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Found 8 results

  1. The following report was prepared by Ann Whalen, celiac, and editor/publisher of Gluten-Free Living , which is a bimonthly newsletter for celiacs - Gluten-Free Living, PO Box 105, Hastings-on-Hudson, NY 10706. On March 10th, more than 20 members of the celiac community and celiac disease specialists (see list at end) attended a meeting of the Digestive Diseases Intra-agency Coordinating Committee, a part of the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK). The meeting, held to update the current status of Celiac Disease, was chaired by Jay Hoofnagle, M.D., Director of the Division of Digestive Diseases and Nutrition at the NIDDK. At the meeting, presentations were made by Martin Kagnoff, M.D., Joseph Murray, M.D., Alessio Fasano, M.D., and Frank Hamilton, M.D. Dr. Kagnoff is a gastroenterologist and Professor of Medicine at the University of California, San Diego. He spoke about his research into the genetics of Celiac Disease, focusing on the pathogenesis. Dr. Kagnoff is well known for his research into the genetics of Celiac Disease, and several of his studies have been funded by the NIH. Dr. Murray, Associate Professor of Medicine and clinician at the University of Iowa Hospitals and Clinics, described his experience with Celiac Disease both in Iowa and in Ireland, noting that his interest in celiac disease is clinical. He emphasized what he called the Classic II symptoms, meaning the actual symptoms patients have today and not the Classic symptoms many doctors may be familiar with. He said the rate of diagnosis is proportional to suspicion. Dr. Murray described the celiac disease experience at the University of Iowa from 1985 to 1997, presenting statistics that indicated a steep increase in diagnosis. At our institution, Celiac Disease is an adult disease, he said, and is now seen as frequently as Crohns Disease. Anticipating the question, Why look for Celiac Disease?, Dr. Murray gave his reasons: preventing lymphoma and osteoporosis, as well as resolving fatigue and nonspecific symptoms and shortening the current significant delays in diagnosis. Dr. Fasanos presentation was called Where Have All the American Celiacs Gone? He described what has happened in the field of celiac disease in various parts of the world, including some parts of the United States, but emphasized the European experience. Dr. Fasano noted that plans are already underway in Italy to screen all seven-year-olds in 1999. Dr. Fasano explained why an epidemiology study is critically needed in this country. He pointed out the benefits of such a study for four groups: The American health care community: lower health care costs, increased awareness of celiac disease and more knowledge of its protein manifestations in the US Participating physicians: publications, more patients and increased credibility. The American people: the prevalence will be established and celiac disease will be diagnosed more quickly. Celiac Patients: free screening of first-degree relatives, federal support for dietary and drug regulations, an improved food supply, stronger local support groups and more funding for celiac research. Dr. Fasano added that such a study, whatever its findings, would end in a win-win situation for everyone. If the study shows that celiac disease is underestimated in this country, patients will benefit as physicians begin looking for the problem with the knowledge that they might well find it. If the study shows celiac disease is indeed rare in the United States, its even more exciting because we will be able to figure out why. Dr. Hamilton, chief of the Digestive Diseases Program Branch at the NIDDK, briefly described the celiac disease research, to date, that has already been funded by the NIH. He said $1.4 million has been granted for such research, adding that over the last five years, we have seen growth in the funding of Celiac Disease. He said he was pleased funding has increased, and felt a lot of work has to be done. Dr. Hamilton ended by saying, Todays meeting will serve as an impetus for a partnership between the National Institutes of Health, academe, and the lay groups to foster more research. He added that it was important for the investigators and support group representatives present at the meeting to get the word out, referring to information about Celiac Disease. These talks were followed by a round table discussion, between the members of the committee and the presenters. Later, audience comment was invited. The committee showed an interest in the current adult nature of the disease, the changing symptoms, current testing methods, and identification of the most critical research needs. Patients who spoke were anxious to let the committee know what they felt were the important concerns in the real world. At the end of the meeting, Dr. Hoofnagle said his division will prepare a short, pithy plan, then present it to Drs. Kagnoff, Murray and Fasano. He noted that the important issues are pathogenesis, delivering the message to physicians, clinical research issues and pediatric health concern. Some Quotes from the Meeting Elaine Monarch: There is a general lack of knowledge, awareness and interest in Celiac Disease among the medical profession. We celiacs can go for years with substantial symptoms but not diagnosis...The cost to the medical community is enormous. Joseph Murray, M.D.: There is more than one gene involved in Celiac Disease. Most Europeans are homogenous. Here we have a mongrelized population. What happens when you mix? How much does it change? Our mongrelized population may be at risk at a later age. Martin Kagnoff, M.D.: The issue of other genes is not at all clear. Like Joe (Dr. Murray), I see adult celiacs. Their time delay to diagnosis is not exaggerated, but what is striking is the lack of knowledge of doctors, even at the University of California. They really are not aware of this disease. Alessio Fasano, M.D.: We receive 10-15 calls a day. The vast majority are self diagnosed. They say, I know more than my gastroenterologist. Peter Green, M.D.: We need to emphasize education of gastroenterologists. At my institution (Columbia-Presbyterian Medical Center in New York City), doctors are not used to looking at the duodenum...We need to educate many levels of the medical community and tell them, If you dont recognize something, take a biopsy. Sue Goldstein: Im concerned about the people who have not yet been diagnosed and the reasons why a physician wont consider Celiac Disease. It all boils down to, its rare and you cant have it. In addition to the speakers, the following were among those who attended: Phyllis Brogden, celiac, founder and chairperson of the Greater Philadelphia Celiac Sprue Support Group. Winnie Feldman, celiac, Celiac Disease Foundation Kenneth Fine, M.D., gastroenterologist/ researcher at Baylor University Medical Center in Dallas. Al Fornace, M.D., celiac, National Cancer Institute Sue Goldstein, celiac, founder and advisor, Westchester Celiac Sprue Support Group Peter Green, M.D., clinician/researcher at Columbia-Presbyterian Medical Center in New York City. Joanne Hameister, celiac, former chairperson, Western New York Gluten-Free Support Group Ivor Hill, M.D., clinician/researcher at Bowman Gray School of Medicine, Winston-Salem, North Carolina. Beth Hillson, celiac and proprietor of the Gluten-Free Pantry. Karoly Horvath, M.D., clinician/researcher at the University of Maryland School of Medicine in Baltimore. Marge Johanamen, celiac, CSA Kentucky state coordinator Pam King, University of Maryland Bob Levy, Celiac Research Foundation Ruth Levy, spouse Jax Lowell, celiac and author of Against the Grain Elaine Monarch, celiac, founder and Executive Director of the Celiac Disease Foundation Selwyn J. Monarch, Board of Directors, CDF Diane Paley, celiac, governing board CSA/USA Michelle Pietzak, M.D., pediatric gastroenterologist at Childrens Hospital, Los Angeles Connie Tur, celiac, president Greater Louisville Celiac Sprue Support Group
  2. February 13, 2003 Update * The following new article has been added to the Diagnosis & Treatment of Celiac Disease page: o Duodenal Histology in Patients with Celiac Disease after Treatment with a Gluten-free Diet. * The following new article has been added to the epidemiology section of the Miscellaneous Information on Celiac Disease page: o Prevalence of Celiac Disease in the United States is Found to be 1 in 133. * The following new recipes have been added to the Gluten-Free Recipes & Cooking Tips section: o Coconut Muffins o Pizza Crust #3 * Celiac.com's bookstore is now open! We have compiled the best gluten-free books currently available and now sell them directly. For more details visit our store today. * Those who order Scott-Free today will get four new issues, plus 3 free on-line back issues - Summer 2002, Fall 2002, and Winter 2003! o Celiac.com's Guide To A Scott-Free Life Without Gluten. + Preview the first three issues of Scott-Free February 1, 2003 Update * The following new article has been added to the Research on Diseases and Disorders Associated with Celiac Disease page: o Fertility and Pregnancy in Women with Celiac Disease by Michelle Melin-Rogovin (This article offers our visitors a peek into the content of Celiac.com's Scott-Free newsletter, as it originally appeared in the Autumn 2002 edition). * The following new article has been added to the Diagnosis & Treatment of Celiac Disease page: o Magnesium Helps Rebuild Bones in Celiac Disease by Ron Hoggan (This article offers our visitors a peek into the content of Celiac.com's Scott-Free newsletter, as it originally appeared in the Autumn 2002 edition). * The following new article has been added to the conferences section of the Miscellaneous Information on Celiac Disease page: o 10th International Conference on Celiac Disease Research Yields New Findings on Prevalence, Screening and Celiac-Related Conditions by Michelle Melin-Rogovin (This article offers our visitors a peek into the content of Celiac.com's Scott-Free newsletter, as it originally appeared in the Summer 2002 edition). * The following new recipes have been added to the Gluten-Free Recipes & Cooking Tips section: o Bread Recipe for Bread Machine o Pineapple Cheesecake * Celiac.com's bookstore is now open! We have compiled the best gluten-free books currently available and now sell them directly. For more details visit our store today. * Those who order Scott-Free today will get four new issues, plus 3 free on-line back issues - Summer 2002, Fall 2002, and Winter 2003! o Celiac.com's Guide To A Scott-Free Life Without Gluten. + Preview the first three issues of Scott-Free January 12, 2003 Update * The following new article has been added to the Diagnosis & Treatment of Celiac Disease page: o Long-Term Follow-Up of Celiac Adults on Gluten-Free Diet: Prevalence and Correlates of Intestinal Damage * The following new recipes have been added to the Gluten-Free Recipes & Cooking Tips section: o Margit's Pancakes and Waffle Mix o Pizza Crust & Pizza Sauce * Celiac.com's bookstore is now open! We have compiled the best gluten-free books currently available and now sell them directly. For more details visit our store today. * Those who order Scott-Free today will get four new issues, plus 3 free on-line back issues - Summer 2002, Fall 2002, and Winter 2003! o Celiac.com's Guide To A Scott-Free Life Without Gluten. + Preview the first three issues of Scott-Free January 1, 2003 Update * The following new article has been added to the Diagnosis & Treatment of Celiac Disease page: o Specific Serological Tests Can Now Reliably Detect All Cases of Celiac Disease * The following new article has been added to the Miscellaneous Information on Celiac Disease page: o Dr. Kenneth Fine: Singing and Songwriting for Celiacs and Health * The following new information has been added to Danna Korn's Raising Celiac Kids page: o Calling all Gluten-Free Kids! o Danna Korn's Television Appearances/Interviews * The following new recipes have been added to the Gluten-Free Recipes & Cooking Tips section: o Spicy Chicken Fajitas * Celiac.com's bookstore is now open! We have compiled the best gluten-free books currently available and now sell them directly. For more details visit our store today. * Those who order Scott-Free today will get four new issues, plus 3 free on-line back issues - Summer 2002, Fall 2002, and Winter 2003! o Celiac.com's Guide To A Scott-Free Life Without Gluten. + Preview the first three issues of Scott-Free December 18, 2002 Update * The following new article has been added to the Diagnosis & Treatment of Celiac Disease: A Gluten-Free Diet page: o Dental Enamel Defects and Screening for Celiac Disease * The following new article has been added to the Research on Diseases and Disorders Associated with Celiac Disease page: o Depression and Celiac Disease * The following new recipes have been added to the Gluten-Free Recipes & Cooking Tips section: o Coconut Pecan Frosting * Great new companies have been added to the Gluten-Free Specialty Food & Product Companies page. * Celiac.com's bookstore is now open! We have compiled the best gluten-free books currently available and now sell them directly. For more details visit our store today. * The Autumn edition of Celiac.com's Scott-Free newsletter is out! Those who order it today will get four new issues, plus two free on-line back issues! o Celiac.com's Guide To A Scott-Free Life Without Gluten. + Preview the first two issues of Scott-Free December 1, 2002 Update * The following new article has been added to the Miscellaneous Information on Celiac Disease page: o Was JFK the Victim of an Undiagnosed Disease Common to the Irish? * The following new article has been added to the Research on Diseases and Disorders Associated with Celiac Disease page: o Celiac Neuropathy Should be Considered when Neuropathy has Unknown Origin * The following new recipes have been added to the Gluten-Free Recipes & Cooking Tips section: o Booze Cake o PieCrust #4 * Great new companies have been added to the Gluten-Free Specialty Food & Product Companies page. * The Autumn edition of Celiac.com's Scott-Free newsletter is out! Those who order it today will get four new issues, plus two free on-line back issues! o Celiac.com's Guide To A Scott-Free Life Without Gluten. + Preview the first two issues of Scott-Free * Celiac.com's bookstore is now open! We have compiled the best gluten-free books currently available and now sell them directly. For more details visit our store today. + Special limited offer: Buy any 2 books and get a free copy of the Autumn 2002 edition of Celiac.com's Guide to a Scott-Free Life Without Gluten - A $7.48 Value! November 24, 2002 Update * The following new article has been added to the Research on Diseases and Disorders Associated with Celiac Disease page: o Depressive Symptoms in Adult Celiac Disease * The following new recipes have been added to the Gluten-Free Recipes & Cooking Tips section: o Chocolate Chip Ginger Cookies o Pumpkin Cobbler * The Autumn edition of Celiac.com's Scott-Free newsletter is out! Those who order it today will get four new issues, plus two free on-line back issues! o Celiac.com's Guide To A Scott-Free Life Without Gluten. + Preview the first two issues of Scott-Free * Celiac.com's bookstore is now open! We have compiled the best gluten-free books currently available and now sell them directly. For more details visit the store today. + Special limited offer: Buy any 2 books and get a free copy of the Autumn 2002 edition of Celiac.com's Guide to a Scott-Free Life Without Gluten - A $7.48 Value! November 8, 2002 Update * The following new article has been added to the Research on Diseases and Disorders Associated with Celiac Disease page: o Cancer Incidence in a Population-Based Cohort of Individuals Hospitalized with Celiac Disease or Dermatitis Herpetiformis * The following new recipes have been added to the Gluten-Free Recipes & Cooking Tips section: o Flourless Almond Butter Cookies o Granola * Celiac.com's bookstore is now open! We have compiled the best gluten-free books currently available and now sell them directly. For more details visit the store today. o Special limited offer: Buy any 2 books and get a free copy of the Autumn 2002 edition of Celiac.com's Guide to a Scott-Free Life Without Gluten - A $7.48 Value! * The Autumn edition of Celiac.com's Scott-Free newsletter is out! Those who order it today will get four new issues, plus two free on-line back issues! A recently conducted survey of our subscribers indicates that 85% of our readers feel that Scott-Free's articles are "good" or "excellent," and 82% felt that they were very helpful to their own situation. o For more details go to: + Celiac.com's Guide To A Scott-Free Life Without Gluten. # Preview the first two issues of Scott-Free. November 1, 2002 Update * The following new article has been added to the Diagnosis & Treatment of Celiac Disease: A Gluten-Free Diet page: o Australian Researchers Begin Work on a Vaccine for Celiac Disease o Histologic Follow-up of People With Celiac Disease on a Gluten-free Diet: Slow and Incomplete Recovery * Celiac.com's bookstore is now open! We have compiled the best gluten-free books currently available and now sell them directly. For more details visit the store today. * The following new recipes have been added to the Gluten-Free Recipes & Cooking Tips section: o Crepes #1 o Crepes #2 o Quick Tomato Beef * The Autumn edition of Celiac.com's Scott-Free newsletter is out! Those who order it today will get four new issues, plus two free on-line back issues! A recently conducted survey of our subscribers indicates that 85% of our readers feel that Scott-Free's articles are "good" or "excellent," and 82% felt that they were very helpful to their own situation. o For more details go to: + Celiac.com's Guide To A Scott-Free Life Without Gluten. # Preview the first two issues of Scott-Free. October 23, 2002 Update * Celiac.com's bookstore is now open! We have compiled the best gluten-free books currently available and now sell them directly. For more details visit the store today. * The following new recipes have been added to the Gluten-Free Recipes & Cooking Tips section: o Brazilian Carrot Cake o Meat Loaf #4 * The Autumn edition of Celiac.com's Scott-Free newsletter is out! Those who order it today will get four new issues, plus two free on-line back issues! A recently conducted survey of our subscribers indicates that 85% of our readers feel that Scott-Free's articles are "good" or "excellent," and 79% felt that they were very helpful to their own situation. o For more details go to: + Celiac.com's Guide To A Scott-Free Life Without Gluten. # Preview the first two issues of Scott-Free. October 1, 2002 Update * The following new article has been added to the Celiac Disease Research Projects, Fundraising, Epidemiology, etc., section: o Cause of Celiac Disease Identified ? Stanford Team Begins Quest for Cure * The following new article has been added to the Research on Diseases and Disorders Associated with Celiac Disease section: o Excerpts on the Association of Irritable Bowel Syndrome and Celiac Disease by Laura Yick * The following new article has been added to the Diagnosis & Treatment of Celiac Disease section: o Scientific Breakthrough: Finger-Stick Test for the Laboratory Analysis of Celiac Disease * The following new recipe has been added to the Gluten-Free Recipes & Cooking Tips section: o White Chicken Chili * The cutoff date to get a paper copy of the autumn edition of Celiac.com's Scott-Free newsletter is October 7, 2002. Click below to subscribe, or for more details: o Celiac.com's Guide To A Scott-Free Life Without Gluten. + Preview of Scott-Free Newsletter, Summer 2002 Issue, Volume 1 - Number 1 September 18, 2002 Update * The following new article has been added to the Raising Celiac Kids by Danna Korn section: o The Kids are Back in School - Tips for Making the (Gluten-Free) Grade by Danna Korn * The following new recipe has been added to the Gluten-Free Recipes & Cooking Tips section: o Gnocchi o Rice Pancakes * The first issue of Celiac.com's new Scott-Free newsletter is out! Click below to subscribe, or for more details: o Celiac.com's Guide To A Scott-Free Life Without Gluten. o Preview of Scott-Free Newsletter, Summer 2002 Issue, Volume 1 - Number 1 September 1, 2002 Update * The following new article has been added to the Research on Diseases and Disorders Associated with Celiac Disease section: o Excerpts from "Celiac Disease. Going Against the Grains" by M. Pietzak, C. Catassi, S. Drago, F. Fornaroli, A. Fasano. Nutrition in Clinical Practice: 12/01; 16: 335-344 (prepared by Laura Yick) * The Safe & Forbidden Food & Ingredient Lists for Gluten-Free Diets sections have been reorganized and updated. These revisions should make using the lists much easier for everyone. * A New Survey has been added to the site - your participation is much appreciated! * The following new recipe has been added to the Gluten-Free Recipes & Cooking Tips section: o Italian Chicken and Rice * The United States portion of the Doctors Recommended by People with Celiac Disease section has been updated. * The Celiac Support Groups, Organizations & Contacts section has been updated. * The first issue of Celiac.com's new Scott-Free newsletter is out! Click below to subscribe, or for more details: o Celiac.com's Guide To A Scott-Free Life Without Gluten. o Preview of Scott-Free Newsletter, Summer 2002 Issue, Volume 1 - Number 1 August 9, 2002 Update * The following new articles have been added to the Research on Diseases and Disorders Associated with Celiac Disease section: o The Gluten-Free Diet Improves Glycemic Control in Children with Type 1 Diabetes and Celiac Disease. o Type 1 Diabetes-Associated Autoantibody Levels are not Reduced by a Gluten-Free Diet. * The following new recipe has been added to the Gluten-Free Recipes & Cooking Tips section: o Meringues * The first issue of Celiac.com's new Scott-Free newsletter is out! Click below to subscribe, or for more details: o Celiac.com's Guide To A Scott-Free Life Without Gluten. o If you subscribed to Scott-Free, click here to login and view the first issue. If you subscribed to the paper edition you should receive it within two weeks. August 1, 2002 Update * The first issue of Celiac.com's new Scott-Free newsletter is out! Click below to subscribe, or for more details: o Celiac.com's Guide To A Scott-Free Life Without Gluten. o If you subscribed to Scott-Free, click here to login and view the first issue. If you subscribed to the paper edition you should receive it within two weeks. * The following new article has been added to the Miscellaneous Information section: o Bishops in Italy Approve a German-made Low Gluten Eucharistic Host. * The following new recipes have been added to the Gluten-Free Recipes & Cooking Tips section: o Apple Cake #2 o Cornflake Cookies o Southern-Fried Chicken July 10, 2002 Update * The first issue of Celiac.com's new newsletter will be out soon. The cutoff date to order the paper version of our first issue is almost here. Click below for more details about the newsletter: o Celiac.com's Guide To A Scott-Free Life Without Gluten. * The following new recipes have been added to the Gluten-Free Recipes & Cooking Tips section: o Almost Cheeseburger - by Connie Sarros. o Orange Jar Bars - by Connie Sarros. * The following pages have been updated with new information added throughout: o Conferences and Meetings o Celiac Organizations and Contacts o R.O.C.K. Celiac Organizations and Contacts o Doctors Recommended by People with Celiac Disease July 2, 2002 Update * The following new article has been added to the Miscellaneous Information on Celiac Disease section: o Summary of 10th International Celiac Disease Research Conference in Paris, France by Michelle Melin-Rogovin. * The following new recipes have been added to the Gluten-Free Recipes & Cooking Tips section: o Flourless Chocolate Cake #3 o Plum Cake * The first issue of Celiac.com's new Scott-Free Newsletter will be out soon! Click here to subscribe or find out more about this new publication. * Support Celiac.com. June 14, 2002 Update * The following article was added to the Celiac in the 90's & Beyond page: o Celiac Presentations at the National Digestive Disease Conference: May 19-22, 2002 - Summary by Laura Yick * The University of Chicago Celiac Disease Program has been added to the Celiac Disease Support Groups and Organizations page. * After years of requests for these sections, a new About Us / Support Celiac.com section has been added. Within this section highlights of e-mail received over the years from supporters of Celiac.com have been added on the Your E-mail in Support of Celiac.com - 1996 to Present page. * The first issue of Celiac.com's new Scott-Free Newsletter will be out soon, and we highly recommend it to anyone on a gluten-free diet due to celiac disease or other reasons. The following experts will have regular articles/columns in the newsletter: o Scott Adams Founder of Celiac.com and The Gluten-Free Mall. o Shelley Case, B.Sc., RD, Dietitian Author of: "Gluten-Free Diet - A Comprehensive Resource Guide." Co-author of the Celiac Disease Section in the Manual of Clinical Dietetics, Sixth Edition (American Dietetic Association and Dietitians of Canada) and sections of the Canadian Celiac Association's Celiac Needs- A Diet for Life Handbook and A Guide for the Celiac Diabetic. o Carol Fenster, Ph.D. Author of: "Special Diet Celebrations: No Wheat, Gluten, Dairy, or Eggs," "Special Diet Solutions: Healthy Cooking Without Wheat, Gluten, Dairy, Eggs, Yeast, or Refined Sugar," and "Wheat-Free Recipes & Menus : Delicious Dining Without Wheat or Gluten." o Danna Korn Founder of Raising Our Celiac Kids (R.O.C.K.) national support group, and author or: "Kids With Celiac Disease, A Family Guide to Raising Happy, Healthy, Gluten-Free Children" o Cynthia Kupper, RD, celiac disease Executive Director, Gluten Intolerance Group (GIG) o Elaine Monarch Director of Celiac Disease Foundation o Connie Sarros Author of: "Wheat-Free Gluten-Free Dessert Cookbook," "Wheat-Free Gluten-Free Reduced Calorie Cookbook," and "Wheat-free Gluten-free Cookbook for Kids and Working Adults." * Food Allergen Consumer Protection Act - Time to Get Involved! June 6, 2002 Update * The first issue of Celiac.com's new Scott-Free Newsletter will be out soon, and we highly recommend it to anyone on a gluten-free diet due to celiac disease or other reasons. * The following article has been added to the Research Data On Celiac Disease, Gluten Intolerance & Casein Intolerance page: o Breast Feeding Longer Could Prevent Celiac Disease * The following article has been added to the Research on Diseases and Disorders Associated with Celiac Disease page: o Celiac Disease 20 Times More Likely for Those with Type 1 Diabetes * Food Allergen Consumer Protection Act - Time to Get Involved! * The following new recipes have been added: o Brazilian Potato Biscuits o Heavenly Chocolate Cake * The following sections have been updated with new information added throughout: o Conferences and Meetings o Celiac Organizations and Contacts o R.O.C.K. Celiac Organizations and Contacts o Doctors Recommended by People with Celiac Disease May 28, 2002 Update * Our new site has been launched! It is more user-friendly than ever! All articles have been indexed and are in a database so you will get one article per page. This will dramatically speed up your surfing through our site, and will allow you to quickly find what you need. Our site navigation has also been improved with the addition of a new navigation bar that will give you quick access to key links. We hope that you enjoy our new site, and thank you for all of the great suggestions that many of you have made over the years that led directly to these changes! * Announcing Celiac.com's new Scott-Free Newsletter! Scott-Free newsletter provides in-depth, up-to-date information and coverage of the key issues facing people with celiac disease, gluten intolerance and/or wheat allergies. In addition to its excellent recipe and cooking articles, it provides summaries of the latest research on celiac disease, important articles and resources for living life gluten-free, and a level of comprehensive coverage of topics not currently provided by Celiac.com. Scott-Free features regular columns by the following celiac disease/gluten-free authors and experts: o Scott Adams Founder of Celiac.com and The Gluten-Free Mall o Shelley Case, Dietitian Author of: "Gluten-Free Diet - A Comprehensive Resource Guide." Co-author of the Celiac Disease Section in the Manual of Clinical Dietetics, Sixth Edition (American Dietetic Association and Dietitians of Canada) and sections of the Canadian Celiac Association's Celiac Needs- A Diet for Life Handbook and A Guide for the Celiac Diabetic. o Carol Fenster, Ph.D. Author of: "Special Diet Celebrations: No Wheat, Gluten, Dairy, or Eggs," "Special Diet Solutions: Healthy Cooking Without Wheat, Gluten, Dairy, Eggs, Yeast, or Refined Sugar," and "Wheat-Free Recipes & Menus : Delicious Dining Without Wheat or Gluten." o Danna Korn Founder of Raising Our Celiac Kids (R.O.C.K.) national support group, and author or: "Kids With Celiac Disease, A Family Guide to Raising Happy, Healthy, Gluten-Free Children" o Cynthia Kupper, CRD Executive Director, Gluten Intolerance Group (GIG) o Elaine Monarch Director of Celiac Disease Foundation o Connie Sarros Author of: "Wheat-Free Gluten-Free Dessert Cookbook" and "Wheat-Free Gluten-Free Reduced Calorie Cookbook." o Click here for more information or to order your subscription to Scott-Free! May 2, 2002 Update * Both Celiac.com and The Gluten-Free Mall were featured in a recent New York Times article on celiac disease! For more details go to: o Reviews of the Celiac Disease / Gluten-Free Support Page o The Gluten-Free Mall Reviews & Awards * The following article has been added to the Research Data On Celiac Disease and Gluten Intolerance page: o Cause of Celiac Disease Found to be Mostly Genetic * The following article was added to the Diseases Which Resemble Celiac Disease and Related Disorders page: o Untreated Celiac Disease May Cause Liver Failure * The following new recipes have been added to the Gluten-Free Recipes page: o Angel Food Cake o Chocolate Mousse o Lime Cheesecake * The following pages have been updated with new information added throughout: o Safe & Forbidden Lists for Gluten-Free Diets o Conferences and Meetings o Celiac Organizations and Contacts o R.O.C.K. Celiac Organizations and Contacts o Doctors Recommended by People with Celiac Disease April 12, 2002 Update * The following articles have been added to the Diagnosis and Treatment of Celiac Disease page: o People with Celiac Disease are Three Times More Likely to Develop Non-Hodgkin Lymphoma (NHL) o New Antibody Assay Accurately Diagnoses Celiac Disease in Less than 10 Minutes * A new Celiac Disease & Gluten-Free Survey/Poll has been added to the site. We thank you in advance for your participation, which will ultimately help us to improve our service to the celiac community. * Enter Today! for the May 4th - First Annual International Walk/Run for Celiac Disease Research. * New books have been added throughout the Gluten-Free Publications page. * The following new recipes have been added to the Gluten-Free Recipes page: o Cinnamon Rolls o Maria's Bread Flour Mix o Maria's Real gluten-free Light "Wheat" Bread o Matzah * The following pages have been updated with new information added throughout: o Conferences and Meetings o Celiac Organizations and Contacts o R.O.C.K. Celiac Organizations and Contacts o Doctors Recommended by People with Celiac Disease March 19, 2002 Update * Danna Korn has added a new Dear Danna - Frequently Asked Questions section to her very popular Celiac Kids section. o Enter Today! for the May 4th - First Annual International Walk/Run for Celiac Disease Research. * The following article has been added to the Oats and Celiac Disease / Gluten Intolerance page: o Five-Year Follow-Up Study Finds Oats Suitable for Celiacs (03/19/2002) * The following update has been added to the Miscellaneous Information About Celiac Disease page: o URGENT: Volunteers Who Have Celiac Sprue: Research Subjects Needed * The Diseases and Disorders Associated with Celiac Disease page has been updated and reorganized. * The following article has been added to the Diagnosis and Treatment of Celiac Disease page: o Recovery from Celiac Disease - The New England Journal of Medicine * The following new recipes have been added to the Gluten-Free Recipes page: o Bombocado (Brazilian dessert) o Tuna Fish Balls (Brazilian appetizer) o Vanilla Cake (Brazilian dessert) * The following pages have been updated with new information added throughout: o Conferences and Meetings o Celiac Organizations and Contacts o R.O.C.K. Celiac Organizations and Contacts o Doctors Recommended by People with Celiac Disease
  3. * Subscribe to the Gluten-Free Food & Drug SmartLists to have the latest mainstream gluten-free product & drug information. * Order Scott-Free newsletter today and get four new issues over the next year, plus free on-line back issues. o Celiac Disease Newsletter + Preview back issues of Scott-Free * The following new articles were added to the Celiac Disease Research: Associated Diseases and Disorders section: o Gluten-free Diet Prevents Diabetes (Type 1) at Same Rate as Gluten-enriched Diet o Increased Cancer Risk Associated with Delayed Diagnosis of Celiac Disease * The following new article was added to the Celiac Disease Diagnosis, Testing & Treatment section: o New Method of Diagnosing Celiac Disease Looks Promising * The following new articles were added to the all new Gluten-Free Food Reviews section: o Garbo Toast Bread: For Those About to Toast, Garbo Salutes You! o Marthas Tasty All Breast Meat Gluten-free Chicken Nuggets o Dr. Praegers Gluten Free Fish Sticks and Fish Fillets Hit the Spot o Dads Gluten-free Pizza Crust is sure to Please * The following new recipes have been added to the Gluten-Free Recipes section: o Lentil Soup (Gluten-Free) o Creamed Chipped Beef on Toast (Gluten-Free) o Sloppy Joes (Gluten-Free) o Magic Muffins - Universal Gluten-Free Muffin Mix * The Celiac Disease in the Media section always has up-to-date links to media articles regarding celiac disease and the gluten-free diet. * You are invited to use our sites free, and very popular Celiac Disease Message Board/Forum and Calendar.
  4. Dr. Joseph Murray, of the Mayo Clinic Rochester, MN, is a gastroenterologist who specializes in treating Celiac disease. He gave a talk entitled Celiacs in the 90s at a conference hosted by the American Celiac Society on June 10-11, 1994. What follows are highlights of Dr. Murrays talk. Dr. Murray comes from Ireland, where Celiac Sprue (CS) is much more common. In Ireland, people have a much easier time dealing with the gluten-free (gluten-free) diet, whereas in the US it is almost as though it were considered unpatriotic to not eat wheat. You can reach Dr. Murray at: murray.joseph@mayo.edu. Dr. Murray believes that ALL Dermatitis Herpetiformis (DH) patients also have Celiac disease, whether they realize it or not. This celiac disease is often latent or silent. Earlier reports of patients with DH who did not have enteropathy (small intestinal damage) may not have counted milder forms of the celiac disease damage. (Editors note: Dr. Alexander, our physician advisor, believes most, but not all DH patients have Celiac disease.) Not every Celiac patient suffers weight loss or has diarrhea. One of his patients is a woman who weighed 400 lbs. when she was diagnosed. Her symptoms included nocturnal pain, and constipation. After checking the stomach and some other testing, they did a small intestine biopsy. When they found the classic flat villi, they suspected a lab mix-up because the womans symptoms were so atypical. In this case, the woman was suffering from cravings that caused her to greatly overeat. She was nutritionally over- compensating for the small intestine damage. After being diagnosed, the patient went on the gluten-free diet, lost some of these cravings, and promptly lost 50 lbs. Symptomatic Celiacs can be split into two groups: Those that have the classical CS symptoms and those that have atypical symptoms or only one of the classical symptoms. Patients in the first group are usually (though not always) diagnosed correctly by a gastroenterologist. Those in the second group, which make up about 2/3 of Dr. Murrays patients, are much more difficult to diagnose. Another factor is variable histology, which basically means that the villi are not always completely flat. The average adult has more than 20 feet of small intestine, and often, only the very front part gets severely damaged. Often, the remaining portion of the small intestine is able to compensate for what the damaged section is not absorbing. Dr. Murray believes that we are seeing fewer diagnosed Celiacs in the US than in Ireland because our diets are very calorie-dense. This means that even with malabsorption you are still getting a lot of nutrients so that you absorb enough to not lose weight and not fully develop other symptoms. Gluten causes damage that makes the gut leaky. This can lead to exposure of the bodys immune system to foreign allergens it would not otherwise see. This explains why Celiacs tend to have more allergies than the general population. Dr. Murray believes there are several triggers that can activate Celiac disease in genetically susceptible people: A sudden change to a low fat diet, which usually means a sudden increase in starches, which usually means a dramatic increase in wheat-based products. A woman is susceptible during postpartum, when the immune system is adjusting to the changes after delivery. Surgery, particularly GI (gall bladder, etc.) can be a trigger. Certain viral infections. Also, there is some suspicion that certain antibiotics can be triggers, though in these cases it could also be the infection that the antibiotics are fighting. Dr. Murray believes CS is not an allergy; it is an auto immune disease (Allergy vs. Intolerance). For Celiac disease to develop, two conditions must be met: There must be a genetic predisposition towards Celiac disease. This involves very specific genetic factors. The auto immune system must be triggered in some way. CS tends somewhat to run in families. The incidence in first degree relatives (parents, siblings, children) of a Celiac is about 10%. Anyone who has both a parent and a child with CS should be tested themselves for CS. CS is not entirely genetic. Among identical twins, if one has CS, about 70% of the time the other will also have CS. If the disease were entirely genetic, then the incidence in identical twins would be 100%. Among siblings that are HLA-matched to a Celiac sibling, the incidence of CS is about 30%. When not HLA-matched, the incidence rate is much lower. According to Dr. Murray, since CS is an auto immune disease, it follows that there are other auto immune diseases that are associated with it. Rheumatoid Arthritis, Lupus, Type I Diabetes, and some eye problems may occur more frequently in CS patients. This is not because of gluten or CS itself; it is because CS patients are part of a group that is genetically predisposed towards auto immune problems. About 5% of CS patients also have DH. At the University of Iowa, there have been 350 patients diagnosed with DH. Dr. Murray believes these have celiac disease. If these DH patients are only 5% of the Celiacs, then there should be about 7,000 Celiacs in the Iowa area. The number of diagnosed Celiacs is much less than 7,000. Even if this extrapolation is exaggerated, it is still clear that there are many undiagnosed Celiacs out in the general population. Most DH patients are prescribed Dapsone, which treats the symptoms. In most cases, they are told of the gluten-free diet, but it is not stressed and so most DH patients do not follow the diet. Dr. Murray finds this most distressing, because even if these patients dont have GI-related symptoms, there is still continual damage being done to the small intestine. Dermatologists, in general, dont give enough consideration to a GI problem as the source of DH. This places DH patients at an even greater risk of developing lymphoma in the small intestine. Lymphoma in the small intestine is extremely rare in the general population. Untreated Celiacs have a 70 or 80 times greater chance of developing lymphoma. A lifetime of not following the gluten-free diet gives a Celiac about a 7% chance of developing lymphoma. There is also an increased risk of other GI-related and lymphatic cancers. The risk of developing lymphoma immediately begins to decrease when a Celiac patient starts following a gluten-free diet. The risk continues to decrease until, after 3-5 years, it approaches that of the general population. Dr. Murray makes a small intestine X-ray a routine part of the treatment for a newly diagnosed adult Celiac patient, especially those over 40 years of age. Hes looking for lymphoma in the small intestine. It is very difficult to find, but if it is found it can usually be successfully treated. DH is caused by reactions to antibody complexes that, for reasons not totally clear, become deposited under the skin. These DH breakouts can continue for a long time after a gluten-free diet is adopted, because these deposits are not reabsorbed by the body very quickly. In about 70% of the cases, dapsone treatments can be discontinued after 18 months-2 years; for the other 30% it takes longer. How gluten-free should the diet be? Dr. Murray believes that Celiacs should treat gluten the same way they treat rat poison. Celiacs should never eat food if it is known to contain gluten. Accidental ingestion of gluten should be avoided as much as possible. For a Celiac, it is unacceptable for gluten to be ingested more than once a month, accidentally or otherwise. You can NOT judge whether a food has gluten by your reaction to it. Many Celiacs can ingest small amounts of gluten with no symptoms; however, the small intestine is still being damaged. Dr. Murray stressed that once you have Celiac disease, you will always have it; you will never be able to eat wheat or other gluten-containing products again. This is a fact of life that Celiacs simply must accept and live with. Lactose intolerance is not common in white Caucasian adults of northern European descent; probably close to 5%. (Editors note: According to Dr. Alexander, it occurs in about 30% of the adult US population.) A newly diagnosed Celiac may have temporary lactose-intolerance due to the damage in the gut; the intolerance should disappear once the gut heals. If you are lactose-intolerant, you should be aware that while ingesting lactose may make you uncomfortable, it does not damage the intestine. Most newly diagnosed Celiacs can use temporary lactose-intolerance as a way to check on the healing taking place. Once a month, they should drink half a glass of milk on an empty stomach and see if there is a reaction such as gas, cramps, diarrhea, etc. Failure to have a lactose reaction means that the gut is healing and the diet is working. For most people, lactose intolerance will disappear within six months of being on a gluten-free diet. Dr. Murray advises Celiac patients against smoking. Newly diagnosed Celiacs, as well as those not following a strict gluten-free diet, already have an increased risk of malignancy. Celiacs cannot afford to increase that risk even further by smoking. Refractory Sprue is a rare complication that generally occurs in older Celiac patients. This is a situation where malabsorption continues to occur even though the patient is on a gluten-free diet. Dr. Murray says the first three things you do when presented with refractory sprue are: Check the diet Check the diet again Check the diet a third time Once you have verified that no hidden sources of gluten are causing the problem, then you recheck the diagnosis, look for enzyme supplements to help with digestion, check for pancreatic problems, lymphoma bacterial overgrowth, etc. Diagnosis of CS in the US is probably lower than it should be due to rigid medical practices and old thinking. One common label applied to people with stomach complaints is Irritable Bowel Syndrome. Dr. Murray calls that an intellectual trash can if it is used too widely and if doctors forget about other possibilities, in that it is occasionally over-diagnosed. It really means, There is something wrong with your stomach, and we dont know what it is. The occurrence of stress-induced bowel dysfunction is a real entity. In the US, CS is an exception to the rule concerning research efforts. It is considered to be a marginal disease. There is very little commercial interest in it. CS is definitely under-represented when compared to other diseases that get far more attention. Dr. Murray believes there are too many different national organizations that deal with CS. He believes these organizations need to unify and become one in order to advance the national agenda. He thinks local support groups such as our TCCSSG are doing a lot of good work; he considers belonging to a support group to be an essential part of the treatment of Celiac disease. Dr. Murray recommends physicians associated with local support groups should read a book that thoroughly explains this disease. The book is Coeliac Disease, by Michael Marsh, Blackwell Scientific Publications, November 1992. It costs about $175, but is well worth the cost if it helps a physician become more interested and learn more about this disease.
  5. * Subscribe to the Gluten-Free Food & Drug SmartLists to have the latest mainstream gluten-free product & drug information. * Order Scott-Free newsletter today and get four new issues over the next year, plus free on-line back issues. o Celiac Disease Newsletter + Preview back issues of Scott-Free * The following new articles were added to the Celiac Disease Research: Associated Diseases and Disorders section: o Gluten-free Diet Prevents Diabetes (Type 1) at Same Rate as Gluten-enriched Diet o Increased Cancer Risk Associated with Delayed Diagnosis of Celiac Disease * The following new article was added to the Celiac Disease Diagnosis, Testing & Treatment section: o New Method of Diagnosing Celiac Disease Looks Promising * The following new articles were added to the all new Gluten-Free Food Reviews section: o Garbo Toast Bread: For Those About to Toast, Garbo Salutes You! o Marthas Tasty All Breast Meat Gluten-free Chicken Nuggets o Dr. Praegers Gluten Free Fish Sticks and Fish Fillets Hit the Spot o Dads Gluten-free Pizza Crust is sure to Please * The following new recipes have been added to the Gluten-Free Recipes section: o Lentil Soup (Gluten-Free) o Creamed Chipped Beef on Toast (Gluten-Free) o Sloppy Joes (Gluten-Free) o Magic Muffins - Universal Gluten-Free Muffin Mix * The Celiac Disease in the Media section always has up-to-date links to media articles regarding celiac disease and the gluten-free diet. * You are invited to use our sites free, and very popular Celiac Disease Message Board/Forum and Calendar.
  6. * Subscribe to the Gluten-Free Food & Drug SmartLists to have the latest mainstream gluten-free product & drug information. * Order Scott-Free newsletter today and get four new issues over the next year, plus free on-line back issues. o Celiac Disease Newsletter + Preview back issues of Scott-Free * The following new articles were added to the Celiac Disease Research: Associated Diseases and Disorders section: o Gluten-free Diet Prevents Diabetes (Type 1) at Same Rate as Gluten-enriched Diet o Increased Cancer Risk Associated with Delayed Diagnosis of Celiac Disease * The following new article was added to the Celiac Disease Diagnosis, Testing & Treatment section: o New Method of Diagnosing Celiac Disease Looks Promising * The following new articles were added to the all new Gluten-Free Food Reviews section: o Garbo Toast Bread: For Those About to Toast, Garbo Salutes You! o Marthas Tasty All Breast Meat Gluten-free Chicken Nuggets o Dr. Praegers Gluten Free Fish Sticks and Fish Fillets Hit the Spot o Dads Gluten-free Pizza Crust is sure to Please * The following new recipes have been added to the Gluten-Free Recipes section: o Lentil Soup (Gluten-Free) o Creamed Chipped Beef on Toast (Gluten-Free) o Sloppy Joes (Gluten-Free) o Magic Muffins - Universal Gluten-Free Muffin Mix * The Celiac Disease in the Media section always has up-to-date links to media articles regarding celiac disease and the gluten-free diet. * You are invited to use our sites free, and very popular Celiac Disease Message Board/Forum and Calendar.
  7. * Subscribe to the Gluten-Free Food & Drug SmartLists to have the latest mainstream gluten-free product & drug information. * Order Scott-Free newsletter today and get four new issues over the next year, plus free on-line back issues. o Celiac Disease Newsletter + Preview back issues of Scott-Free * The following new articles were added to the Celiac Disease Research: Associated Diseases and Disorders section: o Gluten-free Diet Prevents Diabetes (Type 1) at Same Rate as Gluten-enriched Diet o Increased Cancer Risk Associated with Delayed Diagnosis of Celiac Disease * The following new article was added to the Celiac Disease Diagnosis, Testing & Treatment section: o New Method of Diagnosing Celiac Disease Looks Promising * The following new articles were added to the all new Gluten-Free Food Reviews section: o Garbo Toast Bread: For Those About to Toast, Garbo Salutes You! o Marthas Tasty All Breast Meat Gluten-free Chicken Nuggets o Dr. Praegers Gluten Free Fish Sticks and Fish Fillets Hit the Spot o Dads Gluten-free Pizza Crust is sure to Please * The following new recipes have been added to the Gluten-Free Recipes section: o Lentil Soup (Gluten-Free) o Creamed Chipped Beef on Toast (Gluten-Free) o Sloppy Joes (Gluten-Free) o Magic Muffins - Universal Gluten-Free Muffin Mix * The Celiac Disease in the Media section always has up-to-date links to media articles regarding celiac disease and the gluten-free diet. * You are invited to use our sites free, and very popular Celiac Disease Message Board/Forum and Calendar.
  8. * Subscribe to the Gluten-Free Food & Drug SmartLists to have the latest mainstream gluten-free product & drug information. * Order Scott-Free newsletter today and get four new issues over the next year, plus free on-line back issues. o Celiac Disease Newsletter + Preview back issues of Scott-Free * The following new articles were added to the Celiac Disease Research: Associated Diseases and Disorders section: o Gluten-free Diet Prevents Diabetes (Type 1) at Same Rate as Gluten-enriched Diet o Increased Cancer Risk Associated with Delayed Diagnosis of Celiac Disease * The following new article was added to the Celiac Disease Diagnosis, Testing & Treatment section: o New Method of Diagnosing Celiac Disease Looks Promising * The following new articles were added to the all new Gluten-Free Food Reviews section: o Garbo Toast Bread: For Those About to Toast, Garbo Salutes You! o Marthas Tasty All Breast Meat Gluten-free Chicken Nuggets o Dr. Praegers Gluten Free Fish Sticks and Fish Fillets Hit the Spot o Dads Gluten-free Pizza Crust is sure to Please * The following new recipes have been added to the Gluten-Free Recipes section: o Lentil Soup (Gluten-Free) o Creamed Chipped Beef on Toast (Gluten-Free) o Sloppy Joes (Gluten-Free) o Magic Muffins - Universal Gluten-Free Muffin Mix * The Celiac Disease in the Media section always has up-to-date links to media articles regarding celiac disease and the gluten-free diet. * You are invited to use our sites free, and very popular Celiac Disease Message Board/Forum and Calendar.
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