<<Disclaimer: Verify this information before applying it to your situation.>> Copyright by Michael Jones, Bill Elkus, Jim Lyles, and Lisa Lewis 1996, 1997 - All rights reserved worldwide The following descriptions expand upon the information found in the Celiac filelist. The filelist shows the names and a short description of files that can be requested from the LISTSERV(R). The filelist is useful in determining the last update and it is available by submitting the following command to: [log in to unmask] INDEX CELIAC To request any of these files, send these commands to the above LISTSERV(R) address: GET CELIAC FILENAME // EOJ Where FILENAME is the name after the section number in each paragraph below. For example to request the FAQ, you would send GET CELIAC FAQ // EOJ The second line is used to disable problems from mail programs that add a signature block. Please note that there is a space after the //. <<Disclaimer: Verify this information before applying it to your situation.>> ============================================ List Information Files ============================================ CMDS This file shows the common commands that are used to perform administrative actions. The commands show how to sign off, make other changes to your personal subscription, request files, or perform a database search. FAQ This is the Frequently Asked Questions (FAQ) for the Celiac List. These general questions and answers give an initial overview to the common questions asked by Celiacs, based upon previous discussions on the List. We ask that each new subscriber carefully read this entire file before sending in their first post to the List. The file is long, but it contains a considerable amount of celiac related information. o What is celiac disease? o What is dermatitis herpetiformis? What does it have to do with celiac disease? o What are the effects of celiac disease? o How is celiac disease diagnosed? o What are the symptoms of celiac disease? o What is the treatment for celiac disease? o What is gluten? What is gliadin? o Which grains are safe, which are not? o Is all this stuff certified to be safe? o This sounds like a complex diet. How do I get started? o What items on ingredients lists should I avoid? o What is available to help me cope with this new diet? o Where can I find a support group? o What are some good sources of gluten-free products? o What's the best bread machine for the celiac's use? o What cookbooks are available, and how do I get one? o I've been on a gluten-free diet and have still not improved. (Or, I was feeling well, but the symptoms are back.) What am I doing wrong? o I'm feeling better (or I never had obvious symptoms). How can I tell if I'm gluten-free? o After years of having diarrhea, now I'm constipated. Help! o How can I survive restaurants, parties, travel and entertaining? o Which alcoholic beverages are safe? o Is celiac disease ever mistaken for other diseases? o Are there other diseases related to celiac disease? o How can I get more information? FILEDESC This file, which is an expanded description of the contents of files available from the LISTSERV. SPEC-WEL This is the second file sent to all subscribers. It gives information on how to contact the Listowners with a question, instead of sending an administrative question to all List subscribers. The complete address for the Listowner is shown with a note to file this message for future reference. WELCOME This is the initial file sent to all subscribers. It is used as an introduction to the rules and procedures used on this List. Common commands and recommendations for obtaining the maximum value from the List are given. We also ask that every new subscriber carefully read this file. ============================================ B. Celiac Disease Information Files ============================================ BONES Gluten sensitive individuals are at higher risk for osteoporosis due to malabsorption of calcium. The longer the sensitivity is undetected or untreated, the higher the risk and the greater the damage. The sooner gluten sensitivity is diagnosed and treated with the gluten-free diet and other bone-preserving measures, the greater the opportunity to lessen the debilitating impact of osteoporosis. This important subject is presented in an article from Gluten-Free Living and is reprinted with the publisher's permission. CDF-FAS The is a summary of a May 1995 presentation to the Celiac Disease Foundation by Dr. Alessio Fasano. He is a noted Pediatric GI from the University of Baltimore. While the lecture covers many points, Dr. Fasano makes special emphasis on the many atypical symptoms of Celiac which are not generally known in America. CDSTUDY CD Prevalence Study for the USA is how Celiacs in the U.S. can 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 due to a series of serological screening studies. This memo explains how you can help. CEL-HLA This file is a summary of various posts made on the CELIAC List about genetics and celiac, and more specifically about HLA typing in Celiac Disease. It has been supplemented by private emails with various experts in this area of CD, and has been reviewed for technical accuracy by Drs. Ludvig Sollid and Karoly Horvath, two of the CEL-PRO experts. This file is formatted as a question and answer session. COOKBOOK This is a listing of cookbooks by author and ISBN numbers. Most recipes are designed for the GF diet. Also included are cookbooks for those with additional intolerances, such as lactose. For those on a GF diet, some modification of the recipe may be required to accommodate multiple diets. CUL-WHT This extremly interesting discussion discussion of cereal throughout history is by Luigi Greco, D.C.H., M.Sc.(MCH), M.D., Department of Pediatrics, University of Naples. The title is: FROM THE NEOLITHIC REVOLUTION TO THE GLUTEN INTOLERANCE: BENEFITS AND PROBLEMS ASSOCIATED TO THE CULTIVATION OF WHEAT. DIA-CD1 Celiac Disease is an autoimmune disease treated with diet alone. Type I diabetes, traditionally called Insulin Dependent Diabetes Mellitus, is an autoimmune disease treated not only with diet but also with injected insulin. There is a 10 percent probability that diabetics may also be a celiac. DIA-CD2 From the annual meeting of the American Diabetes Association in Boston (June 21-24 97). Dr. Marian Rewers, Univ. of Colorado, organized a 2 hour session incompletely titled "Celiac Disease: A Model for IDDM Etiology". It was attended by 160-240 and followed by a long list of questions and comments from the floor. Dr. Rewers directs the DAISY project that's looking for environmental influences in the development of both Type I diabetes (IDDM) and celiac disease. DIAG-TST This is a discussion of biopsies, serological and other noninvasive screening for Celiac Disease. Besides an explanation of the procedures used in testing for and monitoring CD, a series of questions and answers with several noted medical experts will give an understanding of the medical steps. EMERG CELIACS AND DISASTERS. Please take a few minutes to compile a list that would be helpful to you and your gluten-free diet if a natural disaster should take place in your area. Could you manage on a gluten-free diet if the only food available was at a Red Cross Shelter for a period of time? FDA-BALT This is a transcript of an address by Felicia Satchell, Consumer Safety Officer, F.D.A. July 15, 1995 - Celiac Disease Conference - University of Maryland School of Medicine, Baltimore, Maryland. This presentation gave an overview of the FDA's responsibility and its role in controlling labels and ingredients as revised by the recent revision to the labeling laws. Some information was provided on these changes and their effects as applicable to celiacs. GFDIET This file shows food ingredients and their applicability to the GF diet. This strict statement of a GF diet uses the American standard of zero tolerance. It is not a complete list of all ingredients, but the major items agreed to by most American Celiac experts. Label readers will find that many ingredients have nebulous meanings and that those ingredients must be routinely checked to determine what source material is used in the finished product. GRAINS This file gives an excellent understanding of grains and their effect upon celiacs or anyone following the Gluten-Free diet. It is composed of a series of postings on the selected subject. The document is composed of the following sections: 1. Grain Toxicity Based upon Taxonomy by Don Karsada 2. Someone thinks Spelt is Different from Wheat by Don Karsada (..and they are wrong!) 3. Oats discussion as collected by Bill Elkus 4. Oats and Celiac Children by J. Murray 5. Wild Rice by Don Karsada 6. Grains, Seeds, and Beans as compiled by Joanne Hameister GROUPSXX This is a series of files as shown by the XX in the name. The XX is replaced with the appropriate identifier. These files show celiac support groups by international groups. When available an Internet email address is shown for contacting someone in the group or a local city. Some groups identified may not hold formal meeting but they are willing to lend assistance to other celiacs or their family and friends. When traveling, these groups may be able to lend assistance on survival techniques in the local area. The breakout for the individual files in the series is: GROUPSCA Canada GROUPSFI Finland GROUPSIT Italy GROUPSUS United States GROUPSIN International, less the above groups INCIDENC This is a discussion of CD by DR. Joseph Murray of the University of Iowa. It is a wonderful handout that can be given to relatives or medical professionals as an introduction to the disease. ISSUES This is a collection of postings from the Celiac List on some general subjects that are frequently asked. The cuurent subjects are: A. Alcohol (extracts) - Includes postings through June 5, 1995 B. Millet - Includes postings through June 7, 1995 MEDCARE Peter Green, M.D., Gastroenterologist and Director of the GI Endoscopy Unit at Columbia-Presbyterian Medical Center, New York City, spoke to the Westchester Celiac Sprue Support Group on September 29th. His topic was "Initial Assessment and Follow-up Care of Celiac Patients." Dr. Green, who has a large Celiac patient base, presented an excellent review of what physician care an adult Celiac patient should receive. MFGXX This is a series of files as shown by the XX in the name. The XX is replaced with the appropriate identifier. These files give addresses and phone numbers for contacting manufactures of products in resolving nebulous ingredients on label or to determine the possibility of contamination through processing. The breakout for the individual files in the series is: MFGCA Canada, August 21, 1996 MFGUS-A United States, part a (A-I), MFGUS-B United States, part b (J-R), MFGUS-C United States, part c (S-Z), MILKALT This is a complied list of gluten free / casein free milk substitutes edited by Don Wiss from postings to the Celiac List. MXGLUTEN This is a discussion of the issue of the maximum tolerable daily level of gluten that can be eaten by a Celiac without damage. It was compiled from discussions on the Celiac Profeesional List and released by permission of each author. There is no generally agreed safe daily level of gluten, but reading this file gives an understanding of the many variables involved in dealing with this critical issue. OFF-DIAG Should I obtain an official diagnosis is a hard question to answer. The following discussion should give everyone some background information. First and formost: You cannot get a diagnosis of celiac disease if you have been on a gluten-free diet for a while. How long? It varies from person to person and depends just how much damage there is in the villi of the small intestine. For some people, even a few weeks on a gluten-free diet might be long enough to "mess up" the tests. To diagnose celiac disease you have to do a biopsy and find damaged villi; if your villi have already healed due to a gluten-free diet then no damage will be found. OSTEOPO Osteoporosis and other bone disorders are reviewed in a lecture by Dr Elizabeth Shane to Greater NY Celiac Support Group Columbia-Presbyterian Medical Center, October 9th, 1996. Summarized by Sue Goldstein. REL-DIS Contact information for national organizations supporting the major diseases often associated with celiac disease due to their possible genetic link is available in the file REL-DIS. This is not an Internet contact list, but information on how to obtain Internet resources is provided. SPECTRUM Dr. Joseph Murray, one of the leading US physicians in the diagnosis of celiac disease (CD) and dermatitis herpetiformis (DH), spoke at the October 96 meeting of Tri-County Celiac Sprue Support Group (TCCSSG), and gave a superb summary of the entire field, entitled "The Widening Spectrum of Celiac Disease". This file contains notes from his speech as written by Jim Lyles. SUMMARY This is a condensed general overview of Celiac Disease (CD) and the gluten-free (GF) diet. VENDORS This is a collection of companies by countries who market products that carry the GF label. Some companies has Internet addresses while others will ship outside of their country. ============================================ C. AUTISM Related Files ============================================ ARI There is a growing body of research that supports the experience of many parents that a gluten and casein free diet improves the behavior of their autistic children. It is critical that any parent considering this dietary intervention carefully read background materials BEFORE trying the diet. This file contains a basic overview, plus information on how to obtain selected references on the subject for those without Internet capabilities. AUTCELU, This is the current updates to the file AUTCELXX. It is designed for those who have the previous annual file and desire only recent additions. If you request the file (AUTCELXX), it is not needed as this information is included in that file. AUTCELXX This is a series of annual files of posts about gluten intolerance from the Autism List (another discussion group, also at St. John's. XX is used to denote the desired year. Currently only some posts from 1994 and 1995 have been included due to the lack of a editor for collecting these posts. AUTGFFAQ Frequently Asked Questions about Dietary Intervention for the Treatment of Autism. This is a summary of Karyn A. Seroussi son's dramatic change in Autism after a dietary intervention. Based on their questions, she prepared the document. AUTICTAT The file contains citations of interest culled from journal articles known to the listowners of the Celiac List on the issue of Autism and CD. AUTINTRO This is a wonderful overview of the benefits of a GF diet in Autism, by Lisa Lewis, PhD, including her personal experiences as a parent of an autistic child on a GF diet. AUTISMXX The file contains Celiac List Posts About Autism and is an annual collected with updates in the file (AUTISMU). AUTISMU This file contains updates to the file AUTISMXX that were posted recently to the List. It is designed for those who current have the previous editions of the annual recipe files (AUTISMXX) and desire to only download new information. HLA-WAR1 This file contains excerpt from a grant proposal written by Dr. Warren about autism and genetics, with an excellent introduction to genetics and autoimmune disorders in general. HLA-WAR2 This file contains a discussion on the Strong Association of the Third Hypervariable Region of HLA-DRb1 with Autism By Dr. Reed Warren. VITAM-B6 Dr. Bernard Rimland of the Autism Research Institute has been an outspoken proponent of high doses of B6 and recently wrote an editorial on this exact topic. ============================================ D. NEWSLETTERS ============================================ ACTLINE This is the current issue of The Celiac ActionLine newsletter from GIG of Florida. Previous editions (quarterly) are available in the files ACLNXXYY. Where XX is the year and YY is the month. Publisher: Mike Jones, [log in to unmask] SPRUENIK This is the current issue of The Sprue-nik Press from the TRI-Counties Celiac Support Group. Previous editions (nine per year) are available in the files SPNKXXYY. Where XX is the year and YY is the month. Editor: Jim Lyles, [log in to unmask] ============================================ E. RECIPES ============================================ BMSELECT Which bread machine is best for making breads with alternate flours is a good question. Jeff Golden asked this question in May 1997 and followed up with phone calls to the major producers of the machines. This document is a summary of his research. BREADM This is an initial set of bread machines recipes using alternate flours. Many of these recipes were never published on the List. BREADTIP These tips explain some of the common problems encountered when using an automatic bread machine. BREADMU This file contains updates to new bread recipes that were posted recently to the List. It is designed for those who current have the previous editions of the annual bread files (BREADMXX) and desire to only download new recipes. BREADMXX This is a series of annual files composed of bread machines recipes posted to the List. Where XX is replaced by the year. RECIPEU This file contains updates to new recipes that were posted recently to the List. It is designed for those who current have the previous editions of the annual recipe files (RECXX-YY) and desire to only download new recipes. RECXX-YY This is a series of annual files composed of general recipes (excluding bread machine recipies) posted to the List. Where XX is replaced by the year and YY is replaced by the quarter. ============================================ F. POSTINGS FROM THE EXPERTS ============================================ EXPERTU This file contains updates to the file EXPXX-Y of recent postings by our celiac experts to the List. It is designed for those who have the previous editions of the annual file (EXPXX-Y) and desire to only download new information. EXPXX-Y This is a series of annual files composed of interesting postings to the List by our experts. Where XX is replaced by the year and Y is replaced by the quarter. REICHU This file contains updates to the file EXPXX-Y of recent postings Dr. Kalle Reichelt to the List. It is designed for those who have the previous editions of the annual file (REICHXX) and desire to only download new information. REICHXX This is a series of annual files composed of interesting postings to the List by Dr Kalle Reichelt. Where XX is replaced by the year. Dr. Reichelt has been researching the impact of gluten intolerance on certain individuals with developmental delays. ============================================ G. TEMPORARY HOLDING FILES ============================================ DIG-XXX Anyone experiencing communication problems and a failure to obtain List messages may request one of these files to obtain all of the messages posted by day of the week. XXX is replaced by: MON, TUE, WED, THUR, FRI, SAT, SUN. These files are updated weekly. TMPFILEX These are a collection of long files that are available for several months to support a posting to the List. It provides supporting details to the summary that was presented in a message to all subscribers. The X is replaced for the desired file (1-9). Since these files routinely change, information on their content can be obtained from posts to the List or from the short description in the output of the command INDEX CELIAC sent to the LISTSERV. TMPX These are a collection of long files that are available for several months to support a posting to the List by Don Wiss based upon information that is found on other Internet sites. It provides supporting details to the summary that was presented in a message to all subscribers. The X is replaced for the desired file (1-9) Since these files routinely change, information on their content can be obtained from posts to the List or from the short description in the output of the command INDEX CELIAC sent to the LISTSERV. ============================================ H. Special Internet Related Files ============================================ NETIQUET This is a light hearted look at equiette and procedures for avoiding conflict when sending email on the Interent. HISTXX This is an annual collection of messages posted by the Listowners to inform everyone of changes or problems with Celiac List operations. XX denotes the annual edition of the file reflecting when messages were posted. Messages from 1994 were combined in the 1995 edition. LISTHIST This is a collection of the notices posted in remembrance of the November 3rd anniversary of this List. It tracks major events that has taken place during the previous year regarding improvements and changes. ============================================ I. Conference and Report Files ============================================ CALENDAR This file shows a details and dates on national celiac meetings that have been passed along to the Listowners. Previous meetings are retained to show possible information on future meetings. Events are grouped by countries. These files are summaries of proceeding at some of the recent major celiac conferences. Files are grouped by year. CONF96-1 A summary of the proceceeding at the International Coeliac Symposium, Tampere, Finland on day 1. CONF96-2 A summary of the proceceeding at the International Coeliac Symposium, Tampere, Finland on day 2. CONF96-3 A summary of the proceceeding at the International Coeliac Symposium, Tampere, Finland on day 3. CONF96-4 A summary of the proceceeding at the the 1996 CSA/USA conference in Houston, TX on day 1. CONF96-5 A summary of the proceceeding at the the 1996 CSA/USA conference in Houston, TX on day 2. CONF96-6 A summary of the proceceeding at the the 1996 CSA/USA conference in Houston, TX on day 3. CONF9608 Celiac Disease is not normally diagnosed on the basis of clinical presentation alone. Also, there is considerable risk of misdiagnosis. While clinical presentation may help in identifying the possibility of celiac disease. It can not, reasonably, be the sole criteria for an accurate diagnosis. To support this statement, Dr. Vijay Kumar presented background information on serology at the Mt. Sinai Medical Centre, on 9 Nov. 1996: "Predictive Value of Serology Testing in Celiac Disease". CONF9609 How to manage the special nutrutional concerns of the celiac once you have diagnosed your patient with celiac disease. Presented by Nancy P Falini, M.A.,R.D. at Mystery Golden Keyon November 9th, 1996. CONF9610 Diagnosing and treating the adult celiac as presented by Joseph Murray, M.D., Assistant Professor of Medicine, Division of Gastroenterology University of Iowa at Mystery Golden Keyon November 9th, 1996.