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Subject:
From:
Will Estes <[log in to unmask]>
Date:
Wed, 30 Aug 1995 21:49:55 -0700
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<<Disclaimer:  Verify this information before applying it to your situation.>>

> As for the hospital dieticians being aware of celiac disease...
> it's probably hit and miss.  Some do, some don't.  Following my

I have had nothing but negative encounters with hospital dieticians
regarding this issue.  My father has wheat sensitivities, and a few
years ago he had a near-death spontaneous bleeding episode.  To make a
long story short, he had some sort of problem with one of his
blood factors, and his blood wasn't clotting.  He was at Stanford, and
they had specialists from all over the world working on his case: no
one ever really figured out which blood factor was responsible,
although they suspect it was somehow related to factor 13.  There is
conflicting evidence.

He has never been tested specifically for celiac disease, but given
the problems that celiacs have with absorption of oil based vitamins,
like vitamin k, it wouldn't surprise me if that might have been at the
root of this.  Vitamin k is tied to metabolism of many, if not all, of
the clotting factors.  When he later started taking vitamin k every day,
the spontaneous bleeding episodes disappeared.  Go figure.

In any case, I repeatedly told the hospital dieticians that he had a
problem with wheat.  Their response was always condescending and
dismissive: "Wheat is far too important a dietary ingredient to remove
from the diet."  The bottom line was that unless I had a doctor sign
to the effect that wheat was going to create a medical condition for
him, they could not have cared less about the family's empiric
observations of wheat's effect on him.

This brings up an interesting point regarding the need for a biopsy.
One really good reason to have the biopsy is so that you can get a
diagnosis of a real "disease" that requires you to avoid wheat put
in your medical records.  Please realize that without such a
diagnosis, you too may one day find yourself on your back in a hospital,
recovering from surgery, unable to speak, with some idiots shoving wheat
down your throat, against your family's wishes, because they took a few
nutrition courses and decided that they now know your dietary tolerances
better than you do.

--
Will Estes                              U.S. Computer
Internet: [log in to unmask]                POB 3150
                                        Saratoga, CA  95070
                                        FAX: 408-446-1013

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