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

This group is so great - while I have no definitive solution yet, I
at least have options I am pursuing thanks to all of you who
responded so graciously.  The most pertinent information I received
was to contact:

Michelle Melin-Rogovin
Program Director
University of Chicago Celiac Disease Program
5839 S. Maryland Avenue, MC4065, Room C-491
Chicago, IL. 60637
Celiac Disease Information Line: 773-702-7593

Also was the suggestion to contact Dr. Guandalini "the leading
pediatric celiac specialist at the University of Chicago and may be a
good source for leads to other doctors.  His number is 773-702-3051."

My thanks to the person who's husband is an ophthalmologist - and to
those who had no info for me, but were sending good wishes and
prayers for the situation.

I replied privately to the "curious" response before I realized that
the question was addressed to the list.  I feel his question requires
a public response as well so I am adding my private response here:

____________

<very large sigh>

did you know there was a woman in england who died upon exposure to
spaghetti sauce?  Late in life she developed an allergy to raw
tomatoes.  She opened a jar of spaghetti sauce ... and died.

I don't claim to understand my reaction.  I know it exists.  I also
react similarly to msg.  I have gone into anaphylaxis upon exposure
to gluten.  I was hospitalized for over 2 weeks because they couldn't
stabalize my condition - I kept going back into shock.  Took massive
dosages of prednisone over a long period of time to get me back to
health.  (Which I sometimes wonder isn't responsible for some of my
other bizarre health problems.)

I hope you would read my email carefully.  I do not claim my reaction
is a celiac reaction. Might be ... might not.  I do know of others on
this list who have reacted similarly.  Not many.  But some. I know I
DO have celiac and almost died from it - 85 pound weight loss in 6
months - loss of neurological functioning in my hands and feet -
spontaneous blood vessel breaking - came as close to dying as I care
to come - and went into complete remission (and recovery) after going
gluten free.

My reaction is to gluten.  Celiac?  Allergy?  I dunno.  Doesn't
really matter.  What matters is I avoid gluten like the plague - cuz
it can kill me.  Every time I have reacted, we have been able to
trace the culprit back to either gluten or msg.  I even have an
"early warning system."  There are three spots on my tongue that
start to swell - and I grab the benedryl.  (Walgreen's version as
they verify gf.)  If I don't - my tongue and throat start to swell
and I head to the ER.

So, when faced with something you cannot explain, do you simply deny
its existence?  The docs say it's impossible.  And?  At one point we
were assured the world was flat.  I am an outlier on a regression
chart.  But I do exist.  My response happens.  Period.  Perhaps
rather than explaining why the reaction is not possible, the doc
might choose to explain why it does happen to me.

As far my own doc's explanation - the doc I was seeing at U of C told
me there were rare examples of anaphylaxis to gluten in the
literature - he tied it to celiac - I didn't. My impression was that
he went on to mayo clinic after leaving U of C.  I might be wrong on
that.

[Added clarification:  The doctor who validated that my anaphylaxis
and convulsive responses could be attributed to my celiac disease was
Dr. Michael Sitrin, formerly of the U. of C.  He was a speaker at the
CSA 26th annual convention.  His topic was "The Changing Spectrum of
CD."  He is currently Chairman of the Division of Gastroenterology at
the University of Buffalo's medical school]

The reason I asked for no emails is simple.  I always hear that my
reaction is impossible ... the experts say  - blah, blah, blah ...
While I am sure the responses are good intentioned - they don't help
me any.  It's incredibly ironic to be looking for help and then be
told "Oh - that can't happen ..."  I've lived with this for 10 years
now.  I used to try and educate people on the list - and like I said,
I have been contacted by others who have similar responses.  So, I
know I am not the only one.

I do know that living this way is scary as hell.

Thanks for you input,
.
___________________________________

deni weber
Valparaiso, IN, USA

(who is extraordinarily thankful for this list)


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