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

Listmates,

Joel Elias requested concise, authoratative, information that could be used
by his celiac sprue support group in educating medical professionals about
the prevalence and diagnosis of celiac disease....  he also requested that it
preferrably be in print!

Well...... I can't help him with the 'in print' part of his request,  but I
would encourage everyone and every  Celiac Sprue Support Group to purchase
the video of the Greater Louisville Celiac Sprue Support Group Workshop that
was held on Sept. 18, 1999.

Info about obtaining the video was posted a few days ago.  Cost is $10.00.
Check should be made out to GLCSSG,  PO Box 7194,  Louisville, KY 40257-0194
and memoed VIDEO.  Part of the proceeds will be given to the UMCRC.

Drs. Fasano and Horvath from  the University of Maryland  Celiac Research
Center were the featured speakers.

Local speakers were Dr. Adler, gastroenterologist, and Dr. Volk, pediatric
gastroenterologist, as well as fellow celiac, Ann Whelan, publisher and
editor of Gluten Free Living.

Not only would you have fine, up to date information for members of your
group,  it would be good to plan a special meeting/meetings with targeted
professionals as your guests.  At the present time I don't think you will
find better information available from any other source.

My husband, son, and I were lucky enough to attend this workshop and want to
go on record thanking all of those in the Louisville Support Group who had
any part whatsoever in making it happen and for doing the pr that made it
possible for people like us, from middle Tennessee, to attend.   For those of
you who have been following the incidence study,  you will be delighted to
hear that over 340 blood samples were added.  There was an outstanding
turnout.

The most important piece of information to me was to learn about the blood
test that has been devised  by 'our ' researchers in recent months.  IT HAS
98.85% SENSITIVITY WITH 100% SPECIFICITY FOR CELIAC SPRUE..... and they want
to make it better!  For those of you who have not been able to get conclusive
evidence that you ARE or  ARE NOT a celiac this is very good news indeed,  as
it is for our children and our grandchildren and the generations to come.

It is heartening to know that there are researchers in the US using their
skills and experience to help celiacs,  in spite of the lack of interest and
concern  and support on the part of NIH.   To learn more about The University
of Maryland Celiac Research Center. check out their website:
www.celiaccenter. org

Again,  I highly recommend the video from the Greater Louisville Celiac Sprue
Support Group.  Ours came yesterday.  We viewed it last night.  We already
have it on loan this morning. We will be ordering two more copies!

Again, thank you, thank you, thank you to all who made this workshop happen
and for sharing it by video.  You have given the celiac community a great
service.

Sincerely,

Dona Vickrey,  Murfreesboro, TN  (the Vickreys are still enjoying gf food
items from their "three bags full"!)