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Found 26 results

  1. Hi! I'm new to this forum but have been following threads on this site for the last two years during which I have been gluten free. I made the diet switch due to terrible daily GI problems and skin rashes on my scalp, back and elbows. Both the GI and skin issues improved dramatically after several months on the gluten free diet, yet even now I still am getting itchy/painful sores on my elbows, occasionally on my back and have dry and sore scalp issues (not.sure if this is related to the rashes). What am I missing? Could trace gluten be causing me problems? I tested negative to Celiac's 2 years ago and am super careful to read ingredients on everything i eat. Could something else be triggering this rash? Appreciate your thoughts!!
  2. 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. 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. 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. 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. 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. 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. 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. 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: 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. "Biologists ID Defense Mechanism of Leading Fungal Pathogen. Psych Central. June 25, 2004. http://psychcentral.com/news/archives/2004-06/ru-bid062504.html. Lee, John R., Hawkins, Virginia. What Your Doctor May Not Tell You About Menopause. Mass Market Paperback. September, 2004.
  3. 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.
  4. Celiac.com 12/21/2017 - After a lot of trial and error we celiacs learn, often the hard way, to eliminate foods that are poisonous to our bodies. Sadly, we often forget about what "goes onto" our skin. Since the skin is the living outer layer of our bodies it absorbs not only water and oils, it also absorbs cosmetics that can be poisonous to our celiac bodies, most specifically those of us afflicted with dermatitis herpetiformis (often called celiac disease of the Skin). Men, before you set this article aside, thinking it's only for women and you are exempt, please read on. One of 133 Americans has a wheat-related allergy according to CNN.com. We have a tendency not to group toothpaste and lip-glosses with cosmetics, and we usually ignore vitamins and medications when researching celiac disease and dermatitis herpetiformis. We forget to ask our hairdresser what products they are using and whether they contain wheat or gluten, and glibly apply night creams (to absorb into our skin as we sleep) and mud packs that promise similar benefits. Inquiring into the gluten content of cosmetics, I contacted more than twenty leading companies, then I waited. I was discouraged, particularly by the blatant rudeness of some of the responses I received. Meanwhile, I had to learn whether gluten could be absorbed through the skin. Some websites answered that question with a direct "no". Even some physicians responded saying "no". However, since the skin is the largest living organ in the body and it does absorb various oils and emollients, listing gluten-containing components of medicinal and non-medicinal ingredients allows consumers with celiac disease (celiac disease) or wheat allergies to make informed choices when purchasing and/or consuming natural health products. It enables them to avoid gluten in quantities that may trigger adverse reactions. There are numerous articles on dermatitis herpetiformis and celiac disease making claims so contradictory that it is no wonder we are confused. And I'm not talking about accidental ingestion of gluten. Some such articles claim that trace amounts of gluten One article insists that the skin is not going to absorb gluten, even though our skin is a living organism that can absorb suntan lotions, trans-dermal drugs, etc. It is so susceptible to absorption that when you place a slice of onion in your sock you will taste it in your mouth the following day. How can these websites make such contrary claims? The skin absorbs flavors as well as creams containing gluten. On the other hand, "Glutino" had an article on record, written on September 14, 2010, regarding "Hidden Gluten in Health and Beauty Products". It states that if you apply hand lotion that contains gluten and then prepare food you are exposing yourself to accidental ingestion and your food to cross contamination. They suggest a site called: naturallydahling.com, a site that lists gluten-containing ingredients commonly used in cosmetics. Research proving the full extent of how much your skin absorbs is still unavailable, but to those who believe that "what goes on, goes in", the cosmetic industry is full of unknowns. The size of gluten molecules suggests that they may not be able to pass through the skin, but chemicals and technology designed to enhance skin absorption are already present, if not prevalent, in the cosmetic industry. These chemicals are potentially dangerous and often go untested for negative health effects, yet are widespread in lotions, antiperspirants, perfumes and the "Great Mother Market" anti-wrinkle cosmetics. Since the cosmetic industry is self-regulated it is more important than ever to carefully read labels and use natural or organic products whenever possible. If you find yourself reacting to a particular cosmetic, it is possible that you may have an increased sensitivity to gluten, an allergy or even dermatitis herpetiformis. But wait a minute! Aren't we told that gluten cannot pass through the skin? I suffered terribly from the use of an "Anti-Frizz" product for my hair that caused a massive outbreak of dermatitis herpetiformis. I should have read the label all the way down to the end. I would have found, in very small print, "wheat germ oil". When researching for this article, I wrote to the company and mentioned my problems with their product. I received an apology and a sample of their "new and improved" "Frizz-Ease" product. They obviously do not know their own products and the fancy names they use are as confusing to them as they are to me. The "new and improved" product contained Avena Sativa, the Latin name for OAT. I was also told that I likely just had "hives" on the back of my scalp, as oats are still somewhat controversial. Some research suggests that oats in themselves are gluten free, but that they are virtually always contaminated with other grains during cultivation, harvest, distribution or processing. Recent research indicates that a protein naturally found in oats (avenin) contains peptide sequences closely resembling some peptides from wheat gluten. The oat peptides caused mucosal inflammation in significant numbers of celiac disease sufferers. Some examination results show that even oats that are not contaminated with wheat particles may be dangerous. Again, I was told not to introduce oats into my diet, or use oatmeal as a facial mask until I had been free of a dermatitis herpetaformis outbreak for at least a year. Thus far I have not been able to get relief for that long. It seems the celiac or those who suffer from dermatitis herpetiformis {and let's face it, most people suffering from dermatitis herpetaformis have celiac disease} have to apply the rule of "caveat emptor" - Let the buyer beware. Tolerance to gluten varies among individuals with celiac disease and there are limited clinical scientific data on a threshold for the amount of gluten required to initiate or maintain an immunological reaction in celiac disease patients. "Therefore there is no clear consensus on a safe gluten threshold level." The Dermatologist I see at The University of British Columbia Hospital has told me to tell people in restaurants that gluten is poison to my system and I can become very ill from ingesting gluten. They are a little more careful before telling me a dish is gluten free, and hopefully through education the cosmetic industry is going to improve its testing and cease glibly stating things as "fact" when they simply do not know. Industries that produce over-the-counter medications and vitamin supplement, especially those that may contain gluten as a binding agent, should also be scrutinized. We have come a long way, but large challenges are still ahead. One of our biggest challenges is reading the labels on these products. One almost needs to carry a magnifying glass when shopping. Cosmetics, which include hair products, soaps, perfumes and toothpastes also run us into problems, often big, "itchy" problems. The male celiac/dermatitis herpetaformis experience can also include outbreaks from any product that comes into contact with the skin and particularly those that "stay" on the hair or skin. Who would have known that sun tan lotions could contain wheat germ oil? It is difficult enough to eliminate words such as "triticum vulgare" the Latin name of wheat or "wheat germ" containing ingredients! In preparation for this article, I contacted the following companies: Avon, Clairol, Clarins, Clinique, Coty, Covergirl, Estee Lauder, Garnier, John Frieda, John Paul Mitchell, L'Oreal, Mabelline, Marcelle, Neutrogena, Olay, Pantene, Revlon, and companies that go under general all-encompassing headings such as "Life Brand". This can be a daunting task, and "gluten free" and "wheat free" are not the same thing. Some of the things that I learned in this rather massive undertaking include the rule of "Pac Man". Companies are sometimes taken over by bigger companies and when this occurs their rules change. A company that at one time did not test on animals or use machines that were cleaned prior to using products claiming to be gluten free are now glibly adopting the "new bigger and better". I was shocked to find out that some of the containers from the smaller company were still being used after these PAC MAN take-overs, to save on manufacturing costs. And, remember, once several ingredients are combined the "organic" ingredient probably ceases to be "organic". Some women (and men, you are not exempt here) expect to pay a higher price for a luxury brand assuming that the gorgeous bottle of eye cream sold at Saks for $60.00 is going to work better than the $1.99 tube on the clearance rack of a local store. Just ensure the product has not reached its "sell by" date because it may all be psychological. What you have to concern yourself about, as a celiac patient or a person with dermatitis herpetiformis, is whether there is gluten or wheat in that product. Before you splurge on an expensive product take the time to compare it to a similar product from one of their sister brands. Usually an online store (like Drugstore.com) will list the ingredients. Or you can check on a site like "Makeup Alley" which is a great resource, offering numerous reviews and you can ask questions of the extremely knowledgeable posters on this message board. Another great resource is a large paperback book, titled "Do not go to the Drugstore Without Me" written by Paula Begoin. When I purchased the books in 2001 it was in its 5th Edition. NB: This is not a book specifically for celiac disease or dermatitis herpetiformis, but it was in this book that I found out about "Glutamic Acid". It is derived from wheat gluten and is an amino acid that can have water binding properties for the skin. It also explains glycerylesters that form a vast group of ingredients that are a mixture of fatty acids, sugars, and non-volatile alcohols. These fats and oils are used in cosmetics as emollients and lubricants as well as binding and thickening agents. At the back of this book is a list of the companies that do not test on animals and those that do, but again, the PAC MAN Rule applies. I purchased the book for myself, my daughter, and daughter-in-law, specifically because when my daughter was in her twenties she seemed to think she simply must buy her shampoo from the hairdresser because only $45.00 shampoo was good enough for her hair. It was a big eye opener when she moved out of home and had to purchase it herself! I believe that the more we know about beauty products and the beauty industry the wiser our purchases will be. Consider, for instance, the cost of research and development for say, L'Oreal who develop formulas that can be used in Garnier Shampoos ($3.99) and Kerastase shampoo ($29.99) It doesn't take long to realize that it is a good idea to compare products at different ends of the price scale. Sometimes, two products from two different brands will have the same patent number. The difference is in the non-active ingredients, which give it a unique texture, scent and/or color. Also, it is wise to photo-copy, and even apply plastic covering to lists of "safe" beauty products, just as it is wise to keep a copy of "safe" and "unsafe" foods on hand when you go shopping. When you cannot even pronounce some of the words used in foods and beauty products how can you be expected to remember what is safe to apply to your hair and skin? I received a very nice letter from Teresa Menna, Manager at L'Oreal in Quebec who told me that L'Oreal has abolished gluten in the composition of L'Oreal products. However, on reading more literature I find that Garnier is a mass market cosmetic brand of L'Oreal, and L'Oreal is part of the Group P&G. P&G stands for Proctor and Gamble and P&G Beauty brands can be found on the site:_ http://pgbeautygroomingscience.com/product.php {The Company Garnier Laboratories was started in 1906 and acquired by L'Oreal in the 1970's}. I was unaware prior to researching this article that L'Oreal owned Kerastase, or that L'Oreal had purchased the MAC Cosmetic line, or that the KAO Brands Company owns Ban, Biore, Jergens and John Frieda. Here are some of the ingredients you might find in cosmetics that could indicate wheat or gluten: Avena Sativa {Latin name of oat, or "oat" term containing ingredients Hordeum distichon {Latin name of barley, or "barley" term containing ingredients} Hydrolyzed malt extract Hydrolyzed wheat protein Hydrolyzed vegetable protein Wheat germ Vitamin E Cyclodextrin Barley extract Fermented grain extract Oat (Avena sativa) Samino peptide complex Secale Cereale (Latin name of rye, or "rye" term containing ingredients) Stearyldimoniumhydroxypropyl Phytosphingosine extract Triticum vulgare {Latin name of wheat, or "wheat" term containing ingredients} Dextrin Dextrin palmitate Maltodextrin Sodium C8-16 Isoalkylsuccinyl Wheat Protein Sulfonate Yeast extract Anything with wheat in the name Thoughts: Some cute person gave the warning to ensure your lipstick is gluten free even if you don't have any skin issues. You could swallow some lipstick and get gluten in your system! Another person adds at the bottom of their e-mail to be sure to check guidelines regularly because company policies can change yearly and the list is only to be considered as "guidelines" and make-up ingredients can change each time a company changes or the scientists within that company decide to add to or delete certain products. {Makes you feel very safe as a celiac/dermatitis herpetaformis person doesn't it?} Another e-mailer suggested that mascara labeled as a "thickening agent" should be fearfully evaluated by the celiac/dermatitis herpetaformis person because the thickening agent is often "flour" and can sometimes cause eyelashes to fall out! Who knew? Noted on one e-mail, ‘So-called luxury brands can be laden with synthetic ingredients that do not cost more than their not so luxurious counterparts. True natural products that do perform, and there are a few such brands on the market, are authentic natural products that actually deliver what they promise and they truly do cost more to make because raw ingredients are much higher in cost. In fact, the cost is significantly higher when pure high grade ingredients are used. Letter received: " We have compiled a list of gluten free beauty products available on sephora.com. These products do not contain any wheat, rye or barley derivatives, and they were made in gluten-free laboratories so there is no chance of cross-contamination. But since you cannot be too careful, discontinue use of any product that triggers an attack." Letter received from Clairol:- "Gluten is a protein found in wheat, rye and barley. Although it is not added directly to our product, it may be present in fragrances. Due to the difficulty of tracing the source ingredients for the variety of fragrances used in manufacturing our products, we cannot provide specific levels of gluten content for any of our fragrance blends. Be aware that even products labeled "unscented" will still contain masking scent, therefore they may potentially contain gluten." Advertisement: World's Top Ten Cosmetic Companies : "Beauty begins on the inside, check out our post on ‘The Top Five Foods for Amazing Skin'" - Posted by The Greenster Team "I finally got up the nerve to go through my own (their) personal care products and look them up on "SKIN DEEP" and was very disappointed. The Company that makes my mascara (L'Oreal) tests on animals as does the company that makes my eyeliner (Covergirl) and my under eye concealer (Made by Physician's Formula) contains parabens" THE GREENSTER TEAM creates great articles, list the top ten cosmetic companies, what portion of the world's market they share and their hazard range. Letter received from Mabelline:- "Please find below most ingredients containing gluten (wheat and other grains). We invite you to take this list and compare it to our ingredient listings every time you buy a new product. When in doubt, do not hesitate to do your own research or contact your doctor." {Caveat Emptor} REMEMBER:- The truth is that there is no such thing as gluten free. The FDA has proposed a less than 20 ppm gluten -free standard in 2006. That was its first attempt to define the term gluten free, but the agency has yet to finalize it. The USDA is awaiting the FDA's decision before moving ahead. STILL WAITING. With the number of products making unregulated gluten free claims on the rise, the marketplace can be scary for consumers with gluten sensitivity and wheat allergies. Why hasn't the FDA finalized its 2006 definition of gluten free? As part of sweeping legislation known s FALCPA the Food Allergen Labelling and Consumer Protection Act of 2004, Congress ordered the FDA to define and permit the voluntary use of the term gluten free on the labeling of foods by August 2008. As directed, the FDA issued proposed gluten-free regulations on schedule but seems to have failed to follow through with a final ruling. There has been no explanation for the delay. Since the Cosmetic Industry is a self-regulating body it seems {appears, is assumed} that we the consumers are on our own as far as researching what goes on our skin and in our hair, because some of the letters I have received leave it to the celiac or dermatitis herpetiformis sufferer to research their own products. Even a letter from Avon states:- "Although Avon sells quality products, there is always possibility of contamination during manufacturing or changes/substitutions of ingredients. As with everything related to celiac disease, dermatitis herpetiformis and gluten Intolerance, products, ingredients and preparation may change over time. Your reactions to a specific product, ingredient may be different from the reactions of others. Like eating at a restaurant, you have to make a choice whether to consume/use a product. The list is meant to be a "guide" and does not guarantee that a product is 100% free of gluten. Dacia Lehman, Avon and GIG assume no responsibility for its use and any resulting liability or consequential damages is denied." LETTER: - Proctor and Gamble "The WHMIS rating is designed to rate raw materials and not formulated products such as ours. Nor are our consumer products required to be labeled under the Occupational Safety and Health Administration (OSHA) Hazard Communication Standard. Thus labelling of our products with WHMIS ratings or any other hazard rating should not be required by any state health and safety regulatory agencies." That letter is signed by Asela for the Pantene Team. LETTER:- May 2, 2012 - xyz@ca.loreal.com - "We have received your message and we will get back to you as soon as possible. Web Sites: Gluten-free Lifestyle: glutenfree-lifestyle.com (Gives gluten free products by type and by company) i.e.: deodorants, face & body wash, make-up, suntan lotion, toothpaste, moisturizer, lotion, shampoo & conditioner, shave cream, gels, after shave, laundry products, cleaners, soap, etc. Beauty Industry: Who Owns What? Glutino - Hidden Gluten in Health Products - Glutino & Gluten Free Pantry Blogs: www.gluten-free-cosmetic-counter.org Beauty Blogging Junkie Ebates Shopping Blog In The Makeup Lipstick Powder n'Paint Shop With a Vengeance Smarter Beauty Blog The Beauty Brains Sephora Sephora's iGoogle Beauty Portal References: Codex Standard for Foods for Special Dietary Use for Persons Intolerant to Gluten. Codex STAN 118 - 1979 ROME Government of Canada 2008 - Regulations Amending the Food and Drug Regulations (1220- Enhanced Labeling for Food Allergen and Gluten Sources and Added Sulphites) Health Canada 2007 - celiac disease and the Safety of Oats Labeling of Natural Health Products Containing Gluten - Health Canada Notice 2010
  5. 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!
  6. 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
  7. Iodine testing for DH: This is an old procedure used to create DH blisters. By applying a 30 percent solution of iodine as a patch, a DH outbreak can be created. This may be applicable in some patients when a biopsy is needed and no blisters are available. Immunofluorescence: The indirect immunofluorescence test shows that the serum of a patient contains specific antibodies that bind to different areas of the epithelium. The direct immunofluorescence tests by a skin biopsy shows a specific diagnosis pattern of DH. Traditionally this biopsy is obtained from the buttocks. If no outbreaks are observed in this area, the biopsy is recommended for another area where the itching is observed. DH Drugs: The common drugs used to initially control the blisters are: Dapsone, Sulfoxone, and Sulfapyridine. Each one has different advantages/disadvantages or availability in the treatment of DH. Dapsone changes the life span of red blood cells from an average of 120 days to 30 days. Dapsone is known for possible hematologic changes as a common side effect.
  8. 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.
  9. 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. 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
  10. Scand J Gastroenterol 1999 Feb;34(2):163-9 Kaukinen K, Collin P, Holm K, Rantala I, Vuolteenaho N, Reunala T, Maki M Dept. of Medicine, Tampere University Hospital, Finland. BACKGROUND: We investigated whether wheat starch-based gluten-free products are safe in the treatment of gluten intolerance. METHODS: The study involved 41 children and adults with coeliac disease and 11 adults with dermatitis herpetiformis adhering to a gluten-free diet for 8 years on average. Thirty-five newly diagnosed coeliac patients at diagnosis and 6 to 24 months after the start of a gluten-free diet and 27 non-coeliac patients with dyspepsia were investigated for comparison. Daily dietary gluten and wheat starch intake were calculated. Small bowel mucosal villous architecture, CD3+, alphabeta+, and gammadelta+ intraepithelial lymphocytes, mucosal HLA-DR expression, and serum endomysial, reticulin, and gliadin antibodies were investigated. RESULTS: Forty of 52 long-term-treated patients adhered to a strict wheat starch-based diet and 6 to a strict naturally gluten-free diet; 6 patients had dietary lapses. In the 46 patients on a strict diet the villous architecture, enterocyte height, and density of alphabeta+ intraepithelial lymphocytes were similar to those in non-coeliac subjects and better than in short-term-treated coeliac patients. The density of gammadelta(+)cells was higher, but they seemed to decrease over time with the gluten-free diet. Wheat starch-based gluten-free flour products did not cause aberrant up-regulation of mucosal HLA-DR. The mucosal integrity was not dependent on the daily intake of wheat starch in all patients on a strict diet, whereas two of the six patients with dietary lapses had villous atrophy and positive serology. CONCLUSION: Wheat starch-based gluten-free flour products were not harmful in the treatment of coeliac disease and dermatitis herpetiformis.
  11. Hi New user here, I apologize if this question is posted often (I don't frequent forums and am somewhat unsure how to use this!) I am a 25 year old female who recently started showing symptoms of a a DH rash on my body (on my lower back, buttocks, upper thighs, elbows, and then a few randomly on my legs and arms) for about 4 months now, and it has gradually gotten worse I have suffered from eczema and sensitive skin all my life, and initially put it to be just that. However when they did not go away I researched a bit online and found my rash to match up almost exactly with dermatitis herpetiformis. However, I was also wondering how to tell the difference between dermatitis herpetiformis and scabies. I have heard scabies is very contagious and I have had this rash for some time now and no one in my friends and/or family have contracted anything! However, I would still like to rule out scabies to be safe.
  12. 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/
  13. Celiac.com 04/14/2014 - Exposure to stressful stimuli, such as inflammation, cause cells to up-regulate heat shock proteins (Hsp), which are highly conserved immunomodulatory molecules. Research points to Hsp involvement in numerous autoimmune diseases, including autoimmune bullous diseases and celiac disease. To better understand the role of Hsp in autoimmune bullous diseases, a research team conducted the first investigation of the humoral autoimmune response to Hsp40, Hsp60, Hsp70, and Hsp90 in patients with dermatitis herpetiformis (DH; n = 26), bullous pemphigoid (BP; n = 23), and pemphigus vulgaris (PV; n = 16), the first representing a cutaneous manifestation of celiac disease. The research team included Kasperkiewicz M1, Tukaj S, Gembicki AJ, Silló P, Görög A, Zillikens D, Kárpáti S. They are affiliated with the Department of Dermatology at the University of Lübeck in Lübeck, Germany. In patients with active BP and PV, serum levels of autoantibodies against these Hsp matched the healthy control subjects (n = 9-14), while circulating autoantibodies against Hsp60, Hsp70, and Hsp90 increased at the active disease stage of DH. Further analysis showed that in patients who adopt a gluten-free diet, these anti-Hsp autoantibodies decreased in relation to serum autoantibodies against epidermal and tissue transglutaminase during remission of skin lesions. Larger groups of patients must be studied to confirm these findings, but these results indicate that autoantibodies against Hsp60, Hsp70, and Hsp90 play a key role in the development and maintenance of DH, possibly also in the underlying celiac disease, and may be important in potentially undiscovered disease biomarkers. Source: Cell Stress Chaperones. 2014 Mar 19.
  14. Celiac.com 11/13/2013 - Dermatitis herpetiformis is the cutaneous manifestation of celiac disease. Both celiac and dermatitis herpetiformis are diseases of gluten-sensitivity. People with celiac disease, even with asymptomatic forms, often experience reduced bone density from metabolic bone disease. This led scientists to ask if dermatitis herpetiformis results in bone loss as celiac disease does. However, there is very little data about bone density in patients with dermatitis herpetiformis, so that question remained unanswered. To find an answer, a team of researchers recently set out to compare bone mineral density (BMD) of people with celiac disease against bone mineral density for dermatitis herpetiformis patients. The research team included K. Lorinczy, M. Juhász, M. Csontos, B. Fekete, O. Terjék, P.L. Lakatos, P. Miheller, D. Kocsis, S. Kárpáti, Z. Tulassay, and T. Zágoni. The team looked at 34 people with celiac disease, 53 with dermatitis herpetiformis, and 42 healthy people as a control group. The average patient age was 38.0 +/- 12.1 for the celiac disease group, 32.18 +/- 14.95 for the dermatitis herpetiformis group, and 35.33 +/- 10.41 years for the healthy control group. For each group, the team used dual-energy X-ray absorptiometry to measure bone mineral density of the lumbar spine, the left femoral neck and radius. The team defined low bone density, osteopenia and osteoporosis as a body mass density (BMD) T-score between 0 and -1, between -1 and -2.5, and under -2.5, respectively. In the lumbar region, the team found decreased BMD in 49% of the patients with dermatitis herpetiformis, in 62% of the patients with celiac disease, and in 29% of healthy control subjects. Overall, they measured lower BMD at the lumbar region in people with dermatitis herpetiformis and celiac disease than in the healthy subjects (0.993 +/- 0.136 g/cm2 and 0.880 +/- 0.155 g/cm2 vs. 1.056 +/- 0.126 g/cm2; p < 0.01). There was no difference in density of bones composed of dominantly cortical compartment (femoral neck) in dermatitis herpetiformis and healthy subjects. This study shows that low bone mass is common in patients with dermatitis herpetiformis, and that bone mineral density for these patients is significantly lower in those bones with more trabecular than cortical composition. Source: Rev Esp Enferm Dig. 2013 Apr;105(4):187-193.
  15. Celiac.com 08/26/2013 - Celiac disease and its cutaneous manifestation, dermatitis herpetiformis are both disease marked by sensitivity to gluten. Metabolic bone disease is common among in people with celiac disease, but there isn't much data on rates of bone density in patients with dermatitis herpetiformis. A team of researchers recently set out to determine if dermatitis herpetiformis triggers bone loss, as does celiac disease. The research team included K. Lorinczy, M. Juhász, A. Csontos, B. Fekete, O. Terjék, P.L. Lakatos, P. Miheller, D. Kocsis, S. Kárpáti, Tulassay Z, Zágoni T. For their study, the team wanted to compare bone mineral density (BMD) of celiac and dermatitis herpetiformis patients. The study group included 34 celiac patients, 53 with dermatitis herpetiformis and 42 healthy controls. Average age for celiac patients was 38.0 +/- 12.1 years, for dermatitis herpetiformis it was 32.18 +/- 14.95 years, while it was 35.33 +/- 10.41 years for healthy control subjects. The team used dual-energy X-ray absorptiometry to measure bone mineral density of the lumbar spine, the left femoral neck and radius. They defined low bone density, osteopenia and osteoporosis as a body mass density (BMD) T-score between 0 and -1, between -1 and -2.5, and under -2.5, respectively. They found decreased BMD in the lumbar region, consisting of dominantly trabecular compartment, in 26 patients (49%) with dermatitis herpetiformis, 21 patients with celiac disease (62%), and in 12 of the healthy control subjects (29%). They also measured lower BMD at the lumbar region in dermatitis herpetiformis and celiac patients, compared to healthy subjects (0.993 +/- 0.136 g/cm2 and 0.880 +/- 0.155 g/cm2 vs. 1.056 +/- 0.126 g/cm2; p < 0.01). They found no difference in density of bones consisting of dominantly cortical compartment (femoral neck) between dermatitis herpetiformis patients and healthy control subjects. The results show that a low bone mass is also common in patients with dermatitis herpetiformis. Bone mineral content in these patients is significantly lower in those parts of the skeleton which contain more trabecular bone, and less reduced in areas with more cortical bone. Source: Rev Esp Enferm Dig. 2013 Apr;105(4):187-193.
  16. 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
  17. Dermatitis Herpetiformis Summary A dermatologist who is experienced at recognizing dermatitis herpetiformis should do the biopsy. The biopsy is taken of one of the blisters or the skin at the edge of the lesion. The biopsy should not be taken from the lesion, but from the edge or just near the lesion - it can be misdiagnosed as herpes if taken from the lesion. An iodine patch can be used to bring about a blister. If one has dermatitis herpetiformis, a blister will form; if not, one does not have dermatitis herpetiformis. A positive dermatitis herpetiformis biopsy will show IgA antibodies. The lab should be looking for IgA deposits in a granular line at a specific location in the skin. Some dermatologists use an immunofluorescence method of examination. dermatitis herpetiformis usually appears where pressure is applied to the body, but can appear anywhere. If the biopsy is not taken correctly you can get an incorrect negative. This is a positive method of diagnoses.
  18. Celiac.com 02/21/2011 - After reading this new book by celiac nurse specialist Shelly Stuart, RN, what shines through above all is her true understanding of the complex nature of gluten-related illnesses, and her heartfelt compassion for patients who suffer from them. Her book is extremely well researched and documented. As a registered nurse and celiac herself, Ms. Stuart is able to use her strong patient teaching experience to clearly educate the reader about even very complicated subjects. She provides excellent explanations of leaky gut and the pathophysiology of celiac disease, and she is one of the first clinicians to write in-depth about non-celiac gluten intolerance. Importantly, she makes the point that immune mediated reactions can and do occur in non-celiac gluten intolerance, and backs this up by citing clinical evidence. Another important point made concerns pancreatic insufficiency, which can accompany celiac disease, but few know that this condition can persist even after diagnosis and transition to a gluten-free diet. Her discussion of the many, varied health disorders associated with celiac disease is very comprehensive. One of the most compelling aspects to “Gluten Toxicity” is the many important questions asked regarding the future of clinical research. Ms. Stuart makes it crystal clear that we need to know much more about the physical and mental health effects of gluten-related illness. This can only come about by increasing awareness both within the medical and research communities, and throughout each of our communities. We must all become advocates for greater testing and more accurate diagnosis. Shelly’s personal story, woven throughout the book, adds interest and a personal appeal, but never attempts to substitute anecdote for the hard science she relies on throughout the book. In fact, at first glance, the book seemed rather technical to me, and I thought it would be best-suited for clinicians, but after reading through to the end, I changed my mind. This is an excellent resource, offering really insightful and accurate explanations for anyone suffering from or attempting to treat gluten related illness. Some of you may be familiar with Cleo Libonati, RN, and the book “Recognizing Celiac Disease”, which was one of the first books to comprehensively make connections between a vast array of medical conditions and celiac disease, and back them up with clinical research citations. Shelly Stuart’s book goes quite a bit farther, to discuss the pathophysiology, symptoms, and diagnosis of a huge number of health conditions associated with celiac disease and also non-celiac gluten intolerance.
  19. The following are excerpts from a lecture given by Dr Lionel Fry at the 1984 AGM in London. Dr. Fry is a consultant dermatologist. The lecture is entitled: Recent Studies in Dermatitis Herpetiformis. ..we have looked at the records of 78 patients who have been attending our special DH clinic. The length of follow-up of these patients has ranged from 3 to 14 years (mean 7.4). All patients were offered a gluten-free diet as part of their treatment. However, only 42 patients have taken the diet......in only 23 patients was the diet absolutely strict, in another 17 there had been very occasional, but unintentional gluten intake, and in 2 there had been occasional but intentional intake. When these three groups of patients are compared it has been found that of the 23 patients taking a strict diet, 22 (96%) were able to stop drugs compared to 8 (47%) of 17 patients who had occasional but unintentional gluten (the 2 occasional but intentional gluten eaters could not stop drugs)........One of the most significant points to have emerged from our study is the time it takes with a gluten free diet before patients may reduce the dose of their drugs to control the rash, and eventually cease to need drugs. The mean time before there was a reduction in the dose of dapsone was 4-30 months (mean 8), and 6-108 months (mean 29 ) before the drugs were no longer required. These times were dependent on the strictness of the diet. ....In the past many doctors have been unaware that it has taken so long before the drugs could be reduced or stopped and this led to a situation where it was thought that the rash was not due to gluten.......Twelve of our patients agreed to take gluten again to see if their rash returned. These 12 patients had been on a gluten free diet for periods ranging from 3-12 years (mean 7.5). In 11 of the 12 patients the rash recurred in times ranging from 2-36 weeks (mean 12). It could be argued that in the patient whose rash did not recur had undergone spontaneous remission........ (sections of the text of a talk by Dr. Lionel Fry, Consultant Dermatologist, St Marys Hospital, London W2).
  20. Br J Dermatol 1994 Oct;131(4):541-5 Garioch JJ, Lewis HM, Sargent SA, Leonard JN, Fry L. Department of Dermatology, St Marys Hospital, London, U.K. Gluten-free diets have been used in the treatment of patients with dermatitis herpetiformis in our department since 1967. Of the 212 patients with dermatitis herpetiformis attending between 1967 and 1992, 133 managed to take the diet, and 78 of these achieved complete control of their rash by diet alone. Of the remaining 55 patients taking a gluten-free diet, all but three were taking partial diets; over half of these patients managed to substantially reduce the dose of medication required. Of the 77 patients taking a normal diet, eight entered spontaneous remission, giving a remission rate of 10%; a further two patients who had been taking gluten-free diets were found to have remitted when they resumed normal diets. Loss of IgA from the skin was observed in 10 of 41 (24%) patients taking strict gluten-free diets. These patients had been taking their diets for an average of 13 years (range 5-24 years), and their rash had been controlled by diet alone for an average of 10 years (range 3-16 years). The advantages of a gluten-free diet in the management of patients with dermatitis herpetiformis are: (i) the need for medication is reduced or abolished; (ii) there is resolution of the enteropathy, and (iii) patients experience a feeling of well-being after commencing the diet. Thus, we propose that a gluten-free diet is the most appropriate treatment for patients with dermatitis herpetiformis.
  21. Celiac.com 05/12/2003 - Families that have had two or more relatives diagnosed with Celiac Disease or Dermatitis Herpetiformis are being sought for a study to identify factors associated with the development of celiac disease. The goal of the study is to find genes that may predispose individuals and their relatives to develop the condition. The study has been funded for the last six years by a grant from the National Institutes of Health. Discovery of a gene for Celiac Disease could eventually lead to better diagnosis, treatment, and possibly even prevention of celiac disease. Ultimately, the research could result in development of preventive strategies and therapies for individuals who are at high risk for the condition. It is estimated that 1 in 200 people in the United States suffer from Celiac Disease. We are looking for individuals with proven celiac disease who have siblings or extended family members who have also been diagnosed with the disease. The study will accept families where at least two individuals in the same family, with the exception of simple parent-child pairs, have been diagnosed with celiac disease or dermatitis herpetiformis. Study participants will be asked to provide some family medical history and a small blood sample for genetic analysis. Participants will also receive a free Endomysial Antibody test for screening for Celiac Disease. For further information, please contact Linda Steele at the City of Hope at (626) 471-9264 or toll-free at (800) 844-0049 or e-mail celiacstudy@coh.org.
  22. Celiac.com 11/07/2002 - The results of a recent study conducted by researchers in Sweden indicate that the overall cancer risk of people with celiac disease or dermatitis herpetiformis is higher than that of the normal population, but lower than other studies have reported. Further, the overall risk is lower in children and higher in adults, and the risk "declined with time and eventually reached unity," presumably because most of the subjects followed a gluten-free diet. Here is the Medline abstract for the study: Gastroenterology 2002 Nov;123(5):1428-1435 Links Askling J, Linet M, Gridley G, Halstensen TS, Ekstrom K, Ekbom A. Clinical Epidemiology Unit, Department of Medicine, Karolinska Institute/Hospital, Stockholm, Sweden; Division of Cancer Epidemiology and Genetics, National Cancer Institute, Bethesda, Maryland; Institute of Oral Biology, University of Oslo, Oslo, Norway; and the Department of Medical Epidemiology, Karolinska Institute, Stockholm, Sweden. BACKGROUND & AIMS: Studies of cancer risk in celiac disease (celiac disease) or dermatitis herpetiformis (DH) indicate increased risks for malignant lymphoma and occasionally other neoplasms, but are characterized by small numbers, lack of systematic cancer assessment, and subjects identified from referral institutions. METHODS: By using Swedish population-based inpatient and cancer registry data, we followed-up 12,000 subjects with celiac disease or DH, and evaluated cancer incidence by using standardized incidence ratios (SIR). RESULTS: Adults (but not children and adolescents) with celiac disease had an elevated overall risk for cancer (SIR = 1.3) that declined with time and eventually reached unity. Elevated risks were found for malignant lymphomas, small-intestinal, oropharyngeal, esophageal, large intestinal, hepatobiliary, and pancreatic carcinomas. The excess occurrence of malignant lymphomas was confined to adults, decreased with time of follow-up evaluation, and decreased over successive calendar periods. Decreased risks were found for breast cancer. Subjects with DH had a slightly increased overall cancer risk (SIR = 1.2) owing to excesses of malignant lymphoma and leukemia, but no increases of gastrointestinal carcinomas. CONCLUSIONS: Albeit increased, the relative risks for lymphomas and gastrointestinal cancers in this study are lower (and declining) than in most previous reports. The overall cancer risk is only moderately increased, and non-elevated during childhood and adolescence. PMID: 12404215 [PubMed - as supplied by publisher]
  23. Scand J Gastroenterol 1999 Feb;34(2):163-9 PMID: 10192194, UI: 99206412 Authors: Kaukinen K, Collin P, Holm K, Rantala I, Vuolteenaho N, Reunala T, Maki M Dept. of Medicine, Tampere University Hospital, Finland. (Celiac.com 05/14/2000) SPECIAL NOTE: European Codex Alimentarius quality wheat starch was used in this study. BACKGROUND: We investigated whether wheat starch-based gluten-free products are safe in the treatment of gluten intolerance. METHODS: The study involved 41 children and adults with coeliac disease and 11 adults with dermatitis herpetiformis adhering to a gluten-free diet for 8 years on average. Thirty-five newly diagnosed coeliac patients at diagnosis and 6 to 24 months after the start of a gluten-free diet and 27 non-coeliac patients with dyspepsia were investigated for comparison. Daily dietary gluten and wheat starch intake were calculated. Small bowel mucosal villous architecture, CD3+, alphabeta+, and gammadelta+ intraepithelial lymphocytes, mucosal HLA-DR expression, and serum endomysial, reticulin, and gliadin antibodies were investigated. RESULTS: Forty of 52 long-term-treated patients adhered to a strict wheat starch-based diet and 6 to a strict naturally gluten-free diet; 6 patients had dietary lapses. In the 46 patients on a strict diet the villous architecture, enterocyte height, and density of alphabeta+ intraepithelial lymphocytes were similar to those in non-coeliac subjects and better than in short-term-treated coeliac patients. The density of gammadelta(+)cells was higher, but they seemed to decrease over time with the gluten-free diet. Wheat starch-based gluten-free flour products did not cause aberrant up-regulation of mucosal HLA-DR. The mucosal integrity was not dependent on the daily intake of wheat starch in all patients on a strict diet, whereas two of the six patients with dietary lapses had villous atrophy and positive serology. CONCLUSION: Wheat starch-based gluten-free flour products were not harmful in the treatment of coeliac disease and dermatitis herpetiformis.
  24. Scand J Gastroenterol 1999 Feb;34(2):163-9 PMID: 10192194, UI: 99206412 Authors: Kaukinen K, Collin P, Holm K, Rantala I, Vuolteenaho N, Reunala T, Maki M Dept. of Medicine, Tampere University Hospital, Finland. (Celiac.com 05/14/2000) SPECIAL NOTE: European Codex Alimentarius quality wheat starch was used in this study. BACKGROUND: We investigated whether wheat starch-based gluten-free products are safe in the treatment of gluten intolerance. METHODS: The study involved 41 children and adults with coeliac disease and 11 adults with dermatitis herpetiformis adhering to a gluten-free diet for 8 years on average. Thirty-five newly diagnosed coeliac patients at diagnosis and 6 to 24 months after the start of a gluten-free diet and 27 non-coeliac patients with dyspepsia were investigated for comparison. Daily dietary gluten and wheat starch intake were calculated. Small bowel mucosal villous architecture, celiac disease3+, alphabeta+, and gammadelta+ intraepithelial lymphocytes, mucosal HLA-DR expression, and serum endomysial, reticulin, and gliadin antibodies were investigated. RESULTS: Forty of 52 long-term-treated patients adhered to a strict wheat starch-based diet and 6 to a strict naturally gluten-free diet; 6 patients had dietary lapses. In the 46 patients on a strict diet the villous architecture, enterocyte height, and density of alphabeta+ intraepithelial lymphocytes were similar to those in non-coeliac subjects and better than in short-term-treated coeliac patients. The density of gammadelta(+)cells was higher, but they seemed to decrease over time with the gluten-free diet. Wheat starch-based gluten-free flour products did not cause aberrant upregulation of mucosal HLA-DR. The mucosal integrity was not dependent on the daily intake of wheat starch in all patients on a strict diet, whereas two of the six patients with dietary lapses had villous atrophy and positive serology. CONCLUSION: Wheat starch-based gluten-free flour products were not harmful in the treatment of coeliac disease and dermatitis herpetiformis.
  25. The following was written by Dr. Joseph Murray, one of the leading USA physicians in the diagnosis of celiac disease (celiac disease) and dermatitis herpetiformis (DH). Dr. Murray (murray.joseph@mayo.edu) of the Mayo Clinic Rochester, MN, is a gastroenterologist who specializes in treating Celiac disease: In response to your questions about DH, The following represents my views about this curious and very itchy condition. In general DH is a severely itchy skin condition that often starts abruptly, affecting the elbows knees buttocks and scalp and the back. It usually starts as little bumps that can become tiny blisters and then are usually scratched off. It can occur in one spot only but usually occurs in many different areas. The condition is related to the deposit under the skin of IgA deposits. These occur in response to the ingestion of gluten in the diet. However, once deposited there, they are only slowly cleared by the body even when the individual is gluten free. While most individuals with DH do not have obvious GI symptoms almost all have some damage in their intestine. They the potential for all of the nutritional complications of celiac disease. The diagnosis is made by taking a skin biopsy and performing immunoflorescence studies on it (a specialized type of stain in major laboratories) The test is usually reliable but it takes a significant dedication to detect early cases where there is a short history of rash rather than years or months of rash. It is unusual to develop DH after the start of a GFD for celiac disease. About 5 % of celiac disease patients will develop DH usually in the first 6-12 months. This probably reflects the long lasting nature of the deposits under the skin. Treatment for DH is twofold. (1) Remove the cause: gluten. (2) Suppress the skin response with drugs such as Dapsone or some other sulphones. The latter is the most common treatment used as it is rapidly relieves the itch. However there are some side effects associated with these medications and they need to be taken under medical monitoring with blood tests to detect side effects. It is my practice that DH should be treated with a gluten-free diet for life and use of drugs to get immediate relief in the short term. It is usually possible to get patient off the Dapsone after several months of a strict gluten-free diet. The most common complication of DH is scarring which usually fades with time. Occasionally there can be secondary infection from scratching. There is probably a slightly increased chance of malignancy in those with DH who are not on a gluten-free diet. Several physical triggers are known to set off an attack of DH, especially exposure to iodides and bromides which are contained in household cleaners. A very good reference for DH is available from the GIG in Washington.