Friday, May 27, 2011

Setting the Record Straight on Gluten-Free Eating and Celiac Disease: An Entrepreneur Takes on Washington

Photo by Charles Votaw (
What do you get when a passionate gluten-free baker, entrepreneur, and small business owner goes to Washington? You get Jules Dowler Shepard building a sixteen-tier gluten-free cake at the Embassy Suites Hotel and Convention Center to raise awareness and lobby for gluten-free labeling laws.

Shepard will tell you that this first Gluten-free Food Labeling Summit in Washington was a success, but it’s just the beginning, and she didn’t do it alone.

Shepard partnered with fellow celiac and athlete John Forberger to co-found and host the summit. While Shepard used her own birthday cake recipe and donated the gluten-free flour for the eleven-foot cake, Vance’s Foods donated dairy-free milk powder, and Earth Balance donated the shortening and soy milk.

While the cake, the largest ever gluten-free cake, made a statement of its own, the real statement was the need for gluten-free food labeling laws. The Food Allergen Labeling and Consumer Protection Act of 2004, which legislated the requirement for food allergy labeling guidelines, also required the FDA to implement rules for voluntary gluten-free labeling guidelines by August 2008.

The FDA hasn’t done their job.

This is a big deal for the one in 133 (or three million) Americans who have celiac disease (an autoimmune disorder that damages the intestinal lining and causes a vast array of gastro-intestinal and other symptoms) and are tired of guessing at which products are safe for them to consume.

While Shepard and a team of bakers were building the cake, leaders in the gluten-free community used the opportunity to meet with their Senators and Representatives on the hill to discuss the issue. Members of the team met with the FDA, with help from Congresswomen Nita Lowey from New York and Betty McCollum from Minnesota, to ask them to take action. The team told the FDA, “We are not advocating for a particular standard. We speak with one voice. We need to see it through.”

Large food manufacturers have noticed that sales of gluten-free products have increased 30% in recent years and have introduced gluten-free lines to address the market that includes an additional 18 million Americans with gluten sensitivity. Without consistency in labeling however, there is currently no way to know which products are truly safe.

“We need a standard,” said Shepard, stressing that eating gluten-free is not a choice for those with celiac disease, but a medical necessity. “For the 21 million people needing to eat gluten-free, it never was and never will be a fad. With this grassroots movement we are pushing for the labeling laws to be finalized.”

The leftover cake was donated to a local food bank following the reception.


Liz Fichera said...

My nephew has to eat gluten-free foods and because of this my sister and I have become much more aware of gluten-free foods. Slowly but surely, there are more of them. Gluten-free foods are already labeled as such so I'm not completely clear on the issue?

Colette said...

Liz, actually there is no standard for gluten-free labeling. Something can claim to be gluten-free, and not be. Nor do the ingredient labels have to call out gluten (as they do for the top food allergens). The only products labeled gluten-free that you can be comfortable with today (without further investigation) are those certified by one of the independent gluten-free testing and certification labs.

Liz Fichera said...

Thanks for the info, Colette!