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Gluten-Free Labeling and the FDA: We Are Watching (and so is Monty)

On May 4th, members of the national celiac and gluten intolerance community met in Washington, D.C., to urge the Food and Drug Administration to finalize gluten-free labeling rules, and to ask Congress to encourage and track FDA's progress. Our national community was remarkably successful in using its grass roots strength to organize together and participate in the democratic process as policy advocates.

The May 4th event was led by a broad-based coalition, including nonprofit organizations, celiac disease centers and gluten-free food manufacturers. Jules Shepard, a gluten-free cookbook author and baker, and John Forberger, a gluten-free athlete and blogger, met through Twitter, came up with the idea for the event and created the website www.1in133.org.

Andrea Levario, Executive Director of the American Celiac Disease Alliance (ACDA), simultaneously crafted a successful political strategy in conjunction with ACDA President Beth Hillson, who is also food editor of Living Without magazine. ACDA has been a key proponent of gluten-free food labeling since 2003. I was the national liaison to the summit for the Celiac Disease Foundation, a founding member of ACDA. Here's part of our group, on the way to one of a dozen Congressional meetings on May 4th. From left:  Susan Walters-Flood (NuWorld Amaranth), Andrea Levario (ACDA), Jeremy Reich, Beth Hillson (ACDA).
Here's part of our group, walking the halls of Congress

Members of Congress were very receptive. Representative Betty McCollum (D-MN) and Representative Nita Lowey (D-NY), are particularly committed to tracking FDA's progress and seeing this through. They both attended the evening reception at the Embassy Suites Washington D.C.

Just a few of the many others present that evening and supporting the event: Dr. Alessio Fasano of the University of Maryland Center for Celiac Research; the University of Chicago Celiac Disease Center; King Arthur Flour Company; Nu-World Amaranth; Glutino/Gluten-Free Pantry; Celiac Disease Foundation; Gluten Intolerance Group; National Foundation for Celiac Awareness; Lee Tobin of Whole Foods Gluten-Free Bakehouse;
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and support groups from around the region.

Something that week also triggered a response by the FDA.  Was it the Washington Post article critical of the FDA's delay, 10,000 letters to the FDA by members of the public, or perhaps the world's tallest gluten-free cake (11 ft. 2 in.!) at the evening reception?  Mike Taylor, the FDA's deputy commissioner for foods, attended the reception and seemed impressed that the coalition is so broad-based and includes prominent members of the gluten-free food industry.

Pictured below at the reception, from the left: FDA Deputy Commissioner Mike Taylor, Living Without magazine editor Alicia Woodward, Representative Betty McCollum (D-MN), American Celiac Disease Alliance executive director Andrea Levario.
Here's a picture from the reception
Deputy Commissioner Taylor told ABC news "I want people to understand that the FDA gets it. We're on this. We'll get this moving," He also spoke before the assembled crowd in the hotel lobby and promised to get the job done. He said the long-awaited safety assessment to determine a safe level for gluten in food would be out within a few weeks, open for a public comment period, and the final rule would follow.

Let's see, that was three weeks ago...FDA, we are watching and waiting.

So who is Monty? The Celiac Disease Foundation support group I lead in Northern California, North Bay Celiacs, had a new mascot for our fundraiser this May during Celiac Disease Awareness Month. He is pictured below with our fundraising director, Molly Dillon. O.K., we must admit that he is not really a gluten-sniffing dog, but he is helping keep an eye on the FDA for us. He supports the FDA's proposed rule of allowing food to be labeled gluten-free if it contains less than 20 parts per million of gluten.
Monty the gluten-sniffing dog

We'll keep everyone posted on developments.

As always, Celiac.com welcomes your comments (see below).


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1 Response:

 
Jules

said this on
25 May 2011 6:49:47 PM PDT
Great recap Jennifer! Thanks again so much for the part you played in our 1in133 event! It was great to have you there, and on the Hill for us on May 4 (and great to meet you!). There are links to many photographs on our site: 1in133.org and our flickr link found there.
You are right to stay on the FDA ... we all must. Our fight is not yet over!
~jules
1ini133.org




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Check out this page and the advice on rice prep: http://www.bbc.co.uk/programmes/articles/2F1MDzyW55pg97Tdpp7gqLN/should-i-be-concerned-about-arsenic-in-my-rice

Hi Rachel and welcome I think you've found the single best site on the web for help and advice. Hope it's of use to you. I tested negative for celiac so no referral. My experience with NHS however suggests it could be worth phoning your Gastro's office and asking the admin staff there to check on this. Things get overlooked... I would avoid anything with those warnings on. It's a pain in the arse because, for example, it recently appeared on a brand of nuts I like. However having some experience of production and marketing environments that warning will only be going on the pack if someone in the company thinks there's a chance of contamination. There's always other products to choose from so I don't take the chance. Walkers crisps have given me a reaction, yes even the sodding ready salted ones It's something to do with their production processes. I think Gary Lineker may dance through the factory each week spreading handfuls of flour for good luck. Whatever, I now avoid them. My energy levels improved over a few months after the diet. It took longer the second time after my challenge. I was still noticing improvements / weird resolutions of odd symptoms up to 9 months to a year later... Lots of good advice here: All the best! Matt

Ah.... Settles back, dons funny hat, smokes pipe, plays violin, injects heroin etc... I think you need to treat yourself as your own science experiment. If you're ok at home with all of the drinks then you can almost certainly rule out alcohol intolerance and thank your bodies burgeoning super coeliac powers of gluten detection for the reaction. Clearly your powers have grown in the past five years young jedi... In which case maybe there's a drink you can order which would reduce this risk, maybe asking for the bottle and a clean glass, forgoing ice, straws etc, anything to simplify matters and reduce the number of contaminant variables. One thing I'd avoid would be 'mixers' from the shared line. Not because there's gluten filled drinks going through them, typically its just coke, lemonade and soda water, but because the nozzle sometimes dips into the drink that's being filled. Paranoid? Maybe, but I avoid them now and pay the extra for a bottle. A word on glasses. Most bars have a dedicated glass washer and they're good, to a point. I've worked behind a bar in the past and the washers are only on for a very short time, they can run up to 35 times an hour... I've seen lipstick on glasses from them and whilst the chances of contamination are probably slight... Now if you're out for a night at different places, it will be very hard to work out where its happening. So my suggestion is to go out to one bar only and pick a decent one. Speak to a bartender or manager, explain to them just what a special snowflake you are and get one definitely clean glass at the outset then keep it for the evening and just get it refilled. Pick one drink only and stick to it. I'd suggest wine as maybe its easier on the stomach than the bubbly prosecco and you can get the little bottles without any chance of contamination but that may be nonsense See what happens... If you're ok, then you have an answer. You've become more sensitive and your reacting to trace gluten. *removes funny hat, discards pipe, hides syringe...

This seems odd. No SIGNIFICANT villous blunting. Was there mild villous blunting? Increased intraepithelial lymphocytes?

Ugg, tell me about I thought I had bad gut bacteria for years. Carbs would just make be bloat and distend, sugars, rice, any kind of grain. Figured out in Feb, it was UC and that the sugars in carbs caused flare ups....I realize I am blessed I can nuts, I eat nut based breads, muffins, cakes etc, using stevia, monk fruit, and xylitol for sweeteners since they do not trigger the flare ups. >.> I am also addicted eating sugar free jams made with extracts, and a universal pectin that reacts with calcium water instead of sugar so I can use monk fruit to sweeten. (Cheaper to make this for my fruit cravings to buying sugar free jams) I also found a noodle by miracle noodles that is carb free they also make a rice sub...I use them in recreating dishes I used to eat all the time. NOTE the fiber in them is not tolerable to some people. But might look into it as a alternative. I think I did a post not to long ago about different forms of noodles and how to make them or get them for those with similar issues one of hte more intiruging ones is using eggs or egg whites mixed up and cooked on low eat in a pan into a thin sheet then cutting into noodles or using nordic wear microwave plates to make them. .....I recently found you can mix konjac flour, eggwhites, and hemp protein, up pour into one of those plates and cook into a tortilla. check my profile for my food issues lol list is huge, at least you can eat meats?