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Many parents around the world have been experimenting with gluten and/or
casein free diets for their children with autism and the vast majority
have claimed benefits which are often substantial. Practical experience
and theoretical considerations both suggest that the earlier the
offending products are removed from the diet the better. Our group
continues to be coy about promulgating information on this topic until
the evidenceof effectiveness is conclusive. Also, I would hate to be
sued. In spite of this, we are contacted on a daily basis by parents for
advice on this matter.

We have learned to insist (OK strongly recommend) that parents discuss
their plans with their GP and, where appropriate, a nutritionalist of
dietician to ensure adequate replacement of cereal and dairy produce.
Diagnosis of autism does not usually occur until the child is at least 2
years old and more likely 4. It is unusual, therefore, for us to be
contacted by a parent whose child is only 20 months old. She had heard
about dietary intervention and wnted to give it a go. We warned her that
this is not a game and to be prepared for "withdrawal symptoms". The boy
had existed largely on "Weetabix" and milk and this was withdrawn from
his diet. The results were, by all accounts dramatic. Normally we
experience anxiety and clinginess and a few tears but this boy was
absolutely distraught and cried and screemed almost solidly for a couple
of days.

At this point, the mother decided to give him back his Weetabix. The
results were disastrous in that the screeming was hugely intensified and
the child arched his back and generally went berserk. At this point he
was hospitalised for a couple of days and is now back at home (eating his
Weetabix).

Naturally, we were alarmed at this tale and there are a number of
plausible explanations ranging from pure coincidence to the fact that the
child was very young and so did not have any of the biologically active,
gluten derived, peptides stored in his tissue. Thus removal of the gluten
led to a "Cold Turkey" type response which would not be seen in older
children or adolescents.

We are unaware of any other experiences with children as young as this
but wondered if others on the list would like to comment. I appreciate
that although there are links between coeliac and autistic conditions
they are not the same. It may be, however, that others may have comments.

In the meantime, we have decided that when dealing with very young
children, we will suggest that the gluten be withdrawn in two stages
about a week apart.

I would welcome any comment on this.

Paul Shattock