<<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.>>
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List Information Files
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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.
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B. Celiac Disease Information Files
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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.
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C. AUTISM Related Files
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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.
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D. NEWSLETTERS
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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]
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E. RECIPES
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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.
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F. POSTINGS FROM THE EXPERTS
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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.
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G. TEMPORARY HOLDING FILES
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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.
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H. Special Internet Related Files
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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.
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I. Conference and Report Files
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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.
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