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

Dearest List mates:

Within minutes of posting my e-mail last Friday I began receiving letters
from others who've had similar difficulties getting diagnosed, and the
horrors they've suffered along the way.  I never expected this big of a
response ... I'm STILL getting e-mails.  I'm stunned by the amount of pain
and suffering spoken of in these e-mails, and angry as hell at a system
which would allow these atrocities to occur in the first place.  I'm still
sorting through the mail, and will answer everyone personally as soon as
possible.

My e-mail box got a little clogged last night and Earthlink sent me a
message that I'd run out of space (I forgot to erase my incoming stuff -
sorry).  So if you received a message stating your e-mail was undeliverable,
please try again and it will get to me.

To those of you who took the time to write words of encouragement and care -
THANK YOU, thank you, thank you!  I found it heartening that in all the
letter's I received, there was only one put down.  This group is a God send,
and it's members are (and always have been) wonderful.  I know I've said
this before, but as it bears repeating I'll say it again.  Had I NOT had
this group as a resource these past five years, I'd most likely be dead by
now.  At the very least I'd be much MUCH sicker than I am today.

I spent a good deal of time crying while reading some of the things other
list members have been forced to and continue to endure.  More than ever, I
now realize how important it is that the plight of those of us suffering
Celiac disease (and various other related disorders) be made public.  To
that end I will definitely be putting together an information packet (along
with my bio, and the bio's of others wishing them included) and sending it
out to as many public officials, news services, TV stations, and medical
organizations as I can afford.

I've also decided to put together a video on Celiac disease, and will
interview anyone in the area who wishes to speak on tape.  Anyone who has a
Digital 8 camcorder (mini cam) can feel free to send me tapes of their own.
(e-mail me for my system's specific requirement)  I can pull your tape onto
my system and edit it into the master tape I'll be creating.  My editing
system allows me to mask the faces and/or voices of anyone who should wish
to remain anonymous.  I'll then transfer these interviews onto DVD's (I have
the equipment to burn as many copies as I need) and send them out along with
each information packet.

I have two friends in broadcasting who I'll be contacting to see if I'll be
able to catch some public access air time.  If I manage to get use of a
local studio I'll contact anyone on my list who lives locally and desires to
be interviewed on tape along with me.  Otherwise I'll simply put together
the tape myself as described above.  Anyone wishing to contact me directly
need only write and I'll send you my mailing address and other info.  Those
of you who wrote stating they'll be contacting their congress person
personally, thank you.  If enough of us are heard, I really believe we can
make a difference.

Lastly, as to my error in mathematics, sorry about that, my head was
elsewhere.  I got the quote of 26 million Americans being non or
misdiagnosed from an other source and unfortunately listed it out of
context.

Love and Care,
Jeanne Barkemeijer de Wit

*Support summarization of posts, reply to the SENDER not the Celiac List*