Going Gluten-FreeApril 20, 2011

Grassroots and Gluten Free: A Labeling Summit

I’m going to Washington, DC, on May 4. Truthfully, I love touring around Washington--but this visit is different.

I am wearing the hat of a gluten-free activist. It’s a hat I have not worn since I worked to help pass the Food Allergen Labeling and Consumer Protection Act (FALCPA) in 2004. And before that, well, let’s just say I was in college wearing bell bottoms and beads. 

Something very special, very important is happening in Washington, D.C. on May 4 and it will affect all of us who are gluten-free, know someone who needs this diet, or work in a supporting role in celiac disease and gluten sensitivity. I want to be part of this. In fact, my son is coming. Alicia Woodward, Living Without’s editor, will be there. (Living Without is a sponsor.)

I’m talking about the gluten-free Labeling Summit and Cake Building event. As they say on the web site 1in133, “It’s a Big Deal.”

This began several months ago as the brainchild of cookbook author Jules Shepard and John Forberger. And it has turned into a monumental grassroots effort to tell lawmakers we need the gluten-free labeling regulations that have been mired in FDA bureaucracy for nearly three years. 

I feel strongly about the need for gluten-free labels and accountability from manufacturers, and I’m thrilled about the big stir this event is creating. The American Celiac Disease Alliance, the organization that led our community effort resulting in passage of FALCPA, will receive the proceeds from this event. The ACDA recently launched a letter-writing campaign and look what happened: In two days, 700 letters were sent to U.S. Senators and Representatives and over 30 days, 3,500 letters have gone to Secretary Sebelius (HHS) and Commissioner Hamburg (FDA).  That IS a big deal.

The notion that we might be able to influence something that is so crucial to our lives and the lives of our families resonates right down to my gluten-free core. It’s not often that I would pack up in the middle of the week and fly to DC to see a giant cake. But I would not miss this.

Now, in the name of full disclosure, I am a volunteer with the ACDA and serve as the president. I do so because I believe it is a way to make a difference in my life and that of my family. I have a son and a sister with celiac disease and I was diagnosed in the 1970s--right after I packed away my bell bottoms.

I share the frustration and concern of parents, patients, food manufacturers and health care professionals about a lack of standards that allows companies to place 'GF' stickers on all sorts of products, including bottled water. Come on. Without a standard, there is no way to determine if companies are testing products or verifying ingredients, and the health and safety of the consumer is at risk.

On May 4, gluten-free chefs will be constructing the world's tallest gluten-free cake, and individuals from the celiac community will be meeting with Senators and Representatives to let them know the FDA needs to finish the gluten-free labeling regulations.

You can be part of this, too. Write and tell Congress you want gluten-free regulations now. Click here for more info. 

In addition, to learn how you can get involved and support this labeling summit and cake event, go to www.1in133.org. And come to Washington, meet with your own Congressional representatives and stop by for cake. 

Well, it’s time for me to dig out my bell bottoms and beads. What about you? Will you join this grassroots effort? Will you help make a difference?

Comments (3)

Yes, we definitely need some GF guidlines on packages of food we eat. I was diagnosed with Celiac disease and developed a secondary intolerance to dairy. Dare I say, wheat or gluten will make me incredibly sick and it lasts for about a week. Not only do my intestines hurt badly, but I have a diarreha and chills. Along with this comes the tiredness and depression. Not only should food we purchase in grocery, convienence and health food stores, be labeled wheat and gluten free, but restaurants should, as well, put a little GF on the side of their dishes that are gluten free or can be modified to be gluten free. So many of our foods have hidden gluten in them that this would surely help. Something that is never brought up either is older seniors who have celiac disease and also have problems seeing small print that is put on our consumer packaging. Foods labeled right in the front gluten and wheat free would solve a lot of difficulties

Posted by: sharon k | April 21, 2011 8:27 PM    Report this comment

Yes I agree we need stricter guidelines! I was in a very bad car accident, seat belt did not restrain me, and air bag did not work either. I started with severe problems after car accident, I am self diagonised, with the help of boy freind with health books. I was told I have to eat wheat/gluten for four months. I replied you are out of your mind! I will be sick around the clock! I had allergy test done I was told gluten intolerent. I am very senistive to wheat, and gluten. Now we have to watch out for GMO'S thanks to Monsato! They want to restrict our right to grow a garden. I will not stop growing my garden! People better wake up, this governmentis to big, FDA! Thank you Wanda Marie Dudek

Posted by: Wanda Marie | April 21, 2011 1:46 PM    Report this comment

Yes, we definitely need some guidelines. I have been gluten-free for twelve years, and since the onslaught of small and large business wanting a part of this very untapped market I have never had so much trouble. I think I am one of those persons whom the 20ppm or even the 10ppm is still affected. Back in the beginning of my understanding of this disease I had been a vegetarian. I tried veggie burgers (found none suitable). One company in particular seemed to have no obvious gluten ingredients. I tried it, had symptoms, and called the manufacture. They were nice and had the information I needed. It contained .0002% or .002% (long time ago), .0007% is the same as 20ppm. So that is not o.k. and I am not trusting the certification. Not only that, I have seen labels that say gluten-free on one side and on the reverse in the ingredients listing wheat in parenthesis . Are you kidding me?!! I own a gluten-free coffee shop in Heber City, UT. and besides checking with all manufactures when ordering flours and ingredients, I am the test monkey. If something is manufactured in/on the same facility/same equipment as any form of gluten I don't buy it. I don't necessarily believe that bureaucracy is always the best way to get things done, however labeling things obviously GF (water), and things naturally GF, and things GF that have a minute amount very confusing for the consumer, even with 12 years experience. Sincerely, The Local Grind, An Independent Coffeehouse and Gluten-Free Bakeshop

Posted by: Laura Elizabeth Maierle | April 21, 2011 12:22 PM    Report this comment

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