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Repeatedly, frustration is expressed on this site with food
manufacturers, the FDA, restaurants, doctors and the public's failure to
understand and lend importance to celiac disease.

Imagine this.  One, only one, huge celiac organization in the US.  All
celiacs support and belong to this organization.  What would we have.
Maybe 50,000 of us?  (No one really knows.)  But that's a big number,
right?  Commanding!  Food manufacturers would reform.  Drug companies
would respond. Restaurants would serve gf meals.  Research dollars would
be delegated to finding a cure.  The FDA might take notice about listing
gluten on labels.  More people would be diagnosed and faster.  The
public would be educated.  People would understand, finally...
But we don't have one united front.  Rather, we are represented by many,
many small celiac organizations.  Who pays attention to a group of, say,
200 members?  No one. And that's where we are.   All celiac groups must
come together for a huge, united front.  Then things will begin to happen.
The problem is us!  We need to support celiac organizations and DEMAND
that they unite for our common good.  Now!  Think about it!

Here are comments from others to my summation of an article on
unification from by Ann Whelan, publisher of Gluten Free Living.

Joe:  What a timely subject.  I just became involved with the Celiac
Support Group in Traverse City MI and am beginning to find out about the
politics of the various Support Groups.  It's sad that we can't organize
and all aim for the same target with the clout of ONE TOTAL UNIFIED
MEMBERSHIP.  It's sad we can't all get together.  It's no wonder we
can't get anything done for us by anone (FDA, Food Manufacturers, Food
Chains, etc.)

Laura:  YES YES YES.  I have gotten info from all the celiac
organizations, but I haven't joined any of them yet.  At first, until I
sorted out the issues for myself, I was totally flummoxed by the
different recommendations vis a vis food safety - and then reading the
lists of the Canadian Celiac Association even more so!  I would love to
Support Ann's efforts - in fact, I'm going to subscribe to her newletter
today.
I have pretty much decided not to join CSA because they seem to have the
least scientific basis for their recommendations and, as far as I can
tell, the least interest in forming alliances...

Pam:  I totally agree that one loud voice would be ever so much better
than the divisive set-up that we now have in the celiac community!

Gayle:  As I see the problem, there are a number of egos involved.
Perhaps one way around that is to have first a coalition of celiac
organizations, working together but keeping their names and independence
for awhile.  Eventually it would be natural for them to abandon their
respective empires and become one organization, one set of by laws, one
conference, etc...  We have to start somewhere to get us all together,
and this may be an initial step.  Thanks for your excellent and
thoughtful post.

Vickie:  I am the President-elect of the Oklahoma Chapter of the Celiac
Sprue Association out of Omaha NE.  I am not qualified to speak for our
entire CSA/USA, however, am quite interested in communication with all
other groups, so that we may not perhaps give up our own memberships,
burt form a unified front... this is necessary to have our voice heard.
We need to inform the public of celiac!!  I'm tired of having to explain
to every fast food restaurant I walk into that I want a hamburger
without the bun!

Nancy:  She mentions an article on mental health and states:  I found it
of compelling interests, quite a propos of what we celiacs suffer--many
of us having been treated by psychotherapists for symptoms actually
traceable to celiac disease.

Deni:  Having one main Celiac organization instead of smaller splinter
groups sounds like a good idea too.

Fran:  You make an excellent point here, Diane.  I wound up with type 2
diabetes a year after being diagnosed w/sprue.  What a huge difference
in having one big powerful advocacy group (American Diabetes
Association)...
It's true all these dribs and drabs of little groups here and there
tends to make our groups divided into separate camps.  Furthermore, as a
group leader, I searched for different National groups to join...  How
does one get them all to come to one neutral united national group?  How
do we get some of the more conservative groups to lighten up?  This
could be complex.  Still, I think it needs to be done.  Sometimes egos
and personal stuff gets in the way too.  Most problematical--especially
since those 3 major ones don't seem to agree on even what grains are
safe!  If the National Groups would agree on the basics (what grains are
safe, which ones are not) getting better labeling would be something
they could take the leadership role with and begin the process.  Still,
I would not hold my breath!

Thanks for all your thoughtful comments.  No one disagreed with the need
to unite for one powerful voice.  Carry on, Ann Whelan, with your
valuable publication and your crusade to unite.  You have the support of
the celiac community.  We just need to get to the leadership.

Diane Holmes, Seattle area USA

I have absolutely no financial interest in Gluten Free Living.