Basic Information About Celiac Disease

From this Table of Contents, additional summary information is available on the reference files. These file descriptions contain a link to the file for reading online. Additionally, most references can be downloaded and printed on your word processor.

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Initial Celiac Disease Information Files

Celiac Disease Reference Files

Product Information

Articles from Gluten Free Living Magazine

Reprinted with the permission of Gluten-Free Living. This newsletter for celiacs is published bimonthly.

Celiac Disease Research Studies

Postings from Experts to the Celiac List

Calendar of Events and Conferences Report Files

Celiac Newsletters

Summaries of Posts

These files are summaries that were made to the List. Because of their applicability to others, they are collected here for convience.

Basic Information about Autism and the Gluten Free Diet

Celiac List Information Files

Information Files

Language Cards

Some celiac find that it is easy to use a restaurant card as a starting place to start the discussion about the GF diet to the restaruant staff. There is not card that can cover every situation. The national support groups often have cards available. When one is prepared by a listmember, it will be added to this section.

The following links are provided for your general information. The information provided via these sites has not been formally evaluated and inclusion of these links does not constitute an endorsement of any organization. Nor is disapproval implied of sites not mentioned. The links provided are maintained by their respective organizations and they are solely responsible for their content and policies.)

Feedback to the Listowners.

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| Interactive searches of previous posts through the St. Johns interface. |

Initial Celiac Disease Information Files

Frequently Asked Questions (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. Download

Celiac Disease Summary:
This is a condensed general overview of Celiac Disease (CD) and the gluten-free (GF) diet.Download

Familial Incidence of Celiac Disease:
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.Download

The Widening Spectrum of Celiac Disease:
Dr. Joseph Murray is 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.Download

The May 1995 meeting of the Celiac Disease Foundation:
Dr. Alessio Fasano 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. Download

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. Download

Diagnostics Tests for Celiac:
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. Download

"Predictive Value of Serology Testing in Celiac Disease":
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.Download

Should I obtain an official diagnosis?:
Should I obtain an official diagnosis is a hard question to answer. The following discussion should give everyone some background information.

First and foremost: 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. Download

AFD Handout:
This excellent handout prepared by one of our medical members is available from the American Academy of Family Physicians.

Gluten Free Diet:
Food ingredients and their applicability to the GF diet. This is a link to a paper from the North American Society for Pediatric, Gastrolongy, Hepatology, and Nutrition (NASPGAN).

Celiac Cookbooks:
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.Download

Grain Toxicity:
A collection of posts to give 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:Download

What is the Maximum allowable amount of gluten?:
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 Professional 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. Download

Return to the Table of Contents or Initial Celiac Disease Information Files Index

Celiac Disease Reference Files

Questions and answers on HLA typing and Celiac Disease:
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 E-Mail 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. Download

Related Diseases:
Contact information for national medical organizations supporting the major diseases often associated with celiac disease due to their possible genetic link. This is not an Internet contact list, but information on how to obtain Internet resources is provided.Download

Celiac Issues:
Selected E-Mail from subscribers are complied into a single document on selected subjects for ease of obtaining the postings and understanding an issue. These subjects were covered:

    1. Alcohol (extracts) - Includes postings through June 5, 1995
    2. Millet - Includes postings through June 7, 1995
    3. Vinegar - Includes postings through Nov 2001

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? Download

Osteoporosis and Osteomalacia in Patients with Celiac Disease:
Elizabeth Shane, M.D., Endocrinologist Metabolic Bone Disease Program Columbia-Presbyterian Medical Center, New York City to the Greater NY Celiac Support Group on October 9th, 1996. This is the summary by Sue Goldstein.Download

This extremely 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"

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.

Trends From Tampere:
The "Seventh International Symposium on Coeliac Disease was held last September in Tampere, Finland. In the September 1996 issue of The Sprue-nik Press, gave you an "eye-witness" account of the symposium, as dictated by Dr. Joseph Murray, transcribed and edited by Ann Whelan (publisher of Gluten-Free Living), and then "published" on the CELIAC Listserve on the Internet.

At the symposium, abstracts of all the various studies and reports were handed out in a thick publication entitled simply, "Free Paper Abstracts". This document was edited by Drs. Pekka Collin and Markku Maki, internationally well-known celiac experts. Each of these half-page abstracts describe briefly the study's background, objective, results, and conclusions. Bill Elkus (one of the CELIAC Listserve administrators) gave me a copy of these abstracts, and I've been plowing through them every since.

This article is my attempt to summarize and in some cases interpret some of the more important information (as I judged it) covered in these abstracts. The reader should be aware that I do not have a medical background, so my attempts to summarize may result in oversimplification. Also, my interpretations could be just plain wrong (and I'll try to make it clear when I'm interpreting instead of just summarizing). Rest assured that this article was reviewed by our advisors (Dr. Alexander and Dorothy Vaughan), just as our newsletters are. In addition, Dr. Murray also reviewed this article.

GF Communion Host.:
Depending on your religious preference, there are difference policies regarding the host and the adverse impact that a wheat containing host would have on a celiac's health. These posts from the Celiac List will give you some examples of how others handle this situation.

Celiac Support Groups and Local Contacts:
GROUPSXX 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 countries. 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:

GROUPSAU, Australia
GROUPSUS, United States
GROUPSIN, International, less the above countries

The US groups are additionally broken down by state listings in the form GRPUS-SS, with "SS" being the standard postal 2-letter state abbreviation. To obtain all of the US groups, you can request them as a package:

To request a copy of all US groups to your ID, E-mail the request to St Johns LISTSERV(R).

Several celiacs have been kind enough to prepare reference files of local towns:

An Informal Guide to Celiac Living in New York City:
This informal guide to restaurants and stores for celiacs living in New York City is just that - informal. No attempt has been made at uniformity of style, and all entries reflect the different experiences.

Firing the Staff of Life
Celiac Disease Means Strict Avoidance of Gluten Submitted by: Carol Parrish Nutrition Support Specialist, Nutrition Support Specialist, Division of Gastroenterology/Dept Nutrition Services, University of Virginia Health Sciences Center, Charlottesville, VA Download

Celiac Disease and Peripheral Neuropathy
as presented by Dr. Norman Latov to the Westchester Support group and presented in their March 2002.

Dr. Latov is conducting research work on celiac disease in his laboratory in collaboration with Dr. Green and Research Fellow, Armin Alaedini. They are hoping to make significant advances in the study of neurological manifestations of celiac disease.

Return to the Table of Contents or Celiac Disease Reference Files Index
The Psychological Impact of Celiac Disease
by Kit Kellison.

Through some intriguing recent studies, we are learning there exist some worrisome common emotional experiences among celiac patients that will impact their quality of life.

When I queried the ICOR Celiac listserv about how people there coped with celiac disease, I got reflections of many of my own experiences in navigating the illness before and after diagnosis.

From the answers sent and the research I've done on the topic, I've found that there are three major types of challenges with which a celiac patient must contend.

Continue Reading


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Product Information

Sources for GF Products:
This is a collection of companies, by countries, who market products that carry the GF label. Some companies have Internet addresses while others will ship outside of their country.Download

A list of gluten free / casein free milk substitutes edited by Don Wiss from postings to the Celiac List.

How to obtain product information.:
Many of the national support groups have prepared GF product information. How to obtain these lists and URLs for several Internet reference sites is provided.

Return to the Table of Contents or Product Information Index

Articles from Gluten Free Living Magazine

ADA Publishes Revised GF Diet Guidelines from GLUTEN FREE LIVING Magazine:
The American Dietetic Association (ADA) has published an updated and revised edition (6th) of the "Manual of Clinical Dietetics" that offers an international perspective on the dietary treatment of many diseases. The chapter on celiac disease, written by a team of dietitians, includes diet guidelines that are consistent with international standards. Therefore the chapter's list of safe foods includes buckwheat, quinoa, millet, amaranth, teff, distilled vinegar and distilled alcoholic beverages such as rum, gin, whiskey, and vodka. Download

Buckwheat article from GLUTEN FREE LIVING Magazine:
Confusion about buckwheat has existed for quite some time within the celiac community. Information from the National Buckwheat Institute says, "Itís hard to imagine that of any fruit known to exist on earth, buckwheat would be the only known exception to the rule that fruit is gluten free." Download

Dextrin article from GLUTEN FREE LIVING Magazine:
There was a previous message to the listserv indicating that Gluten-Free Living said dextrin was safe. Apparently the poster came to this conclusion after reading on that, "According to a Sept/Oct 2001 article titled "Know the Facts," probably all dextrins made in the USA are gluten free." Download

Diabetes and Celiac Disease article from GLUTEN FREE LIVING Magazine:
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. Download

What do we want on a food label from GLUTEN FREE LIVING Magazine:
This article was written after a day-long labeling workshop at the FDA on Aug 13 that I attended with several other celiacs. We were able to give short testimony about our interest in food labeling. Excerpts from that testimony are included at the end of the article. Download

Mono and diglycerides from GLUTEN FREE LIVING Magazine:
Simply put, mono- and diglycerides are fats. They are made from oil,usually soybean, cottonseed, sunflower, or palm oil, act as emulsifiers (provide a consistent texture and prevent separation), and are used in most baked products to keep them from getting stale. In ice cream and other processed foods, including margarine, instant potatoes, and chewing gum, they serve as stabilizers, which give foods body and improve consistency . Download

Osteoporosis article from GLUTEN FREE LIVING Magazine:
Risks are at higher for gluten sensitive individuals 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.Download

Vinegar article from GLUTEN FREE LIVING Magazine:
Confusion about vinegar has existed for quite some time within the celiac community. Grain-based vinegar has been a controversial celiac issue in the United States, but not in other countries. Some US national support groups say it is safe; others say it is not safe. Rank-and-file celiacs are left in the middle, trying to figure out what to do to stay healthy. Download

Digestive Diseases Intragency Coordinating Committee

On March 10th, more than 20 members of the celiac community and CD specialists attended a meeting of the Digestive Diseases Intragency 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.

Return to the Table of Contents or Articles from Gluten Free Living Magazine Index

Celiac Disease Research Studies

CD Prevalence Study for the USA:
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 due to a series of serological screening studies.

This memo explains how you can help.

Searching for the Celiac Disease Gene:
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.

Return to the Table of Contents or Celiac Disease Research Studies Index

Postings from Experts to the Celiac List

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 read new information.

This is a series of quarterly files composed of interesting postings to the List by our experts.

1994 1994,
1995 part 1, part 2, part 3, part 4
1996 part 1, part 2, part 3, part 4
1997 part 1, part 2, part 3, part 4
1998 part 1, part 2, part 3, part 4
1999 part 1, part 2, part 3, part 4
2000 part 1, part 2, part 3, part 4
2001 part 1, part 2, part 3, part 4

Collective Posts by Individual Expert:
This is the individual posts sorted by expert:.

This file in the future will contains updates to recent postings from 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.

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.

1994, 1995

Return to the Table of Contents or Postings from Experts to the Celiac List

Calendar of Events and Conferences Report Files

Calendar of Scheduled National Support Groups Events:
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.

Summary Reports from Celiac Conferences.
Each file is a summary of proceeding at some of the recent major celiac conferences. Files are grouped by year.

A summary of the proceeding at the International Coeliac Symposium, Tampere, Finland on day 1.

A summary of the proceeding at the International Coeliac Symposium, Tampere, Finland on day 2.

A summary of the proceeding at the International Coeliac Symposium, Tampere, Finland on day 3.

A summary of the proceeding at the the 1996 CSA/USA conference in Houston, TX on day 1.

A summary of the proceeding at the the 1996 CSA/USA conference in Houston, TX on day 2.

A summary of the proceeding at the the 1996 CSA/USA conference in Houston, TX on day 3.

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".

How to manage the special nutritional 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.

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.

Return to the Table of Contents or Calendar of Events and Conferences Report Files Index

Celiac List Information Files

Listserve(R) Commands:
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.

It is also possible for current subscribers to make subscription changes through a a simple form

The Welcome Message:
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.

Email Group Netiquette:
These tips can make participation easier and more enjoyable, while attempting to keep the information that gets on the mailing list pertinent to the group as a whole, therefore not cluttering up mailboxes and wasting precious time of the participants of these lists.
Vendor Monthly Announcements:
The Listowners allow self promotion announcements on the first of each months regarding GF products within an established set of guidelines.

Return to the Table of Contents or Celiac List Information Files Index

Celiac Newsletters

_The Sprue-nik Press_:
An online versions of some of their older newsletters is available. This is excellent way of obtaining an understanding of Celiac Disease, Dermatitis Herpetiformis, and the Gluten-Free diet and the benefits of being a member of a local support group. Information that is applicable only to local members has been removed from these editions.

The Sprue-Nik Press
Tri-County Celiac Sprue Support Group
34638 Beechwood St
Farmington, MI 48335

Article Index for back issues of The Sprue-nik Press (includes previous recipes)
--- Feb
To request a copy of a newsletter in TEXT format to your ID, E-mail the request to St Johns LISTSERV(R).

Where XXYY is replaced with the appropiate year and month from the above table.

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Summaries of Posts

Backpacking, Biking, Briefcase & Travel Foods:
This is the May 1997 update of highly portable and durable travel foods. It includes more entries, more information on taste and fat content, more resource phone numbers, and a new section on nutrition bars (which are not the same as energy bars). If you saved an earlier version, you can replace it with this update.

Informal Survey from Fellow DH Patients:
This is a collection of results submitted to James Doubravsky after he requested input from fellow subscribers with DH.

Summary on thoughts when hospitalized:
There have been a lot of posts over the past several months about eating GF when you are hospitalized. One person cited a positive experience. But, many have had a difficult time getting GF food in the hospital. I have had (not right now but in the past) experience working in hospital human resource management and thought I would pass along my experience with how a hospital kitchen can be managed. Understanding this may help folks when they are in the hospital.

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Information Files

Internet Chat Discussions on Celiac Disease:
For those that desire interactive discussion about CD, there are several Internet locations. They are not associated with the Celiac List and these addresses are provided for information only with no assumptions made about the content of the discussions.

Searching the Internet
Search engines are an easy way to find information on the Internet. Here are a few of the most popular.

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Language Cards

Nancy Jackson requested help from Quebec celiacs in writing a French restaurant card. Two listmembers, Jacques and Caroline, were extremely helpful. The attached text, which may contain a few errors from her tinkering but served well on a recent visit to Montreal.

When work sent Meredith Johnson to Hong Kong, she had an old college roommate (who happened to be from Taiwan) write up a chinese restaurant card.

It explains that we can't eat wheat, etc, and specifically mentions soy sauce, wheat noodles, MSG, and fried foods. It also says (I think) that I have GF soy sauce with me that they can use to cook my food with. She's not so good at translating, so I can't say exactly what it says, but she understands my condition very well, since we lived and cooked together for 3 years.

She must have put something scary in there, because whenever people read it, they tended to be quite conservative in what people tried to feed me. 8 days later, and no reaction, I trust it. I think it saved my life - or at least my sanity. I had my coworkers read it, and they picked places to eat that would work and during my weekend on my own, I was able to walk into a restaurant, hand over the card, and eat what they put in front of me. Looking back, it may be a blessing that I didn't have to know what I was eating half the time

Submitted by one of our members to the List.

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Copyright 1995 - 2001 by Michael Jones, Bill Elkus, Jim Lyles, and Lisa Lewis - All rights reserved worldwide.

Permission is granted to copy this document, at no charge and in its entirety, provided that the copies are not used for commercial advantage, that the source is cited and that the present copyright notice is included in all copies, so that the recipients of such copies are equally bound to abide by the present conditions. Prior written permission is required for any commercial use of this document, in whole or in part, and for any partial reproduction of the contents of this document exceeding 50 lines of up to 80 characters, or equivalent. The title page, table of contents and index, if any, are not considered to be part of the document for the purposes of this copyright notice, and can be freely removed if present.

The purpose of this copyright is to protect your right to make free copies of this paper for your friends and colleagues, to prevent publishers from using it for commercial advantage, and to prevent ill-meaning people from altering the meaning of the document by changing or removing a few paragraphs.

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This fact sheet has been designed to be a general information resource. However, it is not intended for use in diagnosis, treatment, or any other medical application. Questions should be directed to your personal physician. This information is not warranted and no liability is assumed by the author or any group for the recommendations, information, dietary suggestions, menus, and recipes promulgated. Based upon accepted practices in supplying the source documents, this fact sheet is accurate and complete. Products mentioned or omitted do not constitute endorsement.

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