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One of the other members of the listserv and I were talking about which
specialist would be best to diagnose Celiac disease-related orthopedic
problems.  We were frustrated with the seeming lack of knowledge (about
Celiac disease) of the health care profession.  Here were some of my thoughts:

"I have found that most health care professionals do NOT know about Celiac
disease or understand its results.  If you translate for them and say,
"gluten intolerance", they assume that it is a very mild thing like lactose
intolerance.  They don't realize that with lactose intolerance, the lactase
enzyme is merely missing--all other nutrients are absorbed because the villi
are NOT destroyed.  With Celiac disease, NO nutrients are completely absorbed
in the proper amount because the villi are gone and villi are necessary for
the digestion of ALL nutrients.  This makes celiac disease life-threatening
(for toddlers at least) unlike lactose intolerance, which merely causes
vomiting and diarrhea (as far as I know).  Also, celiac disease (unlike
lactose intolerance) has an autoimmune component (which is why I believe my
husband's leg nerves were damaged).  Nurses and doctors don't know about this
either.

Just yesterday, my husband was in a doctor's office regarding recurrent
nausea and gagging.  When the nurse asked me if he had any conditions that I
thought the doctor should know about that might be related to his symptoms, I
told her that he was gluten intolerant, to which she replied, "That's
probably not important."

It's probably not important?!?  Her ignorance frustrated me a lot, because
I'm getting the feeling that most doctors and nurses share it.  I wish there
was something we could do to educate the health care professionals about how
serious Celiac disease is and that it is VERY different from the mild lactose
intolerance.  I am a second year medical student, so I'm certainly not trying
to put doctors down.  I'm just frustrated with their lack of understanding of
Celiac disease.  It seems like I'm the one constantly explaining the disease
to the doctors that I bring my husband to.  It would be nice to feel like the
doctors knew MORE about it than I did.

I guess the message is that whenever we go to physicians, we should make sure
to explain Celiac disease to them well.  Don't assume or trust that they will
know about it or understand it's many manifestations. . . .

I'd enjoy hearing your comments.  Especially if you have had GOOD experiences
with doctors/nurses who really did understand the seriousness and wide
ramifications of celiac disease.

Holly