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Does anyone on the list have experience with nursing homes, and GF
compliance with someone who likely has CD?

I say "likely" because blood tests have been positive, but this
person is too ill to have a biopsy done.  He is currently on a GF
diet, based on his personal feelings about having CD and his blood
tests.

Some family members and I are worried, because his doctors appear to
be in total denial that he may have CD, because the blood tests are
not 100% definitive.  I am assuming this attitude is because he does
not have the so-called "classic" symptoms of CD, that is, chronic
diarrhea or weight loss -- but he has many other potential symptoms,
most of them neurological.  Because he is so ill, it is difficult to
determine if being on a GF diet is helping him -- but, right now, his
personal attitude is better safe than sorry, given his blood tests
and a lifetime of CD symptoms.

While he can request of his family to keep him on a GF diet at home,
we are concerned that this may not be the case if/when he must go
into a nursing facility, without the support of his physicians or a
definitive diagnosis of CD.  Transference to a nursing facility could
happen sometime in the next few months to a year.

Thanks for any help folks can give in helping us prepare for this
eventuality.  Our fear, obviously, is if he goes off of his GF diet
upon entering a nursing home, he will go downhill very fast.  I won't
go into it in detail here, but there are a huge number reasons to be
very confident that he has CD, no matter what his doctors believe.
It seems their collective opinion is that eating GF is only making
his last years of life more miserable.

-Suzanne

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