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

Thank you to everyone who kindly responded to my call for help with my
extreme sensitivity.  I received almost 70 emails and appreciate the
treasure trove of information and ideas.

The great majority of people thought it sounded like I've become
sensitive or allergic to some other foods like milk, eggs etc.  Since
I eat these things on a regular basis without problems and have also
been tested by Enterolabs for milk and eggs, allergy isn't likely but
probably bears some closer scrutiny.

I received emails from many people who were as sensitive or more
sensitive to gluten than I am.  Several people have anaphlactic type
reactions and definitely do not have a gluten allergy.  One person had
stroke like symptoms and one person had nerve damage after getting
gluten.  One woman wrote and told me about her teenage son who
continues with severe symptoms despite being ultra careful about
gluten.  Like me, he gets the shakes, stomach and headache and
overwhelming fatigue.  Several people said, like me, they get sick
when they eat from other peoples' dishes and pretty much eat nowhere
but home.

Many people wrote and said that "gluten free" frequently isn't really
gluten free.  Some people can't tolerate any gluten over zero parts
per million and some people cite cross-contamination and lack of care
and testing problems.  Sensitive people have to figure out what works
for them.  Some people can't use Bob's Red Mill products and a few
can't use Amy's.  Some people just avoid grains altogether.

Most people advised not to do the gluten challenge; only one person
didn't rule it out.  At least two people said that the biopsy
procedure was dangerous and gives mixed results.

Many people talked about positive results gained from visiting
neuropaths; most of these people were non-U.S. people. One Canadian
told me that it can take 8 months to get an appointment with a
gastroenterologist in Canada.

I learned that wine can be a problem for very sensitive people because
the oak barrels that wine is aged in are sealed with wheat paste!

Several products were mentioned:  Pepto Bismol before meals, veratrum
(a homeopathic herb), bentonite (which is a form of clay) and
peppermint oil time-released pills.  The grain teff was mentioned as
the grain which tastes most like wheat.  I bought some and made lime
squares with it tonight and it is very tasty.  Many people touted the
benefits of probiotics--some said to buy the refrigerated type and one
person said non-refrigerated.

Some people said to consider some other possible problems: bacterial
overgrowth, fructose malabsorption, low vitamin D, panic disorder.
One person advised me to have a hair test for mercury poisoning.

Several websites were mentioned.  Two of them:
http://www.glutenzap.com/forum/index.php
(the above site good to hear from other sensitive people)
www.glutensyndrome.net

I'm so glad to hear from everyone and to know I'm not alone in my
extreme sensitivity.  Thanks again for everyone's help!!

Rosemary

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