<<Disclaimer: Verify this information before applying it to your situation.>>

Dear List:
Recently I posted a notice about the SRU at NYState Psychiatric
Institute and how they were 100% compliant with my son's gf diet.

It turns out to be somewhat less than 100%, and since the problem is not
unusual for those of us coping at once with gluten problems and mental
illness I feel it is important to update my last post.

In the desire to be healed my son began seeking to conform--not to
ruffle feathers, not to make outrageous demands.  So, despite the good
intentions of a dietician who ordered the proper foods, the kitchen
staff would send up the usual cereals.  In his desire to go along with
things (there is pretty heavy pressure to do that, even without mental
illness!) he began to order food outside of his diet, though he knows
that this is not good for him.

The real bummer is that his MD went along with him!  Because we are not
blood test certified celiacs, and because the first symptoms of the
toxicity were NOT gastric, the MD said, in effect, "Well, why not."  We
could see right away that he was ill (looking bloated, with subcutaneous
rashes) and we raised a fuss.  We felt it was an outrage that the
hospital should collude in what is a form of self-destructive behavior
(even the staff social worker could see that).

The nursing staff was all in favor of his staying gf, to the extent of
providing extra support for his, in effect, serving himself breakfast,
keeping a supply of cereal (which they have to keep in a pantry and
unlock for him every morning) and rice cakes, peanut butter and cans of
sardines for the days when the menu does not provide him with protein
and acceptable carbs.

The nursing staff is aware of the effect of gluten on brain chemistry.
The MD, in this case, was not.  The issue of autonomy is paramount in
the rehabilitation of anyone with any illness.  But negotiating
effective family support and working together on staying healthy is an
immensely tricky business, especially when it entails tackling the
conformity-bound approach of so much of the medical establishment.

Nancy in nyc