<<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