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this isn't like diabetes.  if you have gluten, chances are that, although
you'll feel uncomfortable you probably won't die. as well, if you were a
big bread and pastry fan prior to diagnosis, you would feel a much larger
degree of grief when told it's no longer an option.  i myself can take or
leave breads, but found out i had celiac by first being diagnosed as
lactose intolerant. *That* hurt. i went through the grief process then,
and when i was later able to tolerate small quantities of milk products i
figured i could handle the gluten issue with no problems.

in the same vein, my mother, who is also celiac, can get away with eating
some gluten, whereas i cannot. i don't begrudge her though, in fact i
feel i'm luckier, as i don't have the temptation to experiment.

with this disease, we are our only experts. we alone can determine what's
best for us. if some people are more strict and rigid in their approach
to gluten, all the power to them, providing they benefit. and really, who
doesn't benefit from knowledge???

i have never had a reaction to shampoo products with wheat germ or gluten
in them. i can pooh-pooh those who refuse to use the products all i want,
but in the end it boils down to, if they had a reaction and know this is
the culprit, then they shouldn't use it. that simple.

to be honest, my hat goes off to those who are so dedicated. i have
learned so much, had such an ease of transition into the gluten free
life, primarily because of those who've gone before and who've created
this mailing list, those web pages, called those companies, that i'm
extremely grateful. i'm not saying i haven't been caught, but that was
always due to my own lack of vigilance, never any misinformation i've
found on this list or any web page i've seen. my mother has been
diagnosed 10 years with celiac, and i have learned more about the
disease, the diet, the food products to avoid in the first six months of
diagnosis than she did in ten years, specifically because of this, and
she's a nurse.

which brings me to a question i would like to see some comments on. the
medical community, in my mind, is NOT really the place to go to discuss
the daily effects of this disease. they can diagnose you, and give you a
list of foods not to eat, but that's really where their role ends, good
or bad.

my mother was diagnosed by a doctor who was actually quite savvy in
celiac, but yet as mentioned earlier, i learned more with a computer in
six months than she did in ten years *and* being a member of the medical
community. i don't think this is an unfair observation. naturally people
who have the disease will have a much more vested interst in it than the
people who diagnose the illness. and while i'm sure this is changing, as
we as celiacs become more vocal expressing our opinions etc, there still
is in my mind a schism, and a rather large one between being TOLD what
you have and being TOLD HOW TO LIVE with what you have.

many communities have celiac support groups, but many still do not. and i
think many doctors would hesitate referring celiac patients to support
groups run by lay people with the disease if there isn't a medical
professional on the board as well. how do we bring all our knowledge
gleaned back to the medical community, to help those who are being
diagnosed now, and in the future?

what do you think? i welcome any comments, criticisms, etc.

elizabeth powell