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  1. Yvonne (Vonnie) Mostat

    Out, Damned Spot!

    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!
  2. Celiac.com 12/18/2018 - Prescriptions for gluten-free food will no longer be part of the UK’s vaunted national health care program in all places, due in part to the widespread availability of gluten-free foods at regular markets, and the high costs of maintaining the program. Starting Monday, December 3rd, 2018, gluten-free food will no longer be routinely available on prescription from any GP practice in the "Greater Nottingham" region for patients with celiac disease or dermatitis herpetiformis: a skin condition linked to celiac disease. Patients with such prescriptions, including children, will be notified by mail of the pending changes, and will receive information, help and support for managing their gluten-free diets. Coming at a time of "severe financial pressures", the decision ostensibly concerns patients in Nottingham, Rushcliffe, Gedling, Broxtowe and Hucknall, where patients were eligible for a mix of bread and flour each month. In the city, patients could get a range of products like bread, pasta, mix and cereal. Explaining the decision, Dr Hugh Porter, chair of the Nottingham City Clinical Commissioning Group, said "The cost to the NHS of a loaf of gluten-free bread is much higher than those bought in a supermarket.” Dr. Porter also adds that the Commissioning Group is planning a detailed evaluation process “to assess the effects of these changes over the coming year."
  3. Celiac.com 11/07/2018 - A team of researchers recently set out to explore the relationship between dermatitis herpetiformis, as a common extraintestinal manifestation of celiac disease, and a gluten-free diet as a path to overall dermatitis herpetiformis improvement. The research team included Timo Reunala, Teea T. Salmi, Kaisa Hervonen, Katri Kaukinen and Pekka Collin. They are variously affiliated with the Celiac Disease Research Center, Faculty of Medicine and Life Sciences at the University of Tampere, the Department of Dermatology, Tampere University Hospital, the Department of Internal Medicine, Tampere University Hospital, and with the Department of Gastroenterology and Alimentary Tract Surgery, Tampere University Hospital in Tampere, Finland. Dermatitis herpetiformis is a condition marked by itchy papules and vesicles on the elbows, knees, and buttocks. Dermatitis herpetiformis is a common in people with celiac disease. People who have just dermatitis herpetiformis alone rarely have obvious gastrointestinal symptoms. Dermatitis herpetiformis is easily diagnosed by immunofluorescence biopsy showing pathognomonic granular immunoglobulin A (IgA) deposits in the papillary dermis. One theory currently in play is that dermatitis herpetiformis is triggered by celiac disease in the gut and eventually develops into an immune complex deposition of high avidity IgA epidermal transglutaminase (TG3) antibodies, together with the TG3 enzyme, in the papillary dermis. The age at which people are diagnosed with dermatitis herpetiformis has risen steeply in recent decades to the current average of 40–50 years. The researchers found that the ratio of dermatitis herpetiformis to celiac disease is 1:8 in Finland and the United Kingdom (U.K.). Additionally, the incident rates of dermatitis herpetiformis are currently 2.7 per 100,000 in Finland and 0.8 per 100,000 in the U.K., is decreasing, whereas incidents of celiac disease are on the rise. One positive finding is that Dermatitis herpetiformis patients who are on a gluten-free diet face an excellent long-term outlook, with an even lower mortality rate than the general population. Read more in: Nutrients 2018, 10(5), 602; doi:10.3390/nu10050602
  4. The following was written by Dr. Joseph Murray, one of the leading USA physicians in the diagnosis of celiac disease (celiac disease) and dermatitis herpetiformis (DH). Dr. Murray (murray.joseph@mayo.edu) of the Mayo Clinic Rochester, MN, is a gastroenterologist who specializes in treating Celiac disease: In response to your questions about DH, The following represents my views about this curious and very itchy condition. In general DH is a severely itchy skin condition that often starts abruptly, affecting the elbows knees buttocks and scalp and the back. It usually starts as little bumps that can become tiny blisters and then are usually scratched off. It can occur in one spot only but usually occurs in many different areas. The condition is related to the deposit under the skin of IgA deposits. These occur in response to the ingestion of gluten in the diet. However, once deposited there, they are only slowly cleared by the body even when the individual is gluten free. While most individuals with DH do not have obvious GI symptoms almost all have some damage in their intestine. They the potential for all of the nutritional complications of celiac disease. The diagnosis is made by taking a skin biopsy and performing immunoflorescence studies on it (a specialized type of stain in major laboratories) The test is usually reliable but it takes a significant dedication to detect early cases where there is a short history of rash rather than years or months of rash. It is unusual to develop DH after the start of a GFD for celiac disease. About 5 % of celiac disease patients will develop DH usually in the first 6-12 months. This probably reflects the long lasting nature of the deposits under the skin. Treatment for DH is twofold. (1) Remove the cause: gluten. (2) Suppress the skin response with drugs such as Dapsone or some other sulphones. The latter is the most common treatment used as it is rapidly relieves the itch. However there are some side effects associated with these medications and they need to be taken under medical monitoring with blood tests to detect side effects. It is my practice that DH should be treated with a gluten-free diet for life and use of drugs to get immediate relief in the short term. It is usually possible to get patient off the Dapsone after several months of a strict gluten-free diet. The most common complication of DH is scarring which usually fades with time. Occasionally there can be secondary infection from scratching. There is probably a slightly increased chance of malignancy in those with DH who are not on a gluten-free diet. Several physical triggers are known to set off an attack of DH, especially exposure to iodides and bromides which are contained in household cleaners. A very good reference for DH is available from the GIG in Washington.
  5. Celiac.com 09/13/2016 - Six times from 2003 – 2005, I had a mysterious full-bodied, itchy, blistery rash that landed me in the emergency room the first time, where seven doctors shook their heads. The ER physicians agreed that it was a "systemic chemical reaction" and tried to identify what I could have been exposed to. A dairy allergy was ruled out immediately since I have been completely dairy-free for twenty years. For the next three years, between hiding from the world for the ten days of intense itching and for the six weeks it took my skin to heal after an outbreak, I saw numerous dermatologists, internists, gastroenterologists, allergists and chiropractors. No one could figure out what was causing this miserable rash. I finally met the "best diagnostician" according to Denver's 5280 Magazine who told me he would figure out what was causing my plight, but that it wouldn't be fun. At that point, I was willing to take any test to identify what my enemy was. I endured ninety-eight needle sticks (who's counting?) eight skin biopsies, invasive scopes and tests for allergies, rheumatoid arthritis, diabetes, thyroid disease and a host of other procedures. The skin biopsies erroneously concluded that I had scabies. Scabies are biting mites that leave bumps on the skin. It couldn't have been mites, because my husband, who lives in the same environment, didn't have a bump on his body. There was only one test that I did not pass – elevated levels of IgG antibodies in my blood. My doctor suggested that the rash could be correlated with gluten consumption and recommended that I try a gluten free diet. After being vigilant for several months, five out of seven long-term chronic complaints, including the rash, gradually went away. Here's my understanding of the DH lifecycle. An intestine that cannot break down the protein gluten leaks it out of the intestine and into the bloodstream. The blood sees this as a foreign protein and over-produces the immunoglobulin G to attack it. The antibodies build up, and purge out through the skin causing the rash. Completely avoiding gluten eliminates the antibody buildup, and the rash. One clue that might have streamlined my diagnosis is the knowledge that the DH rash is symmetrical. If it appears on one elbow, it will appear on the other, etc. In my case, it appeared on both sides of my entire body from the neck down. Please understand, I am not a doctor and the following is not to be considered medical advice. I am sharing this to pass along a few things I've learned from personal experience, research and lectures on the subject with the hope of helping others who suffer from a chronic, pervasive, itchy rash. Initial Testing Since I had the eight skin biopsies, I've learned that immunofluroescent biopsies should have been taken of the healthy skin near the rash rather than of the actual bumps. I was never given this test. After all those tests, the elevated IgG was the only indication that gluten is the culprit. I endured what was considered the "gold standard" for diagnosing celiac disease, the upper GI scoping, and my gastroenterologist did not find any damage. I have since learned that the upper GI scoping is no longer thought to be the "gold standard" diagnostic process by many celiac experts because it is too random. If the doctor doesn't biopsy the intestines in exactly the right place, you may be deemed to be celiac-free when you actually have considerable intestinal damage several inches away from the biopsy site. Furthermore, people with DH may or may not experience damage to their small intestine. A study done in 2010 found that 67 percent of the time people with DH only have elevated IgG-TGA levels (1). My doctor divulged that there simply are not yet 100 percent conclusive tests for celiac disease. He said that the best way to be sure of the diagnosis is to observe that the chronic symptoms disappear over time by vigilantly following a gluten free diet. Residual Rashes Residual rashes can reappear for up to five years even though the person is following a gluten free diet. The accumulated antibodies purge in a histamine response (the rash) periodically through the skin. Horrible as an outbreak is, the rash is actually how the body cleanses itself of the antibodies. The good news is, rashes diminish in time with strict adherence to a gluten free diet. Ongoing Testing I've learned that the best way to monitor the healing process is to have the IgG antibodies tested once a year until they are in the normal range. The number should decline each year, which implies compliance to the gluten free diet and that residual rashes will diminish. Mine took several years to finally reach the normal range. Having IgGs in the normal range does not mean that I can ever go back to eating gluten. DH is a life-long condition controlled by a gluten-free, and often, a dairy-free diet. Some studies talk about a spontaneous remission. This is very rare. Other Triggers People who have a propensity to develop rashes need to be aware of other triggers. Iodine triggers the rash in people with DH. Seaweed, shellfish, especially shrimp and lobster should be avoided. Sushi wrapped in Nori seaweed has caused me to have an outbreak before. Watch out for thyroid medicine and water filters because both can contain iodine. Sunburns can cause rashes. If your skin is sensitive enough to get a rash, chances are, sun will irritate it and could trigger an outbreak. Stay in the shade, wear translucent zinc oxide sunscreen and avoid too much exposure. An overgrowth of Candida (yeast) can cause an outbreak. Candida is naturally present in the body. To avert an overgrowth, eliminate simple sugars from the diet. According to a study done at Rice University, 70 percent of the population have an overgrowth of Candida somewhere in their body(2) due to over-exposure to antibiotics, steroids and hormones. Women who are "estrogen dominant" may not be producing progesterone. This can happen during perimenopause and in menopause. According to the book What Your Doctor May Not Tell You About Menopause by John R. Lee and Virginia Hawkins(3), estrogen dominance causes autoimmune and histamine reactions in some people. This could be the reason that women who have eaten gluten for years without symptoms are suddenly are plagued when they are in their 40's or 50's. Pharmaceuticals can trigger rashes in people with DH. If there is a choice of two drugs and one says a side effect may be a rash, and a similar drug doesn't, opt for the one that doesn't say "rash" for a side effect. Inadvertent gluten consumption can also cause the rash. Gluten is in nearly every processed food, and in many cosmetics and drugs. Some mushrooms are even grown on gluten! Transglutaminase enzymes are used to revive aging fish and meats – to extend their shelf life and to make them look appetizing. Grocers do not have to declare that they add these enzymes because they are naturally occurring in the human body. Dr. Peter Green mentioned at a Gluten Intolerance Group conference that people with celiac disease develop antibodies to tissue transglutaminase, and that the addition of those enzymes may be causing people who are already sensitive to get sicker. The point is that even foods that are supposedly gluten free can contain small amounts of it. To be safe, test products with ELISA test strips. ELISA test strips are available at http://www.elisa-tek.com/ez-gluten/. Since these strips are so expensive, this is also a website for everyone who uses them to post their results. I have learned a lot by reading this forum. Day-to-Day Life The longer I have been gluten free, the less tolerant my body has become. I've heard this anecdotally from others following the gluten-free diet. My DH is so severe, I react to even the most minor infractions. It makes eating out very difficult because cross-contamination is common and waiters are not always aware. I have a little test for waiters to decide whether to trust them to bring me a ‘safe' meal. I order a club soda with lemon before I order food. If the soda comes with lime, I know this waiter is not listening, and will be more likely to bring me something that could contain gluten. In restaurants that flunk my club soda test, I play it safe and order salad, a fruit plate or steamed vegetables. I've been to restaurants that tout a gluten free menu, only to be presented with a laminated disclaimer saying they are not liable for cross-contamination or inadvertent gluten after I order. How can anyone enjoy a meal with that kind of disclaimer? Not to mention the disruption of the conversation with your meal-mate when presented with a disclaimer card. It can be a little embarrassing! The most frustrating aspect of living with this is when accidental infractions occur. In November 2011, I wasn't feeling very well, so I took an aspirin and went to bed. Ten days later, the rash started appearing. It was a very bad rash, and I had to wear gloves to cover my hands that had doubled in size. I could not figure out what I had consumed that had gluten in it. My home is gluten free! I thought perhaps a product that I habitually used changed ingredients, so I read all the ingredients of everything in my house. Using the ELISA test strips, I tested 44 different products – foods, pharmaceuticals, over-the-counter drugs, cosmetics – everything that came in contact with my skin, or that I ate. Nothing I tested contained gluten. Then I remembered taking the aspirin. I tested it, and it contained gluten! I read the ingredients, the label said "Inactive ingredient: starch." It did not say what kind of starch. This happens in binders in pharmaceuticals too. The ingredients of pharmaceuticals will say "starch #3," and further investigation reveals this can alternate between wheat, tapioca, corn or potato. This means every time a prescription is refilled, it must be tested to be sure that particular batch wasn't made with wheat starch. I was in a car wreck and had to be taken to the emergency room. My sternum was broken, and I needed pain medication. The nurse offered me a pill and I asked if they would please make sure that it was gluten free. The nurse said, "pharmaceuticals are gluten free." (I've had pharmacists tell me this too – but as mentioned above, it is not true!) I said, "The reaction I get from consuming gluten is worse than the pain of this broken bone. Would you mind checking?" The nurse came back 30 minutes later and told me the pill did, indeed contain gluten. I went home in the middle of the night without any pain medication. I found a website the next morning that lists all gluten free pharmaceuticals, and asked my doctor to call in the specific brand of pain medication. The website is http://www.glutenfreedrugs.com. I have learned to keep a bottle on hand at home, and when I travel in case something like that ever happens again. I really wanted to eat the gluten free oats, so in 2009, I decided to go completely grain free for three months to cleanse myself for the "oat challenge." Then I made some oatmeal cookies with the gluten free oats. I took one bite, and waited ten days. Sure enough, the rash appeared on my legs. Through this experiment, I learned that I am not tolerant of even some "gluten free" foods. Through my studies of alternative diets and trying to discover the optimal way to eat to improve health, I have learned that a diet centered on eating vegetables, fruits, beans and some nuts and seeds improve the autoimmune system. Once the immune system is restored, (after strict adherence for several years), I've been told that it may be possible to undergo gluten desensitization under doctor's supervision. Locating a credible doctor to do this may be tricky, and deliberately exposing myself to gluten would take a lot of courage. However, I am considering this down the road with the hope that if I am inadvertently exposed to tiny amounts of gluten, I won't suffer through another rash. Since my reaction is so severe, I asked my doctor to write an undated letter on his letterhead "To Whom It May Concern" that states my reaction to gluten. I take this with me whenever I travel, just in case I was ever hospitalized, I could show the staff a letter from a bona fide medical doctor stating the severity of my situation. Without a letter, I am not sure if anyone would adhere to the strict gluten free guidelines I need to follow. Rash Remedies In those dismal three years before I was diagnosed, I was given mega doses of steroids, antibiotics, antihistamines, countless prescription creams, gels, histamine blocks, anti-viral drugs, anti-fungals and offered Dapsone. Since it took years to diagnose, well-meaning doctors offered a smattering of drugs to see what might work. Most of the drugs listed above were not the right medicine for DH. Steroids proved ineffective. Antivirals and antifungals did not work either. Dapsone is commonly given to people with DH who are not able to adhere to a gluten free diet. It is a strong drug originally given to lepers and has severe side effects. I'd rather live the gluten free lifestyle than take Dapsone. Once diagnosed, the two drugs that worked for me to ease symptoms for outbreaks were Zantac and liquid Hydroxizine. I am told that Zantac is a histamine block. It helped to reduce the number of itching days from ten to eight. I was also told to take it as precaution, if I felt I had inadvertently eaten gluten to thwart off an outbreak. I took the liquid hydroxizine around 4:00 o'clock in the afternoon when the histamines are highest, to ease the itching through the night. An un-exotic over-the-counter remedy that works is the clear calamine lotion from Walgreen's. There were days that I dreamed of taking a bath in that wonderful stuff! Another remedy recommended by a DH friend is a product made by Bayer called Domeboro Astringent Solution. It is a powder that is mixed with water and applied with a cloth to the affected area. It is said to give relief from the itching for several hours. Fluocinonide gel .05 percent is another remedy I have heard helps with the extreme itching. Fortunately, I have not had an outbreak since I learned about this remedy. Ever Onward Though my doctor recommended the gluten free diet, he didn't tell me how to do it, and I found there was a lot to learn! Luckily, during that time in the midst of outbreaks, I was attending cooking school. The school was not gluten free, but I took all of the methods and lessons home and converted everything I learned to be allergy free. The diagnosis and certification from the school launched me on an epicurean adventure and changed the course of my life. I started the Alternative Cook to help others who want to eat safe, delicious foods. If you are suffering with an incredibly itchy, pervasive rash, or know someone who is, consider that gluten could be the offender. Celiac disease is much more prevalent in this country than once thought. If you need moral support with DH, I'd love to hear from you. Sources: Dahlbom, Ingrid, Korponay-Szabo, Ilma R, Kovacs, Judit B, Szalai, Zsuzsana, Maki, Markku, Hansson, Tony. "Prediction of Clinical and Mucosal Severity of Coeliac Disease and Dermatitis Herpetiformus by Quantification of IgA/IgG Serum Antibodies to Tissue Transglutaminase." Journal of Pediatric Gastroenterology and Nutrition. Vol. 50(2), February 2010, P 140-146. "Biologists ID Defense Mechanism of Leading Fungal Pathogen. Psych Central. June 25, 2004. http://psychcentral.com/news/archives/2004-06/ru-bid062504.html. Lee, John R., Hawkins, Virginia. What Your Doctor May Not Tell You About Menopause. Mass Market Paperback. September, 2004.
  6. Hello all, I am a newbie here, and this is my very first post. So I hope that you can be patient with me as I try to explain my situation. I have/had been having an increasing problem with an incredibly itchy rash for the past five or six years. This came on so gradually that I can't even remember exactly when it started, as at first it was merely itching, although it slowly got progressively worse. But after maybe a year or two of that, there started to appear odd 'bumps' and then rashes in the places where I had been getting itchy, and the itching only got worse. A few things I noticed about these bumps and rashes was that they would seem to start or flare up suddenly (like in minutes), but fade away very slowly, over days or weeks. The bumps started showing up in larger and larger groups or clusters, and the skin around and under these clusters started more and more to become red or purplish; this color would turn to purple-brownish after that particular clump of "bumps" subsided, but this color would often last, and only very slowly fade, for many weeks afterward. I also noticed that most of the clusters of 'bumps', and itchy areas, would appear symmetrically on my body --- for example, if I had an itchy rash forming on the inside of my upper left arm, there would usually be one more or less simultaneously forming on the inside of my upper RIGHT arm as well. After trying to just "live with it" for a couple of years, I started to increasingly use over the counter hydrocortisone cream on these rashes and itchy areas, along with diluted blue tansy essential oil, a noted natural anti-inflammatory. Sometimes I would use both of those in combination. That seemed to help with the itch, sometimes, but they did not seem to make the rashes and bumps go away. Late last year (2017) and early this year, I noticed that the itching and rashes were not as bad as they had been at the same time of year last year and the year before. After thinking about my diet over the previous two or three months, I realized that I had been eating almost no wheat products (pasta, bread, etc.), which I otherwise normally would have been. So I really dug into some internet research, trying to find any link between dermatitis and wheat consumption, and BINGO, I ran across "dermatitis herpetiformis", which I had never heard of before. When I read up on that condition, and looked at online photos of it, I had FINALLY found what looked and sounded like what I was experiencing. But not having medical insurance, I never did have myself tested for celiac disease. So, long story short, I started a rigorous gluten-free diet in late January, and quickly saw noticeable improvement in my skin condition. However, while the situation is overall significantly improved, I have still had flare-ups in the condition while on the gluten-free diet. One time was after eating a fish stew which contained dulse (a sea vegetable) twice on consecutive days, and I now understand that iodine can aggravate the DH even after going on a gluten-free diet. My question here, for those of you willing to help me, would be what OTHER triggers should I be looking out for in regards to DH? I now know about iodine being one, but somewhere I think I had read about sulfites being another, although I cannot now find that reference. Elsewhere I have read about alcohol being implicated, or MSG, or other substances found in food. But I cannot seem to find a simple and definitive list of such DH 'triggers'. Nor is there any clear indications of just how long I might expect the DH to linger in my skin after going gluten-free, or have to worry about consuming these 'trigger' foods and substances. Thank you so much folks, and I am really glad that I have discovered this forum!
  7. Hi, I went to see my dermatologist today to get a biopsy of what she suspects to be DH on my elbows. She freaked me out because she said that if the test is positive my diet will be very restricted since I am a Vegetarian. She advised me to get a nutritionist. My question is should I also ask my PCP for a referral to a gastroenterologist as well, if I indeed do have Celiac? Thanks in advance.
  8. Celiac.com 05/03/2018 - Time to spring into action and take control of your celiac disease and dermatitis herpetiformis! This means I have to "Scare you Silly" about not fully conforming to the gluten-free diet. Anemia, tiredness, and vitamin deficiency will continue to dog you if your gluten-free diet is non-compliant. You know those "just can't resist" items in your diet, the ones where the ingredient list does not actually say it is gluten-free, which may leave you open to cross-contamination that is common in the food industry? There is an estimated three million Americans with celiac disease, yet the vast majority still remain undiagnosed. The prevalence of celiac disease in Canada and the United States is growing, not diminishing! The high prevalence of celiac disease is also found in individuals with other disorders such as Type 1 diabetes, autoimmune thyroid disease and Down Syndrome. The prevalence of celiac disease in Type 1 diabetes around the world is 3 – 16%. According to Shelley Case, Author of Gluten-Free Diet: A Comprehensive Resource Guide: "Studies by Columbia University in New York and the Canadian Celiac Association revealed that adults suffer from the disease for an average of 10 - 12 years before being correctly diagnosed." The rare, but wise, physician who has diagnosed celiac disease correctly also sends the patient to be checked for diabetes and thyroid disease. Do you know what Gluten Ataxia is? Ataxia is a symptom in many conditions that affect the nervous system. Ataxia causes clumsiness or loss of balance and coordination that is not due to muscle weakness. Ataxia symptoms can be worrisome, and more so if you have been cheating on your celiac diet. Symptoms may vary but can include: Trouble using fingers, hands, arms and/or/legs Trouble speaking Trouble moving eyes Poor coordination and/or balance Tingling in extremities Gait problems Damage to the cerebellum (the part of the brain that controls coordination). Gluten ataxia is a rare immune-mediated disease in which the body's immune system attacks the nervous system as a reaction to the ingestion of gluten. It is a rare condition, but it can be related to celiac disease as well as non-celiac gluten sensitivity. Those with gluten ataxia often do not always have digestive issues or other symptoms. A strict gluten-free diet usually improves symptoms for those with gluten ataxia. Early diagnosis and treatment through the gluten-free diet can help stop progression and further cerebellum damage. People who have dermatitis herpetiformis know only too well what that gluten-containing doughnut or tart can do to their bodies. The DH sores are so itchy, and well, just sore, that prior to my first diagnosis I thought I had head lice and self-treated myself it on three separate occasions! Though DH is a miserable disorder to have, and the sores appear in the same places time and time again leaving scars, it at least leads to a faster diagnosis once a dermatologist sees the itchy sores, which often appear in bunches on your scalp, upper arms, shoulders and shins. While other people are watching television you are itching at sores in your head, picking off scabs, and in general feeling very miserable until the DH sores eventually heal. A biopsy of one of the lesions by that dermatologist can show dermatitis herpetiformis, but sometimes only after two or even three biopsies. The IgA deposits remain under the skin and that is why the DH sores keep coming back to the same place in your body. They are still there, and just come to the surface when you ingest gluten. Some with DH have to remain on dapsone for the rest of their lives. I have been on dapsone for over 30 years, even though I attempted on several occasions to stop taking it. To me it is a wonder drug, but one that I have to be careful not to abuse, because dapsone can cause anemia, and something similar to anorexia because when you ingest it regularly you do not feel hungry, and thus lose weight. To heavy people this may seem like the perfect weight loss program. Believe me, it isn't. It can also cause Methemaglobinemia which, when ingesting will prevent your arteries from functioning as an oxygen carrier and can seriously affect your body so that oxygenated blood does not reach your starved blood cells. You either carry a SAT Machine to measure the oxygen levels in your blood, or go to the Emergency Department where they can check your saturation levels. If below 90 they will admit you, run a battery of tests, and you may be put into a side room somewhere to get an infusion of Methane Blue to flush out your blood system, and you may need to have a blood transfusion. If you are away on holidays this can be a very serious condition where you are unaware you have Methemaglobinemia, except for a feeling of being out of breath, and NEED to get to hospital as soon as possible so your SAT levels can be monitored. Scaring you straight means not cheating day after day and then hoping a few dapsone will improve the condition. It won't—if you have passed the safe guideline of one pill daily. It is not simply a matter of taking dapsone in a 5 - 4- 3 - 2 - 1 as I was advised to do by an internist when I was first diagnosed with dermatitis herpetiformis. Ingestion over five days will no longer help you, and to my chagrin, can cause the condition to worsen. It is a serious condition; you can actually die from lack of oxygen in your blood! These few descriptions do not cover the fall out (of your hair) and the scarring of the sores on your legs and upper arms the Prednisone that they want to give you can cause a "roid rage" similar to what weight lifters have when they purposely ingest Prednisone to build up their muscles and become extremely irritable because of the Prednisone. ONE helpful clear lotion that I have to buy across the border in the U.S.A. is Scalpacin or Renewal, the latter being the generic name for Salicylic Acid (3%) which lessens the intense itching when applied directly to the sores (not to be ingested!). It says only 3% Salicylic Acid and I will confess that when I first "latched" onto this amazing "scalp itch and Dandruff relief liquid" I often applied twice daily to all the sores in my scalp and on my body. Did you know that approximately 3% of the general population in the U.S.A., according to Dr. Peter Green, have celiac disease? Once a patient develops one autoimmune condition the odds of developing another are greatly increased. Autoimmune disorders run in families, and different diseases may affect different parts of the body. A friend of our grandson was diagnosed as having celiac disease simply because she went to her doctor with complaints of a stomach ache. The doctor could have easily asked her if she had exams coming up, sent her for a blood test to rule out an appendicitis and left it at that, but he was a wise doctor who asked more questions and ordered the celiac blood tests. When that cameback positive he actually followed it up with a biopsy of the jejunum. She, as a teenager, was positive for celiac disease, but that doctor could have easily not ventured past the stomach ache at that first visit and gone no further with his investigations. Fortunately, vigilance paid off this time. He was thorough enough to refer her to a dietitian, but you know, she still cheats! I believe the reason she cheats is because she does not suffer from any of the symptoms of celiac disease right now, and does not have dermatitis herpetiformis. Amazing how vigilant you become with your diet when you break out in painful sores over 25% of your body, and experience diarrhea, stomach aches, nausea and vomiting! We never got into the other diseases she could possibly get from cheating on the gluten-free diet. Sjogren's Disease, Turner Syndrome, Type 1 diabetes, Williams Syndrome, Juvenile idiopathic arthritis, lactose intolerance, migraines, peripheral neuropathy, liver disease, are but a few of the disorders that can be connected to celiac disease. Have you ever looked up the symptomatology of these autoimmune diseases? Time you did! Did you know that there is a Celiac Disease Center at Columbia University which is one of the leading authorities for unexplained infertility issues, and that the prevalence of celiac disease in women with unexplained fertility is higher than the general population? Celiac disease may also be asymptomatic, meaning you show no symptoms at all. This is one of the reasons why it may be difficult for some people and their doctors to connect the dots between celiac disease and unexplained fertility. I worked with obstetrician/gynecologists for years and never found one that, when doing the laboratory testing, included a test for celiac disease, yet it is common knowledge now that a celiac disease screening should definitely be part of the work-up that is done for infertility issues. People of reproductive age spend an enormous amount of money, time and energy trying to become pregnant and carrying the baby to term. There are more women depressed because they cannot conceive or those that cannot bring a baby to term. Several studies over the past ten years have found a link between celiac disease, infertility and spontaneous abortion. It is not known yet whether the nutritional issues (malabsorption) that occurs with untreated celiac disease is the cause of the reproductive issues, or if the immune system may be to blame. Many doctors define infertility as the inability to get pregnant after one year of unprotected sex. In women, fertility difficulties often result from a problem with ovulation, while in men, infertility usually occurs because the man does not produce enough sperm or produces abnormal sperm. Note that undiagnosed or untreated celiac disease can lead to a host of seemingly unrelated problems, including osteoporosis, depression, and anemia. Medical researchers “along with some observant obstetrician/gynecologists are realizing that undiagnosed celiac disease may also be a cause of otherwise unexplained infertility in both men and women." A study undertaken in England, which has one of the world's largest celiac populations, indicates that fertility often returns after you start the gluten-free diet. There are many causes for infertility, but up to 30 percent of couples who are infertile will be told that no specific reason for their infertility can be found. When this happens a diagnosis of unexplained infertility is given. In recent years, awareness of celiac disease has increased. You may not be able to quote "Celiac Disease is a chronic autoimmune disorder", but it is a good sentence to spread around to those who ask you, "Do you follow the gluten-free diet because it is trendy or you want to lose weight"? As awareness for celiac disease has increased, some researchers have started looking at a possible like between celiac disease and unexplained infertility. Some of the known causes are: Low sperm count, - sperm with mobility or motility issues Enlarged veins in the scrotum called varicocele. Klinefelter syndrome, a genetic disorder. Although Klinefelter syndrome carries with it the risk testicular cancer, autoimmune diseases have been associated with this disorder, which is a chromosomal disorder. KS might increase the risk of some autoimmune diseases. It has been suggested that some autoimmune diseases may be more common in people with Klinefelter syndrome than in others, but the evidence so far is sparse. A research paper out of Oxford, England entitled "Associations between Klinefelter's Syndrome and Autoimmune Diseases” came to the conclusion that those with Klinefelter syndrome have increased risk of some autoimmune diseases. If you have the test for celiac disease, at least the blood test, and if your partner has the ultrasound done for it you can go into the obstetricians office with a list of questions, including family history, research you have undertaken yourself. I have seen so much heartache while nursing, watching a couple lose their baby prior to delivery, and those than cannot conceive but cannot afford invitro- fertilization. The damage that undiagnosed or untreated celiac disease can result in ongoing gastrointestinal symptoms such as vomiting, chronic diarrhea, stomach pain, and cramps. A number of these symptoms may also affect the reproductive system of women, for example: Delayed onset of menstruation Irregular periods No periods at all, known as amenorrhea Chronic pelvic pain And yes, endometriosis (where part or parts of the uterine lining attaches itself to the uterus and begins to grow) needs to be mentioned here. Many women who have this painful disease have been told that their only way of ridding themselves of this very painful disorder is to get a total hysterectomy. This is not always the case. There are now medications to help rid the uterus of endometriosis. Many obstetricians will perform a laparoscopy to determine the extent of the endometriosis, endeavour to lyse the adhesions from the wall of the uterus. Often this is all that is needed to ensure an introduction from the egg to the sperm and conception takes place. Other, more difficult cases can be referred to an infertility specialist, but be prepared for large costs. Many infertility specialists will tell you that if you can obtain a pregnancy while still struggling with endometriosis it often alleviates the problem. Did you know that men with celiac disease may have gonadal dysfunction, which could complicate fertility issues? (That was a big learning surprise for me!) This ultrasound test can be ordered by your family physician, a gonadal ultrasound to rule out a cystocele. Finding out that your husband has a cystocele is not Earth shattering—it involves a small corrective surgery. Did you know that Semen issues (specifically sperm morphology) found in men with celiac disease improved after following a gluten-free diet? Few studies have been conducted on celiac disease and male infertility. There is also a lack of scientific information and research studies on the potential link between non-celiac gluten sensitivity (NCGS), also commonly referred to as "gluten intolerance" and infertility. While research needs to be done, those with non-celiac gluten sensitivity are thought to possibly be at an increased risk of reproductive issues. However, the connection between NCGS and infertility is not yet known or proven. One case review did suggest that a strict gluten-free diet may improve fertility for those with NCGS. According to Healthline experts do not fully understand the effects of celiac disease on the reproductive system. The effects may be caused by malabsorption of nutrients, the impact it has on the immune system, or another currently unexplained reason. Some studies have noticed a link in untreated celiac disease in the mother and recurrent miscarriage, pre-term birth, and low birth weight. In a meta analysis that looked at studies on infertility and celiac disease, researchers noted that women with infertility were over three times more likely to have celiac disease than the control group. You have to admit that is a large number, and what upsets me is the fact that numerous obstetrician/gynecologists do not automatically send this part of the women's population for celiac disease screening. Yet women with unexplained infertility, were six times more likely to have celiac disease than women in the control group. Despite these studies, not all experts in the field are convinced about the connection. They state that more research is needed. BUT wouldn't you want to know that there is strong evidence that infertility and celiac disease are connected, and at least make your own decision with regards to getting tested? The tests undertaken by people with infertility are difficult to endure, are not only embarrassing but invasive. If celiac disease or gluten sensitivity runs in your family, or you suspect you have celiac disease, make a list of your symptoms. You'll want to discuss your concerns with your doctor and ask to be screened for celiac disease. A Reproductive Endocrinologist is who you would be referred to here in Canada, but you may have another title in the United States. If you are vigilante about eliminating gluten from your diet, you will stop the damage celiac disease is doing to your body. This may include lessening or eliminating the impact it may be having on your reproductive system. Sources: https://www.ncbi.nim.nih.gov/pubmed/25564410 Celiac Disease A Hidden Epidemic, Dr. Peter H.R. Green American College of Obstetricians and Gynecologists (ACOG) Resource Center: http://www.acog.org American Society for Reproductive Medicine: http://www.asrm.org Reproductive Changes Associated with Celiac Disease: https://www.ncbi.nim.nih.gov/pmc/articles/PMC3001971/ Healthline https://www.ncbi.nml.nih.gov/pmc/articles/PMC4600520/
  9. Okay. Long story short - I've had itching blisters coming and going for at least 10 years, I'm 27 now. When I was 23 I got diagnosed with an autoimmune kidney disease. Ever since then I've been very careful with my diet and avoiding, but not completely cutting out gluten. I've had stomach problems since I was a kid. Had acne since I was 14. Diagnosed with PCO. Always feeling tired. Can eat tons of food and never gaining any weight. Recently I found out I am anemic, Ferritin was 7 (range is 10-70 I think) I was also deficient in D-vitamin. They took transglutaminas tests but it was negative. I started eating gluten again in February, and my blisters and ezcema like rashes came back quite quickly. I know a gastroenterologist and told him about my low iron, my blisters etc. And he immediately said that it sounds like celiac disease. He scheduled a gastroscopy (they go in with a camera through the mouth and take biopsies from the small intestine) that I did today. The doctor took 3 biopsies and said that it looked like the villi was flattened. He also said that I could start a gluten free diet if I wanted to before the test results comes back. I'm just confused right now... shouldn't they do a skin biopsy on my blisters as well? I read about ppl having DH who do that and get diagnosed that way. how can the blood tests be negative and the biopsy not? if i go on a non gluten diet now, my blisters and rashes will go away which is good ofc, but then if the biopsy come back negative, they can't do a skin biopsy? It would make so much sense to me if I'm celiac. Therefore I'm scared the biopsy wont show anything since I've been going on and off gluten for years. Although the doctor said it looked like I am celiac? And the blisters can't be anything else than DH!! And the low iron and everything. Ugh. I just want the results now... And know for sure.
  10. Yvonne (Vonnie) Mostat

    Confessions of a Celiac "NERD"

    Celiac.com 03/23/2018 - I should probably add severe dermatitis herpetiformis to that title. It was numerous doctors' guessing games, a medical misadventure, and years of improper eating that led to my arrival at "severe". I often wonder why 'misadventure' was the legal term they used to describe a doctor giving me a neuroleptic drug for "spots". After all, there was no adventure in what occurred and the only thing that was 'missed' was the correct diagnosis. But my tale is one of a beginner's trials. I described my medical 'misadventure' in a previous issue. Perhaps this article could be called "The Perils of Pauline" if my name was Pauline. When I was diagnosed with celiac disease and severe dermatitis herpetiformis (DH) I was told that the diet was very difficult to follow and I would have to be vigilant or Dapsone might not stand in the gap as my savior from the itching, I was told that I would suffer abdominal pain, outbreaks of sores, anemia, and, (big swallow) horrible bowel disorders. About ten years ago I submitted an article about celiac disease and DH to a magazine. I was told that nobody wants to hear about 'bowels'. Thank goodness times have changed and we now have our own magazine. I can use terms like "flattened villi", "flatulence" and "stools", and know that you understand the need to discuss these issues. Early in this process, I left my dermatologist's office with a prescription for Dapsone to treat the attack of sores on my scalp, my arms, and thighs, and a slip of paper directing me to see the dietitian at our local hospital. I was told to avoid "wheat", which meant avoiding bread and bread products. "Duh!" I went home, had a bowl of Campbell's Mushroom Soup and thought "I can do this. I am a nurse after all. It won't be long before these sores have cleared up, I can gain weight, my nails will grow again, and I will stop this blessed itching" (Why do we say "blessed" when we mean a swear word?) I was on such high doses of Dapsone and the sores cleared up but what a price my body paid! We continued using the same toaster. (Goodness what is a crumb after all?) The more I traversed this "adventure" the more I found flour, or to be precise GLUTEN in almost everything I ate, liked, or touched. I visited the dietitian at our hospital after weeks of waiting, and she was curious to see the sores on my scalp, never having seen dermatitis herpetiformis before! Her file on celiac disease was smaller than the one that I had started to develop. I am embarrassed to say, as a nurse and writer, that I did not search the Internet for help during those first months. The dietitian was my only resource. I did not know anyone with celiac disease. And dermatitis herpetiformis was something I did not want to tell anyone about. It sounded contagious to me. Some of the 'shockers' to me, the person who thought the gluten free diet was going to be a piece of cake were simple things and stupid things. Some of the words I was frequently saying were "I just did not think gluten would be in that!" and "I did not think to read that!" and, "Who would have thought?" Certainly not me! That first Christmas someone bought us a bottle of Irish Cream Liqueur, a thing we seldom imbibe. Again, not thinking, I used it in coffee for a drink after Christmas dinner and "wondered" why I had diarrhea the next day and why DH spots appeared on my scalp. Food surprises: Oh my, such a lot of them. McDonald's French fries are not French fries. They are reconstituted flours, lard and "some" incidental potato products. My favorite, Costco fries, were hardly fries at all. They contained a lot of flour, which I suppose gave them the crunchy texture that I loved and paid dearly for afterward. I found out that most sausages contained toasted bread crumbs, as did sausage meat. Processed hamburger patties, big surprise, also contained toasted bread crumbs. I finally found that one can get sausages labeled gluten free, with that wonderful little "Wheat Sign" that I was learning to look for. Milk shakes? Oh, come on! Milk and ice cream... right? Not necessarily because not all ice creams are the same, some actually contain wheat germ or other grains used as fillers. This is similar to the way they use fillers in our medications, not only our pills but our liquid medications, our cough syrups, and pain liquids. Some indicate that they are made on machines that use wheat products and are not carefully cleaned before they begin another batch of medications. It is the same with those lovely sour lemon candies I love. They are coated with this lovely lemony powder. I can eat a bag of them without much thought. That is, thought was suspended until I was awake all night with abdominal pain and suffered the next day with diarrhea, and the next week with DH spots and the itch. Oh boy the itch! It is not a normal itch you know. It is not one that you just scratch for a bit and forget it. You HAVE to scratch it until it draws blood, and then scratch the scab until you have a burning pain like no other. Thankfully we found a Corticosteroid liquid called "Scalpacin". It is an over the counter liquid. I was forced to get serious about this search for traces of gluten, but why do they make the product analysis writing so small? Picture me pulling things out of the freezer department of the supermarket and trying to read the product analysis. I cannot leave the door open because the hairs in my nose will freeze and I'm afraid that the department manager will become annoyed, so I end up opening the freezer doors again and again, searching for something I can eat. I discovered, like most serious long-term celiacs, that quick, pre-made dinners are something you might as well ignore when shopping. And those wonderful rotisserie chickens - so nice and warm and "fatty" - have to be taken out of the warmer and the label has to be read because most of them seem to contain MSG and other unknowns. Acronyms - initials that scared me because I could not remember which ones were on my "Danger List". Eventually I printed off and laminated a sheet of "OKAY TO GO" and 'DANGER LIST" and took it with me when we shopped. (These lists are available at www.celiac.com.) Spices contain flour to prevent them from sticking, and who knew that baking powder would contain flour, and icing sugar? I was giving away most of my baking products cupboard to my grown daughters. Of course they did not mind and my husband was slowly learning to eat gluten free. Really, he was better for it. I kept telling him that. I seldom made cakes and pies in the beginning. Then, I had so many gluten free baking disasters because I was so used to baking with a "dash of this, and a dash of that", and you cannot do that with celiac baking or you will have a flop. I dug so many cakes out of the pan and threw them in the garbage. The first loaf of bread I tried to make in our break maker, the loaf actually went down instead of rising, and my husband ended up digging it out of the pan with a screw driver! We rarely went to restaurants. I was embarrassed at having to give the waiter the third degree about the menu. And so many of the chain restaurants have large tins of pre-made products and the waiters, so time oriented out of necessity, cannot read every label. I now find, to their credit, that a lot of these chain restaurants have a book listing ingredients of each of their menu items. They are great, IF waiters will take the time to read them. A waiter in Hawaii, after grilling him (not the steak) about the "au jus" in the dish, finally came back to our table with my meal. My husband asked him again if he had checked that the meal was gluten free. Although he said it was safe, it became clear that he had not checked. It was that little hesitation that should have "clued us". I would not have spent the next three days of my holiday dastardly sick if I had handled it differently. My family physician has told me to emphasize that gluten "is poison to me, and I get very ill from it". He went on to say, "That will scare them because they will be thinking you will be rolling on the floor in the restaurant". Eventually we found one restaurant in our area, a small family owned business where everything was made by the chef/owner, that was safe for me to eat. The chef even came out to see if everything was okay. I was so delighted I wrote an article in our local newspaper about the restaurant and sent information to the Vancouver Chapter of the Canadian Celiac Association because they welcome new information about restaurants and new bakeries offering gluten free baked goods, new information regarding retail grocery stores offering new gluten free products, etc. I have learned to avoid caramel because even though I'm told it is not made with flour, it often has other forms of gluten in it that manufacturers are sneaky and not listing, like malt! A big shocker for me was the John Frieda shampoos. I just loved it when the hair lightener products by John Frieda came out.. They had blonde hair lighteners, burgundy hair colors, caramel, and chocolate brown. Oh my, the colors were endless and lovely. I bought the blonde hair products, the anti-frizz, the shine products and sprays. My cupboard was full of John Frieda blonde hair products for the wonderfully expensive streaks in my hair. Why oh why was my hair itching so badly? And the sores, and the blood! Why it was Wheat Germ Oil! And my scalp was alive once again. But I had a bigger problem. By this time, my wonderful Dapsone was becoming a danger to me. I had always been told by my dermatologist to assist the DH to dry up by going {5-4-3-2-1 with the Dapsone pills. And if that did not work, doing it again along with yet another prescription pill Prednisone! Out came his trusty prescription pad for Prednisone, {5-4-3-2-1 of Dapsone and Prednisone. I was not told however, of the potential side effects of Prednisone, like aching joints and mood swings. But Dapsone is one of the drugs that can cause methemaglobinemia, a blood disorder where the oxygen is taken out of the blood and your oxygen saturation can drop dangerously into the low 80's. I learned this after two hospital admissions into the ICU this year. They used Methane Blue (a potentially lethal mixture if not used correctly) to clean my blood. The oxygen is hidden behind a door somewhere and the Methane Blue helps open those trap doors and releases the oxygen into the blood again. That is how the internist described it to my husband who was sitting terrified in the other room. I had an infusion of two units of whole blood and a four day stay to monitor my oxygen saturation levels and was told I could never use Dapsone again. What??!! Dapsone was my life-line; I could never live without Dapsone! Three days without that "stuff" and the dreaded spots were back. I was referred again to a dermatologist, now fifteen years after my diagnosis, and he prescribed Cimetidine, a medication used for stomach disorders. Who would have known? But it works - three times a day that is. Another dratted pill! We purchased a SAT machine (It measures the oxygen saturation of hemoglobin) online from the U.S.A. for $38.00. It is a very good deal. Twice a week we check my SAT levels and if they are 92-93 I consider it okay to continue my Dapsone. I have been told if my SAT levels drop below 89 I should go to the Emergency Department because these small machines are not totally accurate. But this little guy has checked out with my physician's SAT machine and the hospital's machine every time; It's a real winner, and a life saver for me! IF you are afflicted with dermatitis herpetiformis and have to take Dapsone regularly you may want to consider purchasing one of these machines. A few shots of Zylocaine for pain, coupled with the Dapsone, and you could be in trouble. Zylocaine, in combination with a few other drugs, can cause Methemaglobinemia. I have just listed "some" of the things that surprised (shocked) me when I was a new gluten checker. I am sure you can write in and tell us your "shocking" stories.
  11. Hello, I've been recently diagnosed with celiac disease, but my affliction is DH. I started getting the rash around February, was diagnosed in May, so I'm lucky it was a quick turn-around, so I've only really been gluten-free for a few weeks. The information I can't seem to find on my own however is what DH looks like when it's heeling? I only ever find pictures of what it looks like when it's flared up, not when it's healing. I'm sure I'm also accidentally gluten-ing myself over the weekends, but I'm just really new to this obviously and adjusting has been a little tough. Thanks for any advice / info you can give me; in a weird way I'm glad that if I was going to get anything, it's something that has a very supportive community and a wide variety of options and foods that i can still eat. Thanks again.
  12. Yvonne (Vonnie) Mostat

    Confessions of a Celiac "NERD" - Part 2

    Celiac.com 03/02/2018 - When I was diagnosed as having celiac disease with severe dermatitis herpetiformis (DH) I was told that the diet was difficult to follow and I would have to be vigilant or Dapsone would not relieve the itching. I suffered abdominal pain, outbreaks of sores, anaemia, and, (big swallow) the horrible bowel disorders. I came out of the dermatologist's office with a prescription for Dapsone to treat the attack of sores on my scalp, on my arms and thighs, along with a slip of paper referring me to the dietician at our local hospital. But that was years ago. My journey has been an ongoing trial of trial and error. I was just discharged from hospital again, my third occasion in ICU within the past year. I have been told I am the only person in Langley who can wear that crown, the one of having Methemoglobinemia. {lucky me!} This could happen to any celiac with dermatitis herpetiformis who takes Dapsone. And anyone regularly eating packaged meats or bacon, for instance, along with having Zylocaine injections, is at significant risk of methemoglobinemia as well. A person with celiac disease may or may not have dermatitis herpetiformis. Many celiacs go their entire lives without a DH spot on their bodies {you Lucky people}. I have learned a lot in this past two weeks, both while hospitalized and from subsequent research, about the reasons it happened and the dangers of it happening to me again. I can never have more than one Dapsone again and I must now have methemoglobinemia tests done every six weeks. It is likely that they cannot use Methylene Blue to treat me again, unless I am at a critical point, because of the danger of the poison still being in my system. **A little lesson here on methemoglobinemia: Hemoglobin is the molecule in red blood cells that distributes oxygen to the body. Methhemoglobinemia can either be inherited or acquired. It is a blood disorder in which an abnormal amount of methemoglobin, a form of hemoglobin, is produced. Methemoglobin cannot release oxygen. There are two forms of Methemoglobinemia. The acquired form is caused by exposure to some chemicals and/or drugs and is thought to be more common than those that are inherited. Chemicals and drugs that trigger methhemoglobinemia include: Anaesthetics such as benzocaine and Xylocaine Benzene Certain antibiotics {including Dapsone and chloroquine} Moi! Nitrites {used as additives to prevent meat from spoiling)!! There are two sub-groups of inherited methemoglobinemia, type 1 and type 2. The symptoms of acquired methemoglobinemia include: bluish coloring of the skin headache fatigue I did not get "bluish coloring of the skin", even though I was hospitalized on three occasions with this condition and was asked about it repeatedly. I did get full frontal, severe headaches, and I did experience breathlessness when climbing stairs. I had to stop at the top of our the stairs in our home to catch my breath. My most recent admission to the Emergency Department was after such an experience. I was really out of breath, had chest pain, and my headache was so severe that I told my husband that I thought that methemoglobinemia was coming back again. I made the mistake of following a physician's instructions - some don't seem to know that this condition can become critical. The admissions last year were because I had two of the diagnostic criteria for Type II methemoglobinemia. I had a trapped nerve in my neck and my husband had been trained to give me Zylocaine injections to alleviate severe stabbing pains just above my right eyebrow. (The nerve travels over the head to just above the eye.) I had been told that when I was in the throes of a dermatitis herpetiformis outbreak I could go 5 - 4 - 3 - 2 - 1 with Dapsone and Prednisone. On the first day I took 5 tablets, the second day 4 tablets, and so on. If the spots kept re-occurring then I was to follow the same procedure once more. When I was discharged last year I was not told to change that protocol. In February, I found myself inundated with dermatitis herpetiformis spots all over the back of my head, backs of my arms and shins. I was conservative in my approach to Dapsone and took only Three Dapsone tablets on two successive days. This set me on the path to another hospital admission. I could not climb our stairs without leg pains and becoming breathless. I had frontal headaches and just "did not feel well". On one of my last admissions to the intensive care unit, my methemoglobinemia was 29 and the Internist treating me said that if I had sat at home with my oxygen bottle for another week my methemoglobinemia scale could have climbed to 35 which usually means death. What to do if you develop the same symptoms: Call your health care provider or emergency services (911) immediately if you have severe shortness of breath and you have previously experienced methemoglobinemia. Prevention: Genetic counseling is recommended for couples with a family history of methemoglobinemia who are considering having children. After this most recent outbreak of DH I was determined to find out what had caused this last admission to hospital. It was not fun to have my blood drawn daily. Neither was it fun to have the phlebotomist coming in to draw blood gases from my wrist (ouch!) also daily. It was scary when they told me that my hemoglobin was declining daily and when it hit 80 they started the IV drip of two units of packed red cells again. They did not do the Methylane Blue flushing during this admission because my methemoglobin was 11, not 17 or 29. Methylane Blue is a poison and they had to check with St. Paul's Hospital in Vancouver in order to determine the amount to be used on this little body. Plus they cannot keep doing this poisonous flushing every nine months. I was told this by a specialist wearing his sternest facial expression, obviously in order to scare me. Who knows what amounts still stay in the system? Methylene blue may be dangerous to patients who have or may be at risk for a blood disease called G68PD deficiency and should not be used by them. If you or your child has G6PD deficiency, always tell your health care provider before receiving treatment. Another interesting note is that ascorbic acid can also be used to reduce the level of methemoglobin. I don't know much ascorbic acid is required but I intend to find out. Oranges contain ascorbic acid do they not? The normal methemoglobinemia scale is about minus 0.1. Mine seems to stay at about 3. This specialist physician also told me that I could no longer increase my dosage of Dapsone. It has to stay at one per day no matter how severe the outbreak. I must also take Cimetidine, a drug that is usually used to control excess stomach acid. It helps to reduce the impact of Dapsone on methemoglobin. Dapsone is the dangerous drug for methemoglobinemia, and Zylocaine injections also pose similar dangers. After my admission to hospital last May, I found out that phosphates can also add to the level of methemoglobin. There are phosphates in packaged meats, with lots of those little guys in bacon and cured ham. Were I to double up on Dapsone because of a particularly bad DH outbreak, have a few injections of Zylocaine, then add some back bacon and packaged cold cuts, I might well be back in hospital with elevated levels of methemoglobin. This time I also discovered that phosphates are sometimes in chewing gum, malted milk drinks, drinking chocolate, baked beans, instant coffee, curry powder, white pepper, some lipsticks, gravy browning, self basting turkeys, brown rice syrup, supplements and, of course, luncheon meats. Fifteen years ago I was told I could use Atarax for the itch. Now they tell me that this drug is not only very sedating, thus slowing the heart down considerably, it is a poison that can cause tardive dyskinesia, a potentially irreversible form of brain damage. Again, fifteen years ago it caused me to experience facial gesticulations, tongue protrusion, hands that trembled and a speech pattern that often defied translation. That was because I was wrongly prescribed Loxapine for the itch, and along with Atarax, it ruined my life forever. Misunderstandings persist. Celiac disease can look like Crohn's disease. It can look like colitis. It can look like irritable bowel disease, and because physicians have been taught that celiac disease is very rare and they often simply write it off as irritable bowel syndrome when they cannot find the cause of a GI problem. They forget that it could be celiac disease. It is just under-diagnosed, and peri-menopausal women suffer the most because they are often labeled as "depressive", or worse yet, "neurotic". I was told when working as a nurse that "irritable bowel" often meant "we just don't know". The world has yet to define a universal "gluten-free" standard. For international trade purposes, the Codex (WHO - World Health Organization), Committee on Nutrition and Foods for Special Dietary Uses is in the process of revising their standards. At this time they are unable to reach a consensus. {Hey, this has been since 2008 and it's already 2012! What do they do at these Forums?} The Food Allergen Labeling and Consumer Protection Act (FALCPA) has committed to defining "gluten-free" for labeling purposes by 2008. We still do not have a World standard. FDA (Food and Drug Administration) acknowledges that the situation needs to be rectified and it has made a start by including gluten with other major allergens in their ingredient disclosure requirements. The greatest progress is among the health declarations on restaurant menus and whole foods markets. Wal-Mart have also cast their lot with this group, establishing entire sections dedicated to gluten-free foods. We are finally starting to get rid of ‘stealth glutens' - those in flavor carriers, binders, fillers and emulsifiers, and used in everything from salad dressings to self-basting turkeys. We have come a long way, but we still have miles to go in reforming the food industry. As a waiter said to my friend when she told him she has celiac disease: "We don't serve fish in our restaurant, in fact we have nothing out of the sea". References: DeBaun, MR - Frei-Jones M Vichinsky E Hereditary methemoglobinemia in Kliegmann RM, Behrmann RE, Jenson HB, Stanton BF, eds. Nelson Textbook of Pediatrics 19th ed. Philadelphia. PA Saunders, Fernandez Frackelton M Bocock, J. Cyanosis In: Marx JA, Hockberger RS, Walls RM, et al, eds. Rosen's Emergency Medicine Concepts and Clinical Practice 7th ed. Philadelphia, Pa, Mosby Elsevier; 2009, chap, 29. "Keeping Food Safety in the Mix: Food Safety in Grain Based Foods and Bakery Products" Gluten-Free Formulation, Kim Decker
  13. 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.
  14. I’m 30 and have not been tested for any gluten sensitivities, intolerance, or celiac disease. Best as I can recall, two years ago during my first and only pregnancy to date, I began to notice a rash that would appear on my elbows, inner thighs, and knee caps. The rash comes and goes, varying in severity. Until recently, I’ve dismissed the rash, assuming it was/is hormonal or due to weather, or dry skin. I hadn’t even thought to mention it to my doctor. This time around, the rash has been present, but not very prominent until this past week. It has flared up again and is itching and burning more often than not. In addition, I’ve been experiencing abdominal muscle twitching that feels extremely similar to fetal movements. I took two pregnancy tests that came back negative. I honestly would have sworn, despite having no other symptoms and taking birth control, that I was feeling fetal movement. I’ve recently begun researching possible causes for both the rash and muscle spasms, and of course there are so many possibilities, but it seems like the locations of the rash coincide with dermatitis herpetiformis. The above symptoms are the only ones I’m currently experiencing as far as I can tell. I should probably also mention that my diet has been absolute trash until recently, as I’ve committed to trying to get back in shape and maintain a healthier life style. I don’t even know where to begin as far as making appointments, and with which specialists and so on. If anyone has similar experiences and/or any helpful advice or recommendations, I would greatly appreciate the help. Thanks. *EDITED TO ADD- I forgot to mention two other possible symptoms. Depression and anxiety. I struggle with both. I also realize that it’s possible that I’m overreacting and jumping to conclusions. Apologies in advance. I’m beyond frustrated with this stupid rash and the muscle spasms.
  15. I was diagnosed with celiac disease two months ago and am trying my hardest to stick to a gluten-free diet. However, last week i went on vacation to the Dominican Republic and developed an itchy red rash on the back of one knee. I'm sure I occasionally glutened myself while I was on my holiday (though I tried my hardest) as it's incredibly difficult to not ingest it with all the buffets and language barriers. I've always been asymptomatic so I'm just wondering if it is dermatitis herpetiformis (it looks exactly like it) even though I've never had it before. Is it possible to develop symptoms when you've always been symptom free?
  16. Hi All, New to the forum - I have had eczema all my life and recently havehad the mother of all flare ups, used some aveeno prduct (contains oats) to try and moisturise but seems to have made it worse. On a researching the tinterweb I came accross this link with potential gluten alergies and DH. This flare up is the itchiest thing I have ever known, worse at night, not sleeping and has pretty much made me super miserable. I am off to see the doctor today, but just wanted to get your thoughts. Although I dont know if this is scabies or DH or just bad eczema, the symptoms seem very similar to those written in other post and its good to know I'm not the only one going through this, What do you guys think - Does this look like DH to you?
  17. Hi there! I hope anyone can help me... From a young age I have been diagnosed with atopic dermatitis. My mostly effected body parts are my hands, inner elbow(?) and the back of my knees. I've been using cortisone creams (weak and very strong ones) for as long as I can remember. I've never seen severe or any effect of using any of these.. My dermatitis do go away sometimes (usually goes away when I go on holidays to tropical countries). I would say I've had dermatitis for maybe 70-80% of my life. Two or three times I've had "flareups" on almost identical areas of my body. These flareups consist of dermatitis around my mouth (looks horrible and affects my self esteem a lot) and on my neck. I think the first time I had it was when I was 15 (it lasted for 1,5 years) then when I was 18 (lasted for 4-6 months) and I just got it again at age 21. I got extremely upset because I knew it would last for some time due to the past incidents. I searched for hours online, and tried thinking of correlations between the earlier flareups. I found an article about dermatitis herpetiformis which caught my eye. Because I was desperate to see improvement of the dermatitis I went gluten free the same day. At this time I'd had the rash for 3 weeks without ANY improvement, and it was especially bad in the mornings (maybe due to lack of lubrication during nighttime). The next morning I woke up and the dermatitis around my mouth was almost COMPLETELY gone. I was in shock!! I couldn't believe it was some sort of coincidence, so I continued eating gluten free and haven't seen the dermatitis around the mouth since then. Haven't been eating gluten for 2 weeks besides one time by mistake (I got signs of the mouthrash only an hour after eating). I also wanna add that I do get the typical liqiud-filled blisters that are characterized with dermatitis herpetiformis; in my moutharea and hands. Sadly I still have it on my hands, some on my neck and inner elbows, but I do feel it's less itching and irritated. I hope people can help me with my questions. 1) Could it be that I have both atopic dermatitis and dermatitis herpetiformis? Has anyone ever heard of that? Or is it possible that the areas that are still affected will get better by time? 2) I've read the only way to diagnose this disease is by skin biopsy; does this mean I have to be eating gluten in order to get a positive result? I really don't want to go around with the rash in my face when I know I can avoid it by eating gluten free.. 3) I couldn't find much about this online, but is it common to have other symptoms such as feeling tired and exhausted, migraine, anxiousness and depression etc... when having dermatitis herpetiformis?
  18. I got cross contaminated some time ago & the rash came back pretty badly. I've attached a photo taken on June 11th of my back. It was also in my scalp, around my neck, on my front, shoulders, inner wrists and more. Tonight I am not itching at all! I haven't itched all day long!!!! I can't take Dapsone because I'm allergic to sulfa drugs & Dapsone is a sulfa drug. Obviously that means I also can't take any of the other sulfa drugs that are used to treat dh after Dapsone is not an option. After those comes tetracycline. I really needed some relief! I began researching the dosage & particulars on tetracycline for dh. Extensive & exhaustive research did not pan out. The best I could find was treating Bullous phemphigoid. That said something like 500mg of tetracycline 4 times per day and about an equal amount of niacinimide. I really didn't want to take that much medication and in such strong doses. So my doctor (my PC doc) & I began experimenting. We tried Doxycycline 100mg twice a day. It seemed to be helping some but it just wasn't enough. Then we upped it to 200mg Doxycycline twice per day. It has taken about 5 days of that & I sit here not itching all day for the first time in a long, long time! This may not work for everyone. I did want to post it though as it is, at present, working for me. I am not thrilled at taking it but I have toughed this rash out before for years with no meds and I just couldn't do it again.
  19. len4ita

    DH...or not?

    Hello everyone! I have been following the forum for some time now but this is the first time I registered and decided to post as I need advice from someone who has experience with DH. I little bit of history...I was diagnosed with Hashimoto's few years ago. I started following gluten free diet which I realized was not very strict at that time meaning I stopped consuming gluten, wheat, etc. but I did not exclude the foods that were marked as 'possibly cross-contaminated with gluten'. I thought that is not so important at that time. Yet I have seen instant relief in my thyroid symptoms and my antibodies flew down every month. I also stopped consuming dairy at that time. Then, after about 10 months I was craving ice cream soooo much that I told 'ok, I will just have it one time'. Bad decision. Needless to say I ended up consuming ice cream and the wheat cone they put it in many times after that and my antibodies increased, too. At that time I noticed strong headaches, lack of attention, and itchy rash that appeared on my face. I started following strict gluten free diet again, the rash started to clear up veeeeery slowly, and few months later I finally decided to visit a gastro to get tested for celiac disease. Another mistake! She told me I need to introduce gluten again to get correct results. So I did it. I had another flare up and the worst headache ever I got in my life. I added gluten to my diet for 2 weeks only but I felt I could not continue this diet so I called off my next appointment. The gastro told me I could get a DNA test to know if I am career of the HLA DQ genes. I shall note that at that time I have been already tested for food intolerances and gluten came out as positive on that panel. Dairy was fine even though cow products were on the border (and I didn't consume much cow dairy at that time, mostly sheep and goat). I did a test with 23andme and had the results analysed through one of the sites that offer additional dna analysis services. I had one of the genes (DQ 2.2). I started a strict gluten free diet and this time I made sure I did not consume any cross contaminated foods as much as I could. This resulted in slow healing of my face rash and in about 9 months my face has been clean! I couldn't believe it. I was finally able to go our without foundation outside and everyone complemented my clear skin. I never had any specific gastro symptoms I shall say so again I was confused if gluten might be the culpit. I did introduce gluten for few weeks again and finally got blood tests done which, of course, came out negative (doctors said I shall consume gluten at least 2-3 months to get it accumulated). My face was flared up again but I was so confused and I was no longer sure if it is gluten, dairy, else....sigh...I started strict gluten free diet again. Then, I went to a birthday party two weeks ago and on the next day I woke up with very itchy rash on both on my hands. It basically was a very similar pattern on both hands starting around my wrists and spreading to my elbows. I have very sensitive skin and I first thought this is an allergic reaction but I had no clue to what it might be - I did not change any cosmetics, soaps, other detergents, no new jewelries (I have nickel allergy), clothes...nothing new. Yet I started with the usual anti-allergic treatments to find out the rash didn't disappear nor become much better within few days as it usually happens when I have a true allergy. Instead watery blisters appeared and the itch was awful especially approaching the evening. The blisters were small, then they grouped into larger blisters, those blisters that 'became better' turned into a very red scale marks. Again doctors said it is allergy but it responds very bad to those treatments (almost not at all) and even now, two weeks later I still have some blisters left, my skin still itches and it has very strange red color. The rash is just covering smaller area now (not to my elbows) but it is still there..argh! Anyone who has dealt with DH (Duhring's disease), please, advise does this rash resemble what you get with Duhring's: http://tinyurl.com/yc2g2oep, http://tinyurl.com/y9b5g3vk? I start wondering if I could have been glutened on the birthday dinner and with all the dairy around (iodine!) it might have just been an added extra to provoke the rash. I am sorry for the bad photos, I did my best to take them holding the phone with one hand. I also start wondering if what I had on my face might be related to DH. The rash on my face never had those watery blisters, it was more like hives, very very itchy. I might try to find some old photos of my face rash, too. Shall I seek further diagnosis and speak about DH with my doctor? I am so confused as to how to proceed. I even did a iodine patch test last night but my skin became very red and itchy within few minutes of applying the patch so I had to take it off after an hour. My heart was racing for few hours after that and I can still feel the place the patch was applied to as extremely painful.
  20. Hi, This is my first post and I would appreciate any help/advise really before I see my GP again next week. I am based in the U.K and I have been back and forward the doctors to try and get to the bottom of what is wrong with me but they keep fobbing me off. I am convinced I have celiac disease and Dermatitis Herpetiformis. I also believe my B12 levels are low and in the grey area and that I should be treated for this as I am showing lots of symptoms linked to low B12 levels. My sister has recently been diagnosed with celiacs. I have been getting this red, burning, itchy rash on my chin since the beginning of April. Almost like sunburn, very uncomfortable. It comes and goes. Then a couple of weeks ago I got some tiny singular blisters dotted around on my chin. I had been taking an iodine supplement and was unsure if this was causing the blisters. The doctor thought it was herpes and I have been on anti virals since. The blisters went but 2 have re-appeared today, symmetrically on either side of my chin. Another doctor I saw seemed to think it was Rosacea (he said he couldn't see the blisters although they were there) and has given me an anti inflammatory cream to put on my chin. This seems to have calmed the burning but I also have lots of yellow heads coming and going too (my skin is usually very clear so this is very unusual). And obviously the 2 tiny blisters have appeared again. I cannot interpret my blood results and wondered if anybody can help? I'm sure there are lots of people on here who know more than some doctors. My results read as follows: (I have copied what it says Tissu transglutaminase IgA lev - 0.3 u/mL Range: <10.00 u/mL Normal no action Anti-Tissue Transglutaminase (tTG Results between 7-10 u/mL are considered Equivocal B12/Folate Serum vitamin B12 - 241 ng/L Range: 200-770ng/L Serum Folate - 7.5ug/L Range: 3.90 - 26.80ug/L At one point last year while pregnant my B12 dropped to 169ng/L but I was never treated. I have read that you can have an IgA deficiency which can not show accurate results but I am wondering what levels mean you have this deficiency? Is 0.3 deficient? Does this sound like it could be Dermatitis Herpetiformis? I am new to all this and don't really understand it all to be honest so have been researching as much as possible. Sorry for the long post but I'm hoping somebody can help. Thanks
  21. Celiac.com 03/06/2017 - Dermatitis herpetiformis is an autoimmune skin-blistering disease which is commonly associated with celiac disease. The most common treatments are a gluten-free diet along with the addition of dapsone. DH that does not respond to either a gluten-free diet, or to dapsone, is treated with other immune-suppressing medications, but results have been mixed. Now, for the first time, a patient treated with rituximab therapy had resolution of both his pruritus and skin rash. "In addition, the levels of both anti-tissue and anti-epidermal transglutaminase antibodies normalized," said Dr. Ron Feldman of Emory University School of Medicine. Writing in JAMA Dermatology, Dr. Feldman and colleagues describe a man in his 80's with a five-year history of worsening DH. He was put on a gluten-free diet along with dapsone 50 mg daily, but his pruritic rash persisted. Dapsone was discontinued because of worsening anemia. He began treatment with 3 g sulfasalazine daily, but this was discontinued due to gastrointestinal symptoms. His disease worsened, and he was put on a tapering course of prednisone from 40 mg to 10 mg daily along with azathioprine titrated up to 2.5 mg/kg daily. However, his disease continued to worsen over subsequent months. He was then treated with rituximab according to the protocol used to treat lymphoma: four weekly infusions of 375 mg/m2. "Rituximab," says Dr. Feldman, "has already shown efficacy in the treatment of other autoimmune blistering diseases such as pemphigus and pemphigoid and may have relevance with other B cell mediated diseases in dermatology." Thirteen months after treatment, the patient experienced complete resolution of pruritus and other symptoms of DH, as well as normalization of antibodies against both epidermal and tissue transglutaminases. Not only was there a normalization of antibodies against both epidermal and tissue transglutaminases, the patient went into remission and has remained symptom-free for up to a year and a half thus far, said Dr. Feldman. There is some cause for excitement here, since rituximab is well tolerated and can potentially provide long lasting remission with removal of pathogenic autoimmune B cells. Dr. Feldman concedes that their patient did not have serious gastrointestinal symptoms, but remains "hopeful that rituximab may provide similar benefits for patients with celiac disease, in which anti-tissue transglutaminase antibodies play a role, although further research will need to be done to confirm this." Source: JAMA Dermatology, online December 28, 2016
  22. Yvonne (Vonnie) Mostat

    Did You Know? (Summer 2013)

    Celiac.com 03/04/2017 - A friend, knowing I was a "brittle" celiac with dermatitis herpetiformis, asked me last week if the first sign that I had celiac disease was a bloated stomach, as she pointed to her post-Christmas stomach. (You never want to ask a woman when her baby is due.) I told her that celiac disease is not like a cold. You do not take two tablets and hope to be cured by morning. Since this disease of connective tissue can take specialists an average of eleven years to diagnose, go see your doctor. A bloated stomach can also be a sign of gall bladder disease, colitis, Crohn's disease, diverticulitis, or many other conditions including the big "C". Did you know that some experts still say that the blood screening tests (EMA) or (tTG) may "suggest" that a person has celiac disease, but these blood tests do not replace the need for a series of intestinal biopsies? Even then, a person recently afflicted by this type of gluten allergy may not have suffered long enough for the villi in the lower bowel to be flattened. Those of you who are "in the know" are aware that these amazing little wavy hair-like structures absorb vitamins and minerals into the body. Did you know that new data suggest that less than 50% of newly diagnosed patients with celiac disease present with the classic gastrointestinal symptoms of bloating, abdominal pain, diarrhea, and/or constipation. In a recent Canadian celiac healthy survey of 2681 adults with biopsy proven celiac disease, many other symptoms were revealed including extreme weakness or fatigue (68%), anemia (66%), mood swings or depression 44%), bone or joint pain (38%), easy bruising (35%), nausea or vomiting (29%), aphthous ulcers (26% - small ulcers, especially the whitish or reddish spots in the mouth characteristic of aphthous stomatitis. Aphthous ulcers are what I call canker sores, or alternately Sutton's disease, and are classified according to the diameter of the lesion. Many aphthous ulcers have the same appearance as minor ulcerations but are greater than 10 mm in diameter and are very painful. In desperation, my Mother was using a small amount of powdered Alum applied with a Q-tip. It leaves a horrible taste but it works - again see your doctor. Recurrent aphthous stomatitis is one of the most common oral conditions affecting at least 10% of the population, (see aphthous ulcer-Wikepedia). They usually take more than a month to heal and frequently leave a scar. The term aphthous stomatitis is a condition characterized by recurrent discrete areas of ulceration that are almost always painful. They can occur on the tongue, lips, cheeks and in rare cases on the uvula. Other common symptoms are also listed on the Canadian Celiac Association website at: (http://www.celiac.ca/pdfs/Hidden&Dangerous.pdf ) including dental enamel defects, arthritis, delayed puberty, abnormal liver enzymes (alanine aminotransferase and aspartate aminiotransferase), infertility in both men and women, neurological conditions such as unexplained ataxia (unexplained failure of muscular co-ordination) or peripheral neuropathy, and epilepsy with occipital calcifications. The new screening tests have exposed the many other presentations of celiac disease. But, no wonder we get confused! A first-person story of a man who went for the bowel biopsy and the report noted on the bottom of the page that the specialist had failed to biopsy the jejunum. Did you know that untreated celiac disease can result in nutritional deficiencies (especially iron deficiency anemia) an increased risk of osteoporosis, lymphoma, and reproductive complications such as miscarriages and infertility and possible development of other autoimmune disorders? Did you know that immediately on follow-up, after diagnosis, testing should be conducted for nutrient deficiencies, to determine bone mineral density, and for other autoimmune diseases. I garnered a lot of the above information from the site "celiac disease - hidden and dangerous", Shelley Case, BSc RD and Paul C. Adams, MD, Editor-in-Chief of the Canadian Journal of Gastroenterology. Did you know that a number of studies in Europe and the U.S.A., over the past ten years, investigating both children and adults with celiac disease, have revealed that consumption of moderate amounts of pure, uncontaminated oats is safe for the majority of people with celiac disease? (editor's note: Please see Dr. Fine's dissenting comments in the Spring 2013 issue of The Journal of Gluten Sensitivity.) Either I am one of the minority that can't consume oats, or oats are contaminated in the United States and Canada and I have the dermatitis herpetiformis spots to prove it. I recently went into a Health Food Store and bought some granola bars that said on the label: "Wheat Free, Gluten Free and Dairy Free", and had a special red label on them stating "Gluten Free". I did not follow my own "caveat emptor" rule and simply ‘assumed' that the label was correct. Within 24 hours my scalp was tingling. By the next day, sores could be seen lining up at the back of my head, a few on my forehead, and even the inside of my ears took a hit this time. We counted back two days and went on a search. My husband found the granola bars. They contained oats! I can no longer increase my Dapsone dosage because it causes me to develop anemia and methemaglobinemia. (I had three hospital admissions last year for methemaglobinemia, so I saw my physician for more Prednisone.) I was a mess - soaking my head with cold water. I even considered shaving my hair off. (I'm only joking, but it was bad!) When I was diagnosed with dermatitis herpetiformis fifteen years ago I was told I should not take the "oat challenge" until I had been totally free of dermatitis herpetiformis outbreaks for at least a year. That has yet to happen and I consider myself careful about avoiding gluten. Did you know that it only takes 0.1 grams of gluten {that is 1/149th} of a slice of bread to damage your intestine? Did you know that gluten is often a hidden ingredient in many goods because American and Canadian labeling regulations do not require manufacturers to declare all components of ingredients (e.g. seasonings, modified food starch and hydrolyzed vegetable proteins). RECOMMENDATIONS: Check the ingredient labels of processed foods each and every time you purchase one. Changes frequently happen. Learn and memorize ingredients that are not gluten-free, or are questionable. I laminated several lists to take shopping with us. Cross-contamination in the manufacturing process is also a significant concern. Look for products that have been certified gluten-free by one of several gluten-free accreditation groups. If you see a logo on a package for the "Gluten Free Certification Organization" or the "Celiac Sprue Association Recognition Seal" you can feel confident that the products is gluten-free. Both of these programs provide a list of accredited companies on their websites. Read more about national ingredient labeling policies at Celiac.com. You can often learn which manufacturers always declare gluten, if it is present, on their ingredient labels. Just look on the manufacturer's "statements" page. I have found that it is valuable to learn these company names for ease of mind when reading their ingredient labels. If in doubt, contact the manufacturer. Many have their gluten-free information online, or place a phone call to their customer service representative. This contact information is usually on the packaging of each product and is often a 1-800 toll free number. Did you know that there is a vitamin supplement in a lot of health food stores, R.B,C.; made by Enzymatic? Amazingly it does not list Vitamin C in the way it normally appears on labels. It lists 60.0 mg of ascorbic acid. Since taking this vitamin daily, along with 2,000 units of Vitamin C, I have happily hit the best number on the normal hemoglobin scale. Did you know that damage to the villi in your lower intestine may not completely heal after living on a celiac diet for a whole year? The resulting loss of vitamins, minerals, and calories can cause malnutrition despite following an adequate diet. Celiac disease impairs digestion, absorption, and can lead to other food allergies. Did you know that celiac disease is the most common autoimmune disorder in North America? It can occur at any age including among the elderly, as well as in obese patients and those with constipation. The wide variety and severity of symptoms frequently results in misdiagnosis. A study out of Columbia University reported average delays of 11 years after the development of symptoms. Before diagnosis, 31% of the American survey respondents had consulted two or more physicians about their symptoms. (http://209-166-208-58.cust.walrus.com/D_Research/Characteristics_of_adult__1.pdf) It requires a team approach: you, your medical history, a physician, a dietician and a celiac support group. An individualized treatment plan should be developed, together with regular follow-ups to monitor compliance, nutritional status, and provide additional information and ongoing support. Good dietary compliance will reduce the risk of complications and associated health care costs, and improve the quality of life for patients with celiac disease. (celiac disease - hidden and dangerous) Did you know that Medwire News in November 2010 indicated that dermatitis herpetiformis can go into remission? At that time they were discussing an attempt to wean patients with well-controlled disease from a gluten-free diet and/or using pharmacotherapy, to see if the condition has indeed remitted. Remission was defined as an absence of skin lesions and symptoms for more than two years while not taking sulfones or other therapies and not adhering to a gluten-free diet. No-one seems to know why it goes into remission. That means that you and your clinician should be aware that if you have had no outbreaks of dermatitis herpetiformis for more than two years, while on a strict gluten-free diet, your condition could have gone into remission and perhaps should be re-evaluated. Since I have not passed the six month mark yet after sixteen years I can skip this one! (dermatitis herpetiformis remission can occur/News-MyDERM) I must admit that I am wary of this information because I was told by a dermatitis herpetiformis specialist that I would likely be on Dapsone for the rest of my life, and he has not heard of anyone whose dermatitis herpetiformis has gone into remission. If you have, please let us know (case histories needed please!). The web site "Healthier Talk" lists all the hidden dangers of celiac disease. It says that if you are suffering from celiac disease you should check your vitamins because a new study shows that you could be missing more than eating gluten; you could be badly lacking in critical nutrients. Researchers at the University of Alberta in Canada checked 43 celiac patients between 3 and 18 years of age and found that fewer than half of them had healthy levels of Vitamins K and D (salads and sunshine). The low K levels are probably due to the fact that celiac patients often have a hard time absorbing vitamins. Statistics say that over three million Americans are impacted by this gluten allergy. The low D levels could be for the same reason, but then the sunshine vitamin is one of the world's leading nutritional deficiencies. More suggestions: Tell your dentist that you have diagnosed celiac disease. He will then be watching for abnormal tooth enamel, discoloration of the outer part of the tooth, ridging and dull grooved and pitted teeth with edges that can become uneven and rough. If you or your significant other are seeing a gynecologist for investigations with regard to infertility, have you told him or her that you have celiac disease? Have you let your Pharmacist know that you have celiac? If you ask him often enough to check with the product manufacturer about whether a flour or gluten binding agent is used in the making of their medication he will probably remember your allergies. (I endured an outbreak of dermatitis herpetiformis all over my scalp, thighs, upper arms and sadly even my ears after using a prescribed liquid medication that had wheat germ in the product and was used in machinery that made other medications made with gluten in them.) Have you told your hair stylist that you are a celiac and cannot use shampoos or cream rinses or hair sprays that contain wheat germ oil? Five years ago - after another outbreak - my hairdresser checked the shampoo she had been using on my hair and it contained wheat germ oil. Is your child small for "his/her age"? Is she/he always complaining of abdominal pain or that certain foods make him sick? How many other people in your immediate family have similar symptoms? Have you asked your local fish and chip shop if they fry their "chips" in the same oil as they cook their battered fish? And are the chips floured prior to frying? Have you thought of calling ahead to a restaurant prior to going out for a meal with good friends, and determining what, on the menu, would you be able to eat? That means checking the ingredients section at the back of the industrial sized cans, which restaurants are often happy to do during their low traffic hours. It may save some embarrassment when you have to discuss your health problems with a waiter/waitress. Good restaurants are going to care, and they want your business. News: Did you know that BIG PHARMA thinks you need drugs? They are hard at work on medications, and even vaccines for celiac sufferers. Most of these drugs are in development stages and only allow disease sufferers to eat small amounts of gluten. There is no word yet on what the side effects may be. However, that has not stopped "Big Pharma" from banking on these medications. They expected them to reach the market by 2012 and do $8 billion in sales by 2019. Don't wait for these medications. Eat celiac-sensibly now. I have found that every medication has a side effect and it could pick you! Remember celiac disease is not an allergy as some people think of an allergy. It is an autoimmune reaction triggered by exposure to gluten. The immune system attacks its own body, damages the villi in the bowel and wreaks havoc with absorption of the nutrients that your body needs to stay healthy. December 21, 2012: Scientists say that they are still working on a pill that may one day help people with celiac disease tolerate foods that contain gluten, a protein that is found in wheat. Alvine Pharmaceuticals ALV003, has progressed the farthest in this quest to bring a drug for celiac disease to market. ALV003 has received fast track designation from the U.S. Food and Drug Administration. Its approach involves a potent digestive enzyme that can help break down gluten before your immune system reacts to it. Phase IIa trials of ALV003, as a treatment for celiac disease, showed promise, and the company said it hoped to begin its Phase IIb trials late in 2012. However ALV003 will not allow you to eat unlimited amounts of gluten. At best, it is expected to protect against smaller amounts of such as that seen in cross-contamination of foods. It is now estimated that about 2 million people in the U.S. have the disease. Statistics indicate that as many as 1 in 133 people may have it. Among people who have a first degree relative diagnosed with celiac disease as many as 1 in 22 people have it. (celiacdiseasestatisticsemediv.com) Other news articles show that many people feel better on a gluten-free diet. It may be a difficult diet to follow but it is healthier and forces you to read labels to see how much "junk" goes into a box of cereal. Dermatitis Herpetiformis Did you know that dermatitis herpetiformis is listed as a "rare disease" by Ophanet , a consortium of European partners? [statistics about dermatitis herpetiformis - RightDiagnosis.com]. Mine is a multi-tiered family, with myself and my brother diagnosed with celiac disease as adults, and my brother's son diagnosed with celiac disease as an adult. My own adult son finds that he feels much better when he avoids breads and baking. I likely had dermatitis herpetiformis as a child in England, with lesions all over my arms and hands. It was mistakenly diagnosed as having either eczema or dermatitis, depending on the specialist. My nephew knows that he has celiac disease but he cheats and lately he has suffered from dermatitis herpetiformis lesions on the bottom of his feet. I can usually count back 48 hours and am able to deduce my error. My nephew knows that a hamburger is going to do it to him every time! You eat, you pay. He might be wise to approach the disease with increased determination before it exacerbates and adds another connective tissue disorder to his file. I was told by the head of the Department of Dermatology at the University of British Columbia, that the gold standard for diagnosing dermatitis herpetiformis is still a rapid response to daily Dapsone ingestion. To have celiac disease and dermatitis herpetiformis requires having a sense of humor because the research changes yearly, if not monthly, and web site statistics are not always consistent. Dapsone Please read the side effects to this wonderful drug. It saved me from going mad, shaving my hair off and scratching my legs with a comb! It can cause anemia and one of its side effects is that you do not feel hungry. They call it anorexic, but I do not refuse to eat. I just forget to eat. Unless I look at a clock I do not know it is "time" to eat. For the anemia I was told by the dermatology specialist to take 2,000 mg of vitamin C daily, not the 1,000 mg that is usually prescribed. It is enough to make you crazy! Some people with celiac disease believe that if they adhere to a strict gluten-free diet they can be cured and need no further medical or dietary supervision. A second-hand story: I was told that there is a distinction between U.S. icing sugar and Canadian icing sugar. I found a response on the Web to the question "Is powdered sugar gluten-free?" Powdered sugar is usually gluten-free, but it is important to check the label. Some brands even label the package as gluten-free. Most commercial powdered sugars are blended with corn starch to keep them fluffy. Occasionally some manufacturers have been known to use wheat products instead of corn starch, so always check the label every time you buy. My last Did you know - You can always make your own powdered sugar just by putting sugar in your blender or food processor until it is fluffy. Then you will know what is in it! News from the oslo conference, March 1, 2013 - Medical Daily: The widely used method of measuring gluten levels is inaccurate. - your gluten-free beer might not be as celiac safe as you thought. FDA approved active ingredient quickly relieves itch, rash and pain: Terrasil is the only "itch, rash and pain" skin treatment available that features patented activated minerals, a unique blend of volcanic clay (Bentonite), zinc oxide and magnesium oxide. These three ingredients support the natural production of new, healthy, clear skin. Bentonite absorbs impurities from damaged skin and supports restoration, while magnesium oxide boosts collagen synthesis. Zinc oxide possesses anti-inflammatory and astringent (drying) properties; also essential to the healing process. Activated minerals work harmoniously to begin repairing skin on contact for rapid and incredible results. It is listed on the "Treatment for Dermatitis Herpetiformis Symptoms" web site. It sounds like a commercial but I am buying it anyway and will let you know. One testimonial claimed that within a day the itch was gone and the inflammation went down. Gluten Free Expo coming to Texas in March! Not enough notice? Too far to travel? Me too, but people who are unable to attend the event in person may sign up to view the conferences via a live stream. Tickets can be purchased in advance via credit card or PayPal on the Expo's official website here: http//www houstonvlutenfreeexpo.com/janet Rinehart (Janet is the chairperson of the Houston Celiac Support Group. Three new products I can rave about: "The Nearly Normal Cooking For Gluten Free Eating" I found this under gluten-free cookbooks on amazon $15.99. "The Nearly Normal Gluten Free Flour Mix" is fantastic! Wow! Even got five out of 5 stars on the web, but I had tried it myself before reading that information. My husband said he could not tell the difference between, what he calls "normal muffins" and gluten-free muffins. The last one, Heartland Gourmet Gluten Free Chocolate Brownie Mix is also dairy free. Another gluten-free brownie mix for people on the run - Heartland Gourmet Gluten Free Chocolate Brown Mix. It is also dairy free, and you cannot tell the difference, another plus. Cheers until next time.
  23. Iodine testing for DH: This is an old procedure used to create DH blisters. By applying a 30 percent solution of iodine as a patch, a DH outbreak can be created. This may be applicable in some patients when a biopsy is needed and no blisters are available. Immunofluorescence: The indirect immunofluorescence test shows that the serum of a patient contains specific antibodies that bind to different areas of the epithelium. The direct immunofluorescence tests by a skin biopsy shows a specific diagnosis pattern of DH. Traditionally this biopsy is obtained from the buttocks. If no outbreaks are observed in this area, the biopsy is recommended for another area where the itching is observed. DH Drugs: The common drugs used to initially control the blisters are: Dapsone, Sulfoxone, and Sulfapyridine. Each one has different advantages/disadvantages or availability in the treatment of DH. Dapsone changes the life span of red blood cells from an average of 120 days to 30 days. Dapsone is known for possible hematologic changes as a common side effect.
  24. Yvonne (Vonnie) Mostat

    Did You Know? (Winter 2017)

    Celiac.com 01/11/2017 - Did you know that Advertising has "Cottoned onto us?" In December all the magazines are about baking, foods, cakes and bakes, candies and calories. If you are not aware of what "Cottoned up" actually means, it means that even if we have celiac disease, gluten sensitivity or dermatitis herpetiformis, they know that in December, prior to Christmas, we are geared up to baking tasty, sweet, gluten-free treats. And in January we are into healthy eating, like natural soups, low calorie warm and nutritious eating, cost saving ideas, because we have just gone through Thanksgiving gluttony and Christmas eating. At one time we celiac people did not have the options that we have today. It was white rice bread from the freezer of the store, full of frosty tops, and vague cookies that cost $3.00 each. Now we have so many options we can get fat too, starting with Thanksgiving right up to New Year, when the new magazines come out with calorie cutting ideas, weight loss regimes, and a stringent diet! Did you know that celiac disease affects people differently? According to the The University of Chicago Celiac Disease Center: "There are more than 200 signs and symptoms of celiac disease, yet a significant percentage of people with celiac disease have no symptoms at all. However, people without symptoms are still at risk for some of the complications of celiac disease". For example, my 19 year old grandson's girlfriend has celiac disease, and she likely had it all her life. She was tested for celiac disease because she had "tummy aches before I write exams". That was it! Fortunately she had a bright mother who took her to the doctor and asked for the simple blood test for celiac disease. Sure enough, after doing the blood test and undergoing the biopsy of the jejunum, she had celiac disease. She was not skinny because she was 18 and growing, she was skinny because of malabsorption and eating her daily breakfast of cinnamon toast, and her usual lunch of peanut butter and jelly sandwiches. I am a little wary of the biopsy of the jejunum because as a nurse I found several discrepancies in the testing process. I have seen where a gastroenterologist who did failed to biopsy the correct area and told patients that they were negative for celiac disease. The patients became quite ill and the test was repeated by another gastroenterologist, and the test proved positive for celiac disease. In other words, the two patients did indeed have celiac disease. Did you know that the Head of dermatology at the University of British Columbia recommends Dapsone as the drug of choice for clearing up dermatitis herpetiformis? It is called the “Golden Standard” of treatment, which he teachers to all his students of dermatology. I had three biopsies of the lesions on three different places in my body. It was not until the fourth biopsy that they acquired a Positive for dermatitis herpetiformis. It is very difficult to obtain punch biopsies of the DH. But if they put you on Dapsone for four days the lesions begin to clear up almost immediately. It took longer for the lesions in my scalp to go away, around six month, and four days for those on the other parts of my body to disappear. And they were so itchy (as any of you with DH know) that I actually contemplated cutting all my hair off. I tried Quellada liquid thinking it might be fleas, bed bugs, or some other strange skin disorder. "A little learning is a dangerous thing", that is what they say to all nurses. Those of you who are newly diagnosed with DH and placed on Dapsone, please remind your doctor if he has not already told you that Dapsone can cause anemia. I was advised to take 2,000 Units of Vitamin C daily because it helps significantly with the anemia. According to an article by Lisa Fittterman in the Winter 2016 issue of Allergic Living magazine, a 28 year old California Mom was stymied by her child's reactions and celiac outbreaks because they are so vigilant about reading labels when shopping. The culprit was a new generic controller inhaler for her asthma. The Mom looked up the medication on the Internet and saw the word, "Starch". She says the drug turned out to contain gluten as an additive. She hit roadblocks at every turn. With celiac disease now affecting 1% of the people in North America, "drugs can present a distressing unknown". What is an excipient they ask? Inactive ingredients used as binding agents tent to give bulk and allow them to absorb water and disintegrate. They are derived from foods such as corn, potato or wheat starch. Independent investigations have shown that wheat starch is used less frequently than the other two because it doesn't bind well." When you ingest a new drug without knowing what it contains it is like walking down a road blindfolded says Sue Newell, the Canadian Celiac Association's manager of operations. "We teach people how to read labels and cut through jargon to identify every ingredient - but with prescription drugs they can't do that...they may need to take drugs, but they don't feel safe." The US. Based National Foundation for Celiac Awareness (NCA) released in the Fall of 2014, almost 25 percent of the 5,625 people with celiac disease and gluten sensitivity reported having experienced gluten-related symptoms to medication. Patients and health–care providers said this has led to anxiety and non-compliance in taking drugs. Both Canada and the U.S.A. Food and Drug Administration have national standards of less than 20 parts per million (ppm) of gluten for a packaged food to claim to be gluten-free, but the requirements for food labeling do not apply to prescription or over-the-counter drugs. In May 2015, the FDA denied the request of a citizen's petition to either ban gluten as an inactive drug ingredient or require that its presence be labeled. The FDA said that "No oral-drug product is expected to contain more gluten than the amounts potentially present in foods that can be labeled 'gluten-free' under the FDA's food-labeling regulations." It is far from an official requirement in Canada. The Canadian Food and Drugs Act sets the regulations for labeling gluten and allergens, but the focus has been far more on food. A Health Canada spokesperson says that the 2014 plain-language labeling initiative additionally makes it necessary for pill package inserts to list ingredients. But Newell of the CCA says these listings are not as transparent as they sound. Though the protein is not often present in our medications, the bad news is that finding out for certain may take the skill of a detective or a sleuthing pharmacist. It is time for the celiac and gluten sensitive community, to unite and fight, write letters, speak to their pharmacists and repeat the fact that the person ordering the drug is "A brittle celiac," and all drugs need to be researched by the pharmacist prior to filling prescriptions. Steve Plogsted, a pharmacist with a special interest in tracking gluten, suggests: "Watch for the word 'STARCH' as an excipient on a medicine, as it's the only likely culprit to contain gluten. If the word is there, try to drill down through the manufacturer as to what kind of starch. If it is wheat, you will need to avoid it." One man took a stand for gluten-free drugs. Michael Weber was diagnosed with celiac disease on 2004, and immediately adopted the gluten-free diet to protect his health. BUT, after taking a generic for only a few days, the resident of Eastchester, New York, was distressed to find he was again developing symptoms, such as the dermatitis herpetiformis skin rash he had incurred before the condition was discovered. It turned out the pills contained gluten as an inactive ingredient. Shocked to find this undeclared exposure after he had been so careful, Weber contacted the FDA, but he was informed that the manufacturer wasn't braking any rules by not stating gluten's presence overtly. In 2008, Weber filed a citizen's petition requesting that the FDA either ban gluten outright in medications, or require manufacturers to label for the protein. Then, for seven long years, he got politicians to write letters of support, and made follow-up inquiries, but he received no replies. Finally, in 2016 the U.S. consumer protection group Pullback Citizen filed a lawsuit to elicit a response from the FDA. Last May the agency issued a 21 page decision that denied the request for a ban and stated that manufacturers already needed to identify gluten as an intentionally added inactive ingredient to any drug that is taken orally. The FDA said it did, however, plan to issue "draft guidance" for industry regarding gluten in drug products, but no time-line was given. FDA spokesman Stephen King explained the decision in an interview saying that if people with celiac disease are doing well on a gluten-free diet, they "should" not be harmed by the very low amounts of gluten potentially present in oral drug products. Conversely, if they aren't doing well, "we would expect {them} to consult with [their] physician about ways to further reduce overall exposure to gluten. Such efforts might first focus on the diet as the most significant potential course for oral gluten exposure." But Katie Einspanier, Weber's lawyer through Public Citizen, criticized the ruling as nothing more than a super-technical reading of the petition since the FDA's response focused on the possibility of gluten itself being an inactive ingredient. "The most likely scenario for gluten in drugs is that gluten is simply a natural component of another inactive ingredient and not separately added as an inactive ingredient." Weber is considering whether to draft a new petition with more precise language. We will keep you informed regarding this one man's fight for gluten-free drugs. He needs to be cheered, and we all need to sit down at our computer and help by writing to pharmacists, the FDA, and the College of Pharmacy.
  25. The the connection between iodine and Dermatitis Herpetiformis is briefly described by the following excerpt from a resource guide of the Gluten Intolerance Group of North America: Iodine can trigger eruptions in some people (with dermatitis herpetiformis). However, iodine is a essential nutrient and should not be removed from the diet without a physicians supervision. Iodine does not contain gluten. Iodine can worsen the symptoms of skin lesions in patients with dermatitis herpetiformis. When the deposits of IgA have been cleared from the skin over time by following a gluten free diet, iodine should no longer present any problem for dermatitis herpetiformis patients. As background, for those who are not familiar with Dermatitis Herpetiformis, the following description comes from a resource guide of the Gluten Intolerance Group of North America: Dermatitis herpetiformis (dermatitis herpetiformis) is a chronic disease of the skin marked by groups of watery, itch blisters. The ingestion of gluten (the proteins gliadin and prolamines contained in wheat, rye, oats, and barley) triggers an immune system response that deposits a substance, IgA (immonuglobin A), under the top layer of skin. IgA is present in affected as well as unaffected skin. dermatitis herpetiformis is a hereditary autoimmune disease linked with celiac disease. If you have dermatitis herpetiformis, you always have celiac disease. With dermatitis herpetiformis the primary lesion is on the skin rather than the small intestine. The degree of damage to the small intestine is often less severe or more patchy then those with only celiac disease. Both diseases are permanent and symptoms/ damage will occur after comsuming gluten. When my husband was diagnosed with dermatitis herpetiformis last November, he went to visit a expert in dermatitis herpetiformis, Dr. John J. Zone, at the University of Utah (USA). The written instructions Dr. Zone gave him included the following statement: The mineral iodine is known to make the disease (dermatitis herpetiformis) worse. For this reason, foods and supplements high in iodine should be avoided. Table salt which is not iodized should be used. This can be found in most grocery stores with the other salts. Avoid kelp and other seaweed products, and do not use sea salt. If you take any nutritional supplements, examine them carefully to avoid any iodine containing ingredients. It is not necessary for dermatitis herpetiformis patients to eliminate iodine completely from their diet, merely to avoid foods high in iodine as described above. Dr. Zone also explained that dermatitis herpetiformis patients need not avoid iodine indefinitely. Iodine is an important mineral for our bodies. dermatitis herpetiformis patients can stop avoiding iodine when their rash symptoms clear up which can take anywhere from a few months to a couple of years on a gluten-free diet. More about iodine: Intake of large amounts of inorgana iodide is known to exacerbate symptoms and a few patients have been reported to improve on low iodide diets. However, this is not a mainstay of treatment and need only be considered if patients are consuming excessive iodide in the form of vitamin pills, kelp, or seafood. Likewise, some patients have reported exacerbation with thyroid hormone replacement therapy and thyrotoxicosis. In such cases, excessive thyroid replacement should be avoided and thyrotoxicosis treated appropriately. Dermatitis Herpetiformis, John J. Zone MD, Curr Probl Dermatol, Jan/Feb 1991, p36 Dermatitis Herpetiformis is considered a rare skin disease. The true incidence and prevalence of dermatitis herpetiformis appears to vary in different areas of the world and may vary within the same country. During 1987, 158 cases of documented dermatitis herpetiformis were identified in the state of Utah out of a population of 1.6 million, a prevalence of 9.8 per 100,000. Dermatitis Herpetiformis, John J. Zone MD, Curr Probl Dermatol, Jan/Feb 1991, p15