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Recently I wrote to the autism list that I had started a gluten-free,
casein free diet, and I wanted to hear other people's experiences.
Rather, I got letters wanting to know more about my experience with
the diet. The following is my answer to one of those letters, and I
hope answers some other queries people had at the same time.
I've taken the unusual step of posting it to two mailing lists, with
apologies to the list owners. I hope it helps others who are
struggling with these difficult issues.
 
Dan wrote:
 
> I've been thinking about putting my son, who is 16 and autistic, on
> the cf/gf diet.  What problems did you have, and what has changed?
> Also, what has not?
 
Hi Dan -
I wrote on the autism list that I am autistic. That was possibly a little
misleading, because I don't know whether that is a good definition of
my condition. It is very difficult looking at yourself and
understanding what is going on. Nevertheless, many of the problems I
have had all my life look like either a form of autism, or Attention
Deficit disorder, or something similar. From my point of view, life
has been a constant struggle because I couldn't connect at all to
people, I couldn't make myself understood, words and facial
expressions just didn't come out right, I was spaced out and
hallucinating for days or weeks. I had several serious
paranoic episodes, I had terror at night, even when I was 35.
I could not concentrate on anything for more than a few seconds,
I failed at everything I tried, even though I really wanted to do it,
and had the intelligence and ability to do it.
Physically, I have been seriously underweight, my muscles didn't
develop, I was pale and lifeless, I ate constantly, but never put on
weight, I also had this strange skin condition that they call DH -
patches of bubbly skin on the elbows, behind the knees, on the
back, that itched.
 
I find it hard to recommend this diet, because it is so difficult - I
am struggling to keep up with it, and almost impossible to get any
support or advice except the advice to stop it (because I've lost
even more weight). What people don't see, apart from the person I
live with who knows me best, is how much better I feel in all ways.
Now, that may be the diet, there may be other factors, I just don't
know until someone takes me seriously and tries to find out what is
going on. The sad fact is, no-one has ever taken my problems
seriously, so I don't expect to find anyone to take me need for advice
seriously.
 
The bottom line is, I feel better, more 'present', more able to
concentrate, my eyes are stronger and don't dart off all over the
place, my nerves are stronger - I feel more and my muscles respond
more, I have more confidence in my ability to do things, I talk to
people in a normal, reasonable way without feeling like an idiot, I
can talk to people over the phone (that terrified me before). I can
stand up straight without having to lean on something! I don't have
to concentrate on putting one foot in front of the other! I don't get
the feeling that my nerves are being stretched out, or that I'm
hanging on a metal wire, I don't wake up screeming in the night,
terrified that I'm about to die, I don't pace up and down all night
because I'm terrified to go to bed knowing that I'm going to get a
terror attack some time in the night. I haven't had that ONCE since
going gluten-free - that's three months ago. I had it about 3 times
a week before. I no longer feel like parts of my body are paralysed, I
can move every finger and toe independently!!! There is much, much
more to tell, if only those things could be put into words.
 
And still people are telling me this diet is a waste of time, that it
isn't necessary, that there was nothing wrong with me anyway, that it
is not medically proved etc. etc.
 
I need support now, more than anything else. I know there are lots of
you out there who support me and I'm thankful to you all. ANY advice
would be a blessing, ANY support is a blessing. I would even travel
to America or Norway or anywhere else to talk to just one person who
would support me in what I'm doing.
 
Meanwhile, if anyone has any questions, feel free to write to me. I
would like to hear of anyone else's experiences, and I would like to
start a mailing list for the gf-cf diet. I have a web site, and will
be building up an archive of relevant material.
 
Thanks for your patience, and forgive me for posting this widely.
I hope something comes of it.
 
Max Desorgher