases with clonal TCR-GR, but the PCP pattern showed no associations with any clinical or pathological feature. 
    Repeat biopsy showed that the clonal or PCP pattern persisted for up to 2 years with no evidence of RCDII. The study indicates that better understanding of clonal T cell receptor gene rearrangements may help researchers improve refractory celiac diagnosis. 
    Source:
    Journal of Clinical Pathologyhttp://dx.doi.org/10.1136/jclinpath-2018-205023

    Jefferson Adams
    Celiac.com 06/13/2018 - There have been numerous reports that olmesartan, aka Benicar, seems to trigger sprue‐like enteropathy in many patients, but so far, studies have produced mixed results, and there really hasn’t been a rigorous study of the issue. A team of researchers recently set out to assess whether olmesartan is associated with a higher rate of enteropathy compared with other angiotensin II receptor blockers (ARBs).
    The research team included Y.‐H. Dong; Y. Jin; TN Tsacogianis; M He; PH Hsieh; and JJ Gagne. They are variously affiliated with the Division of Pharmacoepidemiology and Pharmacoeconomics, Department of Medicine, Brigham and Women's Hospital and Harvard Medical School in Boston, MA, USA; the Faculty of Pharmacy, School of Pharmaceutical Science at National Yang‐Ming University in Taipei, Taiwan; and the Department of Hepato‐Gastroenterology, Chi Mei Medical Center in Tainan, Taiwan.
    To get solid data on the issue, the team conducted a cohort study among ARB initiators in 5 US claims databases covering numerous health insurers. They used Cox regression models to estimate hazard ratios (HRs) and 95% confidence intervals (CIs) for enteropathy‐related outcomes, including celiac disease, malabsorption, concomitant diagnoses of diarrhea and weight loss, and non‐infectious enteropathy. In all, they found nearly two million eligible patients. 
    They then assessed those patients and compared the results for olmesartan initiators to initiators of other ARBs after propensity score (PS) matching. They found unadjusted incidence rates of 0.82, 1.41, 1.66 and 29.20 per 1,000 person‐years for celiac disease, malabsorption, concomitant diagnoses of diarrhea and weight loss, and non‐infectious enteropathy respectively. 
    After PS matching comparing olmesartan to other ARBs, hazard ratios were 1.21 (95% CI, 1.05‐1.40), 1.00 (95% CI, 0.88‐1.13), 1.22 (95% CI, 1.10‐1.36) and 1.04 (95% CI, 1.01‐1.07) for each outcome. Patients aged 65 years and older showed greater hazard ratios for celiac disease, as did patients receiving treatment for more than 1 year, and patients receiving higher cumulative olmesartan doses.
    This is the first comprehensive multi‐database study to document a higher rate of enteropathy in olmesartan initiators as compared to initiators of other ARBs, though absolute rates were low for both groups.
    Source:
    Alimentary Pharmacology & Therapeutics