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Mon, 21 Sep 1998 19:52:37 -0500
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<<Disclaimer: Verify this information before applying it to your situation.>>

>But according to the above reactions, I am no celiac because of the
>negative biopsy.

Kareem --

I had meant to address this later, after catching my breath ... but better
jump right in ...

When I was on this cruise in australia, I was seated next to a doctor
that has spent his whole life researching celiac. Apparently his
younger brother died at age 2, emaciated, and he's always been
plagued that perhaps it was celiac undiagnosed. Despite all his
interest, his sister was not diagnosed until 5 years ago at age
65  ... and his other sister and 2 daughters were diagnosed as well.

However, he explained that in Oz, doctors can diagnose someone
as having a gluten allergy w/out them having celiac sprue. Actually,
when I said celiac, he took one look at me and said "nope, can't
be, you haven't had any wasting!"  [this was towards the pudgy
well-fed part of the trip.]  He 'splained to me that if you have no
damaged villi  -- i.e., a negative biopsy -- you are given the diagnosis
of gluten allergy  ... and if you have damaged villi, then you are
diagnosed with sprue.

He found it quite absurd that in U.S., at least with the few doctors
I've chatted with  ... that there is no delineation between a gluten
allergy and sprue  ... In his years as a GP he found that those
w/out wasting and w/out villi damage suffered all the other symptoms --
fatigue, thinning hair, neurological problems, arthritis/bone pain, etc.
And that those with wasting and trashed villi did not typically have the
other symptoms  ...

On an even curioser note  ... I had my annual neurologist appointment
today ... and while he's been a bit skeptical of my gluten-free=seizure-free
claims  ... he was quite impressed with my exam. Said, almost
astonished, that my Babinski Reflex  -- that's what they test when they
scrape the bottom of your foot  -- had completely disappeared
after 12 years of worsening. He said that he had actually been
concerned that the reflex had really worsened, and that he seemed
simply shocked that it is GONE. [The test indicates if you have
neurological damage ... ]  Kewl!

yet another fine benefit, brought to you by the GF Fairy ...

Tracey in Connecticut   GF lodging:  http://www.innseekers.com/feature.htm

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