<<Disclaimer: Verify this information before applying it to your situation.>>
As one of the listowners of this list, I'd like to share some of my
thoughts on this issue of other celiac web pages and lists.
With the guidelines for this list we have attempted to balance
quantity and quality: Keep the number of posts down to a manageable
number per day, while retaining most of the useful information. So we
watch carefully to ensure that posts are related to celiac disease or
the gluten-free diet. We try to keep off-topic posts to a minimum. We
encourage people to read the FAQ and other reference files, and to
search the archives to avoid repeat questions. We ask people to
respond privately to questions so that a summary or composite post of
all the answers can be sent back to the list. In this way we have
kept the average number of posts per day at 15-20, even though our
numbers are ever-increasing.
It's a tricky balance to maintain. We still have a lot of people who
signoff or go to NOMAIL, because they get too many posts from the list.
At the same time, we have had some people complain that we are being too
strict when we disallow posts. We have two ways to "measure" whether or
not we are striking a good balance:
1. Is the list growing? (Yes--it has steadily increased at the rate
of about 700 people per year)
2. The ratio of compliments to complaints in private e-mail notes we
receive. (I'd estimate compliments outnumber complaints by at
least 5 to 1.)
Still, there can be no doubt that many of you would like to have more
personal conversations with other celiacs. This has led to interactive
chats, web pages with personal stories, and even other e-mail lists that
celiacs have started. Indeed, even your listowners have done some of
this; we run the CEL-KIDS e-mail list for celiac children and their
parents; the CEL-GPS e-mail list for the leaders of celiac support
groups to exchange ideas; and the CEL-PRO e-mail list for medical and
research professionals with an interest in celiac disease.
I think most of the other celiac web pages, chat groups, and e-mail
lists speak favorably of our e-mail list and web pages. Most of them
include instructions on how to join this list, and links to our web
pages. In turn, we have always allowed posts to this list which refer
to other celiac pages, chat groups, and lists. Some of these are
filling needs for celiacs that want more personal contact or a wider
latitude in choosing topics to discuss. I see no problem with this.
It was suggested that some of these sites contain bad information. You
should always use caution with information from the web. Before
accepting it, ask some questions: Are sources and references to back up
the information listed? Have you found the same information at other,
independent web pages, journals, etc.? Is the web page a personal page,
part of a known organization, or reviewed by celiac experts? Does the
page include links to other celiac web pages and sources of information?
If the web page says things that are radically different from the
generally accepted norms, and doesn't include links to other independent
sources of celiac information, I'd steer clear of it. But most of the
web sites I've seen have been fine.
Personally, I'm a lot more leery of things such as:
-- Elaine Gotschall's diet ("Breaking the Vicious Cycle"), which is
a much more restrictive diet than is necessary for most celiacs.
My understanding is that some have even claimed it cures celiac
disease which is totally incorrect. If you need to follow her
very restrictive diet, that is fine as it is a gluten-free diet;
but it eliminates a lot of things that don't have gluten and which
help provide a balanced diet.
-- An older web page which touts a Phen/Fen treatment as a cure for
celiac disease. It does nothing of the sort, and has dangerous
side-effects.
-- People who have claimed to be cured by faith, algae extracts,
bowel-cleansing treatments, or any other such miracle treatments.
Folks, it just doesn't work that way; once a celiac's immune
system starts responding to gluten, it will continue to do so for
the rest of that person's life. Until a SAFE way can be found to
suppress that immune system reaction to gluten, the only "cure" is
a lifelong gluten-free diet. Period.
-- The occasional subscriber who decides on their own that certain
types of posts are inappropriate, and writes privately to other
subscribers telling them so instead of to the listowners. If this
happens, forward the note to [log in to unmask]
and let us handle it.
-- People who write to others privately, making unsubstatiated claims
about other people or products (not a common problem, but it does
happen). Before you believe anything you are told by private
e-mail, make sure either you know the person who sent it to you,
or that you can verify their claims independently.
Having said all that, let me close by listing a few of my personal
favorite CELIAC web sites, all of which are frequently updated:
http://www.panix.com/~donwiss/ -- Don Wiss' web site contains the
most comprehensive set of links to other celiac web sites on the
internet. From his site you can get to nearly anywhere in the
online celiac world.
http://www.celiac.com/ -- The very first link you'll find on Don's
web site is this one, and with good reason. Scott Adam's web page
is a very comprehensive site and a good place for a new celiac to
start. Scott has borrowed information from a lot of different
sources (always with the proper credit given), covering many of
the issues which celiacs deal with.
http://rdz.acor.org/lists/celiac/index.html -- This is the official
web site for the CELIAC list, so I may be a little biased <g>.
At this site you can browse all of the reference files we have
available through the listserv. It is no accident that you'll
find links to Don's and Scott's pages at our web page, among the
list of links to other sites.
There are many other fine sites, but these are my top three.
I've given you one listowner's perspective on this issue. I would be
sorry to see an e-mail list formed with the intention of directly
competing with our list, as that would be devisive for the online celiac
community. But most of the celiac web pages, chat groups, and e-mail
lists that I've seen do not compete with our list but rather complement
it and each other. There generally seems to be a spirit of cooperation
across most of the various online celiac resources, and I certainly hope
that continues.
Speaking only for myself and not the other listowners,
--
-- Jim Lyles .............. Home: [log in to unmask]
-- Holly, Michigan, USA ... Work: [log in to unmask]
--
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