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I agree that it is time to consolidate our efforts to obtain help
from the government, get response from the food processors, inform
the public on Celiac Disease and gain the cooperation of the
medical community.

I feel strongly that any significant progress will only be achieved
with the cooperation of all concerned parties. This should include
all Celiacs, all Celiac Groups and all Gluten Free Vendors.

We all have common needs and concerns and can benefit by a
consolidated effort. Unfortunately, our efforts may not be
'politically correct' and thus there may be 'resistance' coming
from the strangest places and hidden behind excuses.

Some of the 'resistance' will come as a result of the fact that
there is no drug to 'cure' Celiac Disease (only a Gluten Free diet
for life). The pharmaceutical companies (and thus must doctors)
can't make much money on Celiacs.

I think that it is important to involve the Gluten Free Vendors in
the effort, because they need help in getting the product to
Celiacs in a more economical way either through reduced shipping
rates, governmental help or aid in getting their products into
large stores (Ralphs, Safeway, Albertson's etc.) thus resulting in
lowering costs to the consumers. I think other countries help
Gluten Free Vendors, like Canada. This also may indirectly inform
the general public on Celiac Disease and the need for early
detection.

Thanks for bringing up this idea of a consolidated effort. It is
the most practical idea for getting the best results in a timely
manner and it is really the time to try to make it happen!! I
strongly urge all my fellow 'listservmates' to back your efforts.

                              # # #

Is there the possibility for a national organization with
individual members?  I cannot find a group in Toledo, OH, and the
groups I can find are not within driving distances that are close
enough for me.  I know there are Celiacs here, because I keep
running into their relatives:  the lady in the grocery store says
her aunt has Celiac;  the lady at the Deli has a granddaughter that
doesn't eat bread things;  the Amy's Kitchen Enchilada Dinners go
really fast at the Kroger store;  my family doctor says he started
a man on a GF diet to see if it helped (he treated my 2 celiac
kids, and accepted my assertion that I was Celiac when the GI
specialist, the radiologist, and the surgeon all disagreed about
what my x-rays showed - the GI was looking for diverticuli that
were still eluding him after 2 years)
    There are 2 celiacs listed on the site, that are close to me,
but they have not responded to the messages I have left for them.
    I'm medically disabled, with time on my hands.  I would like to
take part, if a national organization becomes feasible.

                             # # #

I agree - I for one do not belong to any currently. Had joined CSA
first,
> then thought I should investigate some of the others, then just
ran out of
> time/money. It is a shame for all of the efforts to be duplicated
and
spread
> out - especially in regards to research and food lists.

                             # # #

I think you have a great idea. Go for it.

                             # # #

I am fairly new at this (18 mos) so not sure of all that went on in
the
past, but I do agree.  However, where does one start given we are
all over
the states?  I know it confused me to have various organizations
when I
first started, but I didnt know what else to do.  To do what you
recommend
means someone has to take the ball and run with it on a full time
basis and
I am sure it would take a few more than one person.

                            # # #

I agree with you 100%.  We definitely need to speak with one voice
and let
it be heard!  I wish that the national groups would join hands and
speak up
for all of us.

                            # # #

Great idea - strength in numbers - plus the recognition of having a
national organization

                            # # #

Of course. Everyone agrees with this, except the group leaders who
would have to
give up power in a consolidation. And they'll block any
consolidation efforts
tooth and nail, unless it's under them. To make such a thing
happen, we would have
to find a leader that everyone respects and who is NOT one of the
current group
leaders. Any ideas?

                            # # #

I have been to several different chapter meetings of the Canadian
Celiac Association, the single national support group / voice for
Canada. They are well organized and coordinated, and provide a
single source of non-conflicting information for Canadians.
Canada seems to have more vendors of GF food per capita, and more
food choices for its Celiac citizens.

                            # # #

I voiced a similar thought at a recent conference that I attended
in New Jersey that was sponsored by Whole Foods. The key speaker
was Dr. Peter Green   director of a Celiac Center at Columbia
Presb. Hospital in NYC.

I am a marketing and sales rep for The Omega Smart Bar company
and
no one in my family is afflicted with Celiac disease. We market a
whole food meal replacement product that is gluten free and wheat
free and free of other nasty things.  In my travels to present this
bar I have had the privilege to speak to many Group Leaders and
through LISTSERV have had the opportunity to correspond with many
as well. There are, as you point out, many groups whose efforts
could be combined in a joint effort to help resolve or focus on
some key issues.

I would be happy to provide my input/suggestions regarding an
effort to accomplish some of your thoughts on this issue. Perhaps
my relationships that I have established around the country, trying
to promote my bar may come in handy as you try to pull together a
common coalition. The initial effort will require a lot of planning
and coordination and ideas and suggestions from many concerned
individuals.

*Please provide references to back up claims of a product being GF or not GF*