<<Disclaimer: Verify this information before applying it to your situation.>>
 
Ron Hoggan suggested that mother-diagnosis of celiac disease would
not get much support from doctors.  Well, yes, and no.  It depends on
the doctor, and it depends on the mother (or father).  My son became
ill while we were with a horrible HMO, and they refused to test him
for celiac disease -- I suspect because they'd already blown their
budget for him on tests for parasites and so forth, in addition to
not having time to practice good medicine and read journals, as this
HMO was designed to insure bad practice even by good doctors.  By the
time we got off that plan and onto a choice plan, we had gone on the
gluten-free diet and seen the dramatic results.  I word-processed my obser-
vations, printed them out, and quizzed everyone I knew about the
available pediatricians.  The telling question -- how does Doctor X
deal with well-informed patients?  Luckily we were in a university
town and doctors had to learn how to deal with the over-educated in
order to build a practice.  And I also found a wonderful practice which
had as one of its cardinal principles to trust the mother.
 
I've learned (partly from this list as well as from experience)
to speak in terms and tones of extreme moderation, and to leave a set of
printouts from this list and from my diary behind for the doctor to look
over.  When we moved this year, I went through the same search mission,
which also involves finding a doctor for myself and then following (in this
case) her recommendations.  At the end of my first meeting with my son's
new doctor, she said nothing, and I was concerned, so I asked, well, what
do you think of the celiac scenario?  And she said to me, It makes perfect
sense; and to my son she said, "Your mother has a lot of common sense."
So not only did this doctor NOT dismiss me as a kook or take my son's
illness with a grain of salt, she actively supported me and gave a clear
signal of this to my son.  What a gift!  And she, like the other doctors,
agreed that there is no point in putting a child through a biopsy or
blood tests if the diet is working -- that the diet is as good an indi-
cator as any currently available.
 
So yes, there are doctors who by infrastructure of their practice, or
laziness in not keeping up with journals, or by not having common sense,
or for all the hosts of reasons that motivate human beings to do well or
poorly, are not going to support home diagnosis.  On the other hand, there
are doctors who listen well, who trust parents to do the best for their
kids, and who know that only a madwoman would CHOOSE to be the mother
and cook for a celiac household, or take on extra hours of work and
delay completing a dissertation in order to qualify for insurance with
choice.
 
So, hang in there, everyone.  Our happy, not ending, but current state,
touch wood, is a healthy child, a great doctor, and a finished disserta-
tion.  And though I didn't have the classic symptoms (perhaps as a child
but that's a dim and distant memory), I feel much better on this diet and
am thankful first and foremost that my son's illness is so easily remedied,
and that it also gave me a new lease on life.  I'd still give my eyeteeth
not to have to cook for a week or so, but then, I have celiac teeth so
that's not saying much!
 
Happy holidays,
 
Elizabeth
Elizabeth Frierson
Visiting Scholar
Cornell University
Department of History
450 McGraw Hall
Ithaca, NY  14853