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>   I just wanted to remind everyone that there is a news group available
> 'alt.support.celiac'

In order to receive this new group, you may have to ask your ISP or news
service to add the group.  Almost all of them are happy to add groups in the
alt.support hierarchy, even those that scrutinize alt groups.  My news
service, "newsguy", added it immediately upon my request.

I wanted to add my voice about this newsgroup, for folks that don't know much
about them.  I realize that some of what I am going to say in this post is
going to be controversial, and as a person relatively new to this group, you
are of course free to disregard it, however, I am *not* new to Internet
support groups and consider myself quite tuned in to how they function (when
I'm not utilizing them, I'm studying them!).

Apparently there are those who worry that opening another venue for celiacs to
exchange information would dilute this one.  I very *strongly* doubt that this
would be the case.  This mailing list is *the* central Internet presence in
the celiac community, and as more and more people come online, I would venture
to say that it has become a central information provider in the community at
large.  The work the listowners have put into this is paying off handsomely,
from the point of view of someone who has only been aware of celiac disease
for 6 months.  The archives of this list and the related files have had
hundreds of hits from me alone, and I am thankful on a regular basis for the
information therein.

However, there are limitations to what this group can provide, due to the
format.  This format (question/private email/summary) is clearly necessary,
due to volume considerations, but it leaves gaps:

     1)  The first impression this group gives is that it is here for
information exchange only - one doesn't get the impression of a community that
one can draw emotional or other kinds of support from.  As I said, this is a
first impression only, it turns out there *is* a community, but it is
"submerged" as it were - you have to get beyond the rather sterile (compared
to other net support groups) first appearances.  The warmth of the wonderful
folks who read this list is only occasionally hinted at on the list itself.

    2)  There is very little free-flowing discussion on the list, even with
issues that pertain to the group as a whole.  Note that this type of
discussion isn't prohibited in the list charter - it is my impression, though,
that the format of the list makes people hesitant to post to the list in such
threads, so they continue to send private email and the rest of us lose out on
the discussion.  (A recent example of this from my experience was my post
asking about various celiac organizations.)

    3) Even when it comes to more specific inquiries, there are times when I
feel many more people could benefit from public discussion.  For example, I
have asked a few baking-related questions on the list in the last few months.
Some of them have generated over 50 responses, so there is clearly a lot of
interest.  But I see 2 negatives to having them all come in email:  a) there
was a lot of duplication.  On a newsgroup, when someone sees that their
suggestion has already been made, they know they don't need to.  On a list,
the questioner might get 15 responses saying the same thing - a waste of time
to both.  2) More importantly, there were a *lot* of possible "further
discussion" type email chats that ensued from the original responses.  It was
clearly impossible for me to include in my summaries all the sub-discussions
that were generated, but I felt a nagging sense of guilt, because I realized
that many people would be interested in these discussions.  I did a certain
amount of "well, someone just wrote me that sweet rice flour produced a better
breadstick in that recipe" in email, but it was inefficient, and I just
couldn't keep track of all the people that might be interested in certain
lines of discussion.

    4) I absolutely understand the need to stay 100% on-topic on this list.
But there are times when slight deviations from the approved topics can end up
making great contributions.  A newsgroup (or, indeed, a mailing list without
such volume concerns) can allow for a certain amount of "topic drift" that can
sometimes be as interesting and informative as the original subject.

    5) Finally, there is the topic of grief (my other main area of
professional study, btw).  A lot of people on this group are dealing with
grief issues.  They desperately need emotional support.  Their families and
friends often either just don't "get it" at all, or frankly get tired of
hearing about it, even with the best of intentions.  I truly believe that
these people need a place to go where it is immediately apparent that there is
a caring community, not just a Q&A session going on.  Many many people are
just NOT going to reach out on a list with this format and ask for support of
this kind.  And even when they do, because the responses are all private, they
can feel alone with the ones that are, at times, less than helpful.  Someone
recently posted that she received "stop feeling sorry for yourself" emails
when she requested help.  She is not the first person to tell me this, and, in
fact, I received similar emails when I first started posting.  I'm not saying
that this would happen *less* in a more public forum - a lot of communication
would still happen by email, as grief is personal and private - but my feeling
is that the person would feel less *alone* with it than they do on this list.
Picture a new, bewildered, grieving person, who posts for support and gets a
few people, who, with the best of intentions, say unhelpful things (this is a
problem with grief of all kinds, btw, and I don't blame the responders).  That
person may well go away feeling worse.

Now, for the other side, there are the disadvantages of newsgroups:

1) They are less private, as anyone can access them. Although that is also
actually true for this list, since it is archived on the Web, there are more
barriers to retrieving the posts.

2) Spam, both on the list, and email spam for those who participate.
Incidentally, even though I participate widely in Usenet discussions, my email
spam hasn't changed in volume, and, in fact, may be a little lower than a year
ago.  I receive 4-8 per day, most of them in a clump in the morning.  98% of
them are easily identified by subject and/or author line and are deleted
without being opened.

3) Being a new group, alt.support.celiac is not widely propagated as yet.  If
it succeeds, it will take awhile to build.  The volume is extremely low at
this point.

Incidentally, what I would like *best* is to have a higher-volume/less
restrictive mailing list, perhaps in addition to this one.  There are many
such lists on the net.  To me, that would be the best of both worlds.  Again I
do NOT think that other venues should or would *replace* this list, but that
there are unaddressed needs that could potentially be met in other places.

In conclusion (finally!) I am *not* going to summarize private responses to
this post to the list.  I am also not inclined to engage in long email debates
that no one else sees.  If anyone would like to participate in a general
discussion of any of the issues I have raised, I believe it is within the
charter of the group to do so.  If it turns out not to be within the charter,
then that makes my point even more strongly.

Holding my breath as I press the "send" key-

Laura