Main Points and Available Internet Resources

Copyright by Michael Jones, Bill Elkus, Jim Lyles, and Lisa Lewis 1995, 1996, 1997 - All rights reserved worldwide.

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Table of Contents

Introduction:

 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,
because:

 (a)  Maintaining a gluten-free diet is extremely difficult to implement,
even with cooperative children.  Wheat and other sources of gluten are hidden
in many foods, and it is impossible to remove all of it without careful
instructions,

 (b)  Many parents report that even small amounts of gluten or casein are
sufficient to remove the majority of the benefits, and in some cases several
weeks or months are necessary until clear benefits are seen, and

 (c)  Both of the major screening tests for Celiac Disease, a very serious
form of gluten intolerance, will no longer be accurate once your child has
started a gluten free diet.

Internet Resources Available to Parents and Researchers

 Two separate bodies of materials are available on the internet to assist
parents in this area.  There is a general discussion group on autism at
AUTISM@MAELSTROM.STJOHNS.EDU.  To subscribe, send an email to
LISTSERV@MAELSTROM.STJOHNS.EDU with the body SUB AUTISM YOURFIRSTNAME
YOURLASTNAME.  Unfortunately, the topic of gluten and casein intolerance is
not often discussed.  However, this is a good forum to report your own
experiences, in that it will generate interest with other parents and
researchers.
 
 There is a second resource of about 725 Celiacs (as of 9/1/95) which
contains many crucial materials.  Celiac Disease is due to a pathological
inability to completely digest gluten.  Although many researchers suspect it
is related to autism, it is clear that most Celiacs are not autistic, and
most autistics do not have full-blown Celiac Disease.  Nevertheless, the
steps which every Celiac must go through each day -- keeping gluten out of
the diet -- are the same steps which many parents of autistic children go
through.  Therefore, many of the subscribers to the Celiac discussion group
are not Celiacs, but parents of autistic children.

 To subscribe to the Celiac discussion group, send an email to
LISTSERV@MAELSTROM.STJOHNS.EDU with the body SUB CELIAC YOURFIRSTNAME
YOURLASTNAME.  There is no cost to you, unless your internet provider charges
you for the additional time on-line.  Once you have subscribed, there are 
three sets of files which are highly recommended.  To get these, send an 
email to LISTSERV@MAELSTROM.STJOHNS.EDU with the body (on separate lines):

GET NEWCEL PACKAGE
GET CELIAC FAQ
GET CEL-AUT PACKAGE

The first two sets of files will teach you the basics of maintaining a
gluten-free diet and finding a local Celiac support group.  The third 
set of files is a compilation of writings specifically on gluten and casein
intolerance in autism autism, with many references and comments by other 
parents on their experiences.  Also included is an electronic version of 
Lisa Lewis' excellent summary of the field.  There are over 100 pages 
in total!

For those of you who do not have internet access, ARI has secured the
permission of the listowners of the Celiac discussion group to print out
these packages and sell them for the cost of photocopying and handling.  To
get them, send $12.00 to ARI {Autism Research Institute, 4182 Adams Avenue,
San Diego CA 92116, phone (619) 281-7165} and ask for "Celiac/Autism Package".
Please note that although the internet allows these materials to be 
continuously updated, ARI will only print them out semiannually.


Stephen Edelson, Ph.D.
Director, Center for the Study of Autism
9725 SW Beaverton-Hillsdale Hwy, Suite 230
Beaverton, OR 97005
Phone:  503-643-4121 
Fax:  503-692-3104
Email: edelson@pacifier.com
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Disclaimer

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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