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From:
Lisa S Lewis <[log in to unmask]>
Date:
Thu, 6 Apr 1995 09:40:36 EDT
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<<Disclaimer:  Verify this information before applying it to your situation.>>

Don Wiss yesterday posted an exchange from the autism list about gluten and
casein free diets.

He said, in part:

>There are many sources available on gluten. We celiacs have to treat it
>like poison and are therefore experts on it. For those of you that do not
>know what we're talking about, if your autistic child is gluten and casein
>free he will be so recovered that you can send him to school without
>telling them he's autistic. (As for the special diet you can tell them he's
>a celiac.)

I am a member of a small group of parents and professionals who have spent a
great deal of time researching this area.  My son has autism and is extremely
gluten sensitive. I have written an 18 page paper on my experience with a GF/
CF diet, located at http://rdz.stjohns.edu/lists/celiac/aut/autintro.html
for those who have Netscape or Mosaic or other world wide web access. (The
formatting isn't perfect...still working on that, but it's readable.)  If you
don't have access but would like to see this, email me privately.  Or search
the archives of celiac because I posted most of it some months ago.

While I personally feel this is an extremely important and promising area of
research, I feel it necessary to say:

1) While many autistic children's behavior and health improve on a CF and GF
diet, it is NOT the experience that MOST of them improve enough to pass for
non-autistic. It's just not true.

2) In all likelihood, autism is a disorder with multiple etiologies.  It
thus is unlikely that ALL autistics would derive vast benefit from any one
treatment.  Unfortunately, so far, even very promising treatments have led to
"recovery" for only a small number of individuals.

3) Parents of autistics are EXTREMELY vulnerable to snake oil salesmen, and
many have spent enormous sums of money chasing after that magic bullet. Alas,
it's not been found.  This includes dietary intervention.  It has helped
MANY children, but that is not the same as saying "if you keep your child on
a strict enough gf/cf diet he will be cured."

4)  The whole autism field is filled with people who passionately believe in
different theories of autism and its treatment.  There is no established cure.
The gluten/casein work is unfortunately not considered mainstream, and anyone
espousing it can expect to be vigorously challenged.  Gluten/Casein may
certainly be PART of the answer, but it is certainly not the WHOLE answer....I
wish it was! I also wish that more parents would try this, because it is far
less dangerous than most drugs being prescribed to children, and it can't
hurt them!

Lisa Lewis

P.S. Something that most parents (of normal OR Celiac children) don't realize,
is that EXTREME pickiness is an almost universal characteristic of autism.
(I'm lucky that this is not true for my child.) Many kids simply do not eat
more than two or three foods (usually gluten filled at that!)  Why this is
true is not known for sure...autistics have a great deal of sensory confusion
(the brain isn't interpreting incoming stimuli properly) and thus some have
exquisitely oversensitive senses of smell or touch (tactile defensiveness).
This is undoubtedly part of the reason.  In any event, it makes changing the
diet of these kids FAR more challenging than for another type of child.

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