No Rest Until Gluten-Free Means Celiac-Safe

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This is how I feel sometimes when someone says what they offer is Gluten-Free. 

Sometimes is seems the cause of Celiac Disease takes one step forward and two steps back. The FDA has finally listened to our cries, and declared a definition for "gluten-free."  But a manufacturer doesn't have to send test results to the FDA before placing that on a box, so we still have to investigate every product, and be the ones to tell the FDA that something is wrong. Eateries say it all the time about items on their menu that are made in shared kitchens without proper precautions. It leaves me wanting to say a few choice words that aren't fit to be said in public.

We've been trained to read labels. We know the words for gluten in all it's forms - wheat, rye, barley, malt, farro. We've relied on the label to keep us safe. Some manufacturers sometimes print "may contain" statements on packaging, which the FDA also doesn't regulate. Sometimes I feel that for all the extra information, we're still in the dark. I hate the dark.

Case in point. Sami's Bakery. If you're unfamiliar with them, they are a bakery in Florida that makes bread and crackers with Millet and Flax. If you were to read the ingredients label, there are no ingredients that would signify gluten. Safe, right?

Tricia Thompson of Gluten Free Watchdog originally had their products independently  tested back in 2011. At that time they tested in the THOUSANDS of parts per million. At that time, Sami's included the disclaimer that the bread  "Contains traces of gluten, wheat or yeast." Tricia worked hard to bring about awareness, and let everyone know that these products were unsafe to eat if you have Celiac Disease. She alerted Sami's Bakery about her test results as well.

And here we are in 2016. Five years later and we're still fighting the same battle. Tricia tested these products again, and they averaged 70,000 PPM OR MORE per sample. Sami's replied they "changed our disclaimer in March of 2016 to “Contains Gluten, Wheat and Yeast”. We also make it known to our customers that if they have a wheat allergy, sensitivity to gluten, or are celiac, NOT to consume our products.”

It's not enough. I just went to a cafe this past week that uses their bread exclusively for their gluten-free sandwiches. I know of a 100% gluten-free health food store that was selling this bread up until this information was shared with them. (Within 24 hours they have decided to remove the products from their store, and alert everyone on their email list.) I'm knowledgeable and keep up on latest research, trends and connect with dietitians. Not everyone has that same knowledge base though. How many are eating things that they shouldn't because we trust the term "gluten-free?"

It's made me wonder recently if I should only eat things that are certified gluten-free through a third party organization. I know it's  expensive for small mom & pop places to go that route, but provides extra security that products have been tested by an independent, neutral lab that gets no kickbacks or financial benefit from their result findings. (This being said, one of the organizations had an issue with their certification labels, so we still have to be vigilant.)

This is why Tricia Thompson and Gluten Free Watchdog are so important. I'm so in awe of how tirelessly she works to keep the Celiac Community safe. If you don't already subscribe to her service ($5/month) I highly suggest doing so. (And she's not paying me to say that either.) I realize through this situation how much she truly puts her neck on the line. We need more people like her.

WE need to be those people. We need to graciously educate restaurants, health-food stores and manufacturers. We need to approach concerns in private so real conversation can take place. We need to report troubling issues and concerns to the FDA. We need to band together to work for a cure, be a resource in our communities, and not rest until "gluten-free" means "celiac-safe."

Now pardon me as I contact another company being carried in another health food store that I'm certain is made in a shared facility without proper precautions. Serenity now.