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Hi all!

(Listowners please bear with me on this issue. It's not standard fare.)

Regarding Don Wiss' note regarding the lack of knowledge in the medical
community about celiac:

After having fought the managed care battle to no satisfying conclusion
coupled with ideas from Lynn Worden and Becky Markle, I have decided that
it is time to organize my thoughts.

Some basic assumptions:

Celiac/gluten intolerance is not a yes or no condition even though that
is the way medicine has currently defined it.  As Becky says, "it is a
spectrum"(she was describing autism at the time but same point). It
starts with mild intestinal damage and moves along the spectrum to full
blown celiac. The medical system really only deals with the full blown or
classic celiac(Lynn Worden).

Celiac,k autism, schizophrenia, dyslexia and attention deficit may all be
different forms of the same problem(see Reichelt's work & also Shattock
notes) although different parts of the Gliadin molecule may be
responsible for the different diseases.

The blood test doesn't work well for people with sub-clinical celiac(my
apologies to Dr. Fasano, et al. - they are doing fantastic work).

The blood test may not work at all with people who are also casein
intolerant as well as gluten intolerant(Becky Markle).

Blood tests and biopsies are expensive and the managed care system is
shutting that door(Don Wiss).

There is a wonderful American heritage with wheat as well as religious
significance in the Judeo-Christian tradition with bread being an
important part of religious ceremonies and holidays. "It is the single
largest staple in the world" as Dr. Grecco said in his article on Celiac
and History. This creates resistance even to the idea that there may be
something dangerous about wheat.

Assuming that one "buys into" the above and not all will, what is needed
is a reasonably inexpensive test that measures the spectrum of intestinal
damage from gluten sensitivity/intolerance/celiac. One may exist. Lynn
Worden([log in to unmask]) says that one does exist(a saliva test)
at Diagnos-Techs out of Seattle, Washington. I don't know enough to
endorse it but I have decided to take the saliva test. Since this has to
be ordered by a doctor, my father(who is a family practitioner in Ithaca,
NY) has agreed to evaluate it and order the test for me. When I receive
the results, I will post them to the list.

I don't want to drive a stampede into this lab, but I feel that it is
very important if there is the slightest possibility that it is accurate.
I have spoken to the research biochemist there myself and am satisfied
that he is knowledgeable, responsible and very helpful. The cost is about
$100. and it involves 5 ml of saliva(spit) which he says should travel
accross the country okay. The results apparently range from normal
damage of single digit titers to as high as 80 titers for a classic
celiac. The middle range are where the sub-clinical celiacs or silent
celiacs score.  Even after going gluten free, the levels remain elevated.
Lynn is confident about the quality of the lab and the research than went
into the test.

Lynn says:

I was told by the research biochemist who developed the test I took that
ALL people have problems with intestinal destruction from gluten. The
test he developed has no false positives and is very, very sensitive. He
says everyone has a titer. The issue is that people with celiac disease
have very high titers. For example, my teenage children had titers (I
can't remember the exact numbers) of 5 and 7 , whereas mine was 65. Mine
clearly merited a conclusion of gluten intolerance whereas theirs did
not.  I was told that if my titer had been 16 or 17 or higher, there
would have been concern. Untreated celiacs have even higher titers, even
as high as in the 80's.

Back to Alec:

This sounds like an ad I'm sure but my intention is to highlight this
test as a possibility to deal with subclinical celiacs and the cost
issue. I also think it needs the scrutiny of the researchers as a
sounding board to give the rest of us a yes, no or maybe on the test.

My own personal belief(bias?) is that gluten may be a bigger problem that
even the most radical believe. There exists the possibility that gluten
may be fueling an increase in violence and feelings of ill health
worldwide. If there is that possibility, it must be checked out!

If I have not been precise in my quotes, please excuse me. If I have not
quoted someone entirely accurately, I apologize but I don't think it will
change my basic point.

Thank you for listening and I'll step off my soap box now.

Alec <[log in to unmask]>