Re: Do you eat it if it says may contain trace amounts - to - :WE DO NOT HAVE CLOUT

[Guest guest]

I tend to agree with Naren's comment that, mostly, "...we do not have clout" to demand better labeling laws. Part of that is that we do not have as strong as an advocacy organization as Coeliac UK in the ... well, UK. My wife just received the Annual Report from the non-profit UK group. In 2009 it spent, roughly, $4 million dollars last year on membership services (including their print magazine), "campaigning," research, generating funds, and local groups. Administration of the organization was only about $75,000. In comparison, the US's Celiac Sprue Association, self-described on their IRS 990 report as "...the largest member-based non-profit celiac organization in the United States...," spent $593,000 in 2008 (the lasted report available on the charity database

GuideStar.org). The Celiac Disease Foundation's 2008 Form 990 shows a total of expenses of about $384,000. The National Foundation for Celiac Awareness has total 2008 expenditures of about $618,000. My point is, unlike the UK, "we do not have clout" because we have no major, strong, visible advocate for the well-being of those with celiac sprue or wheat allergies. A keyword search of the world "celiac" on Guidestar.org brings up 29 organizations, most of them small and local. Look into the finances (form 990s, if there are ones), and you find there is nothing like Coeliac UK.Basically, I am suggesting is that we need the equivalent of Coeliac UK in the US to give the disease sufficient visibility and empower action in government and change in the food industry. HogleFreelance academic librarianInstructor, online researchEmail: jjhogle@...Web: (under de- and re-construction) www.blueroom.comReality ain't what you think it isArt Graphics & Photographs[http://www.blueroom.com/realityaint.htm]From: Naren Wadhwani <narenw@...> Sent: Thu, August 26, 2010 12:55:58 AMSubject: Re: [ ] Do you eat it if it says may contain trace amounts

I find it discouraging that so many of us are willing to accept that these companies are not interested in our health but only their bottom line. Obviously those companies can offer products that don't contain gluten ingredients for those who don't need to avoid gluten for serious health reasons, but it hurts our cause and our need for truly gluten free products if those of us with celiac tell these companies that their products are okay for people with celiac when they are clearly not okay. (And as many pointed out, not having an obvious reaction doesn't mean your body isn't suffering damage...)

Just wishing we had a consensus on this so we could use our clout to demand better labeling laws to protect us...

.... Sad but true, WE DO NOT HAVE CLOUT! Drug companies don't even feel there is a financial incentive to develop pharmaceuticals to treat Celiacs w/ the consensus 1/133. The new labeling laws piss me off too, but all we can do is be thankful for Mariposa chocolate brownies and whatever else makes us feel better... and by all means LOBBY!! and call your senator too! (I mean it!!! and dont' let the republicans take Congress!)

Naren