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  1. Celiac.com 11/29/2017 - Wellington's Victoria University is the first institution of its kind in New Zealand to receive a full Celiac accreditation for its residence dining halls. Under a new partnership between Coeliac NZ and Compass, the company that provides food and support services to the six residence Halls at Victoria, the university achieved gluten-free accreditation through independent auditing company SGS in August 2017. Compass caters to resident university students with a range of food allergies and intolerances. The company already has a robust allergen management system in place, but wanted to do more to improve their gluten management practices. As part of its Dining Out program, Coeliac NZ helped Compass to further sharpen their focus on gluten management. "Providing safe food for residents is essential for [student] wellbeing and the success of their studies. The program has given us added confidence around managing safe gluten-free food service throughout our kitchens and dining halls," says Compass Group Dietitian Margaret Thorson. As part of the program, the entire Compass team, everyone from dietitians and site managers, to front-of-house workers, conducted an intensive review of entire process of gluten-free food preparation and practices.This included delivery, storage, food preparation, cleaning, service and communication. Compass staff also completed the Coeliac NZ online training focusing on gluten management. Coeliac New Zealand General Manager, Dana Alexander, says the organization is incredibly proud of the work done with Compass to offer safe gluten-free dining at Victoria University Halls of Residence, which helps take away one of the biggest challenges for people living with coeliac disease – eating meals they haven't prepared themselves. "Our Dining Out Programme provides the food service industry with the knowledge and skills to prepare safe gluten-free food, free from the risk of cross-contamination via utensils or food-prep surfaces. They can confidently tell customers they're delivering a reliably excellent gluten-free dining experience," she says. Read more at: scoop.co.nz
  2. Celiac.com 01/29/2016 - The drive to introduce specialties like kosher, gluten-free, vegan, and allergy-friendly foods at college campuses has really taken off in the last few years, with more and more colleges establishing alternative dining halls and food selections on their campuses. The latest beneficiaries of the this movement are the students of the University of Delaware, which just opened the new, state-of-the-art Caesar Rodney Residence Hall Complex and dining hall, in partnership with food-service vendor Aramark. The dining hall will offer a new dining options for students with dietary restrictions, including kosher, gluten-free and vegan. Asked about the focus of the project, Ryan Boyer, marketing director for Aramark, says that main idea is "a restaurant-driven, culinary brand," where customers "see the food being prepared in front of them." The dining hall features an open floor plan that can seat nearly 1200 people at a time, but there are no slow, long cafeteria lines. That's because the hall relies on food preparation stations, much like a food court at a local mall. This way, large numbers of students can choose from a wide variety of offerings. To make it work at scale, each station makes just one main course per meal so the culinary staff can focus on preparing it well. But, with more than a dozen stations, there is no shortage of choices. Among the stations are one that is strictly gluten-free and another that is strictly vegan. There is also a kosher station that uses strict preparation techniques, and the facility even keeps a mashgiach on staff, to monitor food preparation to ensure it meets kosher standards. Here's hoping more university students nationwide will soon join their peers at the University of Delaware in enjoying the benefits of specialty dining options that meet their individual needs. Source: delawareonline.com
  3. Celiac.com 12/26/2012 - The Justice Department today announced an agreement with Lesley University in Cambridge, Mass., to ensure that students with celiac disease and other food allergies can fully and equally enjoy the university’s meal plan and food services in compliance with the Americans with Disabilities Act (ADA). Food allergies may constitute a disability under the ADA. Individuals with food allergies may have an autoimmune response to certain foods, the symptoms of which may include difficulty swallowing and breathing, asthma and anaphylaxis. For example, celiac disease, which is triggered by consumption of the protein gluten (found in foods such as wheat, barley and rye), can cause permanent damage to the surface of the small intestines and an inability to absorb certain nutrients, leading to vitamin deficiencies that deny vital nourishment to the brain, nervous system, bones, liver and other organs. Celiac disease affects about 1 in 133 Americans. “By implementing this agreement, Lesley University will ensure students with celiac disease and other food allergies can obtain safe and nutritional food options,” said Thomas E. Perez, Assistant Attorney General for the Civil Rights Division. “The agreement ensures that Lesley’s meal program is attentive to the schedules and demands of college students with food allergies, an issue colleges and universities across the country need to consider.” Under the settlement, Lesley University agrees to amend its policies and practices to: Continually provide ready-made hot and cold gluten- and allergen-free food options in its dining hall food lines; Develop individualized meal plans for students with food allergies, and allow those students to pre-order allergen free meals, that can be made available at the university’s dining halls in Cambridge and Boston; Provide a dedicated space in its main dining hall to store and prepare gluten-free and allergen-free foods and to avoid cross-contamination; Enable students to request food made without allergens, and ensure that a supply of allergen-free food is available; Work to retain vendors that accept students’ prepaid meal cards that offer food without allergens; Display notices concerning food allergies and identify foods containing specific allergens; Train food service and University staff about food allergy related issues; Pay $50,000 in compensatory damages to previously identified students who have celiac disease or other food allergies. The settlement agreement was reached under the ADA, which prohibits discrimination against individuals with disabilities by public accommodations, including colleges and universities, in their full and equal enjoyment of goods, services, and facilities. More information about the Civil Rights Division and the laws it enforces is available at www.justice.gov/crt . More information about the settlement with Lesley University can be found at www.ada.gov or by calling the toll-free ADA Information Line at 800-514-0301 or 800-514-0383 (TTY).
  4. This article originally appeared in the Spring 2003 edition of Celiac.com's Scott-Free Newsletter. Refractory sprue. The specter of this condition is enough to cause fear in the hearts of many people living with celiac disease, yet this fear is based more on myth and misunderstanding than on medical science. For those who are concerned about their risk for developing refractory sprue, there is much that can be done. For those who have developed the condition, there are treatment options and new hope on the horizon. To begin, however, we must substitute fear with knowledge. What is refractory sprue? This question has been the subject of great scientific inquiry, and there are differing opinions on the relationship between celiac disease and refractory sprue. However, there are several general characteristics of refractory sprue that researchers seem to agree on: Presence of persistently damaged villi in the small intestine that are not repaired after the gluten free diet has been successfully initiated and/or maintained An increased presence of intraepithelial lymphocytes (IEL) in the small bowel Severe malabsorption Researchers think of celiac disease as the beginning of a spectrum of conditions that could, for a small percentage of patients, end up at the other end to be enteropathy associated T-Cell Lymphoma. Most people with celiac disease will respond to the gluten free diet and never move to the next stage in this spectrum. But for those that do, they will experience changes in their immune system and in the cells lining their intestine that could lead to cancer. The spectrum would start with celiac disease, and the next step would be the non-responsiveness of the immune system to the gluten-free diet, in other words, refractory sprue. Then in some cases, a condition called ulcerative jejunitis develops, and finally, the damaged lining of the intestine produces cancer cells that mimic the mutations of the abnormal immune system cells. How many people with celiac disease are affected by refractory sprue? First, there are no reported cases in the medical literature of celiac sprue in people under 20 years of age. Second, the number of celiacs affected by refractory sprue, while not known, appears to be very small. We know this because the current estimates for small bowel cancers in people affected by celiac disease, as reported at the 10th International Conference on Celiac Disease is less than 2.5%. Refractory sprue can result in small bowel cancers, but not in all cases. It is interesting to note that in a recent study of patients with "unresponsive" celiac disease, Dr. Joseph Murray and his colleagues found that of 49 patients evaluated, only nine actually had refractory sprue—25 were found to have gluten contamination in their diets. The most common symptoms presented by the patients who truly had refractory sprue were weight loss, steatorrhea and diarrhea, in that order. What makes refractory sprue different than celiac sprue? Again, there are several medical points of view on this, but all researchers would agree that one marker indicates the presence of refractory sprue, and it is not found in celiac disease. Abnormal Intraepithelial Lymphocytes (Immune Cells) The intraepithelial lymphocytes found in celiac disease have a normal-looking appearance under the microscope and they behave like normal celiac immune cells (they respond to gluten when they shouldnt). These lymphocytes have the ability to communicate with other cells using different types of messages on their cell surfaces. When diagnosing celiac disease, pathologists look for an increased number of IELs as an indication of celiac disease. In refractory sprue, however, there is a different kind of IEL that is found in great numbers. This immune cell does not look normal, and it ignores the presence or absence of gluten. This type of cell does not have the ability to communicate normally with other cells as it would be expected to do. However, it does have the ability to communicate with cancer cells, contributing to their development. It is not clear what causes this type of IEL to develop or mutate, contributing to refractory sprue. It is possible to have refractory sprue without having these abnormal lymphocytes; in this case, treatment with steroids often results in response to the gluten free diet and a reversal of the condition. French researchers have developed a test to determine whether a biopsy specimen reflects a normal course of celiac disease with a slow response to the diet, or the need for further testing because refractory sprue may be present. In paraffin wax, a specimen can be stained to determine whether or not the immune cells express CD8, a protein often found on intraepithelial lymphocytes in celiac disease. If CD8 is positive, the individual has celiac and is responding very slowly to the diet. If the sample is CD8 negative, refractory sprue could be the reason. How is refractory sprue diagnosed and treated? It must be established through a thorough diet history and antibody testing that the individual is adhering to a strict gluten-free diet. Then, all other gastrointestinal diseases have to be ruled out before a diagnosis of refractory sprue is made. Conditions to be ruled out include pancreatic insufficiency, lactose malabsorption, parasite infestation, intolerance to other food proteins, coexisting inflammatory bowel disease, and autoimmune enteropathy, among others. Diagnosis should include a test called an enteroscopy, which is a procedure that explores more of the small intestine, and often finds ulcerative jejunitis, a marker of damage in refractory sprue. In addition, because the abnormal IELs can proliferate throughout the gut, a colonoscopy is recommended to determine if lymphocytic colitis is present. Treatment options include the elemental diet (also used in Crohns Disease), total parenteral nutrition (tube feedings), steroids, immunosuppressive therapies such as Cyclosporine, Infliximab, and in some cases, chemotherapy. Treatment options depend on the extent of refractory sprue found on biopsy and the nature of the clinical symptoms involved. How can I reduce the chances of developing refractory sprue? Researchers agree that most cases of refractory sprue develop in people who were diagnosed very late in life or who didnt follow the diet completely. Note that it doesn't matter how much gluten was consumed in these patients, they still developed refractory sprue. So the best protection against developing refractory sprue is to follow the diet. Be honest with yourself, especially if you cheat a little. What are you eating? Are you sure there isnt a great gluten-free alternative out there? Hey, there's even beer nowadays, so don't dismiss the suggestion of great gluten-free brownies, cakes, pies, pasta, crackers, cookies, or whatever else you are craving. Deal with your feelings too. Its easy to get angry about how life is much harder for people with celiac disease—how everything related to food requires too much planning, preparation, and explanation. These feelings are perfectly justified, but they do not justify cheating on your diet. There are great "quick fix" cookbooks out there, even convenience meals that are gluten free. Do whatever it takes to stay healthy, and gluten-free for life. Don't forget regular visits to your gastroenterologist or internist. Follow-up care for people with celiac disease is incredibly important, even if the medical community hasn't recognized it yet. Regular antibody testing to monitor compliance with the diet is an extra level of protection that every celiac needs. A simple anti-gliadin antibody test (IGG and IGA), six months post diagnosis, a year post-diagnosis and then every year after that for the first three years is key. In fact, the most serious celiac disease complications tend to occur in the first three years after diagnosis. Veteran celiacs should have their antibody levels checked every couple of years. While refractory sprue remains a potential complication for any adult with celiac disease, a majority of adult celiacs in this country will not have to face this difficult condition. For those diagnosed, treatment options continue to improve and the disease is becoming easier to manage. Researchers continue to study refractory sprue in order to better understand how the condition behaves and to develop new treatments. For now, the best defense against refractory sprue is a good offense—living a completely gluten-free life.
  5. Celiac.com 05/26/2015 - If recent reports are any indication, the University of Washington's PR team might be getting ahead of the facts with claims that the university research team is close to developing a cure for celiac disease. Numerous articles are claiming that UW researchers are working to develop an enzyme-laden pill that would break down gluten in the stomach, thus permitting people with celiac disease to eat wheat. Hence, the 'cure' idea. The enzyme, it is said, would break it apart into amino acids that could be absorbed with no risk of adverse reaction for people with celiac disease. Well, an enzyme that breaks down gluten is not necessarily the same thing as a 'cure' for celiac disease. Ingrid Swanson Pultz, who leads the research project describes the substance as a protein that people with celiac disease will consume orally. The team is looking to begin FDA mandated tests and human trials will sometime in the next two years. The drug "really stands to make an impact on people's lives," Pultz said. However, UW is not the only institution working on drugs to treat celiac disease. There are several drug treatments in progress. It's unclear at present, and will remain unclear until the human trial phase whether the enzyme will permit safe gluten consumption by people with celiac disease, or whether it would permit limited gluten consumption within certain parameters. In fact, given the numerous products currently under development for celiac disease treatment, and hoping to see release in the next few years, we're likely to hear many claims, much hypes, and plenty of marketing and PR flash. Until we actually have a product that works safely and effectively, it seems that any claims regarding a cure for celiac disease are largely overblown PR smoke. That means you, University of Washington. Source: http://www.komonews.com/news/health/UW-Researchers-developing-cure-for-celiac-disease-302653671.html
  6. Celiac.com 01/24/2014 - To create a gluten-free, allergen-free station in a dining hall that serves about 10,000 to 14,000 students each week, and offers a different daily menus for each meal, Lehigh University in Bethlehem went the distance. The result was Simple Servings. Lehigh's earlier dining hall offered gluten-free cereals, soups, pastas and breads via their Your Choice station. That original station has been incorporated into Simple Servings, and Lehigh students with gluten intolerance can now experience the same range of choices as their non-sensitive counterparts. Joseph Kornafel, Lehigh's executive chef, says that the school has really paid attention to details, from getting the right equipment when the station was being built, to maintaining a database of allergen-free recipes, Lehigh has also reached out to coaches and student-athletes to make sure they understand how the system works and to always get a clean plate before taking food from the station to avoid cross-contamination. Purple is the color adopted to designate allergen-free items in the food industry, and Lehigh uses purple to designate all gluten-free food preparation items, including utensils, carts and cutting boards. All gluten-free preparation equipment is dedicated, and never leaves that station to prevent cross-contamination. All chefs working that station are specially trained, and and all ingredients are clearly labeled for each dish. Source: Lehigh Valley Live
  7. Celiac.com 04/19/2013 - The University of Arizona (U of A) has announced plans to add an exclusive gluten-free space as part of their remodeling of the Student Unions' On Deck Deli. This makes U of A the latest university to offer more convenient and reliable gluten-free dining services to students with gluten-intolerance or celiac disease. Fueled in part by increased diagnosis and awareness of gluten-intolerance or celiac disease, and in part by the recent settlement of a lawsuit between L college and the Department of Justice, more and more colleges and universities are taking strong and rapid steps to provide reliable gluten-free food options for students who need them. U of A had already planned to remodel the deli in order to combat an outdated look and falling sales. As part of that process, the university decided to incorporate a strong gluten-free presence in the space, according to Todd Millay, marketing manager of Arizona Student Unions. “What drove it was the gluten-free and the grab and go. We’re responding to a couple of student patterns and we had the opportunity to integrate those at On Deck Deli," Millay said. Gluten-free and to-go food options were incorporated in the new design, as well as new signs, new food cases, better lighting and the elimination of order slips. Most of the renovation was in electrical work and cost a little more than $6,000, according to Millay. Millay said that the University wants gluten-free students to know that they now have a place designed with them in mind.
  8. Celiac.com 10/03/2012 - In an effort to expand the market for Kansas-grown sorghum, a professor at Kansas State University and a group of food science graduate students are conducting research into the use of sorghum in new gluten-free food products for people with celiac disease. Kansas is one of the top sorghum producers in the U.S. In 2006, as the manufacturing of gluten-free products started to take off, sorghum farmers began looking for alternative uses for their crop. Fadi Aramouni, K-State professor of food science, said that quest triggered the university's research into sorghum as a gluten alternative. In America, sorghum has traditionally been used for animal feed, but the growing market for gluten-free foods, along with the availability of food-grade sorghum, is fueling the use of sorghum in these types of food products, he said. Aramouni said the research initially focused on developing a sorghum-based tortilla. He and the students looked at the six varieties of sorghum grown in Kansas and determined which one they thought would work best. They considered factors such as grain hardness, protein, carbohydrate and fiber content, shelf life, dough quality, and flavor. Right away, the research team ran into problems with milling, "because it turns out that the particle size during the milling will affect the properties of the sorghum flour," Armuni said. One problem is that sorghum tends to form a batter rather than a dough, so it is necessary to add eggs and other stabilizers, such as gums, to craft a suitable dough. Using the facilities at Kansas State's grain and science industry department, along with the U.S. Department of Agriculture laboratory in Manhattan, the research team has been able to create tortillas, breads, Belgian waffles and waffle cones from sorghum. Their research is largely funded by the Kansas Department of Agriculture, and includes comparing the glycemic index of their sorghum products to those made of wheat, corn and rice. The glycemic index measures how a given carbohydrate raises blood glucose. In the last few years, the team's sorghum-based creations have won first prize in the American Association of Cereal Chemists competition. using their new knowledge of sorghum, the researchers are now working to create gluten-free soft pretzels, sweet rolls and dinner rolls, vanilla-flavored Waffle Cones and Crunchums, a raspberry-jalapeno-flavored sorghum snack. "This is not cooking. This is science," Aramouni said. It is important science, he adds, because people who must eat gluten-free food need better, more nutritious products. What new gluten-free products would you like to see on the market? Share your comments below. Source: CJOnline.com
  9. Celiac.com 11/22/2010 - A $45 million donation to University of Maryland Center for Celiac Research will be used to create a first-of-its-kind institute to find new treatments, and perhaps a cure, for celiac disease. The donation comes at the behest of the family of a grateful patient from Indiana, Shelia Cafferty. The institute made possible by the donation could eventually employ up to 200 doctors and researchers who will not only study celiac disease, but use it as a model to better understand other associated autoimmune disorders, including diabetes, rheumatoid arthritis and multiple sclerosis. Dr. Alessio Fasano, Director of the Center for Celiac Research announced the donation at a press conference at West Baltimore's University of Maryland BioPark. Speaking about the donation, Fasano told interviewers that raising "enough money is always a problem" for celiac research, and that what has been needed "for a major breakthrough is thinking out of the box, and this will allow us to do just that." In some ways, Cafferty's nutritional health battle is similar to that fought by many people with celiac disease and gluten-intolerance. She suffered nine years of debilitating gastrointestinal symptoms and rashes before she began to suspect wheat a few years ago. Cafferty, a nurse, put herself on a gluten-free diet, which provided relief, but not all of the answers. She continued to visit doctors looking for answers. About a year ago, Cafferty's determined husband tracked down Dr. Fasano, who was able to diagnose her gluten sensitivity. Fasano's diagnosis provided tremendous relief for the Caffertys, and left them with a resolve to help save others from going through similar suffering. "There are a lot of people like me, not getting answers," she said by phone from Indiana. She was unable to make the announcement with her husband Ken. "When you don't feel good, it impacts your activity and your daily living." As a result of their gratitude and resolve, Sue Cafferty and her husband Ken gave $5 million to Fasano's center and arranged for the donation of another $40 million from a foundation with which they are affiliated, but which declined to be named. Ken Cafferty said he and his wife want their money to raise the public's and doctors' awareness, as well as to fund research into treatments and a cure for celiac disease and other autoimmune disorders. "It's heartbreaking to see someone you love suffer," he said. During the press conference, Dr. Jay Perman, president of the University of Maryland, Baltimore, said he expected the celiac center to collaborate with numerous researchers across, and that research done "using the Cafferty's funds will...enable research to result in real solutions for patients and their families."
  10. We have recently reported on Lancet (1) a consistent cohort of patients affected by drug-resistant epilepsy with cerebral calcifications, half of which were cured by a gluten-free diet. All had an atrophic jejunal mucosa, which recovered on a gluten free diet. Gluten intolerance is now a recognized cause of brain calcifications and epilepsy, of dementia, of psychiatric disturbances: many researchers believe that, in genetically predisposed subjects, gluten is not healthy for the brain function (2). This is just too much. Having had over 25 years of variegated experience with gluten intolerance I find hard to imagine that the single most common food intolerance to the single most diffuse staple food in our environment might provoke such a complexity of severe adverse immune-mediated reactions in any part of the human body and function. The list is endless, but malignancies, adverse pregnancy outcome and impaired brain function are indeed complications above the tolerable threshold of this food intolerance. On the other end today we know very well that the majority (as many as 9 to 1) of gluten intolerant subjects, identified by familial or population screening, do not manifest any complaint, although they do have a flat intestinal mucosa (3). In conclusion a sizable proportion of our population (from 0.3 to 1%) is gluten intolerant and reacts with a wide spectrum of symptoms from no apparent reaction to severe life-threatening diseases. This intolerance is strongly linked to specific genetic markers which have indeed required thousands years to develop and be selected: the 'population genetic' time is of this dimension, while the changes in the environment and in the food we eat, require centuries or less. Where did they come from? Hunters, Fishers and Gatherers Human beings have been on Earth for over 3 millions year, but Homo Sapiens Sapiens, our nearest parent, is only 100,000 years old. For ninety thousand years he conducted a nomadic life getting food by hunting, fishing and collecting fruits, seeds, herbs and vegetables from nature. Only quite recently (about 10.000 years ago) did some nomadic tribes start to have stable settlements because they developed the ability to gather enough food to be stored. The cultivation of wild seeds begun. Ten thousand years ago the last glaciation came to an end: a Neo-thermal period ensued which marked the passage from the Paleolithic to the Neolithic age. Ices melted gradually from the equator to the poles over several thousands years when new fertile and humid lands were uncovered in South East Asia all of Europe was still covered with ice and Northern Countries had to wait up to 4000 years more to get out from a frozen environment. The Great Revolution: The First Farmers The discovery in the Neolithic age of ways to produce and store food has been the greatest revolution mankind ever experienced. Passage from collection to production originates the first system in which human labor is transferred onto activities which produced income for long periods of time. The principle of property was consolidated and fortifications to protect the land and food stores were developed. Archeological findings suggest that this revolution was not initiated by the man hunter and warrior, but by the intelligent observations made by the woman. The woman carried the daily burden of collecting seeds, herbs, roots and tubers. Most probably she used a stick to excavate roots and tubers: during this activity she observed the fall of grain seeds on the ground and their penetration into the soil with rain. She may have been surprised to find new plants in the places which she herself dug with a stick, and made the final connection between fallen seeds and new 'cultivated' plants. She was, for thousands years, the sole leader of the farming practices and provided a more and more consistent integration to the scanty products of the man hunter (6). To our actual knowledge, the origin of farming practices should be located in the 'Fertile Crescent': the wide belt of South East Asia which includes Southern Turkey, Palestine, Lebanon and North Iraq. In the highlands of this area abundant rainfall was caused by the neo-thermal switch. In all of this area existed, and still exists, a wide variety of wild cereals, sometimes in natural extended fields, induced by the rainfalls. Triticum Dicoccoides (wheat) and Hordeum Spontaneum (barley) were common and routinely collected by the local dwellers. The wild cereals had very few seeds (2-4) which fell easily on the ground on maturation. The people from the Uadi el-Natuf Tell of South East Asia (7800 B.C.) provided the first traces of the gradual shift from hunters to grain cultivators. Their economy was based on the hunt of the gazelle, but their diet also included collected grain seeds. These gradually came to form a substantial proportion of their energy input, as cultivation practices ensued. There were no grinding stones or mills and it was most probable that gathering prevailed on cultivation. But during the Proto-Neolithic superior a cuneiform mortar appeared. 1000-2000 years later (5000 B.C.) wild animals, more rare due to incoming drought, formed only 5% of the daily diet, while cereals and farmed animals become a sizable part of it (4). Stable settlements were founded: the village of Catal-Huyuk in Southern Turkey had a population of 5000 inhabitants 9000 years B.C. In that area a collection of sickles was found with inserted oxidian blades, smoothed by the routine contact with the siliceous stalk of cereals. The sickles indicate that it was possible to collect seeds not only by picking on the ground, but also by cutting stems of plants which were capable of retaining the seed in an ear (5). 'Mesopotamic' populations, originated in the first farmers, developed a great civilization with large cities and powerful armies to defend their land property and food stores. In Egypt a civilization based on farming practices developed in the 5th millennium: they became specialists in the cultivation of wheat, barley (to produce beer) and flax. The Expansion Of The Farmers While in South East Asia the progressive drought made hunting difficult and encouraged farming, in Europe the Paleolithic culture of hunters and gatherers persisted for 5000 years more, gradually transforming into the Mesolithic age. In the 'Fertile Crescent' the availability of food stores and the gradual development of animal farming stimulated an unprecedented demographic explosion. The nuclear family had had a small dimension for hundreds thousands of years: the birth rate had been limited by nomadic life. In transmigrations the mother had been able to carry one infant, while the others had been obliged to walk and move on their own. Small babies in between had less chances of surviving. Thus mankind remained of approximately the same size during entire ages. Farmers, on the contrary, were settlers, possessed food stores and most probably took advantages in the farming practices of more hands in the family. In this manner the family size exploded and, as a result, a progressive continuous need to gain more lands ensued. The farmer's expansion lasted from 9000 B.C. up to the 4000 B.C. when they reached Ireland, Denmark and Sweden covering most cultivable lands in Europe. The expansions followed the waterways of Mediterranean and of Danube across the time of Egyptians, Phoenicians, Greeks and Romans (7). The farmers' expansion was not limited to the diffusion of the agricultural practices, but was a 'demic' expansion: that is a substantial replacement of the local dwellers, the Mesolithic populations of Europe, by the Neolithic from South East Asia. More than 2/3 of our actual genetic inheritance originated in this new population, while the native genetic background has been progressively lost or confined to isolated geographical areas. The genetic replacement of the native European population is marked by the B8 specificity of the HLA system. Cavalli Sforza and coworkers showed that the migration of farmers is paralleled by the diffusion of B8. The frequency of B8 is inversely proportional to the time length of wheat cultivation. In practice B8 appears to be less frequent in populations which have lived on wheat for a longer time, as it is caused by a negative genetic selection in wheat cultivators (7). We are aware that in Ireland, where the wheat cultivation came only 3000 years B.C., a very high frequency of gluten intolerance has been reported. The Evolution Of Cereals The early wild cereals, of the Triticum (wheat) and Hordeum (barley) species were genetically diploid and carried few seeds, which usually fell on the ground at maturation, making any harvest very difficult. A chromosomes in single couples (diploidicity) allowed for a wide genetic and phenotypic heterogeneity with remarkable variations in the content of protein and starches. Poliploid plants occasionally originated in nature, but they had few chances to survive, without artificial (cultivation) practices and were usually lost (8). The beginning of farming, with the use of irrigation, allowed the survival, and the expansion, of poliploid grains. But the new poliploid grains had substantially reduced genetic variations (since each gene is represented in several copies) and more frequently autoimpollinate themselves, causing remarkable increase of the genetic uniformity. The first stable formation of poliploid grains is dated around 6000 years B.C.: the genetic uniformity caused a considerable rise in stability and yield, convincing the early farmer to induce a progressive and rapid replacement of the wild species. Genetic variability of grains was essential in order to adapt the plant to the very different environmental conditions of different areas, but the yield was generally low (9). Triticum Turgide Dicoccoides was crossed with Triticum Fanschii to originate the Triticum Aestivum, which is the progenitor of all our actual wheat. The Aestivum is an esaploid wheat with 42 chromosomes, versus the 14 of the T. Monococcum. Such powerful grain replaced all existing varieties to the point where genetic variability nowadays is lost: over the world we have 20,000 cultivated species of the same unique T. Aestivum wheat. The Triticum Turgidum Dicoccoides, progenitor of the actual 'durum' wheat with which pasta is made, had just few seeds encapsulated into a pointed and twilled kernel: at maturation the seeds fell on the soil and penetrated into it with rain, eased by the arrow-shaped structure of the kernel. Ten thousand years ago it was difficult to pick them up: hence the attempt, made by the Neolithics, to select varieties which could retain the seed longer, in order to allow for an harvest. Genetic variability was already substantially reduced in Roman times: 'farrum', i.e. spelt, (T. Dicoccoides) and 'Siligo' (T. Vulgaris) were the common grains. Siligo was used for bread making and contained a certain amount of gluten, while spelt, used mainly for soups, was poorer in gluten content (10). But cultivation of wheat and barley was not started or diffused in the whole world: only a small geographic area (South East Asia) developed gluten-containing cereals. In Asia rice was the cultivated species, while in America maize prevailed and in Africa sorghum and millet. All these plants were present in nature and were gradually cultivated in the places of origin (7). In our part of the world grains had for centuries been selected in order to improve their homogeneity and productivity, but soon (Roman times or before?) another desirable quality was preferred: the ability to stick, to glue up a dough to improve bread making. Early bread making activities pushed towards grains that contained greater amounts of a structural protein which greatly facilitated the bread making: the gluten. Gluten was not chosen because of its, at the time unknown, nutritional value (which is not absolutely special, since it is a protein with relatively low nutritional value), but for its commercial qualities. Rice, maize, sorghum, millet do not contain gluten: no leavened bread was prepared with them: the majority of mankind never lived on bread, as we do know it. Over the last 200 years of our modern age active genetic selection, and actual genetic manipulation, have changed the aspect of the original Triticacee enormously: from few grains and little gluten to great wheat harvests very enriched in gluten (50% of the protein content), well adapted to cultivation practices and ready to be handled by monstrous machinery. The Rise Of The Intolerance To Gluten Did everybody adapt to such profound changes in the basic nutrition over such a short period of time? South Eastern populations, presumably well adapted to the new foods, grossly replaced the existing Mesolithic European dwellers who still lived on hunting and gathering. But a proportion of the local populations (or, rather, of their inheritance ) persisted beside the invaders. The feeding changes were not well tolerated by everybody. The best similar example is lactose intolerance: populations that have more recently adapted to milk consumption, still lack the genetic ability to digest lactose over the infancy period. Environment has changed centuries before any change in the inheritance may have been possible. Similarly a considerable proportion of the hunters and gatherers of the pre-Neolithic ages have not fully adapted to the great feed changes induced by the cultivation of wheat. These people could not recognize gluten as a 'tolerable' protein available for digestion and absorption: they may have not have any problem or complaint for centuries, since the content of gluten in the grains was very low, but when 'industrial' quantities of gluten were induced by selection of wheat in order to improve bread making, they were exposed to unbearable quantities of an 'intolerable' protein or peptide. This population, genetically identifiable today by their specific HLA pattern, did not recognized, through their HLA system, the gluten peptide as a tolerable item, but, because of the similarity of some sequences of gliadin peptides with several pathogenic viruses, they generate a complex defense mechanism (an immune response) which does not eventually find the pathogen to destroy, and most probably activate an auto-immune response which ultimately is the origin of the damage to their intestine and other organs. These fierce descendants of hunters and fishers, exposed to this subtle enemy, could not develop the defense of tolerance and, in the attempt to fight the unknown, they ultimately develop a disease due to excess defense. For centuries they underwent a negative selective pressure, with less chances to survive, and then to be manifest (11). In the last millennium gluten-intolerant children mostly had a harsh time behind them: after weaning, malabsorption and malnutrition were the underlying causes of poor defense to infections during infancy and early childhood. Acute infectious diarrhea was the main killer of infants up to 50 years ago in Europe and up to 15 babies every thousand died for this condition. In the suburbs of Naples, only 25 years ago, infectious diarrhea was the main killer (25% on an infant mortality rate of 100 per thousands live births) (12). The vast majority of gluten intolerance occurred among these poor infants. In my own clinical experience 25 years ago I observed several fatal gastrointestinal infections in babies with the 'celiac crisis', which has now disappeared from our wards. Few chances to survive, few intolerant children that reached the reproductive age, and become capable of transmitting the intolerance, few adult cases. Then gluten intolerance may have become extinct, as was in fact the case with several other pathogenic conditions? Not at all. The intolerance most probably had some selective advantage which counterbalanced the gluten intolerance: it is possible to suggest that it was their very effective HLA Class II system that gave them a selective advantage against infections, which compensated the disadvantage due to gluten intolerance. When, in the last 50 years, infantile infections greatly diminished, the descendants of the hunters and gatherers with very active immune-defense, 'over reacted' more frequently to the gluten than to their ordinary enemy. Hence the rise of the cohort that now appears to manifest, in different manners, a gluten intolerance. However, not all populations of the world were ever exposed to such a nasty protein: the vast majority of mankind, after the development of agriculture, lived on maize, rice, sorghum and millet, tubers: all gluten free. All of them did not underwent the selective pressure of gluten intolerance and they may in fact have been the reservoir of wild genes. Finally, breast feeding most probably played a major role in preserving some children from the fatal infection of infancy (13). The capacities of breast milk to protect against viral and bacterial attack, the protection given by maternal antibodies and the delaying effect on the manifestation of symptoms of gluten intolerance (in the predisposed subjects) may all have protected the hunters and gatherers, who in this manner avoided to develop fatal symptoms and managed to survive and transmit their genes to our population. Hints On The Epidemiology Of Gluten Intolerance The epidemiology of gluten intolerance, as we know it today, is the complex result of the apparition of the population of hunters and gatherers in our modern world. As the cohort of those born before the World War II had few chances to survive infancy, we nowadays have few adult cases and few long term complications. Where the intolerance is still manifested mainly in the classical way (infants and small children, malabsorption, diarrhea, often switched on by an infection) we do not frequent encounter 'atypical' presentations and adult cases or long term complications. In this case the epidemiological calculations on observed cases made by gastroenterologist may be in great contrast with those made by pediatricians. On the contrary the rarity of 'classical' cases, which has been used as the proof of the 'disappearance' of gluten intolerance, is counterbalanced by the presence of atypical and late diagnosis, where actively searched for. Finally nutritional attitudes have played a major role with regard to the chances for hunters to manifest themselves in different age groups: the example of Sweden as compared to the nearest Denmark or Finland is paradigmatic (14). As shown by Maki et al, the ability to identify atypical cases may completely change the observed epidemiological pattern in a given region. Hence the reason for the 'iceberg': most cases still to be discovered (15). Similarly, population-based screening programs uncover more 'silent' than overt cases (3). Nevertheless, the 'cohort effect', regional differences and so on, have up to now failed to overcome the limits of numbers: when local incidence rates are compared with other regions' rates, the 95% Confidence Intervals of the rates are very often so wide to contain the all lot of observed rates. No clear-cut statistical difference has really been shown in the incidence of gluten intolerance in Europe (16). Wherever extensive studies on symptomatic cases have been run an incidence of 1 case per each 1000 live births has been reached, but very often the incidence has been much lower: up to 1 cases every 250 live births. Population screening studies invariably come to an incidence rate of 1 every 250. This is very close to the rate predicted by age-adjusted incidence density studies (17). Recent reports indicate an incidence close to 1 case per every 100 live births, but this finding needs confirmation. Gluten Sensitive Versus Gluten Intolerant But the epidemiology of gluten intolerance, which entails the tracing of a group of our ancestors, may completely change once we consider the increasing knowledge about the 'gluten-sensitive' individuals. 6 to 10% of first degree relatives of known cases themselves are gluten intolerant and have a flat intestinal mucosa (these are silent cases), but up to 30% of sibs of cases, when challenged with a dose of gluten (or its digest) activates a specific mucosal immune-response (with increase in intraepithelial infiltration and activation of T-Cells), without having any sign of mucosal damage (potential cases?) (18). We may, in the near future, have a substantial group of individuals who do not activate, in presence of gluten, a 'pathogenic' immune response (auto-immunity), but who recognize gluten as a 'suspect' protein in the same way as their peers really intolerant. Finally gluten intolerance is indeed linked to a specific genetic predisposition: most probably at least two genetic loci are involved in running the risk of intolerance. How many possess these specific genetic risk at a 'carrier' state? Certainly more than 5% of the actual population. In conclusion we have a wide population of 'gluten-reactants' in Europe (EC): at least 1 million cases of total intolerance to gluten - an estimated similar amount of 'gluten sensitive' people - 10-15 times more 'carriers' of the risk of becoming gluten intolerant. So we have found our ancestral hunters and gatherers: they are a substantial proportion of our actual community and do deserve a 'gluten-free' alternative not only as a therapeutic mean, but as an option of our daily life. References Gobbi G, Bouquet F, Greco L, Lambertini A, Tassinari CA, Ventura A, Zaniboni MG: "Coeliac Disease, epilepsy and cerebral calcifications" Lancet, 340, Nx 8817, 439-443, 1992 Epilepsy and other neurological disorders in Coeliac Disease. Republic of S. Marino Meeting, April 10-12 1995, G. Gobbi edt., Raven Press, in preparation. Catassi C, Ratsch IM, Fabiani E, Rossini M, Bordicchia F, Candela F, Coppa GV, Giorgi PL: Coeliac Disease in the year 2000: exploring the iceberg. Lancet, 1994, 343: 200-203. Furon R. Manuel de Prehistorie Generale., 1958, Payor, Paris. Cambel H, Braidwood RJ. An old farmer's village in Turkey. Le Scienze, 1970, 22: 96-103. Heichelheim F. An Ancient Economic History. A.W. Sijthoff edt., Leiden, 1970. Cavalli-Sforza L. Chi Siamo (Who are we). 1993 Mondadori, Milano. Raven PH, Evert RF, Eichorn S Biology of plants. 4th ed. Worth Publ. Inc, New York, 1986. Feldman M, Sears ER The wild gene resources of wheat. Scientific American, 1981: 98-109. Lucio Giunio Moderato Columella " Libri rei rusticae" Anni 60-65 dopo Cristo. Ed. Einaudi,1977. Simoons FJ: Coeliac Disease as a Geographic Problem. Food, Nutrition and Evolution, 1982, 179-199. Greco,L.: " Malnutrizione di classe a Napoli" Inchiesta, 24, 53-63, 1976. Greco,L., Mayer,M., Grimaldi,M., Follo,D., De Ritis,G., Auricchio,S.: "The effect of Early Feeding on the onset of Sympthoms in Coeliac Disease" J.Pediat. Gastroenterology Nutrition, 4:52-55, 1985. Maki M, Holm K, Ascher H, Greco L.: Factors affecting clinical presentation of coeliac disease: role of type and amount of gluten containing cereals in the diet. In "Common Food Intolerances 1: Epidemiology of Coeliac Disease", Auricchio S, Visakorpi JK, editors, Karger, Basel, 1992, pp 76-83. Maki M, Kallonen K, Landeaho ML, Visakorpi JK.:Changing pattern of childhood coeliac disease in Finland. Acta Paediatr Scand 1988; 77:408-412. Greco L, Maki M, Di Donato F, Visakorpi JK. Epidemiology of Coeliac Disease in Europe and the Mediterranean area. A summary report on the Multicentric study by the European Society of Paediatric Gastroenterology and Nutrition. In "Common Food Intolerances 1: Epidemiology of Coeliac Disease", Auricchio S, Visakorpi JK, editors, Karger, Basel, 1992, pp 14-24. Magazzu, Bottaro G, Cataldo F, Iacono G, Di Donato F, Patane R, Cavataio F, Maltese I, Romano C, Arco A, Totolo N, Bragion E, Traverso G, and Greco L: "Increasing Incidence of childhood celiac disease in Sicily: results of a multicentric study" Acta Paediatr, 83:1065-1069, 1994. Troncone R, Greco L, Mayer M, Mazzarella G, Maiuri L, Congia M, Frau F, De Virgiliis S, Auricchio S.: "In half of Siblings of Coeliac Children rectal gluten challenge reveals gluten sensitivity not restricted to coeliac HLA.
  11. 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.
  12. For the first time, researchers at the University of Chicago Celiac Disease Center will use mouse model research to explore root causes of celiac disease, test new therapies, and explore new targets for treatment. Celiac disease is the most common genetic autoimmune disease in the world. Celiac disease affects approximately three million Americans, but only three out of every one hundred people with celiac disease have been diagnosed. At least ninety-seven percent of people with celiac disease undiagnosed. Untreated celiac disease can lead to osteoporosis, infertility, neurological conditions, and cancer. Moreover, people with celiac disease have a substantially higher risk of developing other autoimmune diseases, especially Type-1 diabetes. Bana Jabri, M.D., Ph.D., Associate Professor, University of Chicago Medical Center, and a leading celiac disease researcher, will create the new mouse model with the goal of identifying new remedies and preventive treatments targeted at children of families with a history of celiac disease. The studies will also investigate events that contribute to the development of Type-1 diabetes. “There is a critical need to provide the proper resources to those who suffer from celiac disease,” said Stefano Guandalini, M.D., professor of pediatrics at the University of Chicago Medical Center, founder and medical director of the Celiac Disease Center. “This commitment from University of Chicago Celiac Advisory Board reaffirms the Celiac Disease Center’s mission to bring cutting edge research, education and encouragement to those affected by the disease”. Dr. Jabri believes that mouse models are central to understanding the underlying causes of celiac disease, its connection to other autoimmune diseases. The University of Chicago Celiac Disease Center is a 501-c3 non-profit organization, completely funded by donor contributions, and committed to improving the care, diagnosis and awareness of celiac disease. The University of Chicago Celiac Disease Center also provides necessary infrastructure and support for cutting-edge celiac research, including investigations into structure of gluten peptides and the mechanisms by which gluten modifies self molecules. Mouse model studies show promise in helping researchers to better and more quickly unlock the secrets of celiac disease. For more information please visit: www.celiacdisease.net
  13. Celiac.com 05/12/2006 - Dear Colleagues in the Celiac Community: We would like to provide you with a progress report of the Celiac Management Clinic (CMC) at Stanford Medical Center. Realizing that many physicians and gastroenterologists have a limited understanding of the frequency of Celiac Sprue in the population and the subtlety of the clinical manifestations of this disease, we instituted the CMC at Stanford Medical Center in January 2005. This clinic is staffed by Dr. Gail Pyle and myself. A large number of patients who carried the diagnosis of Celiac Sprue have chosen to be seen in consultation--the majority of these did have Celiac Sprue, as estimated from blood antibody tests and the small intestinal (duodenal) biopsy. For many of these patients, comprehensive emphasis on gluten exclusion has been very effective in eliminating symptoms and the malabsorption of nutrients. However, both in this patient group and in those healthy gluten-free Celiac volunteers who participated in the trial supported by the Celiac Sprue Research Foundation in collaboration with the Palo Alto Medical Foundation on pre-treatment of grocery store gluten with a special peptidase(1) there was a surprising discovery. Fully half (~50%) of those presumed to be in remission from the disease had malabsorption of important nutrients. This major finding was a surprise, and it gives us pause concerning Celiac Sprue therapy. Is gluten exclusion not optimal or is it insufficient therapy for this large proportion of Celiac Sprue patients? The concerns about the effectiveness of long-term dietary therapy in Celiac Sprue have prompted us to reassess our approach to this disease. For those of you who reside within reach of Stanford Medical Center, we invite you to visit us at the Celiac Management Clinic for an up-to-date assessment of the status of your Celiac condition. If you are the one out of every two healthy Celiacs with malabsorption, we will take a comprehensive approach to determine the reasons and to facilitate your return to complete remission. If strict gluten exclusion is insufficient to achieve this, we offer other approaches. Indeed, by the end of this year or the beginning of 2007 in collaboration with the Celiac Sprue Research Foundation, we expect to be able to determine the effect of an oral pill therapy for those who continue with malabsorption of nutrients. Stanford accepts most PPO insurance and MediCal and MediCare outpatient coverages. Those who suspect they have Celiac Sprue based on symptoms or blood antibody tests will be seen by Dr. Gray, and those with biopsy-verified disease will be seen by Dr. Pyle. For an appointment, call 650-723-6961, and please state that you wish to see us at the Celiac Management Clinic. Sincerely, Gary M Gray, M.D. Professor of Medicine, Emeritus (Gastroenterology) References: Pyle GG, Paaso, B Anderson, BE, Allen D, Marti T, Chaitan Khosla C, Gray, GM. Low-dose Gluten Challenge in Celiac Sprue: Malabsorptive and Antibody Responses. Clinical Gastroenterology and Hepatology, 3: 679-686, 2005. Pyle GG, Paaso, B Anderson, BE, Allen D, Marti T, Li Q, Matthew Siegel, M, Khosla C, Gray, GM. Effect of Pretreatment of Food Gluten With Prolyl Endopeptidase on Gluten-Induced Malabsorption in Celiac Sprue Clinical Gastroenterology and Hepatology, 3: 687-694, 2005.
  14. Celiac.com 05/12/2003 - Families that have had two or more relatives diagnosed with Celiac Disease or Dermatitis Herpetiformis are being sought for a study to identify factors associated with the development of celiac disease. The goal of the study is to find genes that may predispose individuals and their relatives to develop the condition. The study has been funded for the last six years by a grant from the National Institutes of Health. Discovery of a gene for Celiac Disease could eventually lead to better diagnosis, treatment, and possibly even prevention of celiac disease. Ultimately, the research could result in development of preventive strategies and therapies for individuals who are at high risk for the condition. It is estimated that 1 in 200 people in the United States suffer from Celiac Disease. We are looking for individuals with proven celiac disease who have siblings or extended family members who have also been diagnosed with the disease. The study will accept families where at least two individuals in the same family, with the exception of simple parent-child pairs, have been diagnosed with celiac disease or dermatitis herpetiformis. Study participants will be asked to provide some family medical history and a small blood sample for genetic analysis. Participants will also receive a free Endomysial Antibody test for screening for Celiac Disease. For further information, please contact Linda Steele at the City of Hope at (626) 471-9264 or toll-free at (800) 844-0049 or e-mail celiacstudy@coh.org.
  15. University of Maryland Center for Celiac Research: Research Update - 1 in 150 Adults Have Celiac Disease (Celiac.com 06/12/2000) Multi-Center Serological Screening Study to determine prevalence of Celiac Disease in the United States. We have tested 8,199 individuals as part of the Multi-Center Serological Study for the prevalence of Celiac Disease in the United States. This number is comprised of the following: 4,162 healthy individuals (1,473 pediatric and 2,689 adult), 3,797 from risk groups (1,008 children with symptoms, 618 adults with symptoms, 1,819 first-degree relatives and 352 second-degree relatives). Our preliminary data indicates that the following number of individuals tested positive for Celiac Disease: General pediatric population 1 out of 163 General adult population 1 out of 150 General population 1 out of 154 Children with symptoms 1 out of 40 Adults with symptoms 1 out of 30 First-degree relatives of celiacs 1 out of 12 Second-degree relatives of celiacs 1 out of 11 For each child with symptoms, four children have celiac disease without symptoms; and For each adult with symptoms, 2 adults have celiac disease without symptoms making Celiac Disease a silent disease. We are extremely encouraged by these preliminary findings; however, many more subjects need to be screened to put the study in full operation. Heres how you can help: Pledge your financial support. This study is almost entirely funded by individual donor contributions. Participate in our blood screening drives. New Diagnostic Assay to develop a non-invasive diagnostic test for Celiac Disease.Our scientists have been able to develop a more sensitive, non-invasive, and specific test for Celiac Disease based on the use of tissue transglutaminase. We were able, for the first time, to clone the human tTG gene. Our preliminary results show that the human TtG assay performs much better than the commercially-available tests (including anti-endomysium antibodies and guinea pig-based transglutaminase assay). New Dot-Blot Assay. We have developed a human tTG dot-blot test based on the detection of anti-tTG antibodies in serum or in one drop of whole blood, which can be carried out within thirty minutes. The preliminary results of the dot-blot assay indicate that the assay is as reliable as the human tTG ELISA test, making the diagnosis of Celiac Disease possible at the physicians ambulatory site. If the sensitivity and specificity of these tests can be confirmed on a large scale, a case can be made on the possible discontinuation of the invasive intestinal biopsy procedure as the gold standard for the diagnosis of celiac disease. This would result in early identification and treatment for patients with celiac disease at a significant cost savings. We will continue to validate these innovative tests during the future blood screenings
  16. The University of Chicago Celiac Disease Center (UCCDC) was established to develop and coordinate patient services, research activities, medical education and public awareness initiatives in order to increase the rate of celiac diagnoses and improve the lives of patients in the Midwest. Our efforts are focused on the Chicago area, but every UCCDC program is created with the intention of making it portable so that other medical centers can implement similar programs with proven results. Created by Stefano Guandalini, M.D., an international expert on celiac disease, and Robin Steans, mother of a child with celiac disease, the UCCDC is a unique partnership between a dynamic external advisory board and a premier academic medical center. This endeavor is enhanced through a close working relationship with the Celiac Sprue Association of Greater Chicago and the Friends of Celiac Disease Research in Milwaukee, Wisconsin. Since February, 2001, the UCCDC has launched activities in four program areas: Patient Services: Helping people who are at-risk for celiac disease to learn how they can be tested, and providing information and support to newly diagnosed patients and their families. Professional Education: Expanding the knowledge base of physicians and dietitians who come in contact with at-risk patients so that they can identify people in need of testing and provide appropriate nutritional counseling to newly diagnosed patients. Research: Contributing to the body of scientific knowledge on celiac disease, focusing especially on key unanswered questions regarding the prevalence of celiac disease in the U.S. and in special at-risk populations. Advocacy and Awareness: Heighten the awareness of the general public, most importantly on the symptoms of celiac disease so that persons found to be at risk may be tested, and advocate for better food labeling, increased research funding and improved public accommodation for people with celiac disease and their families. Our Accomplishments: Developed a patient care package program that provides concrete tools like a listing of gluten-free foods, a grocery store guide, newsletters, and memberships to local and national celiac organizations, as well as donations of gluten-free foods for children newly diagnosed with celiac disease and their families. Parents who have received the care packages have said that they feel less overwhelmed about learning the gluten-free diet, and less afraid about what to feed their children. Families receive the care package at the time of diagnosis. Designed a clinical protocol to educate primary care physicians about celiac disease through an educational intervention and a year-long study that helps to identify current patients at risk for celiac disease in their practices. The protocol is being finalized and the program will begin to recruit participants shortly. Planned and implemented an educational event for parents, featuring noted author Danna Korn, speaking on celiac disease and the challenges of raising a child with the condition. During the parents presentation, children were kept busy nearby at a gluten-free carnival. Over 175 people were in attendance, and participants expressed great relief in finding other parents to talk with who were experiencing their same anxieties and fears. Featured in a Sunday Chicago Tribune health article on celiac disease, where the UCCDCs telephone number was listed as a resource for readers. Over 125 calls were generated, which led to 6 people getting tested (that we can confirm) and at least one woman, to date, receiving a diagnosis of celiac disease as a result of the article. Created a dedicated celiac disease clinic at the University of Chicago Childrens Hospital, staffed with professionals who are dedicated to the diagnosis and treatment of celiac disease. We are so grateful for the support weve received from organizations, companies and individuals serving the celiac community and look forward to keeping you updated on our progress and upcoming activities. The University of Chicago Celiac Disease Center at The University of Chicago Childrens Hospital 5839 S. Maryland Avenue, MC 4065 Chicago, Illinois 60637 Tel: (773) 702-7593 Fax: (773) 702-0666 Internet: www.cureceliacdisease.org
  17. Columbia Genome Center at Columbia University College of Physicians and Surgeons, New York, NY: The Center is looking for families who have more than one member affected with Celiac Disease, to participate in a genetic research study. Information about the study is included below. All inquiries should be made to the Genetic Coordinator, Michele Pallai, at (203) 438-3582 or email: pallai@ibm.net. The Columbia Genome Center is sponsoring a research program at the Columbia University College of Physicians and Surgeons to identify the gene responsible for Celiac Disease. Professor of Genetics and Development, T. Conrad Gilliam, renowned for mapping the genes responsible for Wilson disease and spinal muscular atrophy, is leading the investigation. In addition to his own research staff, Professor Gilliam has access to all of the resources of the Columbia Genome Center for ancillary support of this project. Role of Families with Celiac Disease: The key to this type of study is the participation of families in which there are at least two family members affected with Celiac Disease. Participation of unaffected, as well as affected members may be needed. Those individuals who consent to participate will be asked to provide a sample of blood (20cc) for DNA analysis and give permission for release of their diagnostic records for review by Dr. Peter Green, Clinical Professor of Medicine. Blood collection can be done through a physicians office or a blood drawing laboratory. Participants will be provided with a blood drawing kit. The project will cover the costs of drawing the sample and its shipment. Guidance will be provided by the Genetic Coordinator, Michele Pallai. Who can participate in the study? Anyone representing a family with two family members affected with Celiac Disease can participate. Why should I participate? The involvement of multiple families will best enable the identification of the genetic cause of Celiac Disease. It is anticipated that this identification will lead to earlier diagnosis and effective treatment. What will I have to do? You will need to donate a sample of blood and release your diagnostic records. Any incurred costs will be reimbursed. All interested individuals should contact the Genetic Coordinator, Michele Pallai, at (203) 438-3582 or email: pallai@ibm.net.
  18. Currently, the Center for Celiac Research is involved in three critical research areas: Multi-Center Serological Screening Study to determine the prevalence of Celiac Disease in the United States We have tested 3,998 individuals as part of the Multi-Center Serological Study for the prevalence of Celiac Disease in the United States. Our preliminary findings indicate that 5.7% of first -degree relatives and 3.1% of second degree relatives of celiacs test positive for the disease. These results are similar to those reported previously in Europe, suggesting that Celiac Disease is currently under-diagnosed in the United States. We are extremely encouraged by these preliminary findings; however, many more subjects need to be screened to put the study into full operation. Your financial help is pivotal to accomplish our goals. New Diagnostic Assay to develop a non-invasive diagnostic test for Celiac Disease Our scientists have been able to develop a more sensitive, non-invasive, and specific test for Celiac Disease based on the use of tissue transglutaminase. We were able, for the first time, to clone the human tTG gene. Our preliminary results show that the human TtG assay performs much better than the commerically-available tests (including anti-endomysium antibodies and guinea pig-based transglutaminase assay). New Dot-Blot Assay We have developed a human tTG dot-blot test based on the detection of anti-tTG antibodies in serum or in one drop of whole blood, which can be carried out within thirty minutes. The preliminary results of the dot-blot assay indicate that the assay is as reliable as the human tTG ELISA test, making the diagnosis of Celiac Disease possible at the physicians ambulatory site. If the sensitivity and specificity of these tests can be confirmed on a large scale, a case can be made on the possible discontinuation of the invasive intestinal biopsy procedure as the gold standard for the diagnosis of celiac disease. This would result in early identification and treatment for patients with celiac disease at a significant cost savings. We will continue to validate these innovative tests during the future blood screenings. BLOOD SCREENINGS Blood screenings of first and second degree relatives have been conducted in California, Kentucky, Maryland, Montana, Pennsylvania, New Hampshire, New York, North Carolina, Rhode Island, Texas, and Washington state. FUND-RAISING UP-DATE We are happy to report that as of September 1, 1999, the University of Marylands Center for Celiac Research has received approximately $369,494.00 in contributions and pledges. We thank all of you who have made a contribution or pledge. As we reported in the June update, when we began this effort back in May of 1977, we suggested that if 1000 Celiacs, relatives or friends would make a commitment to pledge $200 per year for three (3) years, we would be on our way to funding this extremely important study. For now, we cannot rely on any outside financial assistance. So please, help us to help you. Remember we are not asking you to make a contribution, but to make an investment in the well being of every celiac - now and in the future. DONATION CHECKS Please make all donation checks payable to the University of Maryland Foundation, Inc. and send with the pledge form or a note saying that the donation is for the Center for Celiac Research. Since the University of Maryland Foundation, Inc. houses all the gift funds for the University, they are not permitted to deposit checks into the Celiac account if the check is not made payable to the University of Maryland Foundation, Inc. Thanks for your cooperation. UNITED WAY CONTRIBUTIONS This is another great way to make a gift to the Center for Celiac Research and satisfy your employers request to participate in the United Way Appeal. Please designate under Other The University of Maryland Foundation/Center for Celiac Research, 511 W. Lombard St, Baltimore, MD 21201. OTHER WAYS OF GIVING TO THE CENTER For many, providing for important research is an important aspect of their financial planning. If this is true for you, prudent and skillful investment planning can create rewarding opportunities for both you and the Center for Celiac Research. You may interested to know, for example, that: Appreciated securities, held long-term, can be given to the Center without incurring a capital gains tax. And, the full fair market value of the securities is available as a charitable deduction. Life insurance that is no longer needed for family or business protection can provide major support for the Center while producing important tax savings for you. Participation in a pooled income fund or the establishment of a charitable trust, using appreciated securities, for the eventual benefit of the Center can be an excellent means of increasing your spendable income and minimizing income, capital gains, estate and inheritance taxes. The final opportunity to express your lasting commitment to the Center for Celiac Research at the University of Maryland School of Medicine is through your will or revocable trust. Of course, charitable bequests are not subject to the federal gift tax and are not included in the taxable estate for federal estate tax purpose. WEB SITE Our web site, celiaccenter.org, has been on line since the middle of June. The research and fundraising updates, as well as updates on the Ninth International Symposium on Celiac Disease, individual and group screening information, blood screening locations, and donation information will be posted on the web site. NINTH INTERNATIONAL SYMPOSIUM ON CELIAC DISEASE The Center for Celiac Research at the University of Maryland School of Medicine, the University of Chicago, and the University of California, San Diego are pleased to announce joint sponsorship of the Ninth International Symposium on Celiac Disease to be held August 10-13, 2000 in Baltimore, Maryland. A brochure outlining the program, and registration and hotel information will be distributed to all group leaders throughout the country, and additional brochures will be made available to them for distribution to their members. We anticipate a very large attendance so we advise you to register as soon as possible. WHAT CAN YOU DO? If you have not made a pledge or contribution, please consider making one at this time. Please make checks payable to the UM Foundation, Inc. Center for Celiac Research, Attn: Pam King, 700 W. Lombard St. Room 206, Baltimore, MD 21201. These funds are administered by the University of Maryland Foundation, Inc. If possible, increase your current pledge or make another gift at this time. Discuss the importance of this study with fellow celiacs, relatives, friends or whoever might be in a position to help. Ask them to contribute. Organize discussions and/or fund-raising efforts with your local support group. Help us to identify possible organization, companies, trusts or foundations that might be in a position to help. Please contact Pam King at 410-706-8021 if you have any questions or need any assistance. Send contributions to the Center for Celiac Research in honor or in memory of a friend or loved one. Make a gift to the Center in honor of the holidays.
  19. Currently, the Center for Celiac Research is involved in two critical areas: * Multi-Center Serological Screening Study to determine the prevalence of Celiac Disease in the United States; and * New Diagnostic Assay to develop a non-invasive diagnostic test for Celiac Disease. 1) SEROLOGIC SCREENING STUDY We have tested 3,076 samples as part of the Multi-Center Serological Study for the prevalence of Celiac Disease in the United States. Our preliminary findings indicate that 6.8% of first-degree relatives and 4.7% of second-degree relatives of Celiacs test positive for the disease. These results are similar to those reported previously in Europe, suggesting that Celiac Disease is currently under-diagnosed in the United States.We are extremely encouraged by these preliminary findings; however, many more subjects need to be screened to put the study into full operation. Your financial help is pivotal to accomplish our goals. 2) NEW DIAGNOSTIC ASSAY Our scientists have been able to develop a more sensitive, non-invasive, and specific test for Celiac Disease based on the use of tissue transglutaminase. We were able, for the first time, to clone the human transglutaminase gene. By using this tool, we have developed a new diagnostic tool that may eventually allow us to make a definite diagnosis of Celiac Disease without an intestinal biopsy. BLOOD SCREENING UPDATE Blood screenings of first and second-degree relatives have been conducted in New York, North Carolina, New Hampshire, California, Pennsylvania, Washington, Maryland, Texas, and Rhode Island.Screenings are scheduled for Billings, Montana June 19th, Louisville, Kentucky September, 18th and Vermont (to be scheduled in Oct/Nov.) WEB SITE Thanks to the sponsorship of Dietary Specialties, we are very excited to announce that the Center for Celiac Research will have a web site. The domain name will be www.celiaccenter.org. and should be on line by June 21st. FUND-RAISING UPDATE As of June 1, 1999, the University of Marylands Center for Celiac Research has received approximately $340,000 in contributions and pledges. We thank all of you who have made a contribution or pledge. The Center was very fortunate to receive three significant pledges/contributions over the past four months which helped boost our contribution total by more than $100,000 since our last update. Although this is a significant increase, we must keep the momentum going. For now, we cannot rely on any outside financial assistance. So please, help us to help you. Remember we are not asking you to make a contribution, but to make an investment in the well being of every celiac - now and in the future. NINTH INTERNATIONAL SYMPOSIUM ON CELIAC DISEASE The Center for Celiac Research, the University of Maryland Program for Continuing Education, the University of Chicago, and the University of California, San Diego are pleased to announce joint sponsorship of the Ninth International Symposium on Celiac Disease. The symposium will be held August 10-13, 2000 at the Marriotts Hunt Valley Inn, Hunt Valley, Maryland. The medical program to be presented will discuss the most advanced knowledge of the genetic, immunological, and diagnostic aspects of Celiac Disease. In addition, a panel of international experts will discuss new frontiers for the treatment and prevention of Celiac Disease. Celiacs from around the world will be given the opportunity to compare the practical aspects of living with Celiac Disease in different countries and cultures at a full day session. Registration information and costs will be available in August and will be posted on the web site. WHAT CAN YOU DO? If you have not made a pledge or contribution, please consider making one at this time. Please make checks payable to the UM Foundation, Inc. Center for Celiac Research, Attn: Pam King, 700 W. Lombard St. Room 206, Baltimore, MD 21201. These funds are administered by the University of Maryland Foundation, Inc. If possible, increase your current pledge or make another gift at this time. Discuss the importance of this study with fellow celiacs, relatives, friends or whoever might be in a position to help. Ask them to contribute. Organize discussions and/or fund-raising efforts with your local support group. For example, Tri-County Celiac Sprue from Walled Lake, MI organized a bake sale and the Greater Louisville Celiac Sprue Support Group organized a walk/run event. Both donated the proceeds to the Center. Help us to identify possible organization, companies, trusts or foundations that might be in a position to help. Please contact Pam King at 410-706-8021 if you have any questions or need any assistance. Send contributions to the Center for Celiac Research in honor or in memory of a friend or loved one. Make a gift to the Center in honor of the new year.
  20. The University of Marylands Center for Celiac Research has received approximately $231,000 in contributions and pledges. We thank all of you who have made a contribution or pledge. As we reported in the September update, when we began this effort back in May of 1977, we suggested that if 1000 Celiacs, relatives or friends would make a commitment to pledge $200 per year for three (3) years, we would be on our way to funding this extremely important study. As of September 1st, we had received only 122 pledges in the amount of $70,335. To date, we have received only 8 additional pledges; however, we did receive a significant number of cash contributions for which we are very grateful. For now, we cannot rely on any outside financial assistance. So please, help us to help you. Remember we are not asking you to make a contribution, but to make an investment in the well being of every celiac - now and in the future. We wanted to advise everyone that due to circumstances beyond our control our voice mail line 410 706-2715 crashed on December 20th. The problem was corrected on January 11th; however, all messages that were left during that time were lost. We apologize for any inconvenience this may have caused.
  21. We have tested 1,579 samples as part of the Multicenter Serological Study for the prevalence of celiac disease in the United States. Our preliminary findings indicate a 5.8% positive finding of first degree relatives and a 3.2% positive finding of second degree relatives of celiacs. These findings are in the same range as were found in most of the European studies done in previous years. As we initially stated in our protocol, we will need to test a total of 45,000 blood samples. The six (6) regional centers have begun minimal screening of study participants. Now we need the necessary dollars to put the study into full operation. Blood testing, supplies, and shipping charges will increase significantly in direct proportion to the samples processed.
  22. Center for Celiac Research Multi-Center Serological Study Update As of September 1, 1998. The University of Marylands Center For Celiac Research has received approximately $190,000 in contributions and pledges. Thanks to those of you who have made pledges and gifts, we have been able to purchase and install a dedicated computer system. The six (6) regional centers have begun minimal screening of study participants. Thanks to a partial grant provided by the University of Trieste, we now have one of the leading international experts in entiendomysium celiac disease assisting us full time in our lab. We have tested 1178 samples as part of the Study for the Prevalence of Celiac Disease in the United States. Our preliminary findings indicate a 6% positive finding of first-degree relatives and 3.4% positive finding of second-degree relatives of Celiacs. These findings are in the same range as were found in most of the European studies done in previous years. As we initially stated in our protocol, we will need to test a total of 45,000 blood samples. All the tools and players are in place - now we need the necessary dollars to put the study into full operation. Blood testing and shipping charges will increase significantly in direct proportion to the samples processed. We thank all of you who have made gifts and pledges. The Celiac community has been very supportive of our grass-roots fund-raising effort. When we began this effort back in May 1997, we suggested that if 1000 Celiacs, relatives or friends would make a commitment to pledge $200 per year for three (3) years we would be on our way to funding this extremely important study. To date we have received ONLY 122 pledges in the amount of $70,335. We have also received a significant number of cash contributions, and as previously announced we were blessed to receive a generous gift of $50,000 from the Oberkotter Foundation. For now, we cannot count on any financial assistance from the NIH. So once again asking YOU to please help us. Remember we are not asking you to make a contribution, but to make an investment in the well being of every Celiac - now and in the future. HOW? If you have not made a pledge or contribution, please consider making one at this time. If possible, increase your current pledge or make an additional gift. Discuss the importance of this study with fellow Celiacs, relatives, friends or whoever might be in a position to help. Ask them to contribute. Organize discussions and/or fund-raising efforts with your local support group. Help us to identify possible organizations, companies, trusts or foundations that might be in a position to help. Contact Pam King, Call (410) 706-8021 for any questions or assistance. All donations and pledges should be made payable to the UM Foundation, Inc. - Center for Celiac Research, Attention: Pamela King, Director of External Affairs, 700 W. Lombard Street, Baltimore, Maryland 21201. These funds are being managed by the UM Foundation, Inc. Thank you again for your commitment to this invaluable research.
  23. Copyright by Michael Jones, Bill Elkus, Jim Lyles, and Lisa Lewis 1995, 1996 - All rights reserved worldwide. Memo to the Celiac Community From: Annette Bentley, NJ Phyllis Brogden, PA Sue Eliot, WA Bill Elkus, CA Sue Goldstein, NY Bette Hagman, WA Joanne Hameister, NY Caroline Harlow, DC Marge Johannemann, KY Mike Jones, FL Cynthia Kupper, WA Sandra Leonard, OH Bob Levy, MD Jim Lyles, MI Mary Neville, PA R. Jean Powell, MT Carolyn Randall, OH Ellen Switkes, CA How can Celiacs in the U.S. get the necessary attention of the medical, business and governmental communities we so desperately seek? A few short years ago many European countries were experiencing the same frustrations. Today, things are dramatically better. Most have Gluten-Free products readily available; doctors are knowledgeably looking for Celiac Disease in patients; school children are being tested for celiac disease when they first enroll in school; McDonalds sells Gluten-free Big-Macs. What made the difference was a series of serological screening studies. They concluded, beyond a reasonable medical doubt, that 1 of every 300 in the general population is a Celiac. These tests showed that there was a lucrative market in Celiac Disease; and money speaks. Since celiac disease is genetic, those of us in the U.S. of European descent should test to the same ratio. This means that there could be more than a half-million Celiacs in the United States. The technology used by the Europeans to do these studies is even more reliable today. Dr. Alessio Fasano and Dr. Karoly Horvath, University of Maryland School of Medicine (UMSOM), conducted a small scale serological study in the U.S. several months ago. This study showed approximately the same results as those in Europe. UMSOM has established the Center For Celiac Research, with Drs. Fasano and Horvath, Medical Directors. They have set-up a design for a comprehensive study, in cooperation with several medical centers throughout the U.S., to establish the prevalence rate of celiac disease in this country. The main ingredient missing to implement this three (3) year, $600,000 study is money. Grant monies from federal, state or local governments are just not readily available, primarily due to the lack of interest in a rare disease such as Celiac. This is why we are putting forth this letter of support. Now is the time to put our money and whatever other resources we may have on the line. Now we can do something to make things better for ourselves, our children and those Celiacs of the future. We need your commitment to help fund this momentous undertaking. If we pledge and contribute what we are able, we can make it happen. For example: One-thousand (1000) of us contributing only $600 - $200 per year, for three (3) years, will fund the study. Saturday, May 10, 1997, 1:00 PM at the University Of Maryland - College Park Campus, in the School Of Business Building, Room 1203, will be the kick-off of this once-in-a-lifetime opportunity to make a real difference. Some of our speakers will be Dr. Michael N. Marsh, Manchester, England, Dr. Alessio Fasano, Dr. Karoly Horvath, and other doctors prominent in the study and treatment of Celiac Disease. A detailed program will be posted in about a week. Whether you are able to attend or not, PLEASE SHOW YOUR COMMITMENT by filling out the attached pledge form and return as indicated. We also need for you to assist us in getting the word out to those who are not on the Internet. Please copy and distribute this letter to members of your local group. As the new century nears, wouldnt it be great to be on the verge of a new era of Celiac recognition and lifestyle that we helped to make happen? FOR RESERVATIONS; or more information contact: Kirk Gardner Telephone 410-328-4400 Fax 410-328-6817 E-mail: kgardner@umms001.ab.umd.edu Internet: http://www.celiaccenter.org/
  24. The April, 1999 Tufts University Medical Letter stated that according to the Food Allergy Network, the following eight foods cause 90 percent of all allergic reactions: Peanuts Tree nuts (such as almonds, cashews, pecans, and walnuts) Fish Shellfish Eggs Milk Soy Wheat.
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