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Fri, 30 Jun 2006 11:42:16 -0400 |
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<<Disclaimer: Verify this information before applying it to your situation.>>
Although there are now many support groups available for people with
Celiac Disease there is little available for those with refractory
sprue/celiac. Many of the support groups reflect the concerns of the
majority of their members and are very appropriate for their
membership, but are not geared toward those with refractory celiac or
what can be EATCL (Enteropathy Associated T Cell Lymphoma). Even at a
major Boston Medical Center they view the population as too small to
think of forming a group.
Many of the people who have this may have been diagnosed later in their
life, as unfortunately diagnosis was not available when they were
young. Thus they may have had inflammation for many years. People may
have tried very hard to be as careful as possible and then they found
that a medication they were taking was not gluten free.
Please let us know if there is any support group now in existance.
Is there is anyone that would be interested in interacting as
individuals via e-mail.
lf you live anywhere in or arround Massachusetts would you be
interested in meeting in person or talking on the phone?
Included would be anyone with refractory sprue or a person who is
living with or is providing some form of support or close friendship
with a person with refractory sprue or EATCL with the person's
permission.
Thanks in advance for your response.
Hal and Irma
* Please remember some posters may be WHEAT-FREE, but not GLUTEN-FREE *
Archives are at: Http://Listserv.icors.org/SCRIPTS/WA-ICORS.EXE?LIST=CELIAC
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