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I would like to confirm Russel's observations with regard to the UK
Coeliac Society.

Our department has for quite a few years been involved in basic
biological research into the metabolic problems which may underlie the
symptoms of autism. In particular, we have been studying the effects of
gluten and casein free diets on the symptoms. In a proportion of cases
there is undoubtedly a Coeliac type condition present and we have been
able to refer subjects back to the physicians who have failed to identify
this problem.

The UK Coeliac Society has consistently refused to provide us with
assistance or advice on dietary interventions/recipes or technical
information. I do not have Coeliac Disease and that is the reason why
information was refused me. One would have thought that a Research
Department in a University which is trying to assist people with the
disorder would be worthy of their support but apparently this is not the
case. We have not bothered with them for several years now.

In order to gain access to the cherished lists we had to find a person
with an official "label" of CD who would then pass the information to us.

It pains me to have to say this about an organisation which is supposed
to be helping sufferers from a serious disorder but their attitude
appears to me to be unique amongst such bodies. Most other organisations
strive to publicise their work and so increase awareness and concern.

I think most of us are aware that there are so many people with a
"grumbling and undiagnosed" coeliac type condition. The quality of many
lives would be greatly enhanced if there was an increased awareness of
this situation.

There may be very good reasons, apart from very old fashioned notions
that only professionally qualified people should have knowledge, but I
cannot see what they are. I would be willing to learn about the need for
secrecy though.

In the meantime, we will be continuing our studies whilst totally
ignoring the body which purports to represent the interests of CD sufferers.

Viva la Maelstrom                  Paul Shattock