As World News Tonight with David Muir reported on May 19, 2021, Jax Bari (age 8) has been advocating to attain two primary goals for the 3 million American Celiacs: 1) increasing Federal funding for Celiac Disease research, and 2) requiring that Gluten be labeled on all packaged foods in the US, just like it is in 85 countries around the world including in Canada and across Europe.
It Takes a Village - One Giant Step Closer to Reality
On August 4, 2021, Jax's labeling goal became one step closer to reality thanks to the introduction of the Food Labeling Modernization Act of 2021 ("FLMA") by Senator Richard Blumenthal (D-CT), Senator Sheldon Whitehouse (D-RI), Senator Ed Markey (D-MA), House Energy and Commerce Committee Chairman Frank Pallone, Jr. (D-NJ), and House Appropriations Committee Chairwoman Rosa DeLauro (D-CT).
We are thankful for the tireless work of those who have also advocated for the introduction of the FLMA introduced including from the National Celiac Association, Center for Science in the Public Interest ("CSPI") and Gluten Free Watchdog. We are grateful to Michael F. Jacobson, Ph.D., Co-founder and former Executive Director, CSPI, for his organization's foundational work on the Food Allergen Labeling and Consumer Protection Act ("FALCPA") of 2004.
According to Tricia Thompson of Gluten Free Watchdog,
“The FLMA is a game-changer for Americans with Celiac Disease and other gluten related disorders. Requiring labels to declare all gluten-containing grains in FDA-regulated foods will give consumers information they need to safely choose products for their medically-prescribed gluten-free diets. Without the FLMA, these consumers remain at risk of unknowingly ingesting foods that are unsafe for them.”
According to Jon Bari, founder of Celiac Journey and the father of Jax Bari,
"Unlike the current Food Allergy Labeling and Consumer Protection Act labeling scheme for the top 8 major food allergens, Gluten Free labeling is permissive and not mandatory in the U.S. In other words, whereas sufferers of the current top 8 major food allergens currently rely on what ingredients are included in required labeling disclosures on all packaged foods, Celiacs must rely only on what ingredients are excluded in voluntary Gluten Free labeling disclosures on select packaged foods."
Eating Without Fear is Our Hope - Food insecurity for Celiacs Happens Everyday
Jax's letter to President Joe Biden is an 8 year old's plea for help to the President to share his lived experience and that of 3 million Americans -- "Eating without fear is our hope. Food insecurity for Celiacs happens everyday" because of the constant threat of cross contact with Gluten, 80% of foods have Gluten in them, and Gluten is not required to be labeled on packaged foods in the US like it is in Canada and Europe. In other words, food insecurity is the everyday life of any Celiac patient, no matter his/her age or socio-economic status.
"What is food to one man may be fierce poison to others." -- Lucretius (c. 99 b.c.e.- c. 55 b.c.e.), Roman poet and philosopher
Food Insecurity at the Four Seasons - A Cautionary Tale for Why the Labeling Gluten Must Be Required
On August 16, 2021, we ate the Four Seasons Silicon Valley at East Palo Alto. Upon arrival, we informed the waiter and the manager that Jax has Celiac Disease, and that he can only eat Gluten Free food. Jax ordered pasta and fries (which we understood would be made from fresh potatoes and either prepared in a Gluten Free fryer or baked). After the fries were served, my wife's sixth sense went off since she noticed that there appeared to be some type of coating on the fries. At that point, she told Jax not to eat any more of the fries. We double checked again with the waiter who checked again with the chef, and we were assured that the fries were in fact Gluten Free.
Unfortunately, Jax became very sick within a few hours of eating at Quattro, and it suggested that he was Glutened (i.e., ingested food that contained Gluten). When we reported this to the hotel the next morning, we asked that the hotel provide us with all of the ingredients which were used in the food that Jax ate. We were sent images of the package of pasta (which was clearly marked Gluten Free), but we were surprised when we were sent a photo of the package label from Sysco frozen fries (since we thought that the fries which we had ordered were made from fresh potatoes). Upon reviewing the package label on the fries, we found that it was not marked Gluten Free, and the package did not say whether Gluten was an ingredient or not. Rather, the package was just marked wheat-free, and because of that, and the absence of a Gluten disclosure on the label, we were informed that the chef had assumed that this product was in fact Gluten Free. We were also informed that the hotel had followed safe prep processes to avoid any cross contamination in the kitchen.
Putting aside that Jax was not served fries made from fresh potatoes, this appears to have been an unfortunate real world example of how the clear labeling of wheat under the FALCPA, in fact, had the perverse effect of harming those, including Jax, who must avoid Gluten. Whereas a Gluten Free product always is wheat-free, the reverse is not true. In this case, the chef assumed incorrectly that a wheat-free product is Gluten Free and based on Jax's reaction, it appears that the fries contained Gluten. That is why we need Gluten labeled on all packaged foods in the U.S. with the FLMA.
According to Senator Blumenthal,
"This [FLMA] bill will bring much-needed clarity to food labels so Americans can make informed, healthy decisions for themselves and their families. Current labels are a confusing maze and fail to provide important, useful information to consumers. The Food Labeling Modernization Act will ensure serving sizes are updated, allergens are clearly labeled, and nutritional information is transparent, giving people the tools they need to make healthier choices and avoid misleading, deceptive pitches and promotions."
According to Congresswoman DeLauro,
"The Food Labeling Modernization Act will give food labeling requirements an important and long-overdue overhaul. Food labels should give a clear, accurate, and fair representation of the product, and that is just not the case right now. This common-sense bill would provide more information to consumers -- information that is vital as people make choices about what food to buy for their families."
In the spirit of health equity, social justice, equal protection under the law and the Human Right to Adequate Food, it is time for the Food Allergen Labeling and Consumer Protection Act (FALCPA) to be amended to require that Grains Containing Gluten (i.e., Wheat, Barley, Rye or Oats, collectively "Gluten") be labeled on all packaged foods in the U.S., just like it is in 85 countries worldwide, including across Europe and in Canada. The FLMA's requirement to label Gluten will be accordance with the legislative intent and the original language for the FALCPA. By requiring that Gluten be labeled on all packaged foods in the U.S., this will better protect an estimated 23 million Americans including: 3 million Americans who suffer from Celiac Disease (including my 8 year old son Jax) and 20 million Americans who have Non-Celiac Gluten Sensitivity.
In addition to the National Celiac Association, Center for Science in the Public Interest and Gluten Free Watchdog, the Food Labeling Modernization Act is supported by Consumer Reports, Environmental Working Group, Celiac Disease Foundation, Beyond Celiac and Gluten Intolerance Group.
Resources
Press Release - Food Labeling Modernization Act of 2021, August 4, 2021 "Pallone, DeLauro, Blumenthal, Whitehouse, and Markey Introduce Food Labeling Modernization Act"
Food Labeling Modernization Act of 2021 Bill Text - See Sections 8 and 9
Fact Sheet - Food Labeling Modernization Act of 2021 - Center for Science in the Public Interest, August 4, 2021
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