<<Disclaimer: Verify this information before applying it to your situation.>>
 
Celiac friends,
 
Here's a request for information--experiental and otherwise--from adult
celiacs who:
 
1) remember or have been told that they: had celiac/were
gluten-intolerant/couldn't eat wheat, as a small child;
 
2) were told that they <grew out of it> or recall tolerating gluten at some
point ; and
 
3) have found out somehow as an adult that they must adopt a gluten-free
lifestyle.
 
As a promoter of research and education about CD, I am trying to prepare a
convincing packet of information aimed at persons who might believe that
they no longer have celiac disease, (some of whom have a variety of health
problems related to the immune system). I believe that two kinds of
information should be presented:
1) Your personal case histories (no matter how varied they are);
2) Any medical information about what happens internally to explain why a
celiac child seems to tolerate gluten, sometimes for decades.
 
Please write what you know about your experience as an adult who had gas
trointestinal symptoms as a small child, including what problems preceeded
your second discovery of gluten intolerance.  And if anyone would like to
contribute information from medical research, please do.
 
Participants: Please record your permission to share your story. Please
indicate how you would like your signature to be: whole name and town;
first name and town; gender and town; just name or town; initials and town;
or write an Ann Landers-type signature like <Feeling Perky in Pittsburgh>.
This is likely to be used as an educational handout, and excerpted by
celiac disease newsletters. One potential audience is those who control NIH
and CDC research funding. (I will share our collective knowledge with the
list, either in a post or as an archival file.)
 
Thank you,
Mary Courtney
[log in to unmask]
(Credentials available on request; those capital letters look so stuffy on
me.)