<<Disclaimer: Verify this information before applying it to your situation.>>

Ok.  This is mostly to the people who have written to me and told me that my
anaphalaxis is *not* a celiac response.  Please read the following and go to
the website if you need confirmation.  I sent this privately to one list
mate, but as I am being deluged with emails telling me that my information
is incorrect I submit the following.

I quote:

Gluten intolerance in the celiac patient is described as a pseudoallergic
response. The pseudoallergic or anaphlyactoid reaction is different from
an immune-mediated syndrome which may require repeated exposure to produce
an effect. In the pseudoallergic or anaphylactic reaction, the reaction
may occur as a result of a single exposure. Acute reactions to the
causative substance are produced by direct release of mediators from mast
cells and basophills resulting in the classic end-organ effects that these
mediators exert. Direct mediator release can then occur without evidence
of a prior sensitization period. This nonimmune reaction is immediate,
often severe, and is therefore referred to as anaphylactoid. Because it is
nonimmunological, it may occur the first time that a person is exposed to
the respective agent. These reactions are of further interest and concern
because they can be elicited by very small and minute doses of the
offending substances.

http://csaceliacs.org/pharmaceuticals.html

I have references to anaphylaxis in books on my shelf as well.  The
information *is* out there.

As far as my doctor's level of expertise, I have had some people question
his knowledge regarding celiac.  Perhaps you are aware that there is a
celiac clinic for children at the University of Chicago. This man is working
with adults.  He is a professor of gastorenterology and the director of
clinical nutrition research at the University of Chicago.  His clinical
interests are clinical nutrition and malabsorbtion symdromes.  He graduated
from Harvard Medical  medical school.  The U of C clinic's diagnositic
paperwork form has celiac sprue as one of the diagnostic options.  He did
not have to put my diagnosis under "other."  Testing for celiac is one of
their standard blood tests.   From the get-go, he knew more about celiac
that any other doctor I have seen. I am, at this point, satisfied with him.
I can ask him for his citation references when I see him again as he has
reassured me that shock reactions (while admittedly rare) are documented in
the literature.  I did not ask for sources.  I see I now need to do so.

As far as the tetany response which has also been challenged.   (By the way,
I am amazed at the hostility I have evoked in some people.) I don't have
concrete answers.  I do know that  somehow gluten ingestion triggers this
response in me.  MSG does the same thing.  All this doctor has done so far
is *name* the type of muscle reaction I have.  As we are just at the
beginning of my work with him, we do not have answers as to how or why this
happens in response.  Yes, mineral depletion is involved - but somehow the
gluten ingestion triggers that response.

I am not mixing apples and oranges.  I am simply stating my reactions to
gluten.  I have 100% of the time been able to locate the gluten involved.
It has never happened without gluten or in the case of tetany - MSG.  I no
longer have the "typical response."  I obviously react differently that
99.9% of the celiacs out there.  Do not close the door on the possibility
that this is connected with celiac.   If one were to statistically plot
people's reactions to celiac, I would definitely be an outlier.   The fact
that I do not fit the accepted paradigm may mean that we need a paradigm
shift to accomodate new information.  It can happen.  Just ask Ptolemy.
Please, please, please, no more emails telling me I don't know that of which
I speak.  Old saying in 12-step programs - take what you need and leave the
rest.  That's good advise.

deni weber

Valparaiso, IN  USA

It is seldom wise to leave a live dragon out of your calculations if you
happen to live near one . . .

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