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      Frequently Asked Questions About Celiac Disease   04/07/2018

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes
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    LIVING WITH DERMATITIS HERPETIFORMIS


    Jean Duane


    • Journal of Gluten Sensitivity Summer 2014 Issue


    Celiac.com 09/13/2016 - Six times from 2003 – 2005, I had a mysterious full-bodied, itchy, blistery rash that landed me in the emergency room the first time, where seven doctors shook their heads. The ER physicians agreed that it was a "systemic chemical reaction" and tried to identify what I could have been exposed to. A dairy allergy was ruled out immediately since I have been completely dairy-free for twenty years. For the next three years, between hiding from the world for the ten days of intense itching and for the six weeks it took my skin to heal after an outbreak, I saw numerous dermatologists, internists, gastroenterologists, allergists and chiropractors. No one could figure out what was causing this miserable rash.


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    I finally met the "best diagnostician" according to Denver's 5280 Magazine who told me he would figure out what was causing my plight, but that it wouldn't be fun. At that point, I was willing to take any test to identify what my enemy was. I endured ninety-eight needle sticks (who's counting?) eight skin biopsies, invasive scopes and tests for allergies, rheumatoid arthritis, diabetes, thyroid disease and a host of other procedures. The skin biopsies erroneously concluded that I had scabies. Scabies are biting mites that leave bumps on the skin. It couldn't have been mites, because my husband, who lives in the same environment, didn't have a bump on his body.

    There was only one test that I did not pass – elevated levels of IgG antibodies in my blood. My doctor suggested that the rash could be correlated with gluten consumption and recommended that I try a gluten free diet. After being vigilant for several months, five out of seven long-term chronic complaints, including the rash, gradually went away.

    Here's my understanding of the DH lifecycle. An intestine that cannot break down the protein gluten leaks it out of the intestine and into the bloodstream. The blood sees this as a foreign protein and over-produces the immunoglobulin G to attack it. The antibodies build up, and purge out through the skin causing the rash. Completely avoiding gluten eliminates the antibody buildup, and the rash. One clue that might have streamlined my diagnosis is the knowledge that the DH rash is symmetrical. If it appears on one elbow, it will appear on the other, etc. In my case, it appeared on both sides of my entire body from the neck down.

    Please understand, I am not a doctor and the following is not to be considered medical advice. I am sharing this to pass along a few things I've learned from personal experience, research and lectures on the subject with the hope of helping others who suffer from a chronic, pervasive, itchy rash.

    Initial Testing
    Since I had the eight skin biopsies, I've learned that immunofluroescent biopsies should have been taken of the healthy skin near the rash rather than of the actual bumps. I was never given this test.

    After all those tests, the elevated IgG was the only indication that gluten is the culprit. I endured what was considered the "gold standard" for diagnosing celiac disease, the upper GI scoping, and my gastroenterologist did not find any damage. I have since learned that the upper GI scoping is no longer thought to be the "gold standard" diagnostic process by many celiac experts because it is too random. If the doctor doesn't biopsy the intestines in exactly the right place, you may be deemed to be celiac-free when you actually have considerable intestinal damage several inches away from the biopsy site. Furthermore, people with DH may or may not experience damage to their small intestine. A study done in 2010 found that 67 percent of the time people with DH only have elevated IgG-TGA levels (1).

    My doctor divulged that there simply are not yet 100 percent conclusive tests for celiac disease. He said that the best way to be sure of the diagnosis is to observe that the chronic symptoms disappear over time by vigilantly following a gluten free diet.

    Residual Rashes
    Residual rashes can reappear for up to five years even though the person is following a gluten free diet. The accumulated antibodies purge in a histamine response (the rash) periodically through the skin. Horrible as an outbreak is, the rash is actually how the body cleanses itself of the antibodies. The good news is, rashes diminish in time with strict adherence to a gluten free diet.

    Ongoing Testing
    I've learned that the best way to monitor the healing process is to have the IgG antibodies tested once a year until they are in the normal range. The number should decline each year, which implies compliance to the gluten free diet and that residual rashes will diminish. Mine took several years to finally reach the normal range. Having IgGs in the normal range does not mean that I can ever go back to eating gluten. DH is a life-long condition controlled by a gluten-free, and often, a dairy-free diet. Some studies talk about a spontaneous remission. This is very rare.

    Other Triggers
    People who have a propensity to develop rashes need to be aware of other triggers.

    1. Iodine triggers the rash in people with DH. Seaweed, shellfish, especially shrimp and lobster should be avoided. Sushi wrapped in Nori seaweed has caused me to have an outbreak before. Watch out for thyroid medicine and water filters because both can contain iodine.
    2. Sunburns can cause rashes. If your skin is sensitive enough to get a rash, chances are, sun will irritate it and could trigger an outbreak. Stay in the shade, wear translucent zinc oxide sunscreen and avoid too much exposure.
    3. An overgrowth of Candida (yeast) can cause an outbreak. Candida is naturally present in the body. To avert an overgrowth, eliminate simple sugars from the diet. According to a study done at Rice University, 70 percent of the population have an overgrowth of Candida somewhere in their body(2) due to over-exposure to antibiotics, steroids and hormones.
    4. Women who are "estrogen dominant" may not be producing progesterone. This can happen during perimenopause and in menopause. According to the book What Your Doctor May Not Tell You About Menopause by John R. Lee and Virginia Hawkins(3), estrogen dominance causes autoimmune and histamine reactions in some people. This could be the reason that women who have eaten gluten for years without symptoms are suddenly are plagued when they are in their 40's or 50's.
    5. Pharmaceuticals can trigger rashes in people with DH. If there is a choice of two drugs and one says a side effect may be a rash, and a similar drug doesn't, opt for the one that doesn't say "rash" for a side effect.
    6. Inadvertent gluten consumption can also cause the rash. Gluten is in nearly every processed food, and in many cosmetics and drugs. Some mushrooms are even grown on gluten! Transglutaminase enzymes are used to revive aging fish and meats – to extend their shelf life and to make them look appetizing. Grocers do not have to declare that they add these enzymes because they are naturally occurring in the human body. Dr. Peter Green mentioned at a Gluten Intolerance Group conference that people with celiac disease develop antibodies to tissue transglutaminase, and that the addition of those enzymes may be causing people who are already sensitive to get sicker. The point is that even foods that are supposedly gluten free can contain small amounts of it. To be safe, test products with ELISA test strips. ELISA test strips are available at http://www.elisa-tek.com/ez-gluten/. Since these strips are so expensive, this is also a website for everyone who uses them to post their results. I have learned a lot by reading this forum.

    Day-to-Day Life
    The longer I have been gluten free, the less tolerant my body has become. I've heard this anecdotally from others following the gluten-free diet. My DH is so severe, I react to even the most minor infractions. It makes eating out very difficult because cross-contamination is common and waiters are not always aware. I have a little test for waiters to decide whether to trust them to bring me a ‘safe' meal. I order a club soda with lemon before I order food. If the soda comes with lime, I know this waiter is not listening, and will be more likely to bring me something that could contain gluten. In restaurants that flunk my club soda test, I play it safe and order salad, a fruit plate or steamed vegetables.

    I've been to restaurants that tout a gluten free menu, only to be presented with a laminated disclaimer saying they are not liable for cross-contamination or inadvertent gluten after I order. How can anyone enjoy a meal with that kind of disclaimer? Not to mention the disruption of the conversation with your meal-mate when presented with a disclaimer card. It can be a little embarrassing!

    The most frustrating aspect of living with this is when accidental infractions occur. In November 2011, I wasn't feeling very well, so I took an aspirin and went to bed. Ten days later, the rash started appearing. It was a very bad rash, and I had to wear gloves to cover my hands that had doubled in size. I could not figure out what I had consumed that had gluten in it. My home is gluten free! I thought perhaps a product that I habitually used changed ingredients, so I read all the ingredients of everything in my house. Using the ELISA test strips, I tested 44 different products – foods, pharmaceuticals, over-the-counter drugs, cosmetics – everything that came in contact with my skin, or that I ate. Nothing I tested contained gluten. Then I remembered taking the aspirin. I tested it, and it contained gluten! I read the ingredients, the label said "Inactive ingredient: starch." It did not say what kind of starch. This happens in binders in pharmaceuticals too. The ingredients of pharmaceuticals will say "starch #3," and further investigation reveals this can alternate between wheat, tapioca, corn or potato. This means every time a prescription is refilled, it must be tested to be sure that particular batch wasn't made with wheat starch.

    I was in a car wreck and had to be taken to the emergency room. My sternum was broken, and I needed pain medication. The nurse offered me a pill and I asked if they would please make sure that it was gluten free. The nurse said, "pharmaceuticals are gluten free." (I've had pharmacists tell me this too – but as mentioned above, it is not true!) I said, "The reaction I get from consuming gluten is worse than the pain of this broken bone. Would you mind checking?" The nurse came back 30 minutes later and told me the pill did, indeed contain gluten. I went home in the middle of the night without any pain medication. I found a website the next morning that lists all gluten free pharmaceuticals, and asked my doctor to call in the specific brand of pain medication. The website is http://www.glutenfreedrugs.com. I have learned to keep a bottle on hand at home, and when I travel in case something like that ever happens again.

    I really wanted to eat the gluten free oats, so in 2009, I decided to go completely grain free for three months to cleanse myself for the "oat challenge." Then I made some oatmeal cookies with the gluten free oats. I took one bite, and waited ten days. Sure enough, the rash appeared on my legs. Through this experiment, I learned that I am not tolerant of even some "gluten free" foods.

    Through my studies of alternative diets and trying to discover the optimal way to eat to improve health, I have learned that a diet centered on eating vegetables, fruits, beans and some nuts and seeds improve the autoimmune system. Once the immune system is restored, (after strict adherence for several years), I've been told that it may be possible to undergo gluten desensitization under doctor's supervision. Locating a credible doctor to do this may be tricky, and deliberately exposing myself to gluten would take a lot of courage. However, I am considering this down the road with the hope that if I am inadvertently exposed to tiny amounts of gluten, I won't suffer through another rash.

    Since my reaction is so severe, I asked my doctor to write an undated letter on his letterhead "To Whom It May Concern" that states my reaction to gluten. I take this with me whenever I travel, just in case I was ever hospitalized, I could show the staff a letter from a bona fide medical doctor stating the severity of my situation. Without a letter, I am not sure if anyone would adhere to the strict gluten free guidelines I need to follow.

    Rash Remedies
    In those dismal three years before I was diagnosed, I was given mega doses of steroids, antibiotics, antihistamines, countless prescription creams, gels, histamine blocks, anti-viral drugs, anti-fungals and offered Dapsone. Since it took years to diagnose, well-meaning doctors offered a smattering of drugs to see what might work.

    Most of the drugs listed above were not the right medicine for DH. Steroids proved ineffective. Antivirals and antifungals did not work either. Dapsone is commonly given to people with DH who are not able to adhere to a gluten free diet. It is a strong drug originally given to lepers and has severe side effects. I'd rather live the gluten free lifestyle than take Dapsone.

    Once diagnosed, the two drugs that worked for me to ease symptoms for outbreaks were Zantac and liquid Hydroxizine. I am told that Zantac is a histamine block. It helped to reduce the number of itching days from ten to eight. I was also told to take it as precaution, if I felt I had inadvertently eaten gluten to thwart off an outbreak. I took the liquid hydroxizine around 4:00 o'clock in the afternoon when the histamines are highest, to ease the itching through the night. An un-exotic over-the-counter remedy that works is the clear calamine lotion from Walgreen's. There were days that I dreamed of taking a bath in that wonderful stuff!

    Another remedy recommended by a DH friend is a product made by Bayer called Domeboro Astringent Solution. It is a powder that is mixed with water and applied with a cloth to the affected area. It is said to give relief from the itching for several hours.

    Fluocinonide gel .05 percent is another remedy I have heard helps with the extreme itching. Fortunately, I have not had an outbreak since I learned about this remedy.

    Ever Onward
    Though my doctor recommended the gluten free diet, he didn't tell me how to do it, and I found there was a lot to learn! Luckily, during that time in the midst of outbreaks, I was attending cooking school. The school was not gluten free, but I took all of the methods and lessons home and converted everything I learned to be allergy free. The diagnosis and certification from the school launched me on an epicurean adventure and changed the course of my life. I started the Alternative Cook to help others who want to eat safe, delicious foods.

    If you are suffering with an incredibly itchy, pervasive rash, or know someone who is, consider that gluten could be the offender. Celiac disease is much more prevalent in this country than once thought. If you need moral support with DH, I'd love to hear from you.

    Sources:

    1. Dahlbom, Ingrid, Korponay-Szabo, Ilma R, Kovacs, Judit B, Szalai, Zsuzsana, Maki, Markku, Hansson, Tony. "Prediction of Clinical and Mucosal Severity of Coeliac Disease and Dermatitis Herpetiformus by Quantification of IgA/IgG Serum Antibodies to Tissue Transglutaminase." Journal of Pediatric Gastroenterology and Nutrition. Vol. 50(2), February 2010, P 140-146.
    2. "Biologists ID Defense Mechanism of Leading Fungal Pathogen. Psych Central. June 25, 2004. http://psychcentral.com/news/archives/2004-06/ru-bid062504.html.
    3. Lee, John R., Hawkins, Virginia. What Your Doctor May Not Tell You About Menopause. Mass Market Paperback. September, 2004.


    Image Caption: Image: CC--Practical Cures
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    Guest Tina Yarnell

    Posted

    Well written article with lots of useful information. I have had celiac disease for 12 years and suffered the steep learning curve of the gluten free diet when a great deal less was published and known about it. In fact many of the things I initially learned have now been proven incorrect. in fact when I was first diagnosed I was sent to a nutritionist, in the two weeks it took to get an appointment I had learned a little bit from the internet but it was far more than the little the nutritionist had learned in her schooling. She apologized and admitted that my appointment was a big waist of time, that she didn't have anything to teach me or that would help me any further and sent me on my way without charging me for her time. All that to say that thankfully I have not suffered the slings and arrows that those with DH have in battling rashes, my heart goes out to all that do. In reading your article I have learned a great deal about what it is like to for someone with DH to deal with on a daily basis and I have even learned some new information about my own disease. THANK YOU VERY MUCH!!! For writing an article that did not waist my time in reading it and for providing useful information for users of this site to put into practice.

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    This really is an excellent article and contains lots of info that I have found to be true. In my case I have only had one outbreak of DH and that was one too many! I found that the intense itching was reduced by vinegar, (wine not malt vinegar), I would dab it on with cottonwool repeatedly and though there was a stinging sensation it greatly reduced the itching, creams prescribed by my doctor were somewhat useful but not as good. Also soothing was aloe vera gel as this also has a cooling effect.

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    Guest Jacqueline Cahelo

    Posted

    Very good article although my experiences are a little different. I discovered I had celiac disease (and DH) when I broke out in a rash that I went to my primary care physician for. I had a history of IBS and thought it was just acting up and causing my stomach issues. He immediately had me tested for celiac with a blood test (later confirmed w/an endoscopy). A friend suggested I detox-- and I got a detox tea from the local Earth Fare. Big mistake- I broke out everywhere practically

    and was an itching blistered mess (head and eyes as well- both sides just like the article). The calamine lotion did not help me- but aloe gel did.. I have kept it under control with a gluten-free diet ever since. I am on 2 thyroid meds and they do not affect my DH. Anyway my "early warning system" if I have accidentally ingest gluten is within 1/2 to 1 hour I start itching. I grab the Zantac and an antihistamine like Allegra, or Zyrtec and it calms it down until I get the gluten out of my system (the stomach affects usually take 12 hours to appear) If I don't get the Zantac and antihistamine within the first hour, then the bumps appear. Other than that I have a much easier time than in the article.

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    I have had DH for about 5 years and I broke out like crazy the first time. I went to my dermatologist and he put me on dapsone, and I have not had but one small breakout in five years. I have had no side effects except it did make me a little anemic according to one of my blood test, that I only have to Take every six months now. If anyone has any additional information or severe side effects from dapsone please let me know. I can basically eat anything I want as long as I am on dapsone. I still try to eat mostly gluten free except I do cheat every once in a while. This was a fantastic article and I do appreciate the advice.

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    Great article and lots of familiar experiences with the rash & itch. It´s terrible. I was diagnosed two years ago (Sep 2014) subsequent to having a surgery. My theory is that before surgery the hospitals follow a protocol of heavy doses of antibiotics to fight off the potential infection during and after surgery. The consequence is that the antibiotic kills off all the bugs - good and bad - leaving you susceptible to conditions like dermatitis herpetiformis. I have been treating the last 9 months at Mayo in Rochester, where I have gone through the Dapsone, creams, etc - all while being totally gluten free. I still have outbreaks of the miserable blisters & itching almost every day, even being on the restricted diet and taking the Dapsone. It has the doctors puzzled. Just this week we decided to drop the Dapsone, since it doesn´t seem to be doing anything - and it does have some very undesireable side-effects. I too have undergone the upper scope, without finding any conclusive damage to my small intestine. Just recently the blisters seem more like water blisters, but with the very painful consequence if scratched. I had heard about a natural medicine doctor that addressed these autoimmune problems a bit differently, but we don´t live close enough to treat with her. If anyone has a lead on such a healthcare provider, I would sure be interested. Again, thanks for your article.

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    Guest Bonnie

    Posted

    I really enjoyed your article and all the information provided.After a couple of years of a rash that  continued to spread, was finally diagnosed with DH. I have been gluten free since May 2017 but continue to have the rash and the itching is unbelievable.  I do take dapsone although I am not sure it helps that much.  My doctor tried a larger dose but I became extremely anemic.. The rash does seem to be less over time but I still have it on both legs, both arms.  As long as it continues to itch I am afraid it will never go away.  And as you know, it is not an itch that can be ignored. I am going to try your suggestion of zantac and liquid hydroxyzine. I will also try to continue to research this as much as i can because I would really like to find a way to get rid of the not only the rash but the itching. Thanks for listening.

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    This is a great article, with wonderful contributions following!  I was diagnosed with DH about 10 years ago, after having four insanely itchy, somewhat blistered rashes, each about 8-10 years apart, that got worse with each outbreak. The rashes are always symmetrical, cover my entire body and are so horribly itchy that I'm awake most of the night, scratching. The last time I broke out, I traced it back to something processed on equipment shared with wheat. I really wonder if that would have done the trick if it hadn't been Christmas Eve, and I wasn't eating unhealthy or drinking alcohol (I wonder if leaky gut perpetuates this for me sometimes). I have had some cross contamination (I think) in the past, but didn't break out, so I'm baffled. For me, the rashes last for months, and cover my entire body. Pure misery.

    Bonnie, I'm not sure if this will help you (or anyone else), but what has been my go - to is Doxepin. It is actually an antidepressant, but it is prescribed off label for rashes (a much smaller dosage than what is therapeutic for depression) and it gets it under control quickly, and I can gradually taper off. I take it with me when I travel, in case of an outbreak. 

    Good luck!

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    admin
    The following are links to sites have of dermatitis herpetiformis. Some of the photos are biopsies as seen through a microscope, and some are regular photographs of people with dermatitis herpetiformis, some of which are quite graphic. Pictures and an excellent article on dermatitis herpetiformis by Harold T. Pruessner, M.D., University of Texas Medical School at Houston:
    http://www.aafp.org/afp/980301ap/pruessn.html
    The University of Iowa:
    http://hardinmd.lib.uiowa.edu/dermnet/dermatitisherpetiformis.html
    Dermis.New Web Page:
    http://www.dermis.net/dermisroot/en/29366/diagnose.htm
    Medline:
    https://www.nlm.nih.gov/medlineplus/ency/article/001480.htm
    The Dermatitis Herpetiformis Online Community:
    http://www.dermatitisherpetiformis.org.uk/

    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.
    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


    Miranda Jade
    Celiac.com 04/25/2012 - In my experience growing up with undiagnosed celiac disease, I had to deal with several symptoms that my doctors had no answers for. One of the most frustrating of these was my skin troubles—dermatitis herpetiformis. After my experiences with misdiagnoses, and finally more recently, learning how to effectively get rid of dermatitis herpetiformis, I encourage parents to be particularly watchful for signs of dermatitis herpetiformis in their children, and I have some useful advice for those—children and adults—who have already been diagnosed with this annoying and sometimes quite troublesome rash. Since dermatitis herpetiformis occurs in 15 to 20% of celiacs, it’s worth any celiac’s time to learn more about this condition.
    By definition, dermatitis herpetiformis is a blistering and extremely itchy skin rash. It’s usually symmetrical in shape and is most commonly located on the elbows, knees, buttocks, and upper back. It’s common for people with dermatitis herpetiformis to have rashes appear in the same spot, and they can either be consistent or come and go. People can experience the rash on other parts of the body, and severity of symptoms can vary. Dermatitis herpetiformis is sometimes called the “gluten rash” or “celiac disease rash” because it occurs in people with a gluten intolerance or celiac disease. It is commonly misdiagnosed as eczema.
    Gluten is a protein found in wheat, barley, and rye. In people who have celiac disease, gluten causes an autoimmune response which results in the immune system attacking the lining of the small intestine—specifically the villi, the absorptive hair-like structures of the lining. With dermatitis herpetiformis, outbreaks are also triggered by gluten.
    Interestingly, unlike celiac disease which appears more in women than men, dermatitis herpetiformis is more commonly found in men by a ratio of about two-to-one. It is rarely seen in children under ten and first appears in the teenage years or even in one’s twenties or thirties. It may come and go, even if you’re eating a gluten-containing diet.
    Diagnosis is done with a skin biopsy. In most cases, a dermatitis herpetiformis diagnosis means celiac disease as well, even if you’re not obviously suffering from the characteristic intestinal symptoms of this disease. No matter what, the treatment is the same: a strict gluten-free diet.
    Dermatitis herpetiformis rashes are treated in two main ways--the gluten-free diet, of course, and antibiotics such as dapsone or sulfapyridine for those who aren’t able to tolerate dapsone. A truly gluten-free diet can eliminate dermatitis herpetiformis, but in my experience and according to the National Institutes of Health, a dermatitis herpetiformis rash responds dramatically to dapsone, within 48 to 72 hours. To treat the underlying cause of dermatitis herpetiformis, which is celiac disease, a strict gluten-free diet must be followed, but according to the National Institutes of Health, “Even with a gluten-free diet, dapsone or sulfapyridine therapy may need to be continued for 1–2 years to prevent further dermatitis herpetiformis outbreaks.”
    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.

    Dr. Rodney Ford M.D.
    Celiac.com 03/15/2016 - "Creating health comes down to the food we eat and how we choose to live our lives." – Dr. Terry Wahls
    Lots of people find it hard to believe that such a common food as wheat/gluten could possibly be implicated in causing skin diseases. They say something like this: "Everyone eats wheat, but not everyone gets skin troubles—so it can't be wheat!" This logic is flawed. I have written this book so that you can read all of the evidence about gluten-related skin disease in one place. "Cutaneous gluten sensitivity" is one of the new terms applied to the group of gluten-related skin diseases.
    Max belongs to this leg in the photo. He is very itchy and sore. He is 18-years old and not getting any better—in fact he has been getting worse. He came to me seeking help. Mum wrote,
    "Max has been suffering from debilitating dermatitis over his whole body for the last 3 years. He is withdrawn, self-conscious, covered with sores, and feels he will never get better. Unfortunately, the creams he is putting on just seem to irritate him."
    So, I am investigating him for gluten-related eczema. It will be a relief for him if the tests come out positive for gluten. What should be the strategy to get him better?
    I don't want him to go through the rest of his life like Elizabeth Whitesell, from the Gluten Zero Facebook page, who explains:
    "I was frantic with itching before my celiac diagnosis. The dermatologists never addressed the possibility of celiac, just gave me new treatments for my itching. I cannot name all of the creams, oils, pills and ointments I used, along with a blue-light treatment. Steroid shots, creams and pills were a major part of my treatment." "I received some temporary relief and never traveled without my creams. Itching on my hands was so fierce that I carried a frozen ice block (the kind used in coolers) in my purse. When we were at a public event, I gripped my hands around the ice to ward off a noisy itching attack. Ice was my godsend to keep the itching from following its neurological path. All of my blouses had blood dot stains from clawing my upper arms like I was an ape when into full-time mode." "My best treatment was freezing 2-liter bottles of water and holding them between my knees as I laid down to go to sleep. If I could fall asleep before the freaking stage began, I was on a roll. More frozen bottles were kept in a cooler by my bed for when the thaw came and I was too tired to walk downstairs to replace them." "What a saint of a husband I had. Once I went gluten-free, so many changes came for the better. I did not suddenly notice the absence of itching but, one day, looked back and realized I was not traveling and sleeping with frozen bottles anymore. I hope dermatologists are more informed now." Skin Diseases Associated with Celiac Disease
    Gluten is known to cause skin disease. Gluten can definitely cause itchy skin. Collectively, these skin-diseases provoked/triggered/caused by gluten can be called "cutaneous gluten sensitivity". This is an umbrella term which includes:
    Dermatitis Herpetiformis (DH); Celiac associated skin diseases; Non-celiac associated skin diseases. So what is the evidence?
    1) Dermatitis Herpetiformis: To summarise the previous chapter, the classic skin complaint is dermatitis herpetiformis. It usually affects the elbows, knees, buttocks, scalp, and back. It begins as little bumps that then change into little blisters. People say that they are driven mad by the itching. It is caused by an immune reaction to gluten in the skin. Microscopic clumps of immune-complexes get deposited just under the skin. This creates the very itchy rash. These tiny particles of immunoglobulins can take years to clear up once you start on a gluten-free diet. It is reported that it can take up to ten years before you make a full recovery.
    2) Celiac Associated Skin Diseases: Marzia Caproni and co-workers have detailed the skin diseases that have so far been associated with celiac disease (and perhaps by implication, with gluten).
    In their paper, "Celiac Disease and Dermatologic Manifestations: Many Skin Clues to Unfold Gluten-Sensitive Enteropathy" they include common skin complaints that most people do not associate with gluten-illness:
    Dermatitis Herpetiformis Psoriasis Alopecia Areata Chronic Urticaria Hereditary Angioneurotic Edema Cutaneous Vasculitis Atopic Dermatitis Eczema Vitiligo They also remind us that enamel defects, delayed eruption, recurrent aphthous ulcers, cheilitis, and atrophic glossitis are gluten-associate conditions and that "the diagnosis of celiac disease can sometimes be made from a smile!"
    Their important message is that anyone with any of these conditions should be investigated for celiac disease.
    3) Non-celiac Associated Skin Diseases
    The skin is a frequent target organ in gluten-sensitivity. The skin, hair and teeth can all be disturbed by gluten. However, eczema is a much more common manifestation of gluten-sensitivity.
    Humbert and his dermatology colleagues (Gluten intolerance and skin diseases, 2006) wrote this about gluten and skin disease:
    "Gluten sensitivity, with or without celiac disease symptoms and intestinal pathology, has been suggested as a potentially treatable cause of various diseases. There have been numerous reports linking celiac disease with several skin conditions. Dermatitis herpetiformis is actually a skin manifestation of celiac disease. Autoimmune diseases, allergic diseases, psoriasis and miscellaneous diseases have also been described with gluten intolerance." "Dermatologists should be familiar with the appraisal of gluten sensitive enteropathy and should be able to search for an underlying gluten intolerance. Serological screening by means of anti-gliadin, anti-endomysial and tissue-transglutaminase antibodies should be performed. Gluten intolerance gives rise to a variety of dermatological manifestations which may benefit from a gluten-free diet." This is an important statement.
    In 2010, Korossy reported a skin eruption that he called "gluten-sensitive dermatitis" which he says is clinically indistinguishable from dermatitis herpetiformis but lacks the IgA connection. (Non-dermatitis herpetiformis gluten-sensitive dermatitis: a personal account of an unrecognized entity, Korossy, 2010).
    Cutaneous Gluten Sensitivity
    Bonciolini et al (2015) have made a study of the skin manifestations of people with Non-Celiac Gluten Sensitivity (NCGS) Cutaneous Manifestations of Non-Celiac Gluten Sensitivity: Clinical Histological and Immuno-pathological Features, Bonciolini et al 2015
    They have adopted the term 'cutaneous gluten sensitivity'. They describe 17 consecutive patients affected by NCGS. They had excluded celiac disease and wheat allergy. They said:
    "The skin lesions observed were similar both to eczema and psoriasis and did not show a specific histological pattern. Furthermore, no serological marker was useful to identify these patients. The only data common to most of these patients affected by NCGS associated to non-specific skin manifestations are: the itching; the presence of C3 at the dermoepidermal junction; a rapid resolution of lesions when adopting the gluten free diet. Therefore, dermatologists must be familiar with the cutaneous manifestations and symptoms of gastrointestinal disorders. An appropriate understanding, work-up, consultation and management will help to identify the important cutaneous–gastrointestinal connection and ensuring that this important gastroenterological disease in patients with skin manifestations is not ignored.
    Finally, we suggest an accurate follow-up of all patients who report intense itching and gastrointestinal disorders, even when histology and morphology of the skin lesions do not identify a specific skin disease.
    We also suggest the adoption of gluten-free diet for at least three months assessing any positive effects."
    A Family Affected by Cutaneous Gluten Sensitivity
    Katrina Ojakaar writes this about the severe skin problems in her family that were eventually shown to be related to gluten-harm: "I had terrible eczema on my legs as a child. As an adult I had recurrent eczema on my eyelids and hands in addition to severe dry, itchy skin on my scalp, back, and legs. I also developed rosacea on my face that was treated unsuccessfully with antibiotics and topical ointments. At the age of 44, I had a lab test that showed gluten was making me sick. I immediately stopped eating food that contained gluten and within weeks watched my skin transform. I no longer have raw eczema patches or dry skin; and my rosacea has disappeared." "My daughter, Lila, had horrific diaper rash as an infant and nothing seemed to heal her sore bottom. Even as she grew out of diapers, her bottom was always irritated. Lila's skin was also very dry and irritated. Lotions and even plain bath water caused a sting. But when Lila stopped eating gluten, her skin simply healed. She now has smooth, soft, and moist skin without irritation and enjoys a relaxing bath." "My mother suffered from psoriasis on her legs and scalp until she stopped eating gluten at the age of 72. She is now 75, and the psoriasis has disappeared. Her skin is healthy, and she doesn't eat gluten, dairy, or oats." My father had rosacea on his face and was diagnosed with the autoimmune disease called lichen planus about 12 years ago. He had raw, bleeding sores on his scalp. And his fingernails and toenails disintegrated where he was left with only tender skin. Three years ago my dad stopped eating gluten, and two months later, his fingernails started to grow back. He now has a thin narrow layer of nail at the age of 80. The lesions related to his lichen planus disease on his scalp are gone. And, my father's rosacea, like mine, also healed when he stopped eating gluten." Keratosis Pilaris
    Keratosis pilaris, or sometimes called 'chicken skin' is blamed on gluten by many people. It is very common, occurring in about 10% of people, and there seems to be a hereditary nature to it. It tends to lessen with age, being prominent in toddlers. Any gluten connection remains speculative.
    Anne Luther writes:
    "One of the many pleasant surprises I had when I stopped eating gluten was the disappearance of three different skin rashes. There were non-itchy bumps on my back and arms, non-itchy red bumps on the soles of my feet and a very itchy rash on my legs behind my knees. None of these were ever diagnosed by a doctor but they all disappeared after I had totally eliminated gluten from my life." Keratosis pilaris is skin condition characterized by rough patches of skin caused by small, acne-like bumps. It is found mostly on the upper arms, upper thighs, and cheeks. It can feel a bit like sandpaper or goose-flesh. These little bumps are usually white, but can be red. They do not hurt. Sometimes they can feel a bit itchy.
    Keratosis pilaris seems to be caused by a build-up of keratin, the protein that helps create the protective skin barrier. Once keratin has formed into a hard plug at the opening of the hair follicle, this can block the oil and sweat glands. Consequently, these substances cannot escape out onto the skin, and results in these patches of rough, bumpy skin.
    I see a lot of keratosis pilaris in my Clinic. The gluten connection not clear, but many parents report its disappearance on a gluten-free diet.
    What happened to Max?
    Remember Max's legs at the beginning of this Chapter? Well it turned out that Max had two copies of the HLA gene DQ2 which gives him a 1-in-7 chance of developing celiac disease. It also increases his likelihood of having gluten sensitivity. However his blood tests for gluten (AGA) and celiac disease (tTG) were negative. But he did have evidence of a wheat allergy from his EAST tests. His total IgE levels were extremely high as well (over 4000), showing his heightened allergic status.
    So he has now embarked on a trial of a gluten-free diet. Mum says, "I feel that we are starting to get to the bottom of it now." It will be another 6 months before we know his results of his gluten-free diet. It can take a long time to heal.
    This was an excerpt from Dr Rodney Ford's latest eBook: "Dermatitis Eczema: Gluten Wheat – Solving the Eczema Puzzle." Available at: http://www.GlutenEczema.com

    Jefferson Adams
    Celiac.com 02/09/2017 - Dermatitis herpetiformis is a skin disease that causes blistering, and is understood to be an external symptom of celiac disease. Refractory celiac disease, which does not respond to a gluten-free diet and which carries an increased risk of lymphoma, is well-known to clinicians and researchers.
    A team of researchers recently set out to determine if there were any cases of refractory dermatitis herpetiformis with active rash and persistent small bowel atrophy that do not respond to a gluten-free diet. The research team included K Hervonen, TT Salmi, T Ilus, K Paasikivi, M Vornanen, K Laurila, K Lindfors, K Viiri, P Saavalainen, P Collin, K Kaukinen, and T Reunala. They are affiliated with the Department of Dermatology, Tampere University Hospital and University of Tampere, in Tampere, Finland.
    For their study, the team analyzed their series of 403 patients with dermatitis herpetiformis. They found seven patients (1.7%), who had been on a gluten-free diet for a mean of 16 years, but who still required dapsone to treat the symptoms of dermatitis herpetiformis. Of these, one patient died from mucinous adenocarcinoma before re-examination. At re-examination, the team found skin immunoglobulin A (IgA) deposits in 5 of 6 refractory and 3 of 16 control dermatitis herpetiformis patients with good dietary response.
    At reexamination, they studied small bowel mucosa from 5 refractory and 8 control dermatitis herpetiformis patients; results were normal in all 5 refractory and 7 of 8 control dermatitis herpetiformis patients. One refractory dermatitis herpetiformis patient died from adenocarcinoma, but none of the patients developed lymphoma.
    This study marks the first time doctors have seen small bowel mucosa healing in patients with refractory dermatitis herpetiformis, where the rash is non-responsive to a gluten-free diet. This means that even though dermatitis herpetiformis sufferers may still have a rash, they can also have a healthy gut.
    This is sharply different from refractory celiac disease, where small bowel mucosa do not heal on a gluten-free diet.
    Source:
    Acta Derm Venereol. 2016 Jan;96(1):82-6. doi: 10.2340/00015555-2184.

    Jefferson Adams
    Celiac.com 02/20/2017 - Nickel is the most common cause of contact allergy, and nickel exposure can result in systemic nickel allergy syndrome, which mimics irritable bowel syndrome (IBS). Nickel is also found in wheat, which invites questions about possible nickel exposure from wheat in some cases of contact dermatitis. However, nickel hasn't really been studied in relation to glutenâ€related diseases.
    A research team recently set out to evaluate the frequency of contact dermatitis due to nickel allergy in NCWS patients diagnosed by a doubleâ€blind placeboâ€controlled(DBPC) challenge, and to identify the characteristics of NCWS patients with nickel allergy. The research team included Alberto D'Alcamo, Pasquale Mansueto, Maurizio Soresi, Rosario Iacobucci, Francesco La Blasca, Girolamo Geraci, Francesca Cavataio, Francesca Fayer, Andrea Arini, Laura Di Stefano, Giuseppe Iacono, Liana Bosco, and Antonio Carroccio.
    The are variously affiliated with the Dipartimento di Biologia e Medicina Interna e Specialistica (DiBiMIS), Internal Medicine Unit, University Hospital, Palermo, Italy; the Surgery Department, University Hospital, Palermo, Italy; Pediatric Unit, "Giovanni Paolo II" Hospital, Sciacca (ASP Agrigento), Italy; DiBiMIS, Gastroenterology Unit, University Hospital, Palermo, Italy; Pediatric Gastroenterology Unit, "ARNAS Di Cristina" Hospital, Palermo, Italy; Dipartimento di Scienze e Tecnologie Biologiche Chimiche e Farmaceutiche (Ste.Bi.CeF), University of Palermo, Palermo, Italy.
    Their team conducted a prospective study of 54 women and 6 men, with an average age of 34.1 year, and diagnosed with NCWS from December 2014 to November 2016. They also included a control group of 80 age†and sexâ€matched subjects with functional gastrointestinal symptoms.
    Patients reporting contact dermatitis related to nickelâ€containing objects were given a nickel patch sensitivity test. The tests showed that six out of sixty patients (10%) with NCWS suffered from contact dermatitis and nickel allergy, and this frequency was statistically higher than observed in the 5 percent seen in the control group.
    Compared to NCWS patients who did not suffer from nickel allergy, NCWS patients with nickel allergy commonly showed a higher rates of skin symptoms after wheat consumption. Contact dermatitis and nickel allergy are more frequent in NCWS patients than in subjects with functional gastrointestinal disorders.
    Moreover, large numbers of these patients showed cutaneous manifestations after wheat ingestion. Nickel allergy should be evaluated in NCWS patients who have cutaneous manifestations after wheat ingestion.
    More study is needed to determine the relationship between nickel sensitivity and NCWS.
    Source:
    Nutrients 2017, 9(2), 103; doi:10.3390/nu9020103

    Jefferson Adams
    Celiac.com 03/06/2017 - Dermatitis herpetiformis is an autoimmune skin-blistering disease which is commonly associated with celiac disease. The most common treatments are a gluten-free diet along with the addition of dapsone. DH that does not respond to either a gluten-free diet, or to dapsone, is treated with other immune-suppressing medications, but results have been mixed.
    Now, for the first time, a patient treated with rituximab therapy had resolution of both his pruritus and skin rash. "In addition, the levels of both anti-tissue and anti-epidermal transglutaminase antibodies normalized," said Dr. Ron Feldman of Emory University School of Medicine.
    Writing in JAMA Dermatology, Dr. Feldman and colleagues describe a man in his 80's with a five-year history of worsening DH. He was put on a gluten-free diet along with dapsone 50 mg daily, but his pruritic rash persisted. Dapsone was discontinued because of worsening anemia. He began treatment with 3 g sulfasalazine daily, but this was discontinued due to gastrointestinal symptoms. His disease worsened, and he was put on a tapering course of prednisone from 40 mg to 10 mg daily along with azathioprine titrated up to 2.5 mg/kg daily. However, his disease continued to worsen over subsequent months.
    He was then treated with rituximab according to the protocol used to treat lymphoma: four weekly infusions of 375 mg/m2. "Rituximab," says Dr. Feldman, "has already shown efficacy in the treatment of other autoimmune blistering diseases such as pemphigus and pemphigoid and may have relevance with other B cell mediated diseases in dermatology."
    Thirteen months after treatment, the patient experienced complete resolution of pruritus and other symptoms of DH, as well as normalization of antibodies against both epidermal and tissue transglutaminases.
    Not only was there a normalization of antibodies against both epidermal and tissue transglutaminases, the patient went into remission and has remained symptom-free for up to a year and a half thus far, said Dr. Feldman.
    There is some cause for excitement here, since rituximab is well tolerated and can potentially provide long lasting remission with removal of pathogenic autoimmune B cells.
    Dr. Feldman concedes that their patient did not have serious gastrointestinal symptoms, but remains "hopeful that rituximab may provide similar benefits for patients with celiac disease, in which anti-tissue transglutaminase antibodies play a role, although further research will need to be done to confirm this."
    Source:
    JAMA Dermatology, online December 28, 2016

    Yvonne (Vonnie) Mostat
    Celiac.com 08/05/2017 - I was told that I had irritable bowel disease about thirty years before being diagnosed with celiac disease. I avoided hard to digest foods such as corn, broccoli, beef and other foods difficult to digest, and instead I would, for instance, eat the bun of a hamburger, avoid steaks but eat the buttered buns and the gravy with a main meal and wondered why I was still having the gut and bowel reactions!
    Did you know that even in the absence of fully developed celiac disease, gluten can induce symptoms similar to FBD (Functional Bowel Disorder)? Doctors such as Elena F. Verdu, David Armstrong and Joseph Murray describe celiac disease and irritable bowel syndrome (IBS) as the "no man's land of gluten sensitivity.”
    Celiac disease is a condition traditionally characterized by chronic inflammation of the proximal small intestine resulting in villus atrophy and malabsorption. Irritable bowel disease is a clinical syndrome defined in the most recent Rome III consensus by the presence of abdominal pain or discomfort, at least three days per month in the last three months, and two or more other symptom features: 1) Improvement in defecation, 2) Association with a change in stool frequency, and 3) Association with a change in stool form or appearance. Other GI symptoms, such as bloating and distension are also considered to be consistent with a diagnosis of FBD (Functional Bowel Disorder) such as IBS.
    Did you know IBS has a prevalence of about 10% and is the most common GI disorder in our society, imposing a very high economic burden in North America? Did you know that there is an overlap between IBS and celiac disease? It has been reported that testing for celiac disease in patients with diarrhea-predominant IBS is cost effective if the prevalence of celiac disease is above 1%. Not only do the symptoms of IBS and celiac disease overlap, but epidemiological studies also suggest a greater than by chance association (4 - 5 fold increased risk).
    By convention, a patient with confirmed celiac disease is no longer considered to have IBS. It has never been determined whether celiac disease and IBS cannot co-exist, and there is no reason to think that a diagnosis of celiac disease necessarily precludes a diagnosis of IBS. Dr. Fasano has concluded that about 3% of patients with a "clinical" presentation of IBS were subsequently diagnosed with celiac disease. I would wager that many of you with confirmed celiac disease may also have the symptoms of irritable bowel disease. I cannot be alone in this! I can check off the symptoms of IBS on many occasions and yet I have diagnosed celiac disease and dermatitis herpetiformis. In Dr. Fasano's report: "they have concluded that gluten induced Patho-physiology may constitute an underlying factor in symptom generation in a proportion of patients with IBS like symptoms." A lot of this wording may seem like Greek or a "little over ones head" so to speak, but I believe what they are saying is though we define gluten sensitivity as a condition of some morphological, immunological, or functional disorder that responds to gluten exclusion and NOT a true disease. Gluten sensitivity changes that occur with IBS because of exposure to gluten are eventually going to show up positive for celiac disease.
    Why would a person who has been diagnosed and KNOWS that they have irritable bowel disease continue to ingest gluten when Fasano et. al., have concluded that about 3% of patients with a "clinical" presentation of IBS were subsequently diagnosed with celiac disease?
    Did you know that in July of 2016 teams of researchers at Columbia University published a study confirming that wheat exposure response is, in fact triggering a systemic immune reaction and accompanying intestinal cell damage. "It is estimated that the impacted population is equal to or even exceeds the number of individuals with celiac disease, the vast majority of whom remain undiagnosed" Dr. Armin Alaedin confirmed. Finally they are reporting that a person with irritable bowel disease may have gotten that way from ingesting gluten.
    Celiac Disease and Dermatitis Herpetiformis – Did You Know?
    15 - 25% of individuals with celiac disease experience dermatitis herpetiformis? Dermatitis herpetiformis is a skin manifestation of celiac disease and is part of the abnormal immune response to gluten; Affects more men than women? Dermatitis herpetiformis generally starts in adulthood. It is not common to see dermatitis herpetiformis in children, but it can occur; Only about 20 percent of people with dermatitis herpetiformis have intestinal symptoms of celiac disease, however, biopsies show that 80 percent have some degree of damage to the small intestine, especially if a high gluten diet is maintained; If you suspect dermatitis herpetiformis you may have celiac disease; Iodine is something that a person with dermatitis herpetiformis should definitely avoid; One of the oldest checks for dermatitis herpetiformis was putting some iodine on ones thigh; Dermatitis herpetiformis sores tend to run in a line, or stay in a cluster; Dermatitis herpetiformis treatment consists of a gluten-free diet for life, just like in celiac disease? The skin's response to the gluten-free diet is much slower compared to the healing of the intestines in those with celiac disease. It may take about six months to achieve improvement, though with my own dermatitis herpetiformis spots daily dapsone was miraculous. It did take up to a year for the sores in my scalp to heal. Dr. John Zone, M.D. Professor and Dermatology Chair at the University of Utah and CDF Medical Advisory Board member states "There is little question that ingestion of large amounts of iodine dramatically worsens dermatitis herpetiformis," he continues, "iodine does not cause dermatitis herpetiformis. It worsens dermatitis herpetiformis. Gluten causes dermatitis herpetiformis." Dr. Zone explains that through seeing hundreds of celiac disease patients over the years, he has found that some react to highly concentrated solutions of iodine in cough medicines, shellfish, and kelp, which is often found in Sushi. He also cautions that dietary supplements may contain large amounts of kelp or iodine (usually in the form of potassium iodide or sodium iodide) which can worsen dermatitis herpetiformis.
    I can share with you that I was incorrectly told over 25 years ago by an internist that I could take up to five dapsone, going 5- 4 - 3- 2 -1, and if the spots had not totally disappeared I could repeat the process. Taking too much cased a blood disorder called Methemaglobinemia, a rare but dangerous response to taking too much dapsone. It is a blood disorder in which an abnormal amount of methemoglobin is produced. Hemoglobin is the protein in red blood cells (RBCH's) that carries and distributes oxygen to the body. Methemoglobin is a form of hemoglobin, with it the hemoglobin can carry oxygen, but is not able to release it effectively to body tissues. It can either be passed down through families (inherited or congenital) or be caused by exposure to certain drugs, chemicals, or foods (acquired).
    My nephew was on dapsone, which is, according to the Head of Dermatology at the University of British Columbia, the true test of dermatitis herpetiformis. By taking Dapsone for three or four days the lesions (itchy/sore blisters that beg to be itched, and when you do you break open a lesion that appears to contain liquid...they burn, then they crust, and if you continue to pick off that crust they scar your skin.) almost disappear like magic.
    My nephew thought it was permissible to cheat once in a while and thought that he could get away with it. He used to eat hamburgers every time the craving for a "Big Mac" overcame him! He ate one, or maybe two, until he found out he had dermatitis herpetiformis sores on the soles of his feet and was limping from the pain. Who knows what damage he was doing to the villi in his bowel!
    It is a vast no man's land out there, but if you are a celiac and have dermatitis herpetiformis or are gluten sensitive you need to step into that “land” and learn more about the diseases and what is going on in your body!

  • Recent Articles

    Jefferson Adams
    Celiac.com 04/23/2018 - A team of researchers recently set out to learn whether celiac disease patients commonly suffer cognitive impairment at the time they are diagnosed, and to compare their cognitive performance with non-celiac subjects with similar chronic symptoms and to a group of healthy control subjects.
    The research team included G Longarini, P Richly, MP Temprano, AF Costa, H Vázquez, ML Moreno, S Niveloni, P López, E Smecuol, R Mazure, A González, E Mauriño, and JC Bai. They are variously associated with the Small Bowel Section, Department of Medicine, Dr. C. Bonorino Udaondo Gastroenterology Hospital; Neurocience Cognitive and Traslational Institute (INECO), Favaloro Fundation, CONICET, Buenos Aires; the Brain Health Center (CESAL), Quilmes, Argentina; the Research Council, MSAL, CABA; and with the Research Institute, School of Medicine, Universidad del Salvador.
    The team enrolled fifty adults with symptoms and indications of celiac disease in a prospective cohort without regard to the final diagnosis.  At baseline, all individuals underwent cognitive functional and psychological evaluation. The team then compared celiac disease patients with subjects without celiac disease, and with healthy controls matched by sex, age, and education.
    Celiac disease patients had similar cognitive performance and anxiety, but no significant differences in depression scores compared with disease controls.
    A total of thirty-three subjects were diagnosed with celiac disease. Compared with the 26 healthy control subjects, the 17 celiac disease subjects, and the 17 disease control subjects, who mostly had irritable bowel syndrome, showed impaired cognitive performance (P=0.02 and P=0.04, respectively), functional impairment (P<0.01), and higher depression (P<0.01). 
    From their data, the team noted that any abnormal cognitive functions they saw in adults with newly diagnosed celiac disease did not seem not to be a result of the disease itself. 
    Their results indicate that cognitive dysfunction in celiac patients could be related to long-term symptoms from chronic disease, in general.
    Source:
    J Clin Gastroenterol. 2018 Mar 1. doi: 10.1097/MCG.0000000000001018.

    Connie Sarros
    Celiac.com 04/21/2018 - Dear Friends and Readers,
    I have been writing articles for Scott Adams since the 2002 Summer Issue of the Scott-Free Press. The Scott-Free Press evolved into the Journal of Gluten Sensitivity. I felt honored when Scott asked me ten years ago to contribute to his quarterly journal and it's been a privilege to write articles for his publication ever since.
    Due to personal health reasons and restrictions, I find that I need to retire. My husband and I can no longer travel the country speaking at conferences and to support groups (which we dearly loved to do) nor can I commit to writing more books, articles, or menus. Consequently, I will no longer be contributing articles to the Journal of Gluten Sensitivity. 
    My following books will still be available at Amazon.com:
    Gluten-free Cooking for Dummies Student's Vegetarian Cookbook for Dummies Wheat-free Gluten-free Dessert Cookbook Wheat-free Gluten-free Reduced Calorie Cookbook Wheat-free Gluten-free Cookbook for Kids and Busy Adults (revised version) My first book was published in 1996. My journey since then has been incredible. I have met so many in the celiac community and I feel blessed to be able to call you friends. Many of you have told me that I helped to change your life – let me assure you that your kind words, your phone calls, your thoughtful notes, and your feedback throughout the years have had a vital impact on my life, too. Thank you for all of your support through these years.

    Jefferson Adams
    Celiac.com 04/20/2018 - A digital media company and a label data company are teaming up to help major manufacturers target, reach and convert their desired shoppers based on dietary needs, such as gluten-free diet. The deal could bring synergy in emerging markets such as the gluten-free and allergen-free markets, which represent major growth sectors in the global food industry. 
    Under the deal, personalized digital media company Catalina will be joining forces with Label Insight. Catalina uses consumer purchases data to target shoppers on a personal base, while Label Insight works with major companies like Kellogg, Betty Crocker, and Pepsi to provide insight on food label data to government, retailers, manufacturers and app developers.
    "Brands with very specific product benefits, gluten-free for example, require precise targeting to efficiently reach and convert their desired shoppers,” says Todd Morris, President of Catalina's Go-to-Market organization, adding that “Catalina offers the only purchase-based targeting solution with this capability.” 
    Label Insight’s clients include food and beverage giants such as Unilever, Ben & Jerry's, Lipton and Hellman’s. Label Insight technology has helped the Food and Drug Administration (FDA) build the sector’s very first scientifically accurate database of food ingredients, health attributes and claims.
    Morris says the joint partnership will allow Catalina to “enhance our dataset and further increase our ability to target shoppers who are currently buying - or have shown intent to buy - in these emerging categories,” including gluten-free, allergen-free, and other free-from foods.
    The deal will likely make for easier, more precise targeting of goods to consumers, and thus provide benefits for manufacturers and retailers looking to better serve their retail food customers, especially in specialty areas like gluten-free and allergen-free foods.
    Source:
    fdfworld.com

    Jefferson Adams
    Celiac.com 04/19/2018 - Previous genome and linkage studies indicate the existence of a new disease triggering mechanism that involves amino acid metabolism and nutrient sensing signaling pathways. In an effort to determine if amino acids might play a role in the development of celiac disease, a team of researchers recently set out to investigate if plasma amino acid levels differed among children with celiac disease compared with a control group.
     
    The research team included Åsa Torinsson Naluai, Ladan Saadat Vafa, Audur H. Gudjonsdottir, Henrik Arnell, Lars Browaldh, and Daniel Agardh. They are variously affiliated with the Institute of Biomedicine, Department of Microbiology & Immunology, Sahlgrenska Academy, University of Gothenburg, Gothenburg, Sweden; the Institute of Clinical Sciences, Sahlgrenska Academy at the University of Gothenburg, Gothenburg, Sweden; the Department of Pediatric Gastroenterology, Hepatology and Nutrition, Karolinska University Hospital and Division of Pediatrics, CLINTEC, Karolinska Institute, Stockholm, Sweden; the Department of Clinical Science and Education, Karolinska Institute, Sodersjukhuset, Stockholm, Sweden; the Department of Mathematical Sciences, Chalmers University of Technology, Gothenburg, Sweden; the Diabetes & Celiac Disease Unit, Department of Clinical Sciences, Lund University, Malmö, Sweden; and with the Nathan S Kline Institute in the U.S.A.
    First, the team used liquid chromatography-tandem mass spectrometry (LC/MS) to analyze amino acid levels in fasting plasma samples from 141 children with celiac disease and 129 non-celiac disease controls. They then crafted a general linear model using age and experimental effects as covariates to compare amino acid levels between children with celiac disease and non-celiac control subjects.
    Compared with the control group, seven out of twenty-three children with celiac disease showed elevated levels of the the following amino acids: tryptophan; taurine; glutamic acid; proline; ornithine; alanine; and methionine.
    The significance of the individual amino acids do not survive multiple correction, however, multivariate analyses of the amino acid profile showed significantly altered amino acid levels in children with celiac disease overall and after correction for age, sex and experimental effects.
    This study shows that amino acids can influence inflammation and may play a role in the development of celiac disease.
    Source:
    PLoS One. 2018; 13(3): e0193764. doi: & 10.1371/journal.pone.0193764

    Jefferson Adams
    Celiac.com 04/18/2018 - To the relief of many bewildered passengers and crew, no more comfort turkeys, geese, possums or other questionable pets will be flying on Delta or United without meeting the airlines' strict new requirements for service animals.
    If you’ve flown anywhere lately, you may have seen them. People flying with their designated “emotional support” animals. We’re not talking genuine service animals, like seeing eye dogs, or hearing ear dogs, or even the Belgian Malinois that alerts its owner when there is gluten in food that may trigger her celiac disease.
    Now, to be honest, some of those animals in question do perform a genuine service for those who need emotional support dogs, like veterans with PTSD.
    However, many of these animals are not service animals at all. Many of these animals perform no actual service to their owners, and are nothing more than thinly disguised pets. Many lack proper training, and some have caused serious problems for the airlines and for other passengers.
    Now the major airlines are taking note and introducing stringent requirements for service animals.
    Delta was the first to strike. As reported by the New York Times on January 19: “Effective March 1, Delta, the second largest US airline by passenger traffic, said it will require passengers seeking to fly with pets to present additional documents outlining the passenger’s need for the animal and proof of its training and vaccinations, 48 hours prior to the flight.… This comes in response to what the carrier said was a 150 percent increase in service and support animals — pets, often dogs, that accompany people with disabilities — carried onboard since 2015.… Delta said that it flies some 700 service animals a day. Among them, customers have attempted to fly with comfort turkeys, gliding possums, snakes, spiders, and other unusual pets.”
    Fresh from an unsavory incident with an “emotional support” peacock incident, United Airlines has followed Delta’s lead and set stricter rules for emotional support animals. United’s rules also took effect March 1, 2018.
    So, to the relief of many bewildered passengers and crew, no more comfort turkeys, geese, possums or other questionable pets will be flying on Delta or United without meeting the airlines' strict new requirements for service and emotional support animals.
    Source:
    cnbc.com