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Celiac.com 04/09/2024 - Speculation about the source or cause of Napoleon's famous itch is fun, but much of the speculation seems to ignore the facts that point to the most likely answer. Napoleon's autopsy revealed gastric cancer and dermatitis herpetiformis, a condition associated with celiac disease. This is a historical fact. Despite this, speculation persists among historians and others, including dermatologists at the American Academy of Dermatology, regarding the potential causes of Napoleon's chronic itch. While some theories, such as scabies or arsenic exposure, lack substantial supporting evidence, they continue to be discussed. Zachary Leibovit-Reiben and colleagues at the University of Arizona College of Medicine recently presented research on Napoleon's itch, aiming to raise awareness of the nature of his chronic itchiness. Chronic itch, while often underestimated, is gaining recognition in dermatological research, with numerous presentations and discussions dedicated to it at the American Academy of Dermatology meeting. Leibovit-Reiben's team explored various potential causes, including scabies, arsenic exposure, atopic dermatitis, and psychogenic pruritus. However, given the autopsy findings of gastric cancer and dermatitis herpetiformis, which is linked to celiac disease, these realities should be considered the most plausible explanations. As to why they do not focus their speculation upon these two facts, anyone's guess is as good as mine. By reconciling historical speculation with medical evidence, this research aims to provide a clearer understanding of Napoleon's mysterious itch and its possible impact on his life. However, speculation, absent hard evidence, is unlikely to produce a fruitful avenue for revelation. Further investigation into Napoleon's medical history may shed light on this intriguing aspect of his health, and contribute to broader discussions on the intersection of historical narratives and medical science. However, students of history, especially those with a foothold in medicine and science, should probably begin with the actual historical and medical facts established by the official autopsy, as it is the one solid historical piece of evidence that is thus far, uncontested. Napoleon Suffered from Dermatitis Herpetiformis and Gastric Cancer If Napoleon did in fact suffer from dermatitis herpetiformis, and if he did in fact suffer from gastric cancer, then the results of the autopsy would seem to point in the direction of those two conditions, and, potentially to celiac disease. So why all the wild speculation that seems to ignore the official autopsy results? Any why is this fact-free speculation being driven by medical students, and/or doctors at a medical conference? Arguing for celiac disease is certainly speculative, and unlikely to come with smoking gun evidence. But it's a lot closer to being supported by actual observational evidence than speculation based on anecdotal evidence, however historically supported. If doctors and others are going to speculated on the potential cause of Napoleon's famous itching, shouldn't they confine themselves as close as possible to the known facts? Without that as a baseline, this type of speculation seems wholly ungrounded in science or medicine, and more akin to gossip or fantasy. As such, it is neither informative, nor likely to be produce any strong conclusions. Read more at Managedhealthcareexecutive.com

Celiac.com 10/21/2023 - Celiac disease, an autoimmune disorder triggered by gluten consumption, has long been associated with a range of digestive symptoms. However, the story doesn't end in the digestive tract. For some individuals, celiac disease unveils itself through an unexpected medium: their skin. This presentation is known as dermatitis herpetiformis, and it's a vital but often overlooked facet of celiac disease. Dermatitis herpetiformis, affectionately referred to as "DH" by some, is a chronic skin condition characterized by intensely itchy, blistering rashes. It might sound like a mere irritation, but DH is, in fact, the skin's way of echoing an underlying immune response to gluten ingestion. Just as celiac disease affects the small intestine, DH is its external manifestation, giving voice to the body's immunological revolt. In our in-depth exploration of dermatitis herpetiformis, we delve into the intricacies of this unique condition. We'll unravel its connection to celiac disease, exploring why it appears and how it's diagnosed. We'll discuss the unmistakable and sometimes bewildering symptoms, along with the challenges of managing this skin condition. Moreover, we'll guide you through treatment options and offer practical advice for living a gluten-free life to keep DH at bay. Despite its undeniable role in the larger celiac disease narrative, dermatitis herpetiformis remains an enigma for many. It's time to shed light on this aspect of celiac disease that affects the skin and, in doing so, empower those who face this condition to navigate its complexities with confidence and knowledge. So, let's embark on this enlightening journey, demystifying the link between celiac disease and the unexpected language of the skin: dermatitis herpetiformis. Unraveling the Connection Between Dermatitis Herpetiformis and Celiac Disease For those who have encountered dermatitis herpetiformis, the initial onset can be perplexing. Unexplained rashes and relentless itching lead many on a quest to uncover the root cause of their skin woes. This is where the intricate connection between dermatitis herpetiformis and celiac disease comes into play. Celiac disease is a well-known autoimmune disorder, triggered by the consumption of gluten—a protein found in wheat, barley, and rye. When someone with celiac disease ingests gluten, it initiates an immune response in the small intestine. This response damages the intestinal lining, impeding the absorption of nutrients and leading to a host of gastrointestinal symptoms. So, what's the connection between celiac disease's internal battleground and the itchy rashes of dermatitis herpetiformis? The answer lies in the immune system's memory. Individuals with celiac disease have a particular genetic predisposition. When they consume gluten, their immune system recognizes it as an invader and produces antibodies, mainly tissue transglutaminase 2 (tTG-2). These antibodies don't limit their activity to the digestive tract; they circulate throughout the body. Here's where dermatitis herpetiformis makes its grand entrance. The same antibodies that target the small intestine are drawn to the skin. When they reach the skin's surface, they provoke an inflammatory response. This reaction results in the characteristic blistering and intense itching of DH. In essence, DH is the skin's way of expressing the body's rejection of gluten—manifesting on the exterior what celiac disease inflicts internally. But this dual-action response, where gluten triggers a reaction in both the intestines and the skin, also means that those with dermatitis herpetiformis often have underlying celiac disease. While not all celiacs experience DH, a substantial number do. As a result, diagnosing DH often leads to a celiac disease diagnosis, making it crucial to recognize the symptoms and understand the connection between these two conditions. The Symptoms of Dermatitis Herpetiformis Dermatitis herpetiformis is a skin condition known for its distinct and uncomfortable symptoms. Understanding these symptoms is crucial for timely diagnosis and management. Here, we delve into the key indicators of DH and how they affect those who experience this unique skin disorder. Intensely Itchy Skin: The hallmark symptom of DH is intense itching. Affected individuals often describe the itch as deep and unrelenting. This itchiness typically precedes the appearance of the rash and can be so severe that it significantly impacts a person's quality of life. Scratching the itchy areas can further exacerbate the condition. Blistering Rash: The most recognizable feature of DH is the appearance of a blistering rash. The rash typically consists of red, raised bumps or blisters filled with clear fluid. These eruptions often cluster together and create symmetrical patterns on the skin, appearing on both sides of the body. The rash's appearance can vary from person to person but is characterized by its tendency to group in clusters. Elbows, Knees, and Buttocks: DH often affects specific areas of the body, with a predilection for the extensor surfaces. This means that it frequently appears on the elbows, knees, and buttocks. However, the rash can also emerge on other body parts, including the scalp, back, and shoulders. Burning Sensation: In addition to itching, some individuals report a burning sensation or discomfort in the affected areas. This burning sensation can add to the overall discomfort and distress associated with the condition. Skin Lesions and Scarring: If left untreated, DH can lead to skin lesions, erosions, and secondary bacterial infections. Prolonged scratching or friction can result in scarring, which, in severe cases, may be permanent. Recurrence and Chronic Nature: DH tends to be a chronic condition with a relapsing-remitting pattern. Symptoms may improve and reappear over time, making it essential for individuals to have a long-term management plan. Understanding the symptoms of dermatitis herpetiformis is vital for early recognition and proper management. It is essential for affected individuals to seek medical attention for a definitive diagnosis and to initiate appropriate treatment, often in conjunction with managing the underlying condition, celiac disease. How To Diagnose Dermatitis Herpetiformis Diagnosing dermatitis herpetiformis can be challenging due to its resemblance to other skin conditions. However, a correct and timely diagnosis is crucial as it often points to an underlying condition, celiac disease. Here, we'll explore the key steps involved in diagnosing DH. Clinical Assessment: The diagnostic journey typically begins with a visit to a dermatologist. DH's hallmark symptom is its distinct blistering rash, but it can resemble other dermatological conditions like eczema, contact dermatitis, or even herpes. An experienced dermatologist will conduct a thorough clinical assessment, taking into account the specific characteristics of the rash, its distribution, and the accompanying symptoms such as itching and burning. The presence of the rash's unique pattern, which typically forms in clusters and symmetrical groups, can be a telling sign. Skin Biopsy: In many cases, a definitive diagnosis of DH requires a skin biopsy. A small sample of the affected skin is taken and examined under a microscope. The biopsy typically reveals specific markers such as granular immunoglobulin A (IgA) deposits in the skin layers, a key indicator of DH. These IgA deposits, also found in the small intestine of those with celiac disease, provide a crucial link between DH and the underlying autoimmune condition. Blood Tests: Alongside a skin biopsy, blood tests can be conducted to detect elevated levels of antibodies associated with celiac disease, particularly IgA-tissue transglutaminase (tTG) and IgA-endomysial antibodies (EMA). Finding high levels of these antibodies in the bloodstream adds another layer of evidence linking DH to celiac disease. Response to a Gluten-Free Diet: Perhaps the most compelling diagnostic tool for DH is the patient's response to a gluten-free diet. If the rash and other symptoms improve or disappear with the elimination of gluten from the diet, it strongly suggests dermatitis herpetiformis in the context of celiac disease. The diagnosis of DH can be complex, requiring a combination of clinical expertise, laboratory tests, and a dietary evaluation. Once confirmed, patients can begin effective management of both the skin condition and their underlying celiac disease, often with significant improvements in their overall health and well-being. In the following section, we'll explore strategies for managing dermatitis herpetiformis. Home and Over the Counter Remedies for Symptoms of Dermatitis Herpetiformis While home remedies can provide some relief from itching, it's important to note that DH typically requires medical treatment, including a gluten-free diet. Be sure to consult a healthcare professional for proper diagnosis and treatment. Here are some home remedies that may help alleviate itching associated with dermatitis herpetiformis: Gluten-Free Diet: While not a prescription medication, adherence to a strict gluten-free diet is the cornerstone of DH treatment. Eliminating gluten from the diet can prevent the formation of new skin lesions and reduce the need for medications over time. Benadryl (consult a doctor before use in young children): First try the over the counter cream, but if that does work a member of Celiac.com's forum reports that the very best thing to stop DH itching is to grind up a 25mg pill of Benadryl (or perhaps get capsules and just open one) into two teaspoons of water, and then spread it over the rash and itchy areas with your finger. Just be careful not to use too much too often, as you can absorb the drug through the skin. Allegra (Fexofenadine): Those with DH report that taking Allegra, which, in the USA, is an over the counter allergy medication, provides relief. Be sure to read all package warnings before giving it to children. Kroger's Full Prescription Strength Athletes Foot Cream: Users have reported that this helped stop their itching. Cold Compress: Apply a cold, damp cloth or an ice pack to the affected area. This can help reduce inflammation and numb the itching sensation temporarily. Gluten-Free Oatmeal Bath: Adding colloidal oatmeal (available in drugstores) to your bathwater can soothe irritated skin. Soak in the oatmeal bath for 15-20 minutes and be sure the oatmeal is certified gluten-free. Baking Soda Bath: A baking soda bath may help relieve itching. Add a cup of baking soda to a lukewarm bath and soak in it for relief. Aloe Vera: Apply aloe vera gel directly to the affected area. Aloe vera has anti-inflammatory properties and can provide soothing relief. Calamine Lotion: Calamine lotion can help relieve itching and soothe the skin. Apply a thin layer to the affected area and allow it to dry. Topical Hydrocortisone Cream: Over-the-counter hydrocortisone creams can provide temporary relief from itching and inflammation. Follow the instructions on the product label. Keep Skin Moisturized: Apply a fragrance-free, hypoallergenic moisturizer to your skin regularly. Dry skin can worsen itching. Ben-Gay Cream: Some people with DH have reported that using Ben-Gay cream on the affected areas relieved the itchiness. Chiggerex cream: Some people with DH have reported that using Chiggerex cream on the affected areas relieved the itchiness. Avoid Irritants: Avoid foods high in iodine like seafoods and dairy products as iodine may exacerbate symptoms in some people with DH. Also avoid harsh soaps, fragranced products, and hot water, as they can exacerbate itching. Opt for gentle, hypoallergenic products. Wear Loose-Fitting Clothing: Tight clothing can irritate the skin. Choose loose-fitting, breathable fabrics to minimize friction. Antihistamines: Over-the-counter antihistamines may help reduce itching. Consult your doctor or pharmacist for the appropriate dosage and type. Niacin and Niacinamide (Vitamin B3): There is some evidence that niacin and niacinamide may offer some relief from DH symptoms. Stress Reduction: Stress can exacerbate itching. Engage in relaxation techniques such as deep breathing, meditation, or yoga to manage stress. Dietary Modifications: While not a home remedy, it's crucial to address the root cause of DH by following a strict gluten-free diet. Consult with a registered dietitian to ensure you are avoiding gluten-containing foods. Remember that these home remedies are not a substitute for medical treatment. If you suspect you have dermatitis herpetiformis or are experiencing severe itching, consult a dermatologist or healthcare provider for proper diagnosis and guidance on managing the condition, which typically includes a gluten-free diet and medication to control symptoms. Prescription Treatments for Symptoms of Dermatitis Herpetiformis Dermatitis herpetiformis is typically treated with prescription medications aimed at controlling the symptoms and underlying condition, which is celiac disease. The primary treatment for DH is a strict gluten-free diet, as DH is closely associated with gluten intolerance. Additionally, medications are often prescribed to manage the skin symptoms. Common prescription treatments for DH include: Dapsone: Dapsone is the most commonly prescribed medication for DH. It is an oral medication that belongs to the sulfone class of drugs. Dapsone helps reduce skin inflammation, itching, and the formation of new blisters. It is usually started at a low dose and gradually increased as needed. Regular blood tests are necessary to monitor potential side effects, such as changes in blood cell counts. Topical Steroids: In addition to oral medications, topical corticosteroid creams or ointments may be prescribed to reduce itching and inflammation. These are applied directly to the affected skin and should be used as directed by a healthcare provider. Oral Corticosteroids: In cases of severe flare-ups or when Dapsone is not well-tolerated, oral corticosteroids like prednisone may be prescribed for short periods to quickly control symptoms. Long-term use of oral corticosteroids is generally avoided due to potential side effects. Sulfapyridine: Sulfapyridine is sometimes used as an alternative to Dapsone. It is also an oral medication that can help control DH symptoms. Like Dapsone, regular blood tests are necessary to monitor for side effects. Immunosuppressants: In some cases, immunosuppressive medications such as azathioprine or methotrexate may be prescribed to control DH symptoms. These medications work by suppressing the immune system's response that leads to skin inflammation. They are typically considered when other treatments are ineffective or not well-tolerated. It's crucial to work closely with a healthcare provider, preferably a dermatologist and a gastroenterologist, if you have dermatitis herpetiformis. They can properly diagnose the condition, monitor your progress, and adjust your treatment plan as needed. Additionally, regular follow-up appointments are important to assess the effectiveness of treatment and manage any potential side effects of medications. Remember that self-diagnosis and self-treatment are not recommended for DH, and medical guidance is essential for effective management.

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 Open Original Shared Link. 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 Open Original Shared Link. 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. psychcentral.com. Lee, John R., Hawkins, Virginia. What Your Doctor May Not Tell You About Menopause. Mass Market Paperback. September, 2004.

Celiac.com 08/27/2022 - Just as “bovine spongiform encephalopathy,” better known as mad cow disease, is thought to be the result of feeding infected animal parts to cattle, gluten sensitivity, dermatitis herpetiformis, celiac disease, and a host of autoimmune diseases are the result of feeding grains to humans. Cattle are better equipped to eat grains and we are better equipped to eat meats. And when we step outside the food sources that shaped our evolution, we can expect some problems––sometimes very serious problems. Let’s start by comparing human and ruminant digestive processes. Cows, for instance, have a stomach that is divided into four chambers. When grazing, cattle eat large quantities of food. They mix it with saliva and form it into boluses that they can swallow. After these boluses have been “worked on” by the micro-organisms in the first and second chambers of their four-part stomach, cattle regurgitate and chew them further, preparing them for return to the cow’s stomach where much of this feed may remain for up to 5 days of further digestion. In the final chamber of the stomach acids are secreted to aid further digestion. Cattle spend more than 12 hours a day chewing their food. They produce more than five gallons of saliva every day, and they even utilize fermentation as part of their digestive process. The size of their digestive tracts is disproportionately large compared to that of a human. Although many infectious agents can gain entry with feed, the cow relies on the competitive advantage enjoyed by the friendly bacteria in their intestines. By comparison, humans process food very rapidly, typically taking less than 24 hours of transit time, from mouth to anus. We have only one chamber in the stomach and a comparatively short digestive tract. Our digestive tract is the site of a large number and variety of immune processes aimed at protecting us from invading microbes. About 10,000 years ago, humans began a dietary experiment. They started eating grains in enough quantity to warrant cultivation. Nobody knew, back then, what caused sickness or dental cavities, or even what caused people to be shorter or taller. It was not until Twentieth Century that archaeologists made the connection that we began to realize that wherever grains were cultivated, within a generation or two, people became shorter by 5 or 6 inches, they also developed considerable dental cavities and bone disease. Because the remains are only skeletal, we can’t really tell what other diseases most early farmers suffered. However, archaeologists and other scientists have reported a host of evidence from Egyptian mummies indicating that this grain-dominated culture experienced considerable cardio-vascular and autoimmune disease. We also know that hunter-gatherers who consume no grains show little or no signs of such diseases. At the October, 2003 CSA/USA conference in Buffalo, Dr. Martin Kagnoff mentioned that we humans simply do not make the digestive enzymes necessary to fully digest some of the proteins found in gluten-containing grains. Just as we have been coming to realize the fallacy of dietary recommendations that encourage humans to eat grains, we have developed some other problematic economies in our food supply. For a variety of reasons, we started feeding cattle dietary protein that was largely made from the waste products of butchering other cattle. It is difficult to imagine a more effective means of communicating disease from one animal to the next. Recently outlawed, this practice has been altered. Now, it is perfectly acceptable to feed animal parts from poultry and other species of slaughtered animals, but we are no longer allowed to feed cattle animal proteins from other cattle because it might contain the toxic prions that are implicated in Mad Cow disease. As a consumer of beef, I am appalled at the foolishness of these “adjustments” in feeding practices for cattle. As a celiac, I am equally appalled by the continued practice of advising humans to eat enormous quantities of grains. Look at any of the food guides published by various governments of industrialized nations. No part that I can see is of, by, and for the people. Just as humans are not well equipped to eat grains, cows are ill equipped to eat meats. The first priority of our food scientists, producers, and our government eating guides, should be the good health of the general population.

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.

Celiac.com 12/22/2018 - “Out I say. One, two, why then `tis time to do`t - Hell is murky!” Never considered myself Lady Macbeth, but I have had blood on my hands and sometimes screamed, ``Out all you damned itchy spots` in pure frustration. My story of being a celiac with dermatitis herpetiformis is one that nightmares are made of. Sit tight and you will see what I mean! My medical journey has been full of misadventures. My brother has often jokingly said, “M.D. does not stand for “Medical Divinity” and he is so right. I was misdiagnosed in my twenties as having irritable bowel disease after a busy specialist undertook to do a colonoscopy for me in between his regular patients and during my lunch hour working as a nurse. I took his word for it and rid myself of irritating foods like steaks and corn and cruciferous vegetables. I was preparing barbecues for my family, eliminating the meat and eating the hamburger bun. I was a busy nurse and active jogger. I loved hiking and canoeing. The medication I was given for my so called ‘irritable bowel’ was not working. One physician told me that when a physician does not know what is wrong with a patient’s gastro-intestinal bowel problems the all encompassing term ‘irritable bowel’ is often used. If the patient comes back again and again the label ‘depression’ is tacked onto her chart. Not all physicians are as blasé as the ones I have had to deal with, but I do warn you to be careful and check everything. I am writing this from the other side, and I have seen so many things that would ‘knock your socks off!’ Throughout my thirties I jogged early in the morning before my shift; often jogging off into the bushes, Kleenex in hand, hoping and praying no-one was around to see me taking a bathroom break. Those of you suffering from loose bowels because of ingesting gluten know only too well what I am talking about! We went out to our favourite Chinese Restaurant, time and time again only to make a “pit stop” at the nearby soccer pitch so I could retch up our dollars on the turf. I still received the same diagnosis, the same medication. Normally I weighed 100 pounds in those days and on a five foot one and a half frame my weight was not bad. (Heavy on the ½ inch!) Slowly my weight declined. Stress I was told - yet another diagnosis. Slowly I was limiting my foods to yogurts and sandwiches. Throughout my forties my problems exacerbated until the November before my daughter’s wedding. Like an explosion I had spots all over the back of my head, upper arms and thighs. Oh I itched, but when I scratched the tops off the sores they stung and hurt. It was hard to work as a nurse scratching your head. I am surprised that someone did not whisper a word to a doctor to have me checked for fleas. Fleas I thought and bought a bottle of Kwellada and dosed not only myself but my husband with it! The bedding was almost boiled, our nails soaked in Pinesol. All was to no avail. I was referred to an allergist whose nurse dealt with me more than he did. He rushed into the room, did not check my sores at all but suggested bed bugs. Agghh! Being a neat freak everything had to go except my husband! The November prior to my daughter’s wedding, and near the end of my forties, I was an itching bleeding mess. Of course I had a sandwich every day for lunch and found that I itched far more in the afternoon. My white nurse’s stockings were covered in blood at the back and on the way home from work my therapy was scraping a comb through my scalp and tearing all the spots apart. Immediately I arrived home my husband knew I would rush upstairs and grab a cool shower for the second time that day. The last Saturday in November after itching my way through trying on wedding dresses; can you imagine? Beautiful shop and conceited sales clerks looking askance at my legs. I had reached the end of my itching rope. The other physician in the two physician practice I attended was on Saturday call and I walked in. He examined my spots, actually looked at my scalp, asked me some very relevant questions about my condition, exited the examining room and came back with his Dorland’s Medical Dictionary, the guidebook for all doctors. Dermatitis herpetiformis, he shouted. “I am almost convinced of it.” He prescribed two to four Atarax for the itch, and four Prednisone - along with the specific instruction that I follow up with my family physician, his partner, on the following Tuesday. To be sure I was in that office immediately after work on Tuesday, scratching my head and rubbing my legs together as if to start a fire right there in his office! I indicated that I had seen his partner on Saturday, spouting my instructions. “Stress” he said. He didn’t seem to have even read the notes written by his partner. I was prescribed Loxapine, four Atarax, six Prednisone, and instructions to follow-up in one week. This is where I should tell you about Loxapine. It is a drug, often given to sedate the elderly in nursing homes. Very few hospitals prescribe it anymore because of its dangerous side effects. Most medical manuals will warn against prescribing it to peri-menopausal women of low weight, and a lot even warn against giving it to women at all. It also indicates not to prescribe it for longer than three months and to monitor it closely for signs of tardive dyskinesia. (I probably now know as much about this horrible side effect as any medical physician). One thing that the Medico-Legal Handbook of the Canadian Physicians states is that when prescribing a drug not designed for the condition it is being used to treat, the physician must list all the possible side effects of that drug. I can say with all honesty that if I had known of the possible long term side effect of tardive dyskinesia I would have asked if there were any other drugs for “itchy spots” without the significant risk of not only a disfiguring condition on the outside of my body but what it could do to my internal physiology. Don’t forget, I had not yet been referred to a dermatologist who would take the time to take a biopsy of these spots! Consider that I was driving thirty-miles a day to work on this sedating drug, along with the Atarax and Prednisone. I am amazed that I did not add to this cocktail of drugs a drink or two of my own, but thankfully not being a drinking person I persisted staying awake, scratching during the night and keeping my husband awake! The wedding in January went off without a hitch. This is surprising since my daughter seemed to think I was the wedding planner extraordinaire. At our March visit my husband came in with me, both gun barrels loaded. “Why hasn’t my wife been referred to a dermatologist? Why is her mouth turning and her speech slurred, her hands trembling and her head turning?” I had “DH” without the “D”. My physician seemed to wake up.”‘Whoa, how long has she been twisting her mouth like that? She has to go off Loxapine right away. That is one of the side effects of that drug.” I saw the dermatologist the next week! He asked a barrel of questions but told me that since I was now up to ten Prednisone a day. I would have to wait two months in order to be weaned off that drug so he could biopsy the dreadful spots which seemed to have a life of their own. They marched in a line like soldiers and I was scarred where healed spots had been. My weight was now 89 pounds and my stomach muscles were as tired as I was from retching into any available toilet. After the three months were up biopsies were taken and I received a lesson about IgA deposits. I was told that in the ‘olden days’ one way of telling if a person had dermatitis herpetiformis was to put a few drops of Iodine close to an area of the lesions. Within a few days some more spots would appear, because apparently these DH spots are present under the skin and show their ugly itchy selves with Iodine. Did I try it? Of course I did! My test results were positive, silly person that I was, but thankfully the hospital laboratory results were also positive. To be thorough the dermatologist wanted me to have a bowel biopsy. Unfortunately the first gastroenterologist failed to biopsy the Jejunum part of the bowel. I had by this time searched the Internet for myself. (Oh why hadn’t I done it sooner with the Loxapine?!!) I knew about flattened villi and had started following a semi-gluten free diet. Somewhat deflated and now struggling with patients being unable to understand my speech, not being able to draw up a needle or even, when assigned to a corner to write up charts my once beautiful writing was illegible. I am surprised I was not breathalysed. Thankfully my work ethic was such that I was more to be pitied. I was referred to another gastroenterologist who did biopsy the jejunum part of the bowel and the results came back positive for celiac disease. Anyone of you who has undergone these tests knows that they are exceedingly unpleasant. Yet I was happy because I was vindicated. The dermatologist placed me on the drug Dapsone - four a day for the first week with follow-up in one week. I arrived back at his office with flowers, not in my head, in a bunch in my hands; I was ecstatic! The spots were almost gone, just some residual spots at the back of my head. I was immediately put on a gluten free diet. I was officially a celiac with dermatitis herpetiformis. The dermatologist told me that I had a severe case and it was unlikely that I would ever be able to go off Dapsone. It would be my partner for life. But I did not know how difficult the diet can be when you are a novice. He referred me to one of the top internists in B.C. who, of course, agreed with his diagnosis but also told me how to rid myself of residual stubborn “spots” at the back of my scalp. ‘Do the 5-4-3-2-1- regime with Prednisone and Dapsone and this should clear up the rest of the spots. {**You can also do this with outbreaks I was told**} Read that sentence in brackets with stars, hold the thought but ignore the instructions. Now I had another monster to deal with, far more ferocious than the DH. I was referred to the Movement Disorder Clinic at U.B.C., a Clinic I still attend to this day. I sat with Parkinson patients as well as multiple sclerosis patients and was quite terrified about my prognosis. I was assessed by the very head of the clinic who was quite angry that a “young woman” of my age was administered Loxapine for “spots” when there are so many other medications on the market one can be given for itchy spots, and before a referral to a dermatologist. It was suggested I be placed on Tetrabenazine, a drug not even approved in the United States, and a drug with a possible list of side effects that petrified me. I walked out with a compilation of literature on the drug, but without a prescription, saying I would think about it and be back in two weeks. We read every article we could get our hands on about this drug. I was not going to risk going on any neuroleptic drug. I loved my job and had to say a very tearful good-bye to it fifteen years earlier than planned. Having tardive dyskinesia I was clutzy, falling down stairs, not lifting my leg high enough to rise to the sidewalk, having my head turn to the left while sitting at a stop sign and having to wait until it returned voluntarily to full frontal position. I thank God that I had a medical insurance package in place which I had been paying into for years. I became a poster woman for medical insurance policies and instructed everyone I knew to become fully knowledgeable about any drug they were taking, to ask questions before popping any pill into their mouth. I returned in two weeks. It was not only hard for me to look in the mirror to see my facial gesticulations it drove my husband to tears watching me. Tests had shown that the drug damage had attacked me primarily on my right side, my right lung, oesophagus, and right hand more than left. Both eyebrows seemed to move up and down of their own volition though, as did my forehead. Speaking of head, my head was like one of these wooden dolls that are worked from inside. It turned to the left when it wanted to. My TMJ (temporomandibular joints) grabbed like a snapping turtle, and my dentist had a very difficult time even assessing my teeth for splints. I eventually cracked a lot of my teeth and eventually had to be assessed by an ENT (ear/nose and throat specialist) who injected Botox into my oesophagus to ease the oesophageal stricture so that I could swallow foods. I fell, down a particularly steep slope at our trailer at Birch Bay, landing right on my head and breaking three ribs. I struggled with pain in my right forehead, right neck and right shoulder. My physician taught my husband to administer Lidocaine injections into the back of my neck at the hairline and into my shoulder muscle. This actually stopped the pain for a while, but why could they not figure out what was causing it? I made trips to an acupuncturist, a kinesiologist, and a physiotherapist. They were all convinced they had the answer. People at the pain clinic at St. Paul’s Hospital convinced me that it was connected to the brain and the tardive dyskinesia damage but all they had to offer me was drugs and even marijuana cookies. It is hard to make marijuana cookies without flour and they really stink up your kitchen. Since my husband made them for me he ended up getting high and did not enjoy the experience. Come to think of it, neither did I. People at the U.B.C. Movement Disorder Clinic convinced me that I had dystonia on the upper right part of my body. An impairment of the muscular tonus I was told, and “wow” there was a specialist at the Vancouver Hospital who was doing wonders with this problem. It involved drilling two holes in the top of the head, while you are awake, but with freezing around the area, inserting leads down into a box placed in the stomach. To say this was unpleasant puts it mildly. When my husband saw me prior to surgery with this helmet screwed to my forehead he cried. When they turned the machine on I received electric shocks down my arms. We tried this numerous times. Both the doctor and his assistant thought I was just saying this because I did not like the appearance of the holes in my head or the leads down my chest or the box in my stomach. We did blind studies where my husband would not tell me when he turned the “box” on. To no avail! I would have done anything to rid myself of yet another dreaded pain! I needed to see an internist and two psychiatrists in order to have the box and leads removed from my body. I passed the psychiatric tests to my amazement and the box and I parted company. I was then seen by another pain clinic specialist who felt I had a trapped nerve from the fall. When you fall on your head, a heavy object, it can trap a nerve in the neck, particularly at the C1/2 level. His test proved positive and he referred me to one of only two anaesthesiologists in B.C. who do the procedure called radio frequency lesioning. I had the first surgery last September. Because of my weight, which was now only 82 pounds, he felt he should not turn the machine up to the highest setting. They call this pulse radio frequency lesioning. Now aren’t you learning a lot from this article about celiac disease and dermatitis herpetiformis? I was wrapped in ice for two months but sadly the procedure failed. I was told that it needed to be turned to the highest setting. January 4th the procedure was repeated. The insertion of a needle into the spine while one is awake is also unpleasant needless to say, but I was desperate. I was again packed in ice until February when life began to look pretty good. Wow! Clothes did not fit me and there was a whole world of shopping out there to do! I had become slothful with my celiac diet, licking envelopes when I knew the glue contained flour, baking goodies for my family and sifting flour of all things. To counteract the appearance of DH spots in my scalp, horrid armies of them, I did the 5-4-3-2-1 treatment. However, I had been using Lidocaine injections for the pain in my neck. I found I could not climb stairs without becoming breathless. I was confused and weak. “Likely from two surgeries” I told myself. My husband commented that my skin was grey and my lips blue. I attended my general physician - another one. Oh my, I dread even telling you this! He thought I might have sleep apnoea. My husband picked up the machine for the test for two days. He dropped it off at 10:15 A.M. and by noon hour the oxygen people were back at our house with an oxygen tank. I was told my GP was going to refer me urgently to an internist. I dragged the lead of this oxygen tank around with me for a week until my husband became angry. He went himself to see my GP who went “next door” in his building to the Internist who saw me the next day, Saturday. Upon taking my history she suspected that I had Methemoglobinemia and suggested we both walk over to the hospital next door right away. I was put in the I.C.U. and given oxygen. After numerous blood tests were taken my Methemoglobinemia results came back at 26.5. Death occurs at 40 which could have been within a week to ten days. I was given methylene blue. It was flushed through my veins and it burned like a hot iron! I was given two units of packed red cells. For you celiacs with dermatitis herpetiformis, methemoglobinemia is when the blood is converted to another chemical that cannot deliver oxygen to tissues, called Methemoglobin. It was explained to me that it was like all the oxygen in my blood was put in a closet with the door locked. They took me off my beloved Dapsone but after three days the spots were back and as bad as when I was first diagnosed, all over my arms and legs, scalp and even face. So I was put back on the Dapsone with strict instructions not to use Lidocaine, and given a list of other drugs and foods that can cause Methemoglobinemia, like Benzocaine and Prilocaine, and even some cold cuts with nitrates in them. Upon discharge we were fearful that this would happen again so my husband purchased a mini SAT (oxygen saturation) machine from a medical store that sells on the Internet. It is the cutest little machine! You stick your finger into its jaw and it tells your SAT level as well as your pulse rate. For just $39.99 you cannot beat it. March was our anniversary and our children felt we needed to celebrate. They bought one of these mid-week packages to the Harrison Hot Springs Hotel, with dinners included. We do not go out for meals because I am embarrassed at the inquisition I have to give the waitress each time. We were reassured the first night that there was no gluten in my meal - none whatsoever. Ha! I was up all night! You know the drill. By noon hour the next day I was so sick and my SAT levels kept dropping. A normal SAT level should be about 98, mine is normally 92, but it went from 92, to 87 to 83 until my husband said, “Let’s go”. We drove home to our hospital. Doctors there are now familiar with my problem. But this time I had pneumonia and other abnormal blood levels. It turned out that I had the type of pneumonia that is caused by swallowing food into the lungs. That was from all the vomiting I had done the previous night of course. I was admitted to hospital for eight days this time. That ended in April. I am now able to take Dapsone, but in conjunction with Cimetidine, which is actually a drug for gastritis or ulcers. I still check my SAT level weekly and have been told if it drops below 90 I am to go to the hospital for testing. I am fearful of restaurants because so much of their food products come in large tins and they don’t know what ingredients are in them. When I find a restaurant I can trust, I telephone the Vancouver chapter of the Canadian Celiac Association and tell them. There are two stores I know that sell gluten free foods and even a bakery in Vancouver close to where my daughter works, but mostly I make my own gluten free recipes. The hospital dietician had so little information on celiac disease and recipes she asked me to fax her some of my information and recipes. I have become the “Betty Crocker” of celiac food and the “know” person for DH, trapped nerves and a barrage of diseases and problems that I did not have. Health nightmares? I have had enough and want to get back to my garden and my love of writing. I deserve it!

Celiac.com 04/28/2021 - Dermatitis herpetiformis is an external skin manifestation of gluten sensitivity. In people with dermatitis herpetiformis, an autoimmune response targets transglutaminase 3 (TG3) in the skin. Transglutaminase 2 (TG2) is a celiac disease autoantigen marked by the presence of enteropathy, while TG6 is the autoantigen that plays a role in neurological manifestations of gluten sensitivity. Researchers don't fully understand the interplay between B cell responses to these three transglutaminases in developing the clinical spectrum of disease manifestations. They also do not fully understand the individual or combined diagnostic and predictive value of the respective autoantibodies. To get a better idea of those values, a team of researchers recently assessed rates of TG6 antibodies in a group of patients with dermatitis herpetiformis. The research team included Marios Hadjivassiliou, Timo Reunala, Kaisa Hervonen, Pascale Aeschlimann, and Daniel Aeschlimann. They are variously affiliated with the Academic Department of Neurosciences, Sheffield Teaching Hospitals NHS Trust and University of Sheffield in Sheffield, UK; the Department of Dermatology, Tampere University Hospital in Tampere, Finland; the Celiac Disease Research Center, Tampere University and Faculty of Medicine and Health Technology in Tampere, Finland; and the Matrix Biology and Tissue Repair Research Unit, College of Biomedical and Life Sciences, School of Dentistry, Cardiff University in Cardiff, UK. The team looked at rates of TG6 antibodies in a group of 33 patients with dermatitis herpetiformis. Thirteen of the 33 patients (39%) were positive for TG6, 11 for IgA, three for IgG, and one for both. This was substantially higher than the 14% rate seen classic celiac disease cases in a Finnish population. Sixty percent of dermatitis herpetiformis patients with no enteropathy, ten patients in all, were TG6 positive, compared with 17% percent of those showing overt enteropathy, twelve in all (Marsh IIIB). Gluten-Free Diet Improves TG6 Antibody Levels After one year on a gluten-free diet, repeat testing showed that seven patients were TG6 negative, while 85% (11 of 13) showed reduced titers for TG6 antibodies. Four patients seroconverted and tested positive for TG6 antibodies at one year, due to the ongoing exposure to gluten. The team reports another patient who presented with encephalopathy leading to the diagnosis of celiac disease, who was intermittently adhering to a gluten-free diet. At baseline serological testing, the patient was positive for antibodies to all 3 transglutaminases. Eleven years later, he developed dermatitis herpetiformis, and eventually developed ataxia and peripheral neuropathy. Even though TG3 and TG6 autoantibodies are associated to certain disease expressions, TG2, TG3, and TG6 autoantibodies can be present across the spectrum of GRD patients, and may develop years before extra-intestinal symptoms appear. This supports the idea that gluten-dependent adaptive immunity is a necessary, but not sufficient condition for the development of organ-specific damage. TG6 antibodies seem to develop more frequently in patients with gluten intolerance, but, either there was no development of the molecular state driving the tissue damage in the gut, or more likely perhaps, a greater resistance to developing the phenotype in the first place. Read the full report in Nutrients 2020, 12(9), 2884

Celiac.com 01/28/2019 - Research shows that people with celiac disease have an increased risk of bone fractures, compared to the regular population, but there's not much good data on fracture risk in patients with dermatitis herpetiformis. A team of researchers recently compared self-reported bone fractures in patients with dermatitis herpetiformis against those with celiac disease. The research team included C Pasternack, E Mansikka, K Kaukinen, K Hervonen, T Reunala, P Collin, H Huhtala, VM Mattila, and T Salmi. In all, they looked at self-reported fracture rates in 222 dermatitis herpetiformis patients, and in 129 control subjects with celiac disease. The team provided a Disease Related Questionnaire and the Gastrointestinal Symptom Rating Scale and Psychological General Well-Being questionnaires to study members. They received 45 replies from the 222 dermatitis herpetiformis patients, and 35 replies from the 129 celiac disease control subjects. All patients had experienced at least one fracture. Overall, cumulative lifetime fracture rates were about the same for both dermatitis herpetiformis and celiac disease patients. Fractures More Common in Women with Celiac Disease However, when the team looked at the cumulative incidence of fracture after disease diagnosis, they found a significantly higher risk in women with celiac disease than in women with dermatitis herpetiformis. Acid Reflux and Proton-Pump Inhibitor Connection Interestingly, both dermatitis herpetiformis and celiac disease patients with fractures reported more severe reflux symptoms compared to those without. Dermatitis herpetiformis and celiac disease patients with fractures also reported using more proton-pump inhibitor medication. More research needs to be done to explore this connection. To sum it up, self-reported lifetime bone fracture risk is about the same for both DH and celiac disease patients. However, after diagnosis, fracture risk is higher in women with celiac disease than in women with dermatitis herpetiformis. This means that women with celiac disease need to work with doctors to keep a tight eye on bone integrity, even when eating a gluten-free diet. Source: Nutrients. 2018 Mar 14;10(3). pii: E351. doi: 10.3390/nu10030351

Celiac.com 10/06/2020 - One question we get often is about celiac disease and rashes. Specifically, is it common for people with celiac disease to have a rash? Skin rash alone is not a specific symptom of celiac disease. However, people with celiac disease can have higher rates of certain skin conditions that can cause rashes. Rashes are also not commonly in the top ten complaints of people with celiac disease. However, these seven common skin conditions are associated with celiac disease: Acne; Canker Sores (Aphthous Stomatitis); Dermatitis Herpetiformis; Dry Skin; Eczema; Psoriasis; and Rosacea. Dermatitis Herpetiformis (DH) is Common Cause of Skin Rash in Celiac Patients Dermatitis herpetiformis (DH) is a common extraintestinal manifestation of celiac disease, marked by itchy papules and vesicles on the elbows, knees, and buttocks. Dermatitis herpetiformis is a common in people with celiac disease, and is one immediate suspect for anyone with celiac disease who develops a rash. About 1 out of 8, or about 12 percent of people with celiac disease will also have Dermatitis Herpetiformis (DH). In fact, DH is now regarded as external manifestation of celiac disease in the skin. It is also possible for people to have DH and not have celiac disease, but everyone with DH should be screened for celiac disease. The good news is that most people with DH see significant improvement on a gluten-free diet. Moreover, patients with refractory DH see major gut improvement on a gluten-free diet. Some patients with celiac disease have complained of hives, but hives are not common in celiac patients. There have also been studies to show that six out of sixty patients (10%) with Non-Celiac Wheat Sensitivity (NCWS) suffered from contact dermatitis and nickel allergy, double the 5% rate seen in the control group. DH, Eczema & Psoriasis Often Improve with Gluten-Free Diet Other conditions that can cause skin rashes in celiacs (and non-celiacs) include eczema and psoriasis. As with DH, a gluten-free diet is becoming a more common treatment for eczema. People who are gluten intolerant also tend to have more advanced psoriasis. Like eczema, many people with psoriasis improve when patients follow a gluten-free diet. Herpes Zoster or Shingles and Celiac Disease People with celiac disease have a slightly higher risk of developing shingles (herpes zoster), which could also be triggered by a COVID-19 infection. Again, a rash all by itself is not a sign of celiac disease. However, if you have a rash associated with one of the above conditions AND you have celiac symptoms, such as nausea, vomiting, stomach upset, then you might want to consult a doctor about celiac disease.

Celiac.com 12/11/2020 - Researchers and clinicians have recently begun to understand dermatitis herpetiformis as an external, skin-affected form of celiac disease. Over 90% of people with DH have an associated gluten-sensitive enteropathy, but just 20% of dermatitis herpetiformis patients show classic gastrointestinal symptoms when first diagnosed. A team of researchers recently released a survey study describing the frequency of dermatitis herpetiformis among patients included in the iCureCeliac network, along with demographics of patients with dermatitis herpetiformis and underlying celiac disease. The research team included Bridget E. Shields, MD; Joel M. Gelfand, MD, MSCE; Lynne Allen-Taylor, PhD; and Misha Rosenbach, MD. They are variously affiliated with the Department of Dermatology, Perelman School of Medicine, University of Pennsylvania, Philadelphia; the Department of Biostatistics, Epidemiology and Informatics, Perelman School of Medicine, University of Pennsylvania, Philadelphia; the Biostatistics Analysis Center, Center for Clinical Epidemiology and Biostatistics, Perelman School of Medicine, University of Pennsylvania, Philadelphia; the Deputy Editor, JAMA Dermatology Dermatologists may be the first to diagnose patients with celiac disease via their dermatitis herpetiformis, but very little nationwide data exists on the demographic characteristics of patients with dermatitis herpetiformis and celiac disease. Using a patient-powered research network (PPRN), their study describes the rate of dermatitis herpetiformis, records the demographics of patients with dermatitis herpetiformis and underlying celiac disease, and assesses the amount of gluten-free diet counseling received by patients with and without dermatitis herpetiformis. The understanding of dermatitis herpetiformis as a definite external manifestation of celiac disease is new, and offers powerful insight into new treatment approaches for dermatitis herpetiformis. Read more on their study in JAMA Dermatology. Published online October 7, 2020.

Celiac.com 07/09/2020 - Celiac disease is an autoimmune disease that occurs in genetically predisposed individuals. It is estimated to affect 1 in 100 people worldwide, and is treated by a gluten-free diet. However, there’s also dermatitis herpetiformis (DH) to consider, which is basically celiac disease of the skin instead of the intestines. It’s a skin condition characterized by groups of itchy blisters that commonly occur on pressure points such as the elbows, the front of the knees, the buttocks, back, shoulders, face, and scalp. However, they can occur anywhere on the body. Dermatitis herpetiformis is eruptions can be very painful, and the itchy rashes may progress to red, raised patches of skin that can develop into small, watery blisters. To get a DH diagnosis you need to make an appointment with a gastrointestinal (GI) doctor and a dermatologist. Note that you need to continue to consume gluten until all tests for celiac disease and DH are concluded, and for DH a doctor will take a skin biopsy. (It should heal relatively quickly, with very little scarring.) Then, a lab will use dye to see if you have IgA in a particular type of pattern. This tells your doctor whether you have dermatitis herpetiformis or not. They can help you to get the inflamed reaction under control with cortisone (a steroid), while you simultaneously begin your lifestyle adjustment of not eating wheat, rye, barley, oats, and even dairy (specifically casein because the protein is very similar to that in gluten.) After diagnosis you will need to maintain a 100% gluten-free diet, and you’ll need to use topical products that are gluten-free as well. Be sure to double check your makeup (lipstick, mascara, eyeshadow, eyeliner, blush, etc.), hand lotions, facial wipes, detergents, soaps, sanitizers, perfumes, bug spray, sunblock, and much more. Basically, what it comes down to is reading all ingredients, checking FAQ sections on websites, and calling the manufacturer directly to question cross contamination procedures. Taking these extra precautions will help to keep your skin clear, smooth, and free from continuing outbreaks. However, even with doing all of the above the healing time can be different for everyone. Some individuals heal in a few months, while some take a couple of years. Even if you’re clear for years but accidentally get gluten from cross contamination, you could suffer another outbreak. This is why it’s very important to be extra focused on your nutrition and beauty products after a positive DH diagnosis. A picture of DH from one of our forum members "amine33". References: gluten.org celiac.org Forum discussions about dermatitis herpetiformis.

Celiac.com 12/20/2019 - A recent site reminded me again to check my cosmetic drawer, or as my husband calls it, “my chemistry set". Have you researched your make-up ingredients for the possibility that some of those creams, powders, oils or gels contain gluten? I did this briefly about ten years ago, but I was lax with it because the ingredient lists were so small in size, in another language, or had some "weird" ingredients that I could not even pronounce, let alone find out if they contained gluten. Now we have the Gluten Free RN Web Site, and the author is working hard to separate the cosmetics into two separate areas “Safe for the Celiac,” and an area that covers products to avoid. The Gluten Free RN answers a simple "Yes" to the query about whether these cosmetic products should be avoided. She also states that most common cosmetics DO contain some form of gluten and can cause symptoms, especially for people that are very sensitive or have the dermatitis herpetiformis (DH). I will do a little refresher course for regarding DH. The cause is the body's immune system reacting to a protein that is found in wheat, barley and/or rye. Ingestion causes the rash to develop, but along with the rash may come a sense of feeling unwell, bloating stomach, headaches, and of course the intense itch, which comes from the blistery rash that begs to be scratched. But if you should take the scab off (from your last foray itch), it can sting so badly that will you beg for help! After contacting some of the major cosmetics companies to see if their shampoos, they confirmed that hair spray, mascara, lipstick, eye shadow, makeup, etc., might contain wheat, rye, barley, or oats. For those who are very sensitive even small amounts can cause symptoms. Another concern for those with DH is phosphates in shampoo, which wreaked havoc on my scalp and caused sores. I have checked with other DH patients and they have had the same issue. Once I switched shampoos my scalp began to heal. Cosmetic Ingredients that May Contain Gluten: Cyclodextrin, Dextrin Dextrin Palmitate Hydrolyzed Malt Extract Hydrolyzed Oat Flour Hydrolyzed Vegetable Protein Hydrolyzed wheat Flour Hydrolyzed Wheat Gluten Hydrolyzed Wheat Starch Secale Cereale ((Rye) Seed Flour Tritidcum Vulgare (Wheat Germ Extract) Triticum Vulgare (Wheat) Germ Extract Triticum Vulgare (Wheat Gluten) Triticum Wheat Amino Acids Wheat Germ Glycerides Wheat Germanidopropalkonium Chloride Wheat Protein WheatgermamidopropylI Ethydimonium Ethosulfate Yeast Extract If any of your cosmetics contain any of the above ingredients it could cause further DH outbreaks or other issues. The skin is porous, but even more concerning are the mucus membranes around your lips, mouth and nose, where you could be applying small amounts of gluten directly onto your skin and hands. Cosmetic Companies like EpiLynx, Joelle Cosmetics and Menave claim to be 100% Gluten Free and celiac disease friendly. They have mineral makeup and are dedicated to providing good quality gluten-free products. These gluten-free cosmetic companies are going to be more expensive than Walmart, Fred Meyer etc., but it comes down to how much is your health worth? Dr. Fasano tells us of a woman named Tania Fleming, of Springfield, Pennsylvania who developed the rash nine years ago. Dr. Fasano wrote in the Allergic Magazine Then while taking a long road trip vacation, the itching became unbearable. "It was extremely uncomfortable. That is what sent me over the edge", she says. "It itched insanely"." Her description is no exaggeration, Dr. Alessio says, originally the rash was thought to be a psychiatric condition because of an association with suicide. When we did not know what was going on, many people with DH attempted suicide because nothing gave them relief. Obviously if gluten in cosmetics has the potential to cause such extreme issues in those who are sensitive, then those affected should seek gluten-free versions just to be on the safe side. Although gluten-free cosmetics may be more expensive, the alternative of using products that may not be safe for you just isn't worth it. Why risk getting sick, or even worse outcomes when gluten-free versions are readily available?

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.

Celiac.com 03/26/2019 - People with gluten intolerance often have non-gastrointestinal symptoms, including several common skin conditions. If you have celiac disease or other sensitivity to gluten, a gluten-free diet may help to improve symptoms of these associated skin conditions. These Seven Common Skin Conditions are Associated with Celiac Disease Acne Links between celiac and malabsorption, as well as hormonal upset can contribute to a greater production of acne. Many birth control pills boast promises of clearer skin, their method is through hormone manipulation. Because many who suffer from gluten intolerance also experience a disruption of normal hormone function, this disharmony can lead to problems with acne. There are some anecdotal reports that acne can improve on a gluten-free diet. Canker Sores (Aphthous Stomatitis) Technically, the mouth is not part of the skin, but we include canker sores, since they are one of the most common non-gastrointestinal celiac symptoms, and easily visible in the mirror. Nearly 20% of people with symptomatic celiac disease had canker sores as one of their symptoms. In many cases, these canker sores are recurrent, and can be one of the few or only signs of celiac disease. Dermatitis Herpetiformis This painful, blistery condition can be very stressful, especially when misdiagnosed. An inflamed, itchy rash, dermatitis herpetiformis begins as tiny white filled blisters or red spots around hair follicles. Trying to hide or disguise DH, as well as trying to treat it when misdiagnosed can be incredibly stressful for a person. Read more on celiac disease and dermatitis herpetiformis at Celiac.com. Dry Skin Also correlated to malabsorption, dry skin is a very common complaint amongst those with celiac. But this condition is one that many people see even after the prescribed treatment of a gluten free diet. Why? Vitamin E rich grains are vital to maintaining skin harmony, but since many who are gluten intolerant begin avoiding grains completely—even those grains that are gluten-free, getting that important Vitamin E in their diets can become a challenge. Eczema Eating a gluten-free diet is becoming an increasingly popular mode of treatment for eczema. Those who are gluten intolerant also tend to have more advanced psoriasis.Psoriasis—Like eczema, psoriasis has in many cases shown improvement when the person is put on a gluten free diet. In Scott Adams’ 2004 article, he also mentioned that psoriasis in those with celiac tends to be more severe. Psoriasis Psoriasis is a common, chronic, genetic, systemic inflammatory disease that usually manifests as itchy plaques of raised red skin covered with thick silvery scales. Psoriasis is usually found on the elbows, knees, and scalp but can often affect the legs, trunk, and nails. There’s been very little research done on the association between celiac disease and psoriasis. That means there’s just not much good information. Some people with psoriasis claim to see benefits on a gluten-free diet, but that is purely anecdotal. One interesting finding recently was that psoriasis patients who do not have celiac disease or non-celiac gluten sensitivity commonly show high levels of antigliadin IgA antibody, and would likely benefit from a gluten-free diet. Some earlier studies have shown that celiac disease antibodies correlate with psoriasis activity, though little follow-up has been done, so there’s still a lot of confusion about any connection to celiac disease? Read more on celiac disease and psoriasis at Celiac.com. Rosacea Rosacea is a common inflammatory skin condition that shares the same genetic risk location as autoimmune diseases such as type 1 diabetes mellitus (T1DM) and celiac disease. Some studies have shown high rates of immune conditions in rosacea patients, while others have shown a connection between rosacea, celiac and other diseases. Still, more research is needed to nail down the connection. The most recent study showed that rosacea is associated with T1DM, celiac disease, multiple sclerosis, and rheumatoid arthritis in women, whereas the association in men was statistically significant only for rheumatoid arthritis. Again, for people with celiac disease, or a sensitivity to gluten, symptoms of these skin conditions may improve or disappear on a gluten-free diet.

Celiac.com 04/12/2019 - In this 4-part Series, we’re going to look at the world of gluten sensitivity, what the current science tells us, the frustrations gluten sensitive and celiac patients often experience, and how to use the science in getting healthier. Part 1: Why the Tests are Often Wrong Part 2: Why Don’t I Feel Great on a gluten-free diet: Cross-Reactive foods Part 3: Why Don’t I Feel Great on a gluten-free diet: the Intestinal Milieu Part 4: Why Don’t I Feel Great on a gluten-free diet: Invaders in the House Many of us believe that the toxic peptides of gluten found in wheat, rye and barley may detrimentally affect any tissue in the body and are not restricted to the intestines. As a matter-of-fact, one of the ‘mantras’ of the Gluten Sensitivity Network comes from an 8-year old article: “That gluten sensitivity is regarded as principally a disease of the small bowel is a historical misconception.(1)” There is a key word in this statement which I suspect emphasizes the Author’s message and sets the tone for this article (and this network movement). That key word is ‘principally’. Is Gluten sensitivity ‘principally’ a disease of the small intestine? Point-blank answer-no, it is not. For every Gluten sensitive patient with the symptoms of an enteropathy (classic celiac disease), there are 8 more with no GI symptoms(2, 3). And the importance of recognizing this? Unfortunately, too many doctors will tell their patients that if the intestinal symptoms are not severe, or if there is no advanced intestinal damage (total villous atrophy), then the patient does not need to be vigilant in avoiding gluten exposure at all costs(4). Many patients are advised to follow the World Health Organization or Food and Agricultural Organization Codex Alimentarius gluten-free diet, which allow up to 0.3% of gluten per 100 g of protein in foods, whereas others follow a strict GFD with no detectable gluten. However, trace amounts of gluten may be responsible for persistent symptoms in some patients with celiac disease. Up to 75% of patients with persistent symptoms despite a World Health Organization or Food and Agricultural Organization Codex Alimentarius gluten-free diet will improve when put on a ‘‘no detectable gluten’’ diet(5). We know that for gluten-sensitive patients, eating gluten will cause inflammation in the intestines, and often in other parts of the body(6, 7, 8, 9). The importance of ‘quieting down’ the inflammatory cascade from gluten exposure? Mortality in celiac patients is highest (6-fold higher) in those not adherent to a gluten-free diet. Non-adherence to a gluten-free diet was defined as eating gluten once-per-month(10). Vigilance is paramount. You can’t be a little pregnant. There is no convincing evidence that you can have a little gluten if you have gluten sensitivity. The ‘conundrum of gluten sensitivity’ is when patients know they have a problem with wheat, their doctors run the standard blood profile, and one of two things happens: -IgA anti-transglutaminase or anti-endomysial antibodies come back negative(11), or; -IgA anti-transglutaminase or anti-endomysial antibodies come back negative and anti-gliadin, or anti-deamidated gliadin antibodies come back positive and the doctor tells the patient “it’s okay to eat wheat because the tissue antibodies are negative”. The patient is left in a state of confusion. They don’t WANT to give up wheat. After all, they believe it’s a staple of life. And their doctor says it’s okay to eat it. Yet they know they don’t feel as well when they eat it. So many will rationalize “Oh well, it must be the stress of my life making me feel bad”, and they order their bagel. That’s the conundrum. Where’s the problem? The problem is the test. Gluten sensitivity is a systemic autoimmune disease with diverse manifestations(12). Celiac disease, or gluten-sensitive enteropathy, is only one aspect of a range of possible manifestations of gluten sensitivity. And yet, this enteropathy, ‘one of the most common lifelong disorders in both the U.S. and Europe(13), receives the lion’s share of focus to the point of ignoring other manifestations. Auto-immune disease, the 3rd leading cause of morbidity and mortality in the industrialized world(14), is ten times more common in a gluten sensitive enteropathy than in the general population(15). The correlation is undeniable. The exact mechanisms of how this correlation manifests is being investigated intensively. What we can say, with a good deal of research behind us, is that the toxic peptides of gluten may act as a trigger in the development of the auto-immune mechanism (the immune system attacking our own tissues). Traditionally, doctors do not recognize this connection and wait for the accumulated damage from the immune system attacking our tissue (our thyroid, or our brains, or our skin, or…), they wait until the damage is extensive enough that there are obvious symptoms, and then we receive a diagnosis of an auto-immune disease (celiac disease, Hashimoto’s thyroiditis, type 1 diabetes, systemic lupus, inflammatory bowel disease, inflammatory skin diseases, ….)(16). Thus, the burden on society imposed by gluten sensitivity is difficult to overestimate. Earlier identification might result in earlier treatment, better quality of life and an improved prognosis for these patients(17). The diagnosis of gluten sensitivity has been proposed to include not just intestinal damage (celiac disease), but also gluten-reactive patients without intestinal lesions. From the skin (dermatitis herpetiformis, psoriatic arthritis, alopecia areata, dermatomyositis, cutaneous vasculitis,), to the muscles (inflammatory myopathies), to the brain (gluten ataxia, altered neurotransmitter production, schizophrenia, anxiety, depression, attention deficit disorders,…) to the nerves (peripheral neuralgias, carpal tunnel syndrome, idiopathic neuropathies,…), and beyond. Pathology in response to gluten exposure can occur in multiple systems without evidence of intestinal damage(18-27). Now, what about this conundrum? The tests are negative, yet the person feels better when they do not eat gluten. Many studies have validated the sensitivity and specificity using anti-endomysial and/or anti-transglutaminase antibody testing to identify celiac disease(28, 29). This means that the science says these tests are very, very accurate. Then how is there a conundrum? Here’s the problem: the definition of celiac disease requires total villous atrophy(30). Not partial villous atrophy; not increased inflammation without any visible atrophy. The definition of celiac disease requires total villous atrophy. Thus, when researchers look at populations who have celiac disease confirmed by biopsy, and look to see how accurate the blood tests are, they come up with percentages above 95%, because they’re only including people who have total villous atrophy in their study group-because that’s the definition of celiac disease. If we were to expand the definition of celiac disease to include those with partial villous atrophy, or include those who currently show only the mechanism that wears down the villi (increased intraepithelial lymphocytes), then the sensitivity and specificity of anti-endomysial or anti-transglutaminase goes down, in some studies dramatically down, to as low as 27-32%(31, 32, 33, 34). So do we want to base our health guidance and decisions on blood tests that are limited to identifying celiac disease at its end stage of intestinal deterioration (total villous atrophy)(35, 36)? Or would we want to include testing that has a much bigger picture in mind and identifies gluten sensitivity inside and outside the intestines and at earlier stages? If we recognize the fact that gluten sensitivity may manifest as celiac disease, or it may manifest outside of the intestines(37), one of the ways of expanding our diagnostic range is to focus on whether or not our immune system is saying that gluten is a problem. We may know where the problem is manifesting, or we may not. But if our immune system is saying “We’ve got a problem here”, it is likely worth listening to. As a comparison, if your car is running fine on the highway at 60 miles per hour, do you listen when the immune system of the car (the dashboard gauges) says “we’ve got a problem here”, and the hot light has lit up, or do we say “the car’s running fine-I don’t see or feel any problem”, and keep driving? I think most would agree that is not a very wise move. The same is true for your body. You may ‘feel’ a problem; you may not. We’ll talk more about that in a future article. For now, the point I want to make is that we will benefit from ‘listening’ to what our immune system is saying to us. We just have to be able to hear what it’s trying to say. The problem is accurate communication The current blood test that every laboratory offers in looking for an immune reaction to the gluten fraction of wheat is elevated antibodies to gliadin or deamidated gliadin - every laboratory. And there are many studies that have shown that looking for elevated antibodies to gliadin is not as accurate in identifying celiac disease as looking for elevated antibodies to transglutaminase or endomysial antibodies. Why? Because sometimes the antibodies to gliadin are positive and the biopsy shows there is no celiac disease. And sometimes the gliadin antibodies are negative and the biopsy shows there is celiac disease. Thus, the consensus in the scientific community is that looking for antibodies to wheat (gliadin) is not sensitive enough when looking for celiac disease. You can’t rely on it. Now that doesn’t make much sense, does it? If the gluten peptide is the problem, why can’t we measure the immune reaction to it when other gauges on the dashboard are hot? Two reasons: Researchers tell us it is “inappropriate” to compare gliadin antibodies against transglutaminase or endomysial antibodies because gluten sensitivity can exist without villous atrophy. Thus the gliadin antibodies may be elevated (and often are) without recognizable celiac disease. It’s showing us a bigger problem than just Celiac disease. They’re not ‘false positives’. It’s the immune system saying “we’ve got a problem here” that is not currently manifesting in the intestines-it is likely manifesting somewhere else, such as in the brain or the nervous system(38). Identifying antibodies just against the fraction of gluten called gliadin is not thorough enough in looking for an immune reaction to gluten(39). Amino acids are the building blocks of protein. When we eat protein, any protein, it’s the job of the digestive system to break down that protein into 1, 2, or at most 3 amino acid peptides that are easily absorbed into the blood stream through the ‘cheesecloth’ of the intestines. When someone has gluten sensitivity, the gluten molecules in wheat, barley and rye are not digested into small enough molecules to easily fit through the cheesecloth, be absorbed into the blood stream, and they remain in larger peptides, sometimes very large peptides. These large peptides, called macromolecules, trigger the immune system to say “these are not good for me(40, 41)”. An exposure to a large peptide on a rare occasion would not likely have initially been a problem. But with pancakes for breakfast, a sandwich for lunch, pasta for dinner, toast for breakfast, a sandwich for lunch, croutons on the salad at dinner, day in and day out, eventually you’ve got a hot light on the dashboard that is reaching the critical stage(42). Then ‘boom’ your engine overheats and you begin to notice symptoms-perhaps in the intestines, perhaps in the joints, perhaps in the skin, perhaps in the skull (depression, anxiety, headaches), perhaps fatigue,….. So let’s get back to the large peptides left in the intestines due to an inability to digest the gluten molecule. We know there are many peptides of gluten result from poor digestion(43). One study identified over 60 putative peptides of gluten(44). Yet the current blood tests only test for one - gliadin. Studies have said that gliadin is the primary toxic peptide. But, only about 50% of celiac patients have antibodies to the gliadin peptide of gluten(39). The rest of the celiacs don’t. They have antibodies to other peptides of gluten(45). This is the reason for the conundrum-you test for it, the test only looks for antibodies to gliadin, the test comes back negative, and yet you ‘know’ you feel better off of gluten. It’s the test! In that example, the person does not react to the gliadin peptide-they are likely to be reacting to a different peptide of gluten. Why don’t laboratories test for other peptides of gluten? Good question. I do not know the answer to that. Some of the studies on this go back to the mid 1990’s. Probably a supply and demand issue for commercial laboratories. Well, no longer. There is a new blood test, looking at 12 different peptides of gluten-not just Gliadin. You can go to www.cyrexlabs.com or to my web site www.theDr.com to read more about this test. Looking at antibodies to 12 different peptides of gluten (including gliadin) will certainly increase the detection rate of the immune system saying “we’ve got a problem here with gluten”. We know celiac disease is due to sensitivity to the peptides of gluten found in wheat, barley and rye, many of the peptides in gluten-not just to gliadin. And now, another diagnostic tool has been added to your doctor’s repertoire assisting in accurately identifying gluten sensitivity with or without the serious end-stage of tissue destruction-total villous atrophy. And my personal prayer is that as a result of this expanded test looking for a reaction to gluten, we no longer miss those with earlier stages of celiac disease and gluten sensitivity thus being able to calm down the ‘fire in the belly’, the hot light on the dashboard, before the engine blows up. Before the diagnosis of attention deficit hyperactivity disorder, before the diagnosis of autoimmune thyroid disease, before the diagnosis of type 1 diabetes, before the diagnosis of migraines, before the loss of a pregnancy,…. and doctors will have the tools to truly guide their patients in increasing their health - tuning the engine before it blows up with a diagnosable disease. So our bodies can carry us through life purring instead of rumbling along. References: 1. 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