<<Disclaimer: Verify this information before applying it to your situation.>>

 

Wow - that is very interesting, though not suprising. The Atlanta Metro
Celiacs is a CSA chapter and I disagree with much of what the CSA
believes since my own medical tests prove some of their beliefs
incorrect, at least for me personally. I'm vigilant but not neurotic
about my diet and my doctor said if I could sell what I'm doing to other
Celiacs I could quit muy day job. 
 
Thanks for shraing this. It's sad but I'm glad to know what happened. 



Finally!!! Even in 1995 they were printing false information and causing
grief to many of us....

 

 

Hmm---they should break away.  Not ALL Celiacs can tolerate distilled
vinegar or alcohols or oats!!!  Who cares what scientific evidence says!
I wonder if Lee knows how damaging it is to be made to feel like an
idiot from a national CD organization if you get a serious gluten
reaction from a supposedly "GF" beverage, but still be told that "Well,
you must be imagining it because Latest Scientific Research Shows that
there is No Gluten in these Beverages, so therefore You Are not Getting
Sick From It"????  There ARE still people who are extra sensitive----it
sure sounds like there are certain CD groups that might be turning a
deaf ear to us?

 

As a former leader of the XXX (edited out...) CSA/USA chapter, I had the
same concerns and issues with CSA and thought about separating as well.
GIG was more than happy to accept us on a national front. But I had a
former CSA president on my local board and knew it would be a very
difficult fight that I wasn't willing to suffer through. If you are in
contact with them, can you please let them know that I applaud them for
what they did as it took guts.



Maybe if enough groups do this, they'll get the message. I canceled my
membership in CSA when they came out fighting the other groups over FDA
legislation and persisted in resisting current research. I got a
personal phonecall from Gary, which did not go well. Let's just say we
agreed to disagree.

 

I respect the work that CSA did when no other group existed, and I have
the utmost respect for the local chapter's president, here in southern
NJ, but I too, cannot abide by CSA's resistance to working with other
support and advocacy groups in a united front. And in my humble opinion,
it's very confusing to newly diagnosed celiacs (and yes, I use that word
as a noun), to get instructions from CSA, which is held in such high
esteem, and then hear other instructions from the rest of the groups and
the scientific world, and it is bad for public relations (confusing to
the food industry, for example) and it undermines efforts in getting
legislation past. We have come a long way in a relatively short period
of time, especially since the inception of multiple groups and
scientific research. (I've been diagnosed since 1947, so I've seen it
all!).  I understand their position, that they have to protect even the
most sensitive celiac, but there are ways to identify that as a caveat
and still move forward. Everyone understands that all disorders and
diseases run the gamut of intensity and that someone, somewhere doesn't
fit the mold.

 

I keep meaning  to join GIG. They have done real things with real
action, as have the advocacy group. Their work with restaurant chains is
terrific. I wish they'd begin work with nursing home and assisted living
chains, now. I can't seem to get any of the major organizations to look
at them. One step at a time. They're making headway with schools and
pharmacists and doctors and the food industry. But in the meantime, some
of us are getting darned old and I know for a fact that
institutions...adult homes...are not equipped to accommodate gf. I've
spoken with a number of them in NJ.

 

CSA....It blew me away when XXX ( edited out..) called to scold me for
disagreeing with CSA, which I did privately in my note to CSA. I did not
go public with it. 

He said they are against 20ppm because they have to represent all people
with celiac and that he knows people with celiac who are so sensitive
(and these are pretty much his words), they will pass out and crack
their heads open and bleed all over the place. And do I want to be
responsible for them....

 

Very professional statement from a president of a worldwide
organization. 

sic.

 


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