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More excerpts from replies toward unification.  Just passing them along,
with no comments from me:


Somehow we must work to have organizations focus on making our lives easier,
rather than each of them re-inventing the wheel.
I've written to someone in Israel and another person in Australia (both
celiacs) to find out what's happening with their organizations. We've been
focussing on Canada & the States so much that I thought it might be useful
to find out how the rest of the celiac world is coping.  Helen
*********

I would urge ALL Canadians with an interest in Celiac disease to join the
CCA and if possible, support their efforts by becoming more involved through
volunteering &/or donations.
If we don't support the organization that works to address our concerns in
Canada, who will?  Marilyn
*******

As a recently diagnosed Celiac, it is obvious that some kind of unification
is needed.  Firstly, we need to have some lobbying power with manufacturers
and secondly, we need to get the medical community on board. I am sure our
challenges parallel those of any grass roots organization in early
development.  I too am willing to help.  Thank God and all of us for this
listserv.  NorazDad
*********

I couldn't agree more with you and Gayle.   We must have a united front if
we are going to get the attention we need. Especially since we have no large
drug company behind us.  Let me know if there is anything I can do.
Elizabeth
********

CSA/USA has a web site that is in the process of being developed.
The various Celiac organizations have been  addressing their various
expertise. CSA (Omaha, NE)---support groups, Conferences, and  liason to the
FDA,education (and soon a foundation)  Celiac Disease
Foundation(Calif.)---Liason to many organizations, and education
Conferences---American Celiac Society(NJ), Conferences,
education.GIG---(Seattle, Wash)-support groups, conferences and
education.Canadian Celiac Association Education, support groips,

conferences.(All of our numbers are increasing every day)
There are contacts on the administrative levels of all of the organizations.
Since many of them are run completely by volunteers who pay their own
expensives,it may not always be perfect.(but our hearts are in the right place)

Considering that we are all over the map, I think we are  all doing a pretty
good job.  It has taken a lot of years to have the rapore we have with the
FDA. I know that we all would like for our situation to improve in a more
timely manner, but unfortunately research and government officials run their
motors slower than us celiacs would like.

Their are many dedicted volunteers, and more every day, that are working to
that  end.  One has to begin by attending the various conferences, and
becomin active in local support groups.Yes ,there are many celiacs that have
a variety of different problems. We are all not the same. (Diabetic,Corn Soy
?  etc.) We can`t just say we all have the same reactions. That`s the
problem. It would be a simple task if it were so.

PS
It is just that CSA wants to be on the safe side. A wait and  see attitude
for the above mentioned grains seems reasonable. (There seems to be cross
contamination in the field, or in  the plants with some of the products)
Adults have free will to do as they choose.Considering the seriousness of
noncompliance, and the years of damage due to the delated diagnosis of many
celiacs, CSA`s position is not too unreasonable.(The heart is in the right
place.)
Diane Eve Paley NJ  Region III rep for CSA/USA
************
The problem with the celiac list is that it is composed of different types
of people.  Some people want to change the way the FDA and food mfg do
business, others want to chat and share recipes while those new to the list
are often so sick they can't think straight.

If anyone is to make a change, it must be the most capable of people--those
who feel capable of changing the way the FDA and food mfg do business.
These people should also be in the minority.  Unfortunately, history
contains few examples where the masses have changed society.  Most often,
society is changed by lone individuals, or by small groups of individuals.
This isn't because only a few people want to change society, it's because
only a few individuals are willing to face the difficulties and complexities
of changing the status quo.

I have spent my life trying to understand "man's self-destructivesness."  As
a child, I was appalled by man's violence and destruction of his
environment.  As an adult, I wondered why so many people would ingest so
many unhealthy foods and drugs.  Finally, I came to wonder why government
and industry were more concerned with profit than health.
My conclusion is that our instinctive search for pleasure drives us to do
what ever is most immediately pleasureable even if these pleasures destroy
our health down the road.  Once again, you will find that only a minority,
only the most willing and capable of people can put their health and our
health before their pleasure.

If we are to unite behind any thing, it should be the philosphy of "Putting
our physical, spiritual and intellectual health first and our pleasure and
profit last."  This is the philosophy that will unite us with all other
forward thinking groups.  However, the battle between pleasure and health is
a battle between the unconscious and the conscious, and the conscious mind
needs all the advice it can get to overpower the body's unconcious urges for
quick pleasures.  I don't know how many people on the list are willing and
able to move beyond  discussions of  recipes and un-safe ingrediants.  There
may be hundreds.  There may be thousands.  There may be only a few
individuals who want to discuss the more complex ideas of changing the
status quo?  If you or anyone else wants to dig deeper, please write.
Sincerely,
Douglas [log in to unmask]

That's all folks!
Diane