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Thursday, March 31, 2011

1 IN 133 - Support Gluten-Free Food Labeling
Do you realize that 1 in 133 people have Celiac Disease?  

Think about how big your neighborhood is.  Your school.  Your church.  Your workplace.  YOUR FAMILY.

1 in 133.

That's a LOT of people, and most of them don't even know they are affected.  Did you know that estimates indicate approximately TEN PERCENT of the T1 community will be affected by Celiac?  This is a second autoimmune disease that has made a  huge impact on a community I care deeply about, and that's why I'm coming to you today.  

Not to mention that my T1 daughter is part of that 10%...and I'm that 1 in 133 as well.

In 2007, the Food Allergen Labeling and Consumer Protection Act (FALCPA) tasked the Food and Drug Administration (FDA) to finalize standards for gluten-free labeling. Four years later, the FDA has failed to fulfill that mandate. To the millions of Americans who eat gluten-free food, this inaction is a big deal.  

(Hello???  FDA DRAGGING FEET...can anyone in the T1 community relate to this?)

To draw attention to the FDA's inaction, and to galvanize the burgeoning gluten-free community, leading members of this community will host Capitol Hill legislators, noted celiac disease researchers, gluten-free community leaders and food corporations to the first Gluten Free Food Labeling Summit, in Washington, D.C. on May 4th, 2011. Coinciding with the newly recognized National Celiac Awareness Month, the event will also feature the world's largest gluten-free cake – symbolizing the big deal that clear, accurate, reliable labeling plays in the lives of people dependent on labeling for their health.

John Forberger, of full-service marketing agency Oxford Communications and Jules Shepard of Jules Gluten Free are addressing this stagnate situation head on...and they're doing it with CAKE.  Let's face can catch more flies with honey!!!!

I had an opportunity to ask John and Jules a few questions about the 1in133 Project, and I'm excited to tell you how YOU can help...right you move on to the next blog you're planning to catch up on...    

What inspired the 1 in 133 project?
The "1in133" project's humble beginnings began in late 2010, during a phone call between John and Jules. We had asked each other who was standing up for all of our friends, both online and off, who shared stories of being "glutenized" or becoming ill after ingesting gluten. Every day we heard of people eating "gluten-free" foods and experiencing horrible reactions - stomach cramping, back pain, headaches, dry skin and even hospital visits. Neither of us could think of anyone or any groups who were trying to standardize a set amount of gluten present in manufactured foods. We knew a standard was overdue, but couldn't pinpoint who was spearheading the much needed effort.
How can people get involved?
On our website, there are 5 easy ways to further the FDA's responsibility of finalizing standards for gluten-free food labeling.

1. Sign a cool digital petition, which people can sign from the convenience of their home computer, anywhere in the world.
2. Write to the FDA directly on our site (
3. Donations are welcome of all sizes to further this joint effort and community venture.
4. Bloggers can download a neat banner/badge from our site ( and install it on their site.
5. To spread awareness using social media platforms, we created a Facebook Causes Page ( and a Twitter account ( We recommend using the Twitter hashtag #1in133 whenever chatting about the event.

What's this I hear about the WORLD'S LARGEST GLUTEN-FREE CAKE?  
(Editor's Note: I LIKE LOVE CAKE!)
According to our calculations, we are projecting the cake will be between 10-12 ft. tall. It will likely have 16 tiers of 3 layers of cake per tier. It will weigh over 1000 pounds (it’d be fun if it weighed 1,133 lbs, wouldn’t it?!!). Whole Foods Gluten-Free Bakehouse in NC is baking out the cakes using Jules' recipe for white cake, and we’ll know closer to the cake event how many sheet cakes it will actually take to create this thing.  There will be folks coming from all over the US to help “build” the cake, and financial contributors and others will be present to put some of the “icing on the cake!”
So there you have it, friends.  
Start telling the FDA to finalize gluten-free labeling standards

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  1. I'll get on it, my friend. I'll forward this onto others I know, too. Important stuff here!!!!


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While I'm happy to share our experiences with what works, and what doesn't work, for the management of Type 1 Diabetes and Celiac Disease in our house, please do not mistake anything you read here for medical advice. Decisions regarding your/your child's health care should be made only with the assistance of your medical care team. Use any information from this blog at your own risk.