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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. 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
  3. Celiac.com 08/05/2017 - I was told that I had irritable bowel disease about thirty years before being diagnosed with celiac disease. I avoided hard to digest foods such as corn, broccoli, beef and other foods difficult to digest, and instead I would, for instance, eat the bun of a hamburger, avoid steaks but eat the buttered buns and the gravy with a main meal and wondered why I was still having the gut and bowel reactions! Did you know that even in the absence of fully developed celiac disease, gluten can induce symptoms similar to FBD (Functional Bowel Disorder)? Doctors such as Elena F. Verdu, David Armstrong and Joseph Murray describe celiac disease and irritable bowel syndrome (IBS) as the "no man's land of gluten sensitivity.” Celiac disease is a condition traditionally characterized by chronic inflammation of the proximal small intestine resulting in villus atrophy and malabsorption. Irritable bowel disease is a clinical syndrome defined in the most recent Rome III consensus by the presence of abdominal pain or discomfort, at least three days per month in the last three months, and two or more other symptom features: 1) Improvement in defecation, 2) Association with a change in stool frequency, and 3) Association with a change in stool form or appearance. Other GI symptoms, such as bloating and distension are also considered to be consistent with a diagnosis of FBD (Functional Bowel Disorder) such as IBS. Did you know IBS has a prevalence of about 10% and is the most common GI disorder in our society, imposing a very high economic burden in North America? Did you know that there is an overlap between IBS and celiac disease? It has been reported that testing for celiac disease in patients with diarrhea-predominant IBS is cost effective if the prevalence of celiac disease is above 1%. Not only do the symptoms of IBS and celiac disease overlap, but epidemiological studies also suggest a greater than by chance association (4 - 5 fold increased risk). By convention, a patient with confirmed celiac disease is no longer considered to have IBS. It has never been determined whether celiac disease and IBS cannot co-exist, and there is no reason to think that a diagnosis of celiac disease necessarily precludes a diagnosis of IBS. Dr. Fasano has concluded that about 3% of patients with a "clinical" presentation of IBS were subsequently diagnosed with celiac disease. I would wager that many of you with confirmed celiac disease may also have the symptoms of irritable bowel disease. I cannot be alone in this! I can check off the symptoms of IBS on many occasions and yet I have diagnosed celiac disease and dermatitis herpetiformis. In Dr. Fasano's report: "they have concluded that gluten induced Patho-physiology may constitute an underlying factor in symptom generation in a proportion of patients with IBS like symptoms." A lot of this wording may seem like Greek or a "little over ones head" so to speak, but I believe what they are saying is though we define gluten sensitivity as a condition of some morphological, immunological, or functional disorder that responds to gluten exclusion and NOT a true disease. Gluten sensitivity changes that occur with IBS because of exposure to gluten are eventually going to show up positive for celiac disease. Why would a person who has been diagnosed and KNOWS that they have irritable bowel disease continue to ingest gluten when Fasano et. al., have concluded that about 3% of patients with a "clinical" presentation of IBS were subsequently diagnosed with celiac disease? Did you know that in July of 2016 teams of researchers at Columbia University published a study confirming that wheat exposure response is, in fact triggering a systemic immune reaction and accompanying intestinal cell damage. "It is estimated that the impacted population is equal to or even exceeds the number of individuals with celiac disease, the vast majority of whom remain undiagnosed" Dr. Armin Alaedin confirmed. Finally they are reporting that a person with irritable bowel disease may have gotten that way from ingesting gluten. Celiac Disease and Dermatitis Herpetiformis – Did You Know? 15 - 25% of individuals with celiac disease experience dermatitis herpetiformis? Dermatitis herpetiformis is a skin manifestation of celiac disease and is part of the abnormal immune response to gluten; Affects more men than women? Dermatitis herpetiformis generally starts in adulthood. It is not common to see dermatitis herpetiformis in children, but it can occur; Only about 20 percent of people with dermatitis herpetiformis have intestinal symptoms of celiac disease, however, biopsies show that 80 percent have some degree of damage to the small intestine, especially if a high gluten diet is maintained; If you suspect dermatitis herpetiformis you may have celiac disease; Iodine is something that a person with dermatitis herpetiformis should definitely avoid; One of the oldest checks for dermatitis herpetiformis was putting some iodine on ones thigh; Dermatitis herpetiformis sores tend to run in a line, or stay in a cluster; Dermatitis herpetiformis treatment consists of a gluten-free diet for life, just like in celiac disease? The skin's response to the gluten-free diet is much slower compared to the healing of the intestines in those with celiac disease. It may take about six months to achieve improvement, though with my own dermatitis herpetiformis spots daily dapsone was miraculous. It did take up to a year for the sores in my scalp to heal. Dr. John Zone, M.D. Professor and Dermatology Chair at the University of Utah and CDF Medical Advisory Board member states "There is little question that ingestion of large amounts of iodine dramatically worsens dermatitis herpetiformis," he continues, "iodine does not cause dermatitis herpetiformis. It worsens dermatitis herpetiformis. Gluten causes dermatitis herpetiformis." Dr. Zone explains that through seeing hundreds of celiac disease patients over the years, he has found that some react to highly concentrated solutions of iodine in cough medicines, shellfish, and kelp, which is often found in Sushi. He also cautions that dietary supplements may contain large amounts of kelp or iodine (usually in the form of potassium iodide or sodium iodide) which can worsen dermatitis herpetiformis. I can share with you that I was incorrectly told over 25 years ago by an internist that I could take up to five dapsone, going 5- 4 - 3- 2 -1, and if the spots had not totally disappeared I could repeat the process. Taking too much cased a blood disorder called Methemaglobinemia, a rare but dangerous response to taking too much dapsone. It is a blood disorder in which an abnormal amount of methemoglobin is produced. Hemoglobin is the protein in red blood cells (RBCH's) that carries and distributes oxygen to the body. Methemoglobin is a form of hemoglobin, with it the hemoglobin can carry oxygen, but is not able to release it effectively to body tissues. It can either be passed down through families (inherited or congenital) or be caused by exposure to certain drugs, chemicals, or foods (acquired). My nephew was on dapsone, which is, according to the Head of Dermatology at the University of British Columbia, the true test of dermatitis herpetiformis. By taking Dapsone for three or four days the lesions (itchy/sore blisters that beg to be itched, and when you do you break open a lesion that appears to contain liquid...they burn, then they crust, and if you continue to pick off that crust they scar your skin.) almost disappear like magic. My nephew thought it was permissible to cheat once in a while and thought that he could get away with it. He used to eat hamburgers every time the craving for a "Big Mac" overcame him! He ate one, or maybe two, until he found out he had dermatitis herpetiformis sores on the soles of his feet and was limping from the pain. Who knows what damage he was doing to the villi in his bowel! It is a vast no man's land out there, but if you are a celiac and have dermatitis herpetiformis or are gluten sensitive you need to step into that “land” and learn more about the diseases and what is going on in your body!
  4. 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.
  5. Hi All, I came across this forum after trying to research my diagnosed condition of Linear IgA Bullose Dermatosis. I began having a burning sensation associated with blisters that began to occur after taking amoxicillian back in April 2014. The blisters occur mostly on the palms of my hands and bottoms of feet. I did suffer through an entire body rash which became extremely itchy before beginning to take Dapsone to treat the condition. Now my flare ups are only on my hands and feet when I don't stay on top of the meds. This is where I started to hear more about becoming Gluten Free. I was tested for Celiacs Disease and the tests came back negative. then I tried to be gluten free for month just to see if it would help my flare-ups. It did not seem to make a difference. But now I am stuck taking Dapsone as the only medication which has worked to "band-aid" my disease. I found it interesting that many people with DH take DApsone and I would like to connect with these people. I feel stuck and as if I have no hope of dealing directly with healing my disease to try and better it permanently. I want to take action and I believe that trying a gluten free diet may be part of that. For those of you taking Dapsone, do know of any major long term side affects? It seems there is nothing to be too worried about as long as you are not becoming anemic. Do you know of anyone whom has taken it while pregnant? It is classified as a category C...which means they have not enough or no evidence on wether it is safe. We are planning on having one more child but are waiting until I see if this condition subsides within the next year. but its making me completely insane. My dermatologist says that hopefully it will "burn itself out". But we just don't know. If you are taking Dapsone, should you be on a gluten free diet? Or is that the case because of the DH and the effects it has on your intestinal track? I feel so terrible for those of you whom have no way to relieve the blisters and itching that is associated with DH. I have a very similar situation and I can relate...though my blisters burn and even feel hot to the touch. I cannot put my hands in warm water when the blisters are inflamed because of the pain it causes. It is almost as if I burned myself on the stove. Thank you so much for any and all information gained on this post!
  6. Hi, I'm a first time poster from the UK. I thought i'd sign up and discuss DH problems with you guys rather than my family who don't suffer from DH and i can't relate to them when i talk about this problem. I'm 31 years old and i was diganosed with DH when i was 17. I first had symtoms when i was 14 and it took the doctors 4 years to finally diagnose me with DH. That was a horrible 4 years of my life suffering almost every night with the blisters, itch, burn. I was put on dapsone which cleared my skin almost instanly and i've been on dapsone since. I've had a few attacks in the past while on the Dapsone. Especially eating alot of seafood and read that having a lot of iodine can trigger an attack? During the last few years my diet has been a bit relaxed, not worrying about gluten free and relying on the tablet. Recently i've been suffering from a bad attack (it's lasted the last 4 weeks which is the longest i've suffered since i was 17) I'm panicking a bit and wonder if its possible i've build a tolerance to dapsone? I've been to the doctor who has reffered me to a specialist. I'm now completely gluten free - strict! (for the last 4 weeks) and will do so for the rest of my life. I'm still suffering a little with my skin though which is getting me down. I'm wondering should i cut out iodine from my diet? During the last few weeks i've had a lot of eggs and potoatos and wondering if thats triggered an attack? I've now cut them out my diet as well as milk. I descovered there was wheat proetin in my shampoo so changed that and i've read that flouride in toothpaste can trigger an attack? In the future i'd love to come off Dapsone and be completely gluten free - medication free. Thanks for reading and would love to hear your replies.
  7. Infrequent poster but very frequent lurker. Diagnosed via skin biopsy in January 2009. DH is my only "obvious" symptom. So, having been gluten-free for nearly 4 years we were going to Europe in the fall of 2012. I'd decided I would indulge myself as it will likely be my last trip to Europe with retirement approaching and the need to really tighten the grip on the pennies. I did bring a supply of Dapsone just in case but I was really concerned with a total meltdown since I'd been clean for all that time. Would I get the full on stomach response? Brain fog? I didn't know and thankfully the answer was no. (Again, don't try this at home!) It was nice to drink a real beer and eat real baked goods even though I knew in my heart it was a fools errand. Anyway, I escaped without any gastro issues that I know of and immediately returned to total gluten-free. The expected rash DID arrive about three weeks later. I thought that was quite a bit of time but there it was. I went through the Dapsone I'd saved from my issues in 2009 and recently got a fresh supply as it is an ongoing thing. I find that if I use a full dose for a few days I can then go to a half dose with no issues. (Unfortunately I ran out of the old a week before I could get the new. I now remember just how awful DH can really be.) My question here is really about the Dapsone. I know for me it knocks the itch down in 24 hours and very soon after the rash begins to subside. What I don't know is whether it is doing any healing for the innards or just the skin? Does anyone have info on that? Thanks in advance.