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Celiac.com 04/09/2024 - Speculation about the source or cause of Napoleon's famous itch is fun, but much of the speculation seems to ignore the facts that point to the most likely answer. Napoleon's autopsy revealed gastric cancer and dermatitis herpetiformis, a condition associated with celiac disease. This is a historical fact. Despite this, speculation persists among historians and others, including dermatologists at the American Academy of Dermatology, regarding the potential causes of Napoleon's chronic itch. While some theories, such as scabies or arsenic exposure, lack substantial supporting evidence, they continue to be discussed. Zachary Leibovit-Reiben and colleagues at the University of Arizona College of Medicine recently presented research on Napoleon's itch, aiming to raise awareness of the nature of his chronic itchiness. Chronic itch, while often underestimated, is gaining recognition in dermatological research, with numerous presentations and discussions dedicated to it at the American Academy of Dermatology meeting. Leibovit-Reiben's team explored various potential causes, including scabies, arsenic exposure, atopic dermatitis, and psychogenic pruritus. However, given the autopsy findings of gastric cancer and dermatitis herpetiformis, which is linked to celiac disease, these realities should be considered the most plausible explanations. As to why they do not focus their speculation upon these two facts, anyone's guess is as good as mine. By reconciling historical speculation with medical evidence, this research aims to provide a clearer understanding of Napoleon's mysterious itch and its possible impact on his life. However, speculation, absent hard evidence, is unlikely to produce a fruitful avenue for revelation. Further investigation into Napoleon's medical history may shed light on this intriguing aspect of his health, and contribute to broader discussions on the intersection of historical narratives and medical science. However, students of history, especially those with a foothold in medicine and science, should probably begin with the actual historical and medical facts established by the official autopsy, as it is the one solid historical piece of evidence that is thus far, uncontested. Napoleon Suffered from Dermatitis Herpetiformis and Gastric Cancer If Napoleon did in fact suffer from dermatitis herpetiformis, and if he did in fact suffer from gastric cancer, then the results of the autopsy would seem to point in the direction of those two conditions, and, potentially to celiac disease. So why all the wild speculation that seems to ignore the official autopsy results? Any why is this fact-free speculation being driven by medical students, and/or doctors at a medical conference? Arguing for celiac disease is certainly speculative, and unlikely to come with smoking gun evidence. But it's a lot closer to being supported by actual observational evidence than speculation based on anecdotal evidence, however historically supported. If doctors and others are going to speculated on the potential cause of Napoleon's famous itching, shouldn't they confine themselves as close as possible to the known facts? Without that as a baseline, this type of speculation seems wholly ungrounded in science or medicine, and more akin to gossip or fantasy. As such, it is neither informative, nor likely to be produce any strong conclusions. Read more at Managedhealthcareexecutive.com
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Celiac.com - 12/11/2023 - Coeliac UK, a charity dedicated to supporting individuals with celiac disease, is urging hospitals to enhance their care for celiac patients, emphasizing the need for improved awareness and adherence to dietary restrictions. Their call comes in the wake of the tragic death of Hazel Pearson, a 79-year-old woman with celiac disease, who passed away after being mistakenly served Weetabix, a cereal containing gluten, despite explicit warnings from her family, and clear indications in her medical records. The inquest into Mrs. Pearson's death revealed that neglect played a role, leading Coeliac UK's head of advocacy, Tristan Humphreys, to assert that her demise was a "clear failure of care that should never have been allowed to happen." He expressed concern about systemic shortcomings in supporting those with celiac disease when they require medical attention, citing a Coeliac UK survey indicating that 70% of respondents believed that catering and medical staff lacked knowledge about gluten-free diets and the risk of cross-contamination. Additionally, over three-quarters of respondents reported having family or friends bring them gluten-free food while in the hospital. Humphreys stressed that while Wales has mandatory food standards outlining the necessary level of care, these standards were not met in Mrs. Pearson's case. Coeliac UK is actively providing advice and guidance to ensure the safe provision of gluten-free food. The Betsi Cadwaladr health board, responsible for the care lapses in Mrs. Pearson's case, is now under scrutiny and has committed to reviewing care practices for celiac patients. The inquest revealed inadequate systems in place at the hospital, with Mrs. Pearson experiencing similar dietary oversights at a different hospital months before her death. Mrs. Pearson fell seriously ill after consuming Weetabix at Wrexham Maelor Hospital and succumbed to aspiration pneumonia four days later. The inquest stressed that the hospital should have been aware of her dietary restrictions but lacked proper systems to ensure compliance. Assistant coroner Kate Robertson, presiding over the inquest, expressed her intent to issue a warning to the health board regarding the risk of future deaths. The health board, criticized for a delayed response to Mrs. Pearson's death, is now tasked with reviewing the findings and taking appropriate action to prevent similar incidents in the future. Read more at bbc.com
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Celiac.com 02/26/2007 - Celiac disease is an inherited autoimmune disorder. Even though celiac disease is genetic, and generally runs in families, it can sometimes be triggered by, or become active for the first time after, surgery, pregnancy, childbirth, viral infection, or severe emotional stress. People with untreated celiac disease typically have abnormally high levels of associated antibodies including anti-gliadin, anti-endomysium and anti-tissue transglutaminase. The presence of these antibodies is caused by an immune system reaction to the presence of gluten in the body. When people with celiac disease eat foods or use products containing gluten, the response from their immune system damages the tiny, fingerlike protrusions lining the small intestine, called villi. Properly working villi allow nutrients from food to be absorbed into the bloodstream. When villi are damaged, vital nutrients go unabsorbed. In addition to vitamin deficiencies and their associated maladies, left untreated, villi damage can result in full-blown malabsorption, accompanied by nerve damage, wasting, and organ distress and failure. Until fairly recently doctors believed celiac disease was quite rare, and only affected about 1 in 5,000 people. It was also thought of a disease that mostly affected babies and very young children. Recent studies, however, put the estimate of celiac sufferers at 1 in 133 people in the United States. Most people with celiac disease still dont know that they have it. More alarmingly, many experts believe that Non-Celiac gluten intolerance could be upwards of 15 times more prevalent than full-blown celiac disease. According to some experts up to 15% of people worldwide—a full 1 in 7—are gluten-sensitive or gluten-intolerant. These people often test negative or inconclusive for Celiac Disease, but can still suffer the same symptoms and long-term problems when they ingest gluten. Signs and Symptoms of Celiac Disease Its very important to diagnose both celiac disease and Non-Celiac gluten intolerance early before any serious damage to the intestine occurs. However, both can be difficult to diagnose because their symptoms are easily confused with other intestinal disorders, such as irritable bowel syndrome or lactose intolerance, thus many people may never discover that they have some level of gluten sensitivity. Some common general symptoms of celiac disease are diarrhea, abdominal pain and bloating, and weight loss. People with the disease may feel overly tired, and they may also be irritable or depressed. Some have skin rashes and mouth sores. Teens with undiagnosed celiac disease may go through puberty late. Symptoms of Celiac Disease can vary greatly from individual to individual, and even among family members. Symptoms may occur in the digestive system, or in other parts of the body. For example, one person might have diarrhea and abdominal pain, while another person may be irritable or depressed. In fact, irritability is one of the most common symptoms in children. Obviously, since so much growth and development crucial to human well being takes place in infancy and childhood, and since so much of that development hinges on proper nutritional absorption, any condition which hinders absorption is especially important diagnose and treat in the earliest possible stages. More specific symptoms of celiac disease may include one or more of the following: behavioral changes bone or joint pain chronic diarrhea delayed growth failure to thrive in infants fatigue gas infertility, recurrent miscarriage itchy skin rash called dermatitis herpetiformis missed menstrual periods (often because of excessive weight loss) muscle cramps osteoporosis, osteopenia pale, foul-smelling, or fatty stool pale sores inside the mouth, called aphthous recurring abdominal bloating and pain seizures tingling numbness in the legs (from nerve damage) tooth discoloration or loss of enamel unexplained anemia (a low count of red blood cells causing fatigue) weight loss / weight gain Screening for Celiac Disease A simple blood test can reveal high levels of anti-gliadin, anti-endomysium and anti-tissue transglutaminase antibodies, and is often used for initial detection among people who are most likely to have the disease, and who may need further testing. For anyone with a family history of celiac disease or of disorders such as thyroid disease, anemia of unknown cause, type I diabetes or other immune disorders or Downs syndrome, doctors may suggest routine screening. Otherwise, patients are generally screened on a case-by-case basis according to individual symptoms. If a blood test for gluten antibodies is positive, your doctor will likely order a biopsy to confirm a diagnosis of celiac disease. A biopsy is where your doctor microscopically examines a small sample of intestinal tissue, looking for celiac associated damage to the small intestine. To get the sample, your doctor inserts an endoscope (a thin, flexible tube) into your mouth, down your esophagus and into your stomach and small intestine to take a small sample of intestinal tissue to look for damage to the villi (the tiny, hair-like projections in the walls the small intestine that absorb vitamins, minerals and other nutrients). Non-Celiac Gluten Intolerance Many people with celiac disease are still screened using antiquated methods. After a positive serology test a patient might be given a biopsy (or not—depending on how high their antibody levels are—again elevated antibodies may mean gluten sensitivity), however, the pathologist who interprets the samples may not use the latest Marsh classification system to make the diagnosis, or they may use it but classify the samples incorrectly, any of which can lead to a missed diagnosis. Most people with gluten intolerance will never get tested at all, and if they do their results often end up in the "inconclusive" or grey area for the reasons discussed above. Consequently this undiagnosed or inconclusive group of people may miss out on discovering the simple and drug-free remedy of a gluten-free diet which will lead to a dramatic recovery for those with symptoms (many people with celiac disease or Non Celiac gluten sensitivity do not have any symptoms). For those who end up in the grey area of inconclusive test results, an elimination diet may be the only method to determine their problem. Many people discover that they have gluten intolerance only after they eliminate it from their diet. The more symptomatic the patient, the more obvious it will be when they eliminate gluten. For those with little or no symptoms this method may not work. Most elimination diets also exclude other common food allergens for several weeks such as soy, cows milk, corn, nuts, etc., and then the items are slowly added back to the diet while the patient pays close attention to any symptoms. Treatments for Celiac Disease There is presently no cure for celiac disease or Non Celiac gluten sensitivity, however, totally eliminating gluten from the diet leads to a full recovery in most cases, thus a 100% gluten-free diet is the standard treatment for celiac disease. To manage the disease and prevent complications, its essential to avoid all foods that contain gluten. People with celiac disease must avoid all foods made with wheat, rye, or barley. Including types of wheat like durum, farina, graham flour, and semolina. Also, bulgur, kamut, kasha, matzo meal, spelt and triticale. Examples of products that commonly contain these include breads, breading, batter, cereals, cooking and baking mixes, pasta, crackers, cookies, cakes, pies and gravies, among others. It is also important to avoid oats, at least during initial treatment stages of a gluten-free diet, this is because the effects of oats on celiac patients are not fully understood, and wheat contamination in processing is common. Thus, its safe to eliminate oats at least until symptoms subside and their reintroduction into the diet can be fairly monitored and evaluated. Avoid processed foods that may contain hidden gluten. Wheat flour is commonly used in many processed foods as a thickener or a binder. The good news is that by avoiding gluten your small intestine can and will begin to heal. Fortunately, the gut can and usually does heal. The majority of celiac disease and gluten intolerant patients who go on a gluten free diet experience a significant reversal of all symptoms and intestinal damage within year, and most begin to feel better within in a few days. In patients with severe damage the healing process may take years, and may require eliminating other offending foods from their diets in addition to gluten. Because the genetic makeup that leads to gluten intolerance cant be altered, a persons immune system will continue to react to gluten whenever it is ingested and the symptoms and problems will return if a person with celiac disease starts eating gluten again. health writer who lives in San Francisco and is a frequent author of articles for Celiac.com.
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Celiac.com 01/04/2017 - Ever since I was a young girl I have always had a bad stomach. Last year, when I was 16, I decided to move to London. Circumstances became difficult, and I ended up becoming physically and mentally ill, which included anorexia nervosa and then onset depression and trauma, as well as almost crippling anxiety. Things led to me getting so ill that I went to a doctor who noticed that I had serious mouth ulcers—and this is what finally led them to diagnose me with celiac disease, after what seemed to be months of suffering. At the time my diagnosis seemed to make a lot of sense because of the stomach pains I had, especially after eating certain foods. My symptoms included much confusion, dire pains, and resulted in my having a phobia of food. As most celiacs know, currently there is no medicine available to treat celiac disease, and the only treatment is a strict gluten-free diet. I got diagnosed in late January 2016, and have been on a strict gluten-free diet ever since, and although I believe this has helped me a lot, more than nine months later, I still often have the same symptoms. They vary in levels and are sometimes uncomfortable and very painful. Sometimes I have migraines, stomach bloating, churning, etc., all of which are not very nice. Let me explain a little about what celiac is. It is an autoimmune disease where the immune system kills off tissue in the small intestine in response to ingesting gluten. This can make eating more difficult, and a lot of the time I am left in pain with nothing to do but sit in agony and wait for it to stop. But what if there was something else out there that could help with ongoing symptoms? I recently discovered that thousands are being helped by using cannabis to treat their celiac disease symptoms. Marijuana is gluten-free and for some, can ease the painful symptoms. Special note: This approach is NOT meant as a substitution for a guten-free diet, but for some people, like myself, it can offer additional symptom relief for those who need it. Reset.me has this posted: "Marijuana 'cools the gut,' in which it slows down the muscle contractions that move food through the stomach and intestines and reduces the secretion of liquid into the intestines associated with diarrhea (one of the most severe symptoms of the disease)," Deno writes. "Marijuana also controls the muscle spasms associated with diarrhea. It also increases appetite and can offset the inefficiency in the Celiac's ability to absorb nutrients from the food you eat." "People with celiac in some states in America are able to get access to to medical marijuana if they have chronic pain. The rest of us [celiacs] are left with buying illegally or simply avoiding this one plant that may be the most effective celiac treatment of all!" HelloMD.com states: "Inflammation can be suppressed by activating the cannabinoid receptors, CB2, on immune cells. Though there have not yet been clinical human trials, this study opens up new avenues to investigate as possible treatment options for autoimmune diseases. Though this study only looked at THC, CBD is also known to help the immune system. CBD helps repair the bodies [sic] ability to recognize the difference between normal internal body functions and foreign entities, keeping the body from attacking itself." Remember, Marijuana is not a cure, but is a natural anti-convulsant and can suppress seizure activity. It is also anti-inflammatory, and has helped people with other autoimmune diseases such as rheumatoid arthritis, psoriasis, Type 1 diabetes, multiple sclerosis, and many others. I smoked cannabis even before I was diagnosed, and I always found that it settled my stomach. I have since spoken to many other people with celiac disease online and face to face, and I've done a fair amount of research to find out if there are other celiacs who experience the same relief from their symptoms. While doing my research, I came across an interesting post on Medhelp.org by Betherie Mommi about a girl with celiac who also suffers with IBS and has a history of chronic pain, nausea and, just like me, eating disorders. With such a weak stomach it's always hard to eat things without discomfort. She goes on to say that she uses medical marijuana becuase the meds that the doctors gave her have not helped with the pain and side effects of the medications, and the marijuana has also helped her appetite. She goes on to give one of the best descriptions of stomach pains, which I also get, but had difficulty explaining: "like velcro made out of razor blades being pulled apart in certain parts of your belly." She goes on to say that it also gave a sense of community back to her life, as you do sometimes feel excluded as a celiac, because there's a lot you have to miss out on. Betherie Mommi was a medical marijuana patient. I really notice the effects it has on me, and how it relieves my stomach pains, including providing relief from the confusion and anxiety that I've experienced. I feel that other people shouldn't have to go through what I've had to experience, and I really do believe that this is an exceptional way forward for some people. You can find CBD only "vapes", liquids, and waxes, which are also supposed to help, but in my case the THC, even if it is a low dosage, was essential to get rid of the pain. What I have described in this article is only what has helped me, after much suffering, and I urge all celiacs to do their own research and speak to their doctors before making a decision. I really believe that this approach could be helpful to so many others, but I also realize that it may not be for everyone. Sources: Can Cannabis Help Autoimmune Disease Sufferers?
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Celiac.com 11/03/2020 - After four years of coordination, compilation, rigorous assessment and writing, the Global Down Syndrome Foundation (GLOBAL) has issued its medical care guidelines for adults with Down syndrome, aka the Global Guideline. The Global Guideline was peer reviewed, edited, and published in the October 2020 issue of the Journal of the American Medical Association (JAMA). The Global Guideline is the first of its kind, and is available in full at no cost. Global Guideline contributors include the clinical directors of eight of the country's eight top adult Down syndrome research and treatment centers: Advocate Health Care in Chicago; University of Pittsburgh Medical Center; Kennedy Krieger Institute at Johns Hopkins School of Medicine; University of Kansas Medical Center; University of Arkansas for Medical Sciences; and Denver Health in conjunction with the Anschutz Medical Campus School of Medicine at University of Colorado. The Global Guideline is aimed at clinicians and focuses on nine areas of care: Atlantoaxial Instability, Behavioral Health, Cardiovascular Disease, Celiac Disease, Dementia, Diabetes, Obesity, Osteoporosis, and Thyroid. It is made up of 14 recommendations and 4 statements of good practice. Some of the recommendations align with existing guidelines for individuals without Down syndrome, and two are markedly different. There were several questions associated with the recommendations that had no published research evidence, and therefore were answered based on the clinical expertise of the authors. Successful completion of the project, and publication in JAMA, means that Global can now "focus on collaborating with other Down syndrome and disability organizations as well as medical institutions to ensure clinicians are following our Global Guideline and measuring outcomes," says Global President & CEO Michelle Sie Whitten. "From the beginning, GLOBAL has been leading the way, empowering people with Down syndrome with improved care and health outcomes," says mom Darlene Beals. "The Global Guideline is an important new resource for my 24-year-old son Alan, and I believe if anyone can get to the bottom of health disparities for African Americans with Down syndrome, it's GLOBAL." GLOBAL is supported by over 50 local, national, and international Down syndrome organizations and several generous sponsors. By the end of 2021, GLOBAL plans to translate the guidelines into several languages, and distribute it widely. GLOBAL plans to update and expand the Global Guideline every 6 years. Global Guideline for Down syndrome may be printed and downloaded for personal and clinical use free of charge. Celiac disease is associated with Down syndrome. Celiac disease is common in children with Down syndrome, and celiac screening is important for people with Down syndrome. Read more at in JAMA The Global Down Syndrome Foundation Medical Care Guidelines for Adults with Down Syndrome Workgroup includes: Peter Bulova, MD: Associate Professor of Medicine, University of Pittsburgh Medical Center, Pittsburgh, Pennsylvania; George Capone, MD: Director, Down Syndrome Clinic & Research Center, Kennedy Krieger Institute, Associate Professor of Pediatrics, Johns Hopkins School of Medicine, Baltimore, Maryland; Brian Chicoine, MD: Medical Director, Advocate Medical Group Adult Down Syndrome Center, Park Ridge, Illinois; Terry Odell Harville, MD, PhD, D(ABMLI) D(ABHI): Professor of Pathology and Laboratory Services, and Internal Medicine, Department of Pathology and Laboratory Services, and Department of Internal Medicine, Division of Hematology, University of Arkansas for Medical Sciences, Little Rock, Arkansas; Barry A Martin, MD: Associate Professor of Clinical Practice, Division of General Internal Medicine, University of Colorado School of Medicine, Anschutz Medical Center, Aurora, Colorado; Dennis McGuire, LCSW, PhD: Private Practice, Evanston, Illinois; Kent D. McKelvey, MD: Associate Professor, Rockefeller Chair in Clinical Genetics, University of Arkansas for Medical Sciences, Little Rock, Arkansas; Moya Peterson, PhD, APRN, FNP-BC: Clinical Professor, University of Kansas Medical Center, Schools of Nursing and Medicine, Kansas City, Kansas; Amy Y Tsou, MD, MSc: Evidence-based Practice Center, ECRI Center for Clinical Excellence and Guidelines, Plymouth Meeting, Pennsylvania; Staff Neurologist, Division of Neurology, Michael J Crescenz Veterans Affairs Medical Center, Philadelphia, Pennsylvania; Carl Tyler, MD, MSc: Director of Developmental Disabilities - Practice-Based Research Network, and Professor, Family Medicine and Community Health, Cleveland Clinic Lerner College of Medicine, Case Western Reserve University School of Medicine, Cleveland, Ohio; Michelle Sie Whitten, MA: President & CEO, Global Down Syndrome Foundation, Denver, Colorado; Bryn Gelaro, MA, LSW: Director of Adult Initiatives, Global Down Syndrome Foundation, Denver, Colorado; and Michael Wells, BS: Formerly Research Coordinator, Developmental Disabilities - Practice-Based Research Network, Cleveland, Ohio.
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Medical Superstitions of the Twenty-First Century
Dr. Ron Hoggan, Ed.D. posted an article in Autumn 2008 Issue
Celiac.com 01/14/2009 - Gluten sensitivity and celiac disease have long been seen as a gut disease. Unfortunately, this has resulted in a variety of erroneous medical perceptions, leading to limited and distorted perspectives on the impact of gluten on human health. After a battle of more than 50 years, celiac disease is now widely recognized both in and out of the medical profession, as common and treatable only with a gluten-free diet. (This is largely thanks to the proactive efforts of a few researchers and many support group members over the last two or three decades.) Recognition of the importance of a gluten-free diet in dermatitis herpetiformis has still not reached the same level. Some dermatologists continue to prescribe Dapsone, often deriding or even failing to apprise their patients of the gluten-free diet as an alternative therapy. This is especially important for reducing the risks of certain cancers, yet many stubbornly refuse to even suggest this therapeutic alternative. Neurologists, psychiatrists, and psychologists, despite compelling evidence of the nefarious impact of gluten in a wide range of neurological and psychiatric diseases, typically continue to ignore these data in favor of pharmacological interventions. (Unlike pharmaceutical manufacturers, gluten-free food suppliers do not wine and dine physicians.) These chemical treatments involve a cacophony of attendant side effects and lengthy periods of experimentation to find the “correct” dosage that ultimately fails to fully relieve the patients’ symptoms or arrest the progression of the disease, while usually reducing patients to a more manageable, though limited state of consciousness. From epilepsy to cerebellar ataxia, to peripheral neuropathy, to schizophrenia, to bi-polar disorder, to attention deficit disorders, to learning disabilities, to depressive illness, the treatment of choice is pharmacological rather than dietary. Similarly, we have large, vocal, and politically active groups that loudly decry the consumption of a variety of foods, from meat, to fish, to various plant families, with little or no evidence to support such interdictions. Others tout one or more food additives or consumption practices as great and wonderful substances/practices that will cure all ailments and guarantee a long and productive life. These strange recommendations range from consumption of watermelon seed extract, to acai berries, a variety of fasting procedures prescribing one or two foods during the “fasting” period, food combining, juicing, egg white omelets, wheat grass, low fat diets and even colon cleanses that involve putting coffee up your rectum. Again, there is little solid evidence to support these practices yet they appear to develop quite a following. I’m not suggesting that most mainstream medical professionals support these cleansing and dietary fads. However, much of the medical profession’s resistance to their own professional literature in which solid evidence indicts gluten as a cause of disease, while embracing questionable pharmaceutical solutions, is closely akin to the superstitious practices and outrageous claims that litter the Internet and the popular media. The evidence is clear and compelling. Neurological, psychiatric, and autoimmune diseases are often mitigated by gluten restriction. Yet we continue to hear about pharmacological interventions that offer less relief and little long-term hope of remission. The widely published pediatric allergist and gastroenterologist, Rodney Ford, has argued a compelling case for his theory that gluten induced neurological damage is where the gluten syndrome and celiac disease begin, in his recent book titled “Full of It”. It is a theory that makes sense of otherwise puzzling individual variations in the course of gluten-induced disease. It also explains the high frequency of gluten antibodies found by M. Hadjivassiliou and his group, in patients with neurological diseases of unknown origin (57%) while only a quarter of that percentage had celiac disease. Dohan and Grassberger, followed by Singh and Kay, clearly established a therapeutic role for a gluten-free, dairy-free diet in schizophrenia. Subsequent publication of several deeply flawed, poorly designed, and sloppily conducted studies have allowed for the common rationalization required for ignoring the solid, earlier findings mentioned above. This denial continues despite the recent publication, by Anthony De Santis and his group, of SPECT findings in a schizophrenic patient whose blood flow patterns in the brain, and behavior returned to “normal” following institution of a gluten-free diet. Similar work with autistic subjects, conducted by Kalle Reichelt, Paul Shattock, and a host of others, has shown that gluten-free, dairy-free diets offer real promise for symptom reduction in this very challenging sub-population. Similarly, some amazing reversals of learning disabilities, through gluten-free diets, have been reported at Nunnykirk School in the United Kingdom. Further, about two thirds of untreated celiac children show signs and symptoms of attention deficit disorders. These children have long been reported to normalize within one year of beginning a gluten free diet (see: http://members.shaw.ca/oldsite/My_Master%27s_thesis.htm). Despite all of this contrary evidence, most allopathic practitioners continue to insist that gluten is a healthful food and they continue to recommend its daily consumption. They may be willing to concede gluten’s role in celiac disease and even in dermatitis herpetiformis, but they continue to ignore all of the other reported findings in association with the broad spectrum of diseases in which gluten sensitivity or celiac disease is grossly overrepresented. They continue to ignore or deny the potential value of a gluten free diet in the face of compelling evidence. Most of these same medical practitioners and investigators would be deeply offended by my suggestion that they are little different from those advocating coffee enemas or juicing. Yet their beliefs are not based on the evidence presented in their professional literature. In my dictionary, acting on irrational beliefs is called ‘superstition’. It is the superstitious resistance to solid evidence that is most frustrating when dealing with ignorance – whether the impetus is to push coffee enemas into your rectum or ingest yet another chemical compound from a prosperous pharmaceutical manufacturer despite evidence that a gluten-free diet might produce results that are more desirable to the patient.- 3 comments
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Celiac.com 07/24/2017 - Are many non-celiac gluten-free eaters actually treating undiagnosed medical conditions? Is the gluten-free movement less a fad than we imagine? Currently, about 3 million Americans follow a gluten-free diet, even though they do not have celiac disease. Known colloquially as "PWAGs," people without celiac disease avoiding gluten. These folks are often painted as fad dieters, or hypochondriacs, or both. Call them what you will, their ranks are growing. According to a study in the journal Mayo Clinic Proceedings, the number of PWAGs tripled from 2009 to 2014, while the number of celiac cases stayed flat. A new study from the Mayo Clinic supports these conclusions. The study derived from data gathered in the National Health and Nutrition Examination Survey, as well as serological tests. There is also a growing body of data that support the existence of non-celiac gluten sensitivities, though the evidence is not conclusive. Moreover, researchers really don't have any idea how many non-celiacs on a gluten-free diet may have legitimate reactions to gluten. The phenomenon has emerged in the past five years in medical literature. For a long time, researchers just assumed that only people with celiac disease would eat a gluten-free diet. About a decade ago, when research into celiac disease and gluten-free dieting began in earnest, says Joseph Murray, a celiac researcher at the Mayo Clinic and an author of the new research, researchers "didn't think to ask why people avoid gluten. When we designed this study 10 years ago, no one avoided gluten without a celiac diagnosis." The latest research by Murray and his colleagues showed that the total number of celiac cases leveled off in the last few years, while more non-celiacs began to avoid gluten for different reasons. Researchers still aren't sure what's driving the trend, and whether it will continue. Part of the increase is doubtless to growing awareness of gluten sensitivity. However, Benjamin Lebwohl, the director of clinical research at Columbia University's Celiac Disease Center, estimates that more than half of the 3.1 million PWAGs noted in this latest study have legitimate gluten sensitivity. "An increasing number of people say that gluten makes them sick, and we don't have a good sense why that is yet," Lebwohl said. "There is a large placebo effect — but this is over and above that." Non-celiac patients with gluten sensitivity often complain of symptoms similar to those of celiacs, such as intestinal problems, fatigue, stomachaches and mental fogginess. And while researchers don't know the reason, clinical studies have shown that these symptoms are often relieved by eliminating dietary gluten. One theory that is gaining some credence is that these people may be sensitive to other irritants, such as FODMAPS, a class of carbohydrates shown to cause gastrointestinal symptoms found in wheat, milk, onions and cheese. Look for more studies into this topic, as researchers seek to nail down answers about celiac disease and gluten-sensitivity, and similar symptoms in non-celiacs. Meantime, the number of people who suspect they have non-celiac gluten sensitivity, and who seek improvement in their symptoms by eliminating gluten from their diets, continues to grow. Source: DailyTribune.com
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Celiac.com 02/04/2016 - BL-7010, a non-absorbable, orally available co-polymer for the treatment of celiac disease, has received designation as Class IIb medical device in the European Union, according to manufacturer BioLineRx Ltd. This designation clears path for BioLine’s BL-7010 program, and allows the company to plan the next steps in the development of a commercial version of BL-7010. BL-7010 shows a high affinity for gliadins, the proteins in gluten that trigger celiac disease. BL-710 works by sequestering gliadins, effectively masking them from enzymatic breakdown, and blocks the formation of immunogenic peptides that trigger the adverse immune reactions in people with celiac disease. This results in a significantly reduced immune response triggered by gluten. Together with the gluten, BL-7010 passes harmlessly through the digestive tract and is not absorbed into the blood. The safety and efficacy of BL-7010 have been demonstrated in a number of pre-clinical studies, including a Phase 1/2 study completed in November 2014. In prepared comments, BioLineRX CEO Kinneret Savitsky, Ph.D., said that the company is "excited to receive confirmation for the medical device designation pathway in Europe for our BL-7010 program," and is now planning the next steps in the development of this product, including the next clinical efficacy study which we expect to commence in mid-2016." The company also continues to "evaluate the potential of BL-7010 as a food supplement," said Dr. Savitsky. Read more at: PRNewswire.
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Celiac.com 03/02/2015 - Officials at UCLA Ronald Reagan Medical Center have warned 179 people that a fairly routine endoscopy procedure may have left them exposed to a drug-resistant 'super-bug' that infected seven patients, and may have contributed to two deaths. The possible exposures occurred at the UCLA Ronald Reagan Medical Center, between October and January, in patients who underwent a procedure in which a specialized endoscope is inserted down the throat to diagnose and treat pancreatic and bile duct diseases. Officials said in an official statement that hospital staff had been sterilizing the scopes according to the manufacturer's standards, but was now using "a decontamination process that goes above and beyond manufacturer and national standards." Meanwhile, hospitals across the United States have reported exposures from the same type of medical equipment in recent years, and the U.S. Food and Drug Administration (FDA) has said it was working with other government agencies and manufacturers of the scopes to minimize risks to patients. The FDA says recent medical publications and adverse event reports associated multidrug-resistant bacterial infections in patients who have undergone ERCP with reprocessed duodenoscopes, "even when manufacturer reprocessing instructions are followed correctly." The multidrug-resistant bacterial infections include carbapenem-resistant Enterobacteriaceae (CRE) such as Klebsiella species and Escherichia coli. The FDA says that from January 2013 through December 2014, they received 75 medical device reports involving about 135 patients related to possible microbial transmission from reprocessed duodenoscopes. "It is possible that not all cases have been reported to the FDA," the agency says. Given the fact that celiac disease diagnosis and follow up care require the use of endoscopy, this news is particularly disturbing to those in the celiac community. Source: Medscape.com.
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The following guidelines were received from the Oct. 1993 CSA/USA National Conference in Buffalo, NY: 1) You can claim only the EXTRA COST of the gluten-free product over what you would pay for the similar item at a grocery store. For example, if wheat flour costs $0.89 per 5 lbs. and rice flour is $3.25 per 5 lbs., the DIFFERENCE of $2.36 is tax deductible. You may also claim mileage expense for the extra trip to the health food store and postal costs on gluten-free products ordered by mail. 2) The cost of xanthan gum (methylcellulose, etc.) used in gluten-free home baked goods is completely different than anything used in an ordinary recipe, so in the opinion of the IRS, the total cost of this item can be claimed. 3) Save all cash register tapes, receipts, and canceled checks to substantiate your gluten-free purchases. You will need to prepare a list of grocery store prices to arrive at the differences in costs. You need not submit it with your return, but do retain it. 4) Attach a letter from your doctor to your tax return. This letter should state that you have Celiac Sprue disease and must adhere to a total gluten-free diet for life. 5) Under MEDICAL DEDUCTIONS list as Extra cost of a gluten-free diet the total amount of your extra expenses. You do not need to itemize these expenses. Suggestions: 1) You may want to write the Citations (as given below) on your tax return. Always keep a copy of your doctors letter for your own records. 2) Your IRS office may refer you to Publication 17 and tell you these deductions are not permissible. IRS representatives have ruled otherwise and this is applicable throughout the US Refer them to the following Citations: Revenue Ruling 55-261 Cohen 38 TC 387 Revenue Ruling 76-80, 67 TC 481 Flemming TC MEMO 1980 583 Van Kalb TC MEMO 1978 366
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Celiac.com 01/05/2015 - Doctors recommend medical follow-up of celiac disease patients for gluten-free diet (GFD) adherence monitoring and complication detection. But, what happens to celiac kids who don’t get good medical follow-up? A team of researchers recently tried to figure out how the LTFU kids fared health-wise compared to kids who did receive follow-up, and what barriers the LTFU kids might face in successfully following a gluten-free diet. The research team included L. Barnea, Y. Mozer-Glassberg, I. Hojsak, C. Hartman, and R. Shamir. They are variously affiliated with the Institute of Gastroenterology, Nutrition and Liver Diseases, Schneider Children's Medical Center of Israel, Petach Tikva and the Sackler Faculty of Medicine at Tel-Aviv University in Tel Aviv, Israel. They had previously shown that 35% of children with celiac disease were lost to follow-up (LTFU), that is, they did not receive follow-up care for their celiac disease. The study team used a telephone questionnaire to assess 50 LTFU patients regarding frequency of follow-up, serology testing, and adherence to GFD measured by validated Biagi score. They had fifty two regular follow-up patients serve as a control group. The results showed that the LTFU patients had poor adherence to GFD, with an average Biagi score of 2.0 ± 1.4, compared to control scores of 3.0 ± 1.0 (p < 0.001). Only 22% of LTFU performed periodic celiac serology testing compared to 82% of the control group (p < 0.001). Fifty percent of the LTFU kids had higher prevalence of positive celiac serology tests, compared to 25% of controls, (p = 0.01). Just 24% of LTFU kids were National Celiac Association members, compared with 44% of control kids (p = 0.05). Regression analysis showed positive relationships between LTFU and poor adherence to GFD (R2 = 0.26737, p = 0.001), older age at diagnosis (R2 = 0.30046, p = 0.03), and non-membership in a celiac association (R2 = 0.18591, p = 0.0001). So, when the dust settled, the study showed that children LTFU were more likely to not follow a strictly gluten-free diet, and to have positive blood tests for anti-gluten antibodies. Accordingly, the team recommends that risk factors for LFTU be identified and addressed in order to improve patient care. Source: Digestion. 2014 Dec 19;90(4):248-253
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Celiac.com 08/10/2014 - Gluten comes from the Latin word for glue. It is a protein in wheat and other grains. It will elicit an autoimmune response in celiacs. Other grains like barley, rye and spelt contain gluten as well. In wheat products, the difficult part for celiacs to digest is gliadin. Some fad diets may try to claim glaidin is new, but it is not, and to dispel another myth there isn’t any wheat on the market that is genetically modified. Celiac diease isn't diagnosed as often as it should be. In turn, individuals suffer with it for years, not knowing what to do or how to feel better. Celiac disease is often misdiagnosed for different ailments that have similar symptoms. It can seem to be mysterious, since often it takes time to find out what issue is causing the entire ruckus. There are several symptoms that overlap between celiac and other autoimmune disorders, like Type 1 diabetes, IBS, Crohn's and Hashimoto Thyroiditis. Celiac disease and other autoimmune disorders are known to have neurological effects that sometimes result in ataxia, numbness and pain, so Lupus, rheumatoid arthritis or similar disorders often get confused for celiac.To make it more confusing some autoimmune disorders can be triggered by untreated celiac disease. Celiac is a genetic disease that is not contagious, but it does medically require a gluten-free diet. An individual with celiac must be careful to read labels on all products they consume. They must be aware of co-mingling of food ingredients in preparation of their meals and must be diligent to not ingest a crumb of gluten! There are individuals that don't have the genetic makeup for celiac disease, but yet seem to be unable to digest gluten. Those individuals are considered gluten sensitive. There unfortunately are no tests or strict criteria to diagnose gluten sensitivity, according to a recent Webinar from National Foundation for Celiac Awareness. The gluten sensitivity issue is not yet as clearly defined as celiac disease. Some individuals with gluten sensitivity do have a problem digesting gluten, but it often is just not as severe as the gluten autoimmune reaction that happens to those with celiac disease. If you feel you may need a gluten-free diet, do not start one until you see a doctor who will likely recommend that you get screened for celiac disease. A celiac diagnosis begins with a blood test. If the test is positive then your doctor may direct you to a specialist for more testing, and after diagnosis send you to visit a Registered Dietitian or advise you to start a gluten-free Diet. Again, please do not start a gluten-free diet before your doctor does a test for celiac, it may make your test results inaccurate.
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Celiac.com 01/09/2014 - Not much is known about costs associated with celiac disease. A team of Israeli researchers recently studied the costs in patients diagnosed with celiac disease. The research team included A.D. Heymann, M. Leshno, R. Endevelt, and R. Shamir of the Medical Division at Maccabi Healthcare Services in Tel Aviv, Israel. They conducted a retrospective case control study covering the period 2003-2006 in a large Israeli Health Maintenance Organization with over two million members. Their study group included 1,754 patients with celiac disease and a control group of 15,040 non-celiac patients. They calculated costs individually for each member, and aggregated costs according to main cost-branches. They conducted a linear step wise regression with costs as the dependent variable and age, gender and the presence of celiac disease as the independent variables. They then compared costs for patients with celiac disease with costs for patients suffering from other chronic diseases. The team found that the total costs of celiac disease patients were significantly higher than those for the control group for hospital admission, medications, laboratory and imaging. The overall hospital admission rate of celiac patients was 7.98% as opposed to 7.1% for the control group (p = 0.06). However, compared with other chronic illnesses, the costs of patients with celiac disease were similar to those of patients with diabetes and hypertension. This study does conclude that celiac disease patients do use more medical services than the general population, at rates likely higher than previously thought. Source: Health Econ Rev. 2013 Nov 7;3(1):23. doi: 10.1186/2191-1991-3-23.
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Celiac.com 09/07/2012 - Many people with celiac disease will tell you that getting a proper diagnosis is just part of the battle. Maintaining a strict gluten-free diet, and getting adequate medical follow-up care can be nearly as challenging as getting a proper diagnosis. A group of researchers, led by Joseph A. Murray, MD, AGAF, of Mayo Clinic, confirms that assessment in a new study. The study appears in Clinical Gastroenterology and Hepatology, and shows that follow-up care for patients with celiac disease is often poor and inconsistent. For their study, researchers collected data on 122 patients diagnosed with celiac disease between 1996 and 2006 in Olmsted County, MN. The patients were 70 percent women, and averaged 42 years of age. The researchers then calculated the rates at which patients were given follow-up exams from six months to five years after celiac disease diagnosis. Of the 113 patients the study followed for more than four years, only 35 percent received follow-up analyses that met AGA guidelines. The other patients did not receive medical follow-up that met "even the most lax interpretation of current guidelines,” said Dr. Murray. The researchers used the Kaplan-Meier method to estimate event rates at 1 and 5 years. They classified patients according to categories of follow-up procedures recommended by the American Gastroenterological Association (AGA). The study shows that even with widespread circulation of follow-up recommendations, plenty of patients are not getting proper follow-up for celiac disease. According to Dr. Murray, gastroenterologists with the expertise in celiac disease need to encourage active follow-up of celiac patients and improve their overall quality of medical care. Basically, says Dr. Murray, celiac disease "should not be different from other chronic conditions for which medical follow up is a given such as liver disease, inflammatory bowel disease or even gastroesophageal reflux disease." Anecdotally, many patients with celiac disease feel that they must manage celiac disease on their own,” Murray adds, pointing out that it is important for doctors and patients to understand the need for proper medical follow-up of celiac disease. The authors note that, since gastroenterologists are leading the way in the detection of celiac disease, and since it is a chronic condition, with possible long-term complications, improved communication between gastroenterologists and patients can help to ensure that patients get important follow-up care, and thus improve outcomes in celiac disease. What are your thoughts? Do you feel that you've gotten adequate follow-up care for your celiac disease? Share your comments below. Source: Clinical Gastroenterology and Hepatology
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Medical Tourism Expands to Stem Cell Treatments
Jefferson Adams posted an article in Additional Concerns
Celiac.com 07/05/2012 - As more people seek out affordable medical services in foreign countries, the variety of available medical services continues to grow. Stem cells are just the latest in the list of medical services being targeted at foreign visitors. A company called MediCAREtourism, a division of an Oman-based travel and hospitality company called Travel Point LLC, is introducing medical packages, including, stem cell treatments, to foreign travelers visiting destinations in Asia and the far east (Korea, Malaysia, and Singapore). Stem cell treatments are a type of intervention strategy that introduces new cells into damaged tissue in order to treat disease or injury. Many medical researchers believe that stem cell treatments have the potential to change the face of human disease with minimal risk of rejection and side effects. Medical researchers anticipate that adult and embryonic stem cells will soon be able to treat cancer, Type 1 diabetes mellitus, Parkinson's disease, Huntington's disease, Celiac Disease, cardiac failure, muscle damage and neurological disorders, liver cirrhosis and most importantly spinal injuries/paralytic cases from road accidents. Stem cell treatment is one of the fastest growing medical medical services in the world today, and provides many people with tremendous benefits, says Mr. Aslam Sayed Mohamed, Manager for MediCAREtourism, said. Travel Point is teaming up with Ming Medical Services of Malaysia to offer the stem cell packages, along with free medical consultation and general health checkups for all of their passengers traveling to Thailand & Malaysia. The health checkups will be held at accredited hospitals like Paulo Memorial Hospital in Bangkok (Thailand), Prince Court Medical Centre in Kuala Lumpur (Malaysia) and Sime Darby Medical Centre Ara Damansara in Selangor (Malaysia). This means that, in addition to free medical consultation, and general health checks, Travel Point customers traveling in Asia and the Far East can choose very affordable stem cell therapy packages to Malaysia and Thailand. Commenting on the importance of these treatment options, Dr. Sean NG, Managing Director, Ming Medical Services says stem cell treatments can give "100% cure to ailments like Vitiligo, Aging, Diabetes, Diabetic Ulcers, Autism, Cosmetic Abnormalities and end stage heart diseases." In a related story for the HuffingtonPost, Anthonia Akitunde notes that what was once regarded as an option only for the rich, medical tourism is becoming more and more popular among regular people. She cites estimates by Patients Beyond Borders, which produces guidebooks on medical travel, that in 2012, 600,000 people traveled abroad for treatment -- a number anticipated to grow 15 to 20 percent annually as boomers age. Source: http://www.ameinfo.com/travel-offers-health-check-east-introduces-301973 -
Celiac.com 03/16/2012 - It's official! After an international conference to address gluten-sensitivity, fifteen experts from seven countries have announced the development of a nomenclature and classification system making gluten-sensitivity a distinct and separate condition from celiac disease. Their work on establishing universal medical terms for gluten-sensitivity may serve as a guide to improve the diagnosis and treatment of gluten-related disorders. The experts have published their conclusions and recommendations in "Spectrum of Gluten-Related Disorders: Consensus on New Nomenclature and Classification," which includes a diagnostic roadmap for clinicians. The new consensus appears in the journal BMC Medicine. The conference was co-chaired by Alessio Fasano, M.D., professor of pediatrics, medicine and physiology and director of the University of Maryland Center for Celiac Research (CFCR) at the University of Maryland School of Medicine, along with Carlo Catassi, M.D., M.P.H., co-director of CFCR and professor of pediatrics at the Universita Politecnica delle Marche in Ancona, Italy, and Anna Sapone, M.D., Ph.D., of the Seconda Universita of Naples. Gluten sensitivity, a condition causing gastrointestinal distress and other clinical symptoms, has been identified by the international panel of experts as a distinct entity on the spectrum of gluten-related disorders that includes wheat allergy and celiac disease. “For the first time," says Dr. Catassi, "we have provided an accurate diagnostic procedure for gluten sensitivity. We have confirmed that to correctly diagnose gluten sensitivity, we need to exclude celiac disease and wheat allergy with the appropriate diagnostic tests.” Whereas about 1 in a hundred or so people has celiac disease, Dr. Fassano estimates about "60 to 70 percent" of the people coming to his clinic for treatment actually suffer from gluten sensitivity. Overall, an estimated six percent of people of European descent may be affected by gluten sensitivity, which would make it of the most common pathologies in the world today.
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Higher Medical Costs for People with Celiac Disease
Jefferson Adams posted an article in Additional Concerns
Celiac.com 08/08/2011 - In the face of steadily rising numbers of people with celiac disease, very little information exists on the economic costs and impacts associated with celiac disease. A team of researchers recently set out to assess the impact of celiac disease diagnosis on health care costs and the incremental costs associated with celiac disease. The research team included K. H. Long, A. Rubio-Tapia, A. E. Wagie, L. J. Melton III, B. D. Lahr, C. T. Van Dyke, and J. A. Murray. They are affiliated variously with the Division of Health Care Policy & Research, the Division of Gastroenterology and Hepatology, the Division of Epidemiology, and the Division of Biomedical Statistics and Informatics at the College of Medicine of the Mayo Clinic in Rochester, Minnesota. To carry out their population-based cohort, the team used administrative data on celiac disease cases and matched controls from Olmsted County, Minnesota. They compared: 1) direct medical costs one year before and one year after celiac disease diagnosis for 133 index cases and for control subjects; and 2) cumulative direct medical costs over four years for 153 index celiac cases and for control subjects. Their analyses did not include diagnostic-related and outpatient pharmaceutical costs. They found that a diagnosis of celiac disease lowers the average total costs by $1,764 in the year following diagnosis (pre-diagnosis cost of $5,023 vs. $3,259; 95% CI of difference: $688 to $2,993). They found also that, over a 4-year period, people with celiac disease faced an average of $1,457 in higher outpatient costs (P = 0.016), and an average of $3,964 in higher total costs of $3,964; (P = 0.053), compared with the control group. Men with celiac disease bore the brunt of those higher costs, with excess average total costs of just over $14,000 compared to costs of $4,000 for male controls; 95% CI of difference: $2,334 to $20,309). Costs associated with celiac disease pose a significant economic burden, especially for men with the disease. Early detection, diagnosis and treatment of celiac disease lowers medical costs, and will likely benefit patients and health care providers alike. Source: Alimentary Pharmacology & Therapeutics, Volume 32, Issue 2, pages 261–269, July 2010- 1 comment
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The following report comes to us from The Sprue-Nik Press, which is published by the Tri-County Celiac Sprue Support Group, a chapter of CSA/USA, Inc. serving southeastern Michigan (Volume 7, Number 6, September 1998). The degree of mucosal damage varies from one celiac patient to another. Also, the amount of the small intestine that is affected also varies, with the damage usually progressing from the beginning of the small intestine and then moving downward toward the end of the small intestine. This may explain the variable symptoms in different patients. For example, when a significant portion of the small intestine is involved, diarrhea, malabsorption, and weight loss result. When damage is isolated to only the top portion of the small intestine, the only affect may be iron deficiency. (Incidentally, when iron deficiency is not corrected by iron supplements, it is highly likely that celiac disease is the cause of the deficiency.) Gluten in a celiacs diet causes the immune system to produce gliadin antibodies in the intestine. Some of these leak into the bloodstream where they can be detected in blood tests. These blood tests are useful for screening for celiac disease, though a small intestinal biopsy remains the gold standard for diagnosing celiac disease (celiac disease). There are few diseases for which diet and nutritional issues are more important than for celiac disease. At this time, the only known treatment of celiac disease is the removal of wheat, barley, rye, and oats from the celiacs diet. On the surface this sounds simple, but complete removal of dietary gluten can be very difficult. Gluten-containing grains are ubiquitous in the Western diet. Also, grain-derived food additives such as partially hydrolyzed vegetable protein [and modified food starch] are widely used in processed foods and oral medications. Content labels are often vague or incomplete regarding these additives. What further complicates matters is a lack of significant experience on the part of physicians and dietitians in the dietary treatment of celiac disease. This is mainly because there are so few celiac patients for anyone practitioner. Therefore the best sources of dietary information for a new patient are other knowledgeable, more experienced celiacs. It is very important that the diet be followed with full and strict compliance. Celiacs, especially if theyve had active celiac disease for a longtime, are at higher than normal risk for GI malignancies.(Fortunately, compliance to a good gluten-free diet returns the risk of malignancy and life expectancy to that of the general population.)Another complication of long-term untreated celiac disease is bone loss, which maybe irreversible in older patients. When a large portion of the small intestine is affected by active celiac disease, the result can be a generalized malabsorption problem, resulting in deficiencies of water- and fat-soluble vitamins and minerals. Folic acid deficiency is particularly common in celiac disease because, like iron, it is absorbed in the upper small intestine [where the highest concentration of celiac-related damage generally occurs]. Folic acid is necessary for DNA replication, which occurs in cell turnover. So a deficiency of folic acid can impair the regenerative ability of the small intestine. Vitamin B12, also essential to DNA synthesis, is not malabsorbed as commonly as folic acid. Magnesium and calcium deficiency are also common in active celiac disease, because of decreased intestinal absorption AND because these minerals tend to bind with malabsorbed fat which passes through the system. It is particularly important for doctors to assess the magnesium status of celiacs, because without correction of a magnesium deficiency, low levels of calcium and potassium in the blood cannot usually be corrected with supplements. In severe cases, magnesium supplementation should be done intravenously because of the tendency of oral magnesium to cause diarrhea. Supplemental calcium generally should be provided to celiacs, possibly with vitamin D, to help restore tissue and bone calcium levels to normal. The exact dose of calcium is not known. Dr. Fine usually recommends 1500-2000 mg of elemental calcium per day, divided into two doses, for several years and sometimes indefinitely. [4], [5], [6] Zinc is another mineral that often becomes depleted in patients with chronic malabsorption. Zinc supplementation (usually the RDA via multi-vitamin and mineral supplements) helps avoid skin rashes and restores normal taste. Up to 20% of celiacs will continue to experience loose or watery stools even after going on a gluten-free diet. Sometimes this is due to inadvertent gluten in the diet, but a recent study at Dr. Fines medical center showed that in these cases other diseases epidemiologically associated with celiac disease are present.[7] These include microscopic colitis, exocrine pancreatic insufficiency, lactose intolerance, selective IgA deficiency, hypo- or hyperthyroidism, and Type I diabetes mellitus. When diarrhea continues after beginning a gluten-free diet, a search for these associated diseases or others should be undertaken and treated if found. The use of cortico steroids has been advocated in celiacs when the response to the gluten-free diet is sluggish or absent. This is necessary more often in older than in younger patients. However, pancreatic enzyme supplements (prescribed by a doctor) may be needed to help digestion and resolve ongoing malabsorption in some patients. The endomysial antibody blood test is highly accurate and specific for detecting celiac disease. However, the current method of detecting these antibodies involves an operator looking through a microscope and observing the antibody binding on monkey esophagus or human umbilical cord tissue substrates. The correct interpretation of results is highly dependent on the skill and experience of the technician interpreting the fluorescence pattern through the microscope. Moreover, determination of the amount of antibody present relies upon repeat examinations following dilutions of the blood serum, with the last positive test being reported as a titer. A new discovery was reported by a research group in Germany.[8] The antigen substrate of the endomysial antibodies has been identified. This allows the development of a new test that can detect and measure serum endomysial antibodies in one, chemically-based test run [thus greatly reducing the potential for human error and significantly reducing the time needed for each test--ed.] These new tests should be available for clinical use shortly. In a recent study, Dr. Fine found that the frequency of positive stool blood tests was greater in patients with total villous atrophy relative to partial villous atrophy, and all tests were negative in treated patients without villous atrophy.[9] This suggests that fecal occult blood may be a non-invasive and inexpensive method of following the response of the damaged intestine to treatment. Also, it should be noted that the high frequency of positive tests due to villous atrophy will decrease the accuracy of the tests when used for cancer screening in this same patient population (which is how these tests are normally used by health care providers). There have been two recent reports touting the lack of deleterious effects when 50 grams of oats per day are added to the diet of celiac patients. Although this finding is exciting for celiacs, both studies possess certain limitations. In the first study, published by a Finnish group, the exclusion criteria for symptoms and histopathology were somewhat strict, so that patients with more mild forms of celiac disease seemingly were selected for study. And though no damage to duodenal histology occurred after one year of oats consumption, no physiologic or immunologic parameters of disease activity were measured. Furthermore, several patients in the treatment group dropped out of the study for reasons not mentioned in the article.[10] The second and more recent study involved only 10 patients, studied for twelve weeks. The favorable results of this study must be interpreted with caution because of the small sample size and short study period.[11] Even the one-year treatment period in the Finnish study may be too short to observe a harmful effect, as it is known that small intestinal damage sometimes will not occur for several years following there introduction of gluten to a treated celiac. At the worst, an increase in the incidence of malignancy may result from chronic ingestion of oats, an effect that could take decades to manifest. Therefore, this issue will require further study before oats can be recommended for the celiac diet. 3. From the September 1998 newsletter of the Houston Celiac-Sprue Support Group, a chapter of CSA/USA, Inc. 4. Ciacci C, Maurelli L, et el, Effects of dietary treatment on bone mineral density in adults with celiac disease; factors predicting response, Am J Gastroenterol, 1997; 92 (6): 992-996. 5. Mautalen C, Gonzalez D, et al, Effect of treatment on bone mass, mineral metabolism, and body composition in untreated celiac patients, Am J Gastroenterol, 1997; 2 (2):313-318. 6. Corazza gluten-free, Di Sario A, et al, Influence of pattern of clinical presentation and of gluten-free diet on bone mass and metabolism in adult coeliac disease, Bone, 1996; 18 (6):525-530. 7. Fine, KD, Meyer RL, Lee EL, The prevalence and causes of chronic diarrhea in patients with celiac sprue treated with a gluten-free diet, Gastroenterol, 1997; 112 (6):1830-1838. 8. Dieterich W, Ehnis T, et al, Identification of tissue transglutaminase as the autoantigen of celiac disease, Nat Med, 1997; 3 (7):797-801. 9. Fine KD, The prevalence of occult gastrointestinal bleeding in celiac sprue, N Engl J Med, 1996; 334 (18):1163-1167. 10. Janatuinen EK, Pikkarainen PH, et al, A comparison of diets with and without oats in adults with celiac disease, N Engl J Med, 1995; 333 (16):1033-1037. 11. Srinivasan U, Leonard N, et al, Absence of oats toxicity in adult coeliac disease, BMJ, 1996; 313 (7068):1300-1301.
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Celiac.com 07/26/2010 - There is very little information currently available regarding the effects of follow up strategies for those celiac patients that follow a gluten-free diet. Therefore, it was the aim of of researchers in Italy to determine the t-transglutaminase antibodies (t-TG) in celiac disease patients while they were enrolled in a community based follow-up program over a 5-year period. Most patients that are diagnosed with celiac disease are told they need to adhere to a gluten-free diet for the remainder of their lives, and then they are usually left to figure it out on their own. However, it is recommended that celiac patients have regularly scheduled follow-ups after diagnosis for early detection of celiac related complications, and to reinforce the importance of adhering strictly to a gluten-free diet. In the year 2000, a community based “celiac disease-Watch” follow-up program was designed by the Local Health Authority of the Brescia Province in Northern Italy. The hope for the celiac disease-Watch program was to increase awareness of celiac disease and to standardize diagnostic criteria for celiac disease among health care professionals. Beginning in January 2003, all celiac patients that reside in the Province of Brescia have been enrolled in an ongoing celiac disease-Watch follow-up program. To encourage celiac patients to enroll in the follow-up program, the Italian government gives patients a bonus to subsidize their gluten-free diets, and all patients are required to contact the Local Health Authority every year to renew their bonuses. Furthermore, the celiac disease-Watch program requires all patients to have their serum tested once a year for detection of t-TG antibodies. Testing for the antibodies begins 12-16 months after a celiac diagnosis. The testing is free of charge to the patients and they can choose any laboratory they like. Results from the t-TG testing is reported to the Local Health Authority, and it is a requirement to continue to receive subsidization, although patients continue to receive subsidization regardless of their t-TG results. Those that test positive for t-TG antibodies during their annual follow up, are referred back to the clinic where they were initially diagnosed. At the clinic they receive a clinical evaluation, and dietary counseling. While those that have a clean bill of health are scheduled for follow up appointments every 3 years. Through this study, researchers found that as a result of the celiac disease-watch program, celiac patients with negative t-TG antibodies advanced from 83% to 93%. Respectively, using mathematical modelling to t-TG conversion rates observed in the study, the projected population of t-TG negative patients increased in population from 90% to 95% over the 5 year period. From this study, researchers were able to determine with confidence that without a follow-up strategy in place, patients with celiac disease will be inconsistent with adhering to a gluten-free diet. It is therefore strongly emphasized that regular serological and clinical follow-ups are a sustainable strategy to promote dedicated compliance to a gluten-free diet. Source: Digestive and Liver Disease doi:10.1016/j.dld.2010.05.009
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- Genetic Digestive Disorder Affects an Estimated One in 250 Americans - Celiac.com 02/26/2003 - WOODLAND HILLS, Calif., Feb. 19, 2003/PRNewswire -- Results from a new study may lead to the first medical treatment for celiac disease, a hereditary digestive disease that can damage the small intestine and interfere with the absorption of nutrients from food. Celiac disease sufferers cannot tolerate gluten, a protein that is found in wheat, barley and rye. Celiac disease affects an estimated one in 250 Americans, mostly those of European descent, and there is no known medical treatment or cure. Zengen, Inc. researchers discovered that a synthetic form of alpha-Melanocyte-Stimulating Hormone (alpha-MSH) has an anti-inflammatory effect in celiac mucosa, the inside lining of the intestinal tract that absorbs food into the body. A naturally occurring molecule, alpha-MSH modulates inflammatory and immune responses. Data confirming the presence of alpha-MSH in celiac mucosa suggests the presence of a local reaction of the molecule to control the inflammatory response elicited by gliadin. Gliadin is the sub fraction of gluten that acts as a toxin or poison in people with celiac disease; it causes an immune reaction, resulting in damage to the small intestine and an inability to digest and absorb nutrients necessary for health and growth (malabsorption). The findings, Anti-Inflammatory Effects of alpha-Melanocyte-Stimulating Hormone in Celiac Intestinal Mucosa, appear in the February 20, 2003 issue of NeuroImmunoModulation, the official journal of the International Society for Neuroimmunomodulation. Our research suggests that locally-produced alpha-MSH modulates inflammation and perhaps limits epithelial damage in patients with celiac disease, stated James M. Lipton, Ph.D., study investigator, chief scientific officer and director of Zengen. We are particularly excited by these findings as these data, coupled with abundant evidence of the anti-inflammatory and anti-infective activity of Zengens novel molecules based on alpha-MSH, further validate our research and development efforts in numerous areas including celiac disease. These positive results will be used to guide further advancements toward clinical use of the molecules. The study used human celiac mucosa cells in culture. Researchers collected duodenal biopsy pairs from 53 adult celiac patients (34 untreated patients and 19 celiac patients on a gluten-free diet) and 14 normal subjects and conducted three series of experiments in order to determine: (1) mucosal immunoreactivity for alpha-MSH and melanocortin receptors (MCRs), and gene expression of alpha-MSH precursor pro-opiomelanocortin and MCRs; (2) alpha-MSH and inflammatory cytokine production by duodenal specimens in vitro, and the influence of synthetic alpha-MSH on such cytokine production, and; (3) the influence of stimulation with gliadin on alpha-MSH and cytokine production in vitro and the effect of alpha-MSH on gliadin-stimulated cytokine production. Results suggest a localized anti-inflammatory influence based on alpha-MSH and its receptors: duodenal mucosa showed evidence of alpha-MSH and two of its receptor subtypes, MC1R and MC5R. Further, alpha-MSH and MC1R immunoreactivity was more intense in cell specimens from celiac patients and release of interleukin 6 (a lymphokine that stimulates the inflammatory response) from gliadin-stimulated duodenal mucosa was inhibited by synthetic alpha-MSH. Patients suffering from celiac disease currently have no medical options beyond a lifetime adherence to a strict, gluten-free diet, added Dr. Lipton. Clearly, if we can control the inflammatory responses that are a major part of celiac disease and limit the immunosuppression, this could lead to the first medical treatment to help the millions worldwide suffering from this genetic disease. Zengens novel molecules were developed from more than 25 years of original research in the US, Europe and Asia on peptide molecules derived from alpha-Melanocyte-Stimulating Hormone (alpha-MSH). James Lipton, Ph.D., Zengens chief scientific officer, chairman of the scientific advisory board and director, and his collaborators first demonstrated that alpha-MSH possesses anti-inflammatory properties and uncovered the specific activity of the carboxy-terminal tripeptide region (C-terminal peptide) of the alpha-MSH peptide. These discoveries led to the development of Zengens proprietary peptide molecules, including CZEN 002, a synthetic octapeptide. Zengen is currently conducting phase I/II clinical trials with CZEN 002 in vaginitis. About Celiac Disease According to the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) of the National Institutes of Health (NIH), celiac disease (celiac disease), also known as gluten intolerance, celiac sprue or gluten sensitive enteropathy, affects an estimated one in 250 Americans. Celiac disease is a condition in which there is a chronic reaction to proteins called glutens which causes destruction of the villi in the small intestine, with resulting malabsorption of nutrients. A genetic disease, it may appear at any time in the life of a person with a hereditary predisposition. Celiac disease is often misdiagnosed, symptoms are varied and there is no current medical treatment or cure. Patients who suffer from celiac disease currently have only one alternative -- adherence to a lifetime, gluten-free diet. If left untreated, celiac disease can lead to malabsorption, which, in turn, can lead to malnutrition. Celiac disease is especially serious in children and adolescents, who need adequate nutrition to develop properly. Further, people with celiac disease who dont maintain a strict, gluten-free diet have a greater chance of developing one of several forms of cancer, particularly intestinal lymphoma. Other long-term complications include anemia, diabetes mellitus, hypothyroidism, osteoporosis, seizures and peripheral neuropathy. About Zengen, Inc Zengen, Inc. is a biopharmaceutical company focused on discovering, developing and commercializing innovative products to treat and prevent infection and inflammation through application of its proprietary peptide technologies. Zengens novel molecules offer broad-based anti-infective and anti-inflammatory solutions for multiple diseases and disorders, ranging from yeast infection to transplantation, and have the potential to significantly alter the way these diseases are treated. For more information about Zengen, please visit www.zengen.com. Zengen, Inc. Forward-Looking Statement Disclaimer This announcement may contain, in addition to historical information, certain forward-looking statements that involve risks and uncertainties. Such statements reflect managements current views and are based on certain assumptions. Actual results could differ materially from those currently anticipated as a result of a number of factors. The company is developing several products for potential future marketing. There can be no assurance that such development efforts will succeed, that such products will receive required regulatory clearance or that, even if such regulatory clearance were received, such products would ultimately achieve commercial success. Source: Zengen, Inc.
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