Thousands of celiacs, tons of passion and one (huge) cake can make a difference, raise awareness and make change to benefit celiac disease and  people with gluten sensitivities.

In just a few weeks Washington DC will be abuzz with all things gluten-free. Whether you are in DC or Ames, Iowa, you too have the ability to make a difference. Find out right now what you can do by clicking here.

That’s where the 1 in 133 cause comes in. Jules Shepard of Jules Gluten Free and John Forberger of Celiac Secrets & @GlutenFreeTri on Twitter have jumped in with both feet to bring the issue of gluten-free labeling back to the minds of the Food and Drug Administration. I talked with Shepard about her passion and the daring decision to make a 12 FOOT gluten free cake!!

Lackluster Gluten Free Labeling

A little background first: in 2004 the Food Allergen Labeling Consumer Protection Act (FALCPA) was made into law. It requires the top allergens be labeled in our food. This includes wheat—but it doesn’t include gluten. However, the law does say that the FDA must have a “voluntary” gluten-free labeling rule issued by August 2008. Over the last several years there has been some movement, including public hearings and some information gathering , but that appears to be about it.

Insert Shepard and Forberger—who took the bull by the horns this spring to re-energize the movement launching 1in133.org late last month. Shepard says her passion comes from working with people who are newly diagnosed and are just learning how to read labels. “What does ‘made on shared equipment’ mean,” Shepard said in an interview with The Savvy Celiac. “For that matter what does it mean when a manufacturer says their product is ‘gluten free’ but isn’t certified by GFCO or CSA?”

“People get sick all the time just because companies don’t have a true understanding of what is expected of them when they label ‘gluten free’ and consumers don’t know what’s safe to feed their familes.” – Jules Shepard, Owner, Jules Gluten Free and Organizer 1 in 133.

This is one reason why labeling is so important. Another is to keep companies from hiding ingredients in the vague “natural flavorings” catch-all on labels. But the years-long delay is very troublesome. “It is inexcusable to me and to the millions of other gluten-free consumers that they [the Food and Drug Administration] are not taking this responsibility seriously,” Shepard said.

Raising Awareness with the 1 in 133 Event

On May 4th, organizers will erect a gluten-free cake 12 feet high (the largest in the world) to help raise awareness for celiac disease and gluten-free labeling.  Donors, sponsors, members of Congress and FDA officials have been invited to a reception for the unveiling of the cake at 5:00 p.m. EST.

Will this do any good? Shepard says it already has! “It  has put Gluten-Free Food Labeling back on the FDA’s radar and it has raised awareness among food manufacturers and consumers alike that gluten free food labeling is going to be a reality and why it is needed.”  Shepard says the FDA already received 1,500 emails from gluten-free advocates since the cause was launched just over one week ago.

Shepard hopes this event will serve as educational for people with celiac disease but just as importantly “to give notice to manufacturers (especially  those who are jumping into this hot market and looking to make money off gluten-free products) that making foodstuffs labeled ‘gluten free’ comes with a great deal of responsibility.”

Even if you can’t attend, you can be heard.  You can join a petition, send an email or donate money to help raise awareness and money for celiac disease.  Just click here.

So what about that much-talked-about cake?  There are great details on what you can expect from –what could the most talked about gluten-free food since Chelsea Clinton’s wedding cake. You can read about that here.

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