We're on a Roll!
When May melted into June, I hardly noticed. After all, the first of the month landed mid week and I had flipped my calendar before the week began. What I did notice was the quiet. There were no more Celiac Awareness Month activities.
Okay. As a celiac, I am aware of this disease all year long. But this May was filled with special excitement and promise for those of us with celiac disease and gluten sensitivity. Just look at some of the highlights.
- On May 4, the tallest gluten-free cake in the world was built in downtown Washington, DC. While the cake-building team of Jules Shepard, John Forberger and Lee Tobin constructed the behemoth - 60 layers and 11 feet tall! - a group of us went to Capitol Hill and visited 12 key Congressional members to push for national gluten-free labeling standards.
- You all sent nearly 10,000 letters to the FDA and the Health and Human Services Department, asking for gluten-free labeling standards. This got the FDA’s attention and Deputy Commission for Food Safety, Mike Taylor, responded. He attended the cake reception and continues to communicate with the American Celiac Disease Alliance in advance of recommendations for gluten-free standards that should be released in the next two months!
- More than 9,700 people signed the labeling petition to the FDA on the website www.1in133.org.
- Six states - IL, NC, MD, MN, NH, VA - issued proclamations declaring May as Celiac Awareness Month. And California issued a resolution to the same effect.
- The Celiac Disease Foundation released a dynamite new Public Service Announcement that raises awareness about celiac disease. If you haven’t seen it, go to www.celiac.org.
- The Center for Celiac Research at the University of Maryland reports that more than 15,000 people took part in 9 walks for celiac disease this year. In addition, researchers led by the Center’s Dr. Alessio Fasano released a study confirming the existence of “gluten sensitivity” as a separate medical entity from celiac disease.
With so much happening, should I worry that we’ll be forgotten now that May has morphed into June? I think this year might be different. The FDA and the American Celiac Disease Alliance have already scheduled a meeting to move forward on establishing gluten-free labeling standards.
But there’s more we can do as individuals. We can continue to write to Congress and let our representatives know that the FDA needs to complete and issue these labeling standards. We can let them know what these regulations would mean to our lives.
Congress is looking at cutting spending this year. We need to tell them not to cut spending for food safety! We can let them know they need to focus on food safety including gluten-free labeling. To write a letter to your Congressional representatives, go to www.americanceliac.org and scroll down to the Advocacy button.
While there is something bittersweet about turning the page on May, it seems like we’ve built up enough momentum to carry us through fall and then some.
Here's a note we just received from Meredith Craig, a young girl whose sister has celiac disease:
"I am a kid with a little sister with celiac disease. Thanks for caring about the people who have to eat gluten free. I did a presentation for the whole 5th grade Discovery School @ Reeves Rogers. All the teachers signed the petition but I don't know how many students. I have always wanted to become a registered dietitian to help mostly diabetic children and children with gluten allergy, sensitivity and celiac disease because we had a bad dietitian both times my sister went to get help. It is really cool that you all try to help people with a complicated life have easier ways to stay alert and healthy."
With love and thanks,
Tell us your thoughts about the need for gluten-free labeling and how having national standards in place might change your life. Share ways in which we can continue to bring awareness to celiac disease and gluten sensitivity.
Beth Hillson is Living Without’s food editor. She also serves as president of the American Celiac Disease Alliance, a volunteer, grassroots, nonprofit organization.