Going Gluten-FreeMay 16, 2012

Can't We All Get Along?

Comments (5)

Posted by Alicia Woodward

There’s a lot to be accomplished in the gluten-free community -- but we’re busy squabbling among ourselves.

If you’re like me, you’ve been watching the hurricane of attention and emotion swirling around Domino’s Pizza’s announcement that it’s now offering gluten-free pizza. The controversy stems from Domino’s designation of “gluten free”—what exactly does that mean in this case? Domino’s is using gluten-free crust, but the pizzas aren’t being prepared in designated clean areas. Any celiac knows that the risk of gluten cross contamination in any pizza shop is off-the-charts high if safety accommodations aren’t in place.

Domino’s enlisted help from the National Foundation for Celiac Awareness (NFCA), which  created an "Amber" designation for the pizza chain. This means Domino’s pizza is okay for those avoiding gluten due to mild gluten sensitivity or non-medical reasons (to lose weight, for instance), but it’s definitely not okay for those with celiac disease.

In a world where eschewing gluten is fashionable and even faddish, we’re going to see more of this type of loosey-goosey designating. Something similar has already been occurring in the gluten-free marketplace with some companies slapping the GF label on products to boost sales. (FDA’s long-anticipated GF labeling standards will soon address this problem, I hope.)

At best, what’s happening at Domino’s is confusing. At worst, it’s dangerous.

But all that aside for the moment. Consider this. In the United States, there are five – yes, five – national non-profit organizations that represent the gluten-free community. Scratch around a little and you’ll find that they all basically share a similar mission: to help the celiac and gluten-free community. Can they get on the same page, work together and unite with one voice to push forward an agenda that brings about positive changes for us? It just isn’t happening.

This is Celiac Awareness Month and it’s also National Food Allergy Awareness Week. Several days ago, the country’s two leading food allergy nonprofits – FAAN and FAI – got together to announce they are merging. For 15 years, these two giants have held a shared mission, similar to our five national celiac groups. According to FAAN’s press release, the two are now becoming one organization so that they can lead the charge…

“to find a cure for food allergies and to support all families who live with this life-threatening condition day in and day out.”

Can you hear my applause?

It will be fun to see what these two will accomplish now that they literally are on the same page and working together. Just imagine the progress – a sustained spike in research, advocacy, support and outreach, policy changes, public awareness, etc. 

I hope for this kind of cooperation in the gluten-free community one day.

Comments (5)

I get offended sometimes when people stress celiac vs gluten intolerant. There are so many of us who for years had all of the major symptoms like anemic, stiff achy joints, gaining weight, eating little, severe stomach aches, diarrhea, vomiting, CFS, yet doctors kept saying IBS. Finally some of us determined that it was gluten that was making us sick and continue to make us sick, if we get accidently glutened. Some of us are classified as gluten-intolerant only because doctors refused to believe us until it was too late to do testing.
I was accidently glutened a couple days before an appt with an endocrinologist. He ran tests and said my antibodies had jumped since the first test. Decided to wait to do a colonoscopy because I had had one 6 years ago, where no biopsy was done. He changed the diagnosis to Celiac, but the PCP changed it back to gluten-intolerant.
If I get glutened, my severe stomach aches, vomiting, diarrhea lasts up to 12 hours and I feel weak and nauseous for the next 3 or 4 days.

Posted by: Msleelowe | September 2, 2012 2:17 PM    Report this comment

Unknown, that is exactly what the problem was, Domino's stated it was certified gluten-free, but not safe for celiacs. The certification they were referring to was the online certification classes their organization took through NFCA (National Foundation for Celiac Awareness).

Meanwhile, onward and upward! I hope this nudges the FDA to act immediately on the gluten-free labeling laws.

Posted by: Gluten Free Recipe Box | May 22, 2012 7:43 PM    Report this comment

I think the Domino effect (pun intented) here had more to do with the fact that most of us never heard of the Amber alert, which in my neck of the woods is a an APB or BOLO for a missing child, not a warning that something has minimal gluten. I think the Amber alert concept, with regard to gluten is dangerous and should be discontinued, putting aside using the police name. It will give the food industry an out...sticking a label on a product without being careful. It undermines the need for truly gluten-free products and services. The person who doesn't worry about reacting doesn't need their own category. They just have to be careless, to put it bluntly.

I'm finding it more common now, to be asked in restaurants if I am gluten-free by choice or by allergy. Interesting phenomenon.

The second issue is the impact that the non-celiac or those who can cheat have had on industry. They make up more of the gluten-free market than we do, and drove the industry to produce many more gf products. For this, we actually have to be grateful. Our organizations did all the work...but the non-celiacs or less effected, beefed up the market, when they bought the stuff. We couldn't have done it without them.

Unfortunately, I continue to meet gf non-celiacs or people who can cheat, who put me down and make it sound like I'm making a big deal out of nothing. After all, they can cheat and not get sick, they say. (And then they are offended when I won't eat what they cook!) It doesn't help when public figures say they've gone gluten-free to lose weight or other personal rationales, right or wrong.

NFCA stepped into the middle of all that. Over the years, I've seen some really good articles about who needs to be gluten-free and who wants to be. Our organizations and magazines need to do more publicity on that angle, to minimize the confusion. And of course, we must continue to advocate together for meaningful labeling and testing laws.

Posted by: Linda G | May 17, 2012 11:31 AM    Report this comment

Unless it is Certified Gluten Free, don't trust the claim that it is; the manufacturer may only be saying the ingredients fundamentally don't contain gluten, but, they make absolutely no guarantee that the ingredients from the supply chain, or from handling in their own facilities are free from cross-contamination.

Posted by: M P | May 17, 2012 11:23 AM    Report this comment

Thank you for raising this issue for discussion, and I completely agree with your thoughts. In this tough economic environment, more and more non-profits are realizing that those who share a common mission or purpose are actually stronger together than as separate entities fighting for a piece of the same puzzle. The gluten disease spectrum is expanding and more individuals are looking to join the gluten free movement and push for more advocacy, research, support, and policy change. Recently diagnosed with gluten sensitivity (after more than 10 years of illness and health problems, I'm excited to see the Celiac and gluten free world embracing those of us who are in this "middle ground" of gluten conditions. I'm a licensed attorney and military spouse and have considered starting an organization that helps military families live the gluten free life. My husband and I have lived in four cities in three years and it's difficult to know where to shop and eat, and to find other gluten free individuals in the community. After much consideration, I decided that starting another standalone organization will make it more difficult for my organization to succeed, and I'd be joining the list of stand alone organizations fighting to survive. I hope to use my passion, talents, and skills to further the work of organizations that are advocating and supporting those with gluten conditions. I think my efforts will be better spent strengthening the existing movement by encouraging collaboration and partnerships. Thank you for bringing this issue to light, and please continue to build bridges within the gluten free community.

Posted by: Mary R | May 17, 2012 10:08 AM    Report this comment

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