<<Disclaimer: Verify this information before applying it to your situation.>>
 
Over the last several months I've been updating the files which contain
lists of support groups.  I've sent out many messages to people asking
if they are part of a support group and if they could act as an online
contact for the group.  (If you are interested in being an online
contact for your group, send a private e-mail to: [log in to unmask]).
 
I have often gotten back replies such as the following:
 
> I am not affiliated with any of the support groups in <name of state>.
> The listserv information has been so good that haven't felt the need
> to attend any local meetings.
 
(I'm intentionally NOT identifying the person who wrote this message; I
want it to serve only as an example.  I've gotten several notes just
like it from others.)
 
While it is always gratifying to hear such good news about the CELIAC
e-mail list, I must confess that it also disturbs me too.  If you live
in a remote area where there are no nearby support groups then you
don't have much of a choice; otherwise I'd encourage you become part of
a local group.
 
I am an active member in a local support group, and I wouldn't dream of
giving it up.  I am the editor of the group's newsletter, and in the
last few years have served as group president.  For the last two years
my wife and I jointly produced a GF shopping guide for the group, and
served as reviewers for this year's effort.  Also, I rarely miss a
group meeting and serve on the group's executive board.  As you can see,
at least in my case, the two activities (local support group and CELIAC
e-mail list) don't clash or compete.  In fact, I'd say they complement
each other.
 
You all know the strenghs of the CELIAC e-mail list:  1,600 other
subscribers; medical professionals that read and respond to questions
on the list; product information often including manufacturer phone
numbers or addresses; newsletters; and numerous reference files.  So
with all this available on the Internet, why bother with a local
support group?  Here's why:
 
Human contact, the one-on-one sharing of ideas, and communal
gatherings with GF food are important parts of a support group that
no e-mail list can ever provide.  Anyone who thinks that dry
"information" is all they need or want from a support group is
missing the point badly.
 
In our group we've had people unexpectedly hospitalized.  As you all
know, oftentimes the hospital totally messes up the GF diet.  However,
our group has a "hospital committee" which rallies around and brings
GF food to people that are unexpectedly hospitalized and need help.
This takes away the worry of what they might be eating, and allows them
to concentrate on getting better.  I'm trying to imagine an e-mail list
performing this service.
 
Our annual picnic is in June.  Families will gather and share GF
food.  Celiac children will play with other celiac children and find
out first hand that they really aren't alone.  Try telling a
six-year-old "Don't worry honey, you won't miss the other kids at the
support group.  Why don't we get on the computer and send messages to
people you'll never meet instead!"
 
You're thinking of finding a new GI specialist.  Where are you going
to have better luck:  On a globally-dispersed e-mail list or by
asking other members of your support group, who live in the same
area?  The same can be said for finding GF products in local health
food stores, or finding restaurants that are good about serving GF
meals.  These are things you can find out on your own, but you'll find
out a lot more by swapping war stories with others who live in your
community.
 
I offer you these points:
 
1. One of the reference files you can get from the CELIAC e-mail list
   is a list containg local support groups, which we do try to keep
   up-to-date.  Clearly the listowners believe in the value of local
   support.
 
2. Any support group, large or small, organized or informal, can offer
   the advantages I've listed above.  Many groups also offer
   newsletters, local GF suppliers, local medical and dietitian
   advisors, special speakers, etc.
 
3. A lot of good ideas for meetings can come from this list, and any
   of the list's information files can be downloaded, printed, and then
   shared with people at local support group meetings.
 
4. There is a companion e-mail list called CEL-GPS, which is
   specifically for group leaders to get together and exchange ideas.
   (If you are in a leadership role in a local group and would like
   to join CEL-GPS, send me an e-mail note to the address listed
   below.)
 
For those who think this list is enough, I hope I've given you cause
to reconsider.  If you need help finding a local group, feel free to
send me a private e-mail asking for help.
 
Jim Lyles ........ <[log in to unmask]> ........ Holly, Michigan, USA