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    The Gluten Intolerance Group of North America on Iodine and Dermatitis Herpetiformis


    Scott Adams

    The the connection between iodine and Dermatitis Herpetiformis is briefly described by the following excerpt from a resource guide of the Gluten Intolerance Group of North America:

    • Iodine can trigger eruptions in some people (with dermatitis herpetiformis). However, iodine is a essential nutrient and should not be removed from the diet without a physicians supervision.
    • Iodine does not contain gluten. Iodine can worsen the symptoms of skin lesions in patients with dermatitis herpetiformis.
    • When the deposits of IgA have been cleared from the skin over time by following a gluten free diet, iodine should no longer present any problem for dermatitis herpetiformis patients.


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    As background, for those who are not familiar with Dermatitis Herpetiformis, the following description comes from a resource guide of the Gluten Intolerance Group of North America:

    • Dermatitis herpetiformis (dermatitis herpetiformis) is a chronic disease of the skin marked by groups of watery, itch blisters. The ingestion of gluten (the proteins gliadin and prolamines contained in wheat, rye, oats, and barley) triggers an immune system response that deposits a substance, IgA (immonuglobin A), under the top layer of skin. IgA is present in affected as well as unaffected skin. dermatitis herpetiformis is a hereditary autoimmune disease linked with celiac disease. If you have dermatitis herpetiformis, you always have celiac disease. With dermatitis herpetiformis the primary lesion is on the skin rather than the small intestine. The degree of damage to the small intestine is often less severe or more patchy then those with only celiac disease. Both diseases are permanent and symptoms/ damage will occur after comsuming gluten.

    When my husband was diagnosed with dermatitis herpetiformis last November, he went to visit a expert in dermatitis herpetiformis, Dr. John J. Zone, at the University of Utah (USA). The written instructions Dr. Zone gave him included the following statement:

    • The mineral iodine is known to make the disease (dermatitis herpetiformis) worse. For this reason, foods and supplements high in iodine should be avoided. Table salt which is not iodized should be used. This can be found in most grocery stores with the other salts. Avoid kelp and other seaweed products, and do not use sea salt. If you take any nutritional supplements, examine them carefully to avoid any iodine containing ingredients.

    It is not necessary for dermatitis herpetiformis patients to eliminate iodine completely from their diet, merely to avoid foods high in iodine as described above. Dr. Zone also explained that dermatitis herpetiformis patients need not avoid iodine indefinitely. Iodine is an important mineral for our bodies. dermatitis herpetiformis patients can stop avoiding iodine when their rash symptoms clear up which can take anywhere from a few months to a couple of years on a gluten-free diet.

    More about iodine:

    • Intake of large amounts of inorgana iodide is known to exacerbate symptoms and a few patients have been reported to improve on low iodide diets. However, this is not a mainstay of treatment and need only be considered if patients are consuming excessive iodide in the form of vitamin pills, kelp, or seafood. Likewise, some patients have reported exacerbation with thyroid hormone replacement therapy and thyrotoxicosis. In such cases, excessive thyroid replacement should be avoided and thyrotoxicosis treated appropriately.
    • Dermatitis Herpetiformis, John J. Zone MD, Curr Probl Dermatol, Jan/Feb 1991, p36
    • Dermatitis Herpetiformis is considered a rare skin disease.
    • The true incidence and prevalence of dermatitis herpetiformis appears to vary in different areas of the world and may vary within the same country. During 1987, 158 cases of documented dermatitis herpetiformis were identified in the state of Utah out of a population of 1.6 million, a prevalence of 9.8 per 100,000.
    • Dermatitis Herpetiformis, John J. Zone MD, Curr Probl Dermatol, Jan/Feb 1991, p15

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    Guest maria edh

    Posted

    Having been recently diagnosed. I was unaware about Iodine's role, which makes me believe that staying away from shell fish (for 20 years) has played some role in this illness. Thank you

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    An eye opener, no one ever told me about this link. I have used sea salt since diagnosis, found I have an intolerance to all seaweed products, and now I'm wondering if this is why I can't get my dermatitis to clear up. Thanks for starting this thought process!!

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    Guest Rebecca Johnson

    Posted

    I never heard about iodine before and now I will talk to my doctor about it. Thanks !!!

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    Guest Laura H.

    Posted

    I made the connection between my Dermatitis Herpetiformis and iodine 16 years ago and was able to clear up the blisters by avoiding sources of iodine. However, even after I found out I had celiac five years ago, I didn't connect the blister outbreaks to celiac until I read Dr. Green's book. When he stated that iodine was the trigger, I almost jumped out of my chair. Now everything was clear-- celiac was actually the cause, while iodine was merely the trigger. Unfortunately, because I avoided iodine for 16 years, my thyroid essentially 'died' last year, and since all thyroid meds contain iodine, I break out in blisters at the slightest gluten contamination. My back is also covered with an itchy rash, my throat is sore, and my thyroid is inflamed. My doctors seem at a loss at treating this sensitivity to iodine. So, I would like to reiterate Dr. Green's advice to not completely avoid iodine--your thyroid needs it to be healthy.

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    Guest Ursula

    Posted

    Thank you for this insightful information. I have always found that my eczema gets worse when I eat prawns and now I know why. I will definitely be on the look-out for foods high in iodine in the future so as to avoid them.

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    Guest Carol Z.

    Posted

    Really helpful. Since so many of us have thyroid problems too and must take supplements, this is a big issue. There is not much clear information out there and doctors don't seem so well informed.

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    Guest Julie M.

    Posted

    My son Andrew is 15 years old now, he was diagnosis with Dermatitis Herpetaformis at 8, has been rash-free for 5 years by being on a Gluten Free diet continuously and Iodine free diet for approximately 6 months after his initial diagnosis). He has recently relapsed, I believe he has been eating more fast foods, going through puberty, and has been in the ocean 3-4 times a week for several months now possibly absorbing iodine through his skin. I am unsure if puberty and the absorption through the skin can trigger Dermatitis Herpetaformis. He is looking and feeling terrible, so frustrating for him and me as a mother.

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    Guest Michelle E

    Posted

    At 33 years old I finally got diagnosed with celiac this year with a simple blood test (after 3 years of gut pain). To make up for my lack of vitamins - I was taking a fantastic, all inclusive vitamin religiously in addition to a gluten free diet. My gut was great, but I got wicked cases of 'poison ivy' 3 times in one summer - a record even for me. THANK YOU for this article. I switched off the vitamin, which was high in iodine and haven't had a major outbreak since. I did get a prescription for Fluocinonide .05% a topical steroid that helped before I knew to cut back on iodine. Now it seems that I can usually just cut back on shrimp intake (had a flare up on vacation when eating lots of shrimp) and that stops the rash from spreading and turning into the big bumps.

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    Usually going in the ocean soothes skin rashes. Does anyone know if it's bad for a person with Dermatitis Herpetiformis to go into the ocean?

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    Guest Katey

    Posted

    Thank you! I recently started taking kelp, and the watery blisters I got from gluten intolerance multiplied and became worse. I had no idea about the relationship between the two until now.

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    Guest Anna Mae Schroeder

    Posted

    Very informative, thank you very much for this. Research keeps bringing us new information.

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    Guest Jeannie

    Posted

    Usually going in the ocean soothes skin rashes. Does anyone know if it's bad for a person with Dermatitis Herpetiformis to go into the ocean?

    Live in Hawaii and our ocean is like a medicine for lots of ailments. BUT, nowadays, if you have an open cut, it's advised not to go into the ocean. There are "new unknown" bacteria or particles in the ocean more than ever. Your little cut can become infected so quickly. In my days, it was good to go into the waters and have nature's ocean clean the cut and heal it.

    I'd say, with an inflamed case of dermatitis herpetiformis, don't go in the waters. When my son's skin looks better I'll take him to the beach. He'll even tell me when his skin feels better.

     

    My 7 year old son just got diagnosed with dermatitis herpetiformis. With the help of a new dermatologist, my son's mystery skin has a name. Our doctor was so nice to explain to me about dermatitis herpetiformis and its nickname "suicidal itch".

     

    After 5 years of 3 dermatologists, 1 allergist, and pediatricians all saying that he just has an extreme eczema or dyshidrosis or some severe mystery skin. Though I had pictures of his "angry skin", no one went outside the "box" of eczema. I knew something was different. Every one would tell me that they knew what we were going through, Yet none of them could understand or relate to me and my son when I told them that there has been lots of staph infections and ER nights and just no sleeping.

    Even my son's school staff has been challenging.

     

    Sorry, just so happy with this new world of dermatitis herpetiformis and trying to go gluten-free 100% (or as much as possible) yet a little perturbed with professionals that are closed minded to "outside of the box" learning something new.

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    Guest Darren

    Posted

    Did I read that right? If you have dermatitis herpetiformis you have celiac. I made the mistake of going off gluten prior to testing, and all my tests with the exception of the "visual" results from my endoscopy, were all negative. I had this rash last year when I went to mayo clinic and they said they had no idea what it was and gave me hydro cream. Well it came back again and is still there now. Thank you for the information on iodine. I had been snacking on cashews with salt but have stopped thinking they may have been exposed to gluten. My rash isn't as red now. Eating gluten made it itch like the devil. And when the blisters open up they sting like mad. I have so many of these symptoms but nothing indicates it in my tests. The doctor who did the endoscopy came in afterward and said it "looked" like celiac but the labs said otherwise. Any ideas what I should do next. Eating gluten causes cramps, bloating, and severe diarrhea and back pain within hours.

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    Guest Joe Eustis

    Posted

    I have celiac (no tummy issues) and DH and started the gluten free diet 18 months. I have made no progress in clearing up the rash / itch. Have been on iodine free salt and vitamins at home with no help. Six months ago I started levothyroxine for newly diagnosed Hashimotos and noticed itch slowly got worse. Stopped for a while, seemed to get better, then took Armour and it flared up. I stopped Armour and started a very low iodine diet - bought only no salt or low sodium packaged items from grocery (canned, boxed, frozen). It made a big difference so far. Culprit seems to be all the iodized salt in the processed foods we all buy. Never the less I have an appointment to see Dr. John Zone (expert) at Salt Lake City University Hospital next month to understand / get help on the "iodine connection. It will be a long trip from New Orleans, but worth it to get real answers.

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    Guest Joe Eustis

    Posted

    Follow up - upon reviewing the foods I recently eliminated in going on a low iodine diet (which makes a big difference) I think the dairy products, i.e., milk, cheese, and in particular Weight Watchers fudge bars and Wendy's Frosties which have carregeenen - an iodine rich food thickener could be the smoking gun.

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    Guest Kara Larocco

    Posted

    I am hypothyroid. I do take kelp too. I got my thyroid levels correct first and then I did a few iodine patch tests to see if it picked up a deficiency. It showed I was deficient, so I started the kelp. Many people do fine with a little bit of iodine, then there are others that don't. I started out by taking powdered kelp, but the problem with powdered kelp is that there are no dosages. Plus, iodine deficiency is a symptom, not a cause. There are other, more pressing headaches associated with hypothyroidism. Metabolism, for starters, which can play hell with your immune system, and also your mental health. If you look at a nurses' guide, you'll see that thyroid issues can lead to some chemical difficulties in brain/body day-to-day functioning.

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    Guest Julie

    Posted

    Thank you for this article, it has pretty much changed my life. I have been dealing with intermittent flare-ups of this type of dermatitis for the past year having no idea what was causing it or how to address it. Having been diagnosed with extreme gluten intolerance within the past two weeks with IgA readings off the charts (and incidentally, plenty of iodine in my diet), it all makes sense now. I found this article after eating some kelp and having the worst flare-up ever immediately after. Now that I've finally identified the correlation, I believe I will finally be able to beat this by avoiding iodine rich foods and switching to a strict gluten-free diet. Thanks again!

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    Thank you so much for this information. My inability to clear up the DH rash for over 3 years on a gluten free diet has been so frustrating. One question I have never seen answered is whether there is a treatment or topical product which will calm the intense inching? Any information on palliative treatment would certainly be very welcome.

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    Guest Linda Cabaniss

    Posted

    Thank you so much for this information. My inability to clear up the DH rash for over 3 years on a gluten free diet has been so frustrating. One question I have never seen answered is whether there is a treatment or topical product which will calm the intense inching? Any information on palliative treatment would certainly be very welcome.

    I have had success with cold pressed/processed castor oil soaked bandages along with applied heat at bedtime. This usually clears up the DH within a week. This is an old Edgar Cayce remedy for many ailments including internal

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    Thank you for this information.

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    I was wondering why my skin gets those hives when I eat salty food and this link explains it. Thank you for sharing this.

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    Guest Brenda

    Posted

    I am just now self-diagnosing (no health insurance) my 30 year intestinal problem and associating gluten to it all... But I have a suspicion that MSG in most the foods I eat in Asia (every 4 months of the year) are the trigger to the miserable DH skin rash that occurs while in warm tropical areas, eating Asian food plus added nervous system problems (ie: stress). I rarely have DH in the states. If anyone has similar thoughts, please share. Thank you all for your comments!

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    Guest Tammy Price

    Posted

    Thank you so much for this information. My inability to clear up the DH rash for over 3 years on a gluten free diet has been so frustrating. One question I have never seen answered is whether there is a treatment or topical product which will calm the intense inching? Any information on palliative treatment would certainly be very welcome.

    I have found that the only thing that comes close to helping the rash is thayers alcohol witch hazel (with cucumber/ rose water) to clean and calm the burn... Let it dry... Then i put some white pine salve on it. I order the salve on line from some nice herbal lady. But i have found it at some health food stores. Wise ways herbals. It helps cut the time in half. And helps it a lot in general.

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    Guest Tammy Price

    Posted

    Sad... I just flared up a week ago... Just a little. It is just calming some and I think I just ate some sea noodles with some iodine. Eeek! I had about 9 noodles.

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    Guest Angela

    Posted

    I was diagnosed with celiac disease 4 years ago after being really sick for about 6 years. I have DH as well. It was tons of fun trying to figure out what that was. I have had it under control, but occasionally I will have an outbreak. Potato chips seem to be a big culprit. I found that benedryl at night helps the itching and with sleeping. It seems to lessen the length of the outbreak. Also, watch ALL hair products. I was losing handfuls a day until I looked at my mousse. Hydrolized wheat protein was one of the first ingredients.

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    In 1994 I was diagnosed with celiac disease, which led me to create Celiac.com in 1995. I created this site for a single purpose: To help as many people as possible with celiac disease get diagnosed so they can begin to live happy, healthy gluten-free lives. Celiac.com was the first site on the Internet dedicated solely to celiac disease. In 1998 I founded The Gluten-Free Mall, Your Special Diet Superstore!, and I am the co-author of the book Cereal Killers, and founder and publisher of Journal of Gluten Sensitivity.

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    Jefferson Adams
    Celiac.com 06/18/2018 - Celiac disease has been mainly associated with Caucasian populations in Northern Europe, and their descendants in other countries, but new scientific evidence is beginning to challenge that view. Still, the exact global prevalence of celiac disease remains unknown.  To get better data on that issue, a team of researchers recently conducted a comprehensive review and meta-analysis to get a reasonably accurate estimate the global prevalence of celiac disease. 
    The research team included P Singh, A Arora, TA Strand, DA Leffler, C Catassi, PH Green, CP Kelly, V Ahuja, and GK Makharia. They are variously affiliated with the Division of Gastroenterology and Hepatology, Beth Israel Deaconess Medical Center, Boston, Massachusetts; Lady Hardinge Medical College, New Delhi, India; Innlandet Hospital Trust, Lillehammer, Norway; Centre for International Health, University of Bergen, Bergen, Norway; Division of Gastroenterology and Hepatology, Beth Israel Deaconess Medical Center, Boston, Massachusetts; Gastroenterology Research and Development, Takeda Pharmaceuticals Inc, Cambridge, MA; Department of Pediatrics, Università Politecnica delle Marche, Ancona, Italy; Department of Medicine, Columbia University Medical Center, New York, New York; USA Celiac Disease Center, Columbia University Medical Center, New York, New York; and the Department of Gastroenterology and Human Nutrition, All India Institute of Medical Sciences, New Delhi, India.
    For their review, the team searched Medline, PubMed, and EMBASE for the keywords ‘celiac disease,’ ‘celiac,’ ‘tissue transglutaminase antibody,’ ‘anti-endomysium antibody,’ ‘endomysial antibody,’ and ‘prevalence’ for studies published from January 1991 through March 2016. 
    The team cross-referenced each article with the words ‘Asia,’ ‘Europe,’ ‘Africa,’ ‘South America,’ ‘North America,’ and ‘Australia.’ They defined celiac diagnosis based on European Society of Pediatric Gastroenterology, Hepatology, and Nutrition guidelines. The team used 96 articles of 3,843 articles in their final analysis.
    Overall global prevalence of celiac disease was 1.4% in 275,818 individuals, based on positive blood tests for anti-tissue transglutaminase and/or anti-endomysial antibodies. The pooled global prevalence of biopsy-confirmed celiac disease was 0.7% in 138,792 individuals. That means that numerous people with celiac disease potentially remain undiagnosed.
    Rates of celiac disease were 0.4% in South America, 0.5% in Africa and North America, 0.6% in Asia, and 0.8% in Europe and Oceania; the prevalence was 0.6% in female vs 0.4% males. Celiac disease was significantly more common in children than adults.
    This systematic review and meta-analysis showed celiac disease to be reported worldwide. Blood test data shows celiac disease rate of 1.4%, while biopsy data shows 0.7%. The prevalence of celiac disease varies with sex, age, and location. 
    This review demonstrates a need for more comprehensive population-based studies of celiac disease in numerous countries.  The 1.4% rate indicates that there are 91.2 million people worldwide with celiac disease, and 3.9 million are in the U.S.A.
    Source:
    Clin Gastroenterol Hepatol. 2018 Jun;16(6):823-836.e2. doi: 10.1016/j.cgh.2017.06.037.