A Syosset family is pushing for stronger protections for people with celiac disease — beginning with mandatory gluten warnings on packaged foods and restaurant menus.
Staci Leibson and her 11-year-old son, Jude, joined Nassau County Executive Bruce Blakeman this week to call for clearer labeling. Jude was diagnosed with celiac disease three years ago, and said the condition affects nearly every part of daily life.
“Celiac is every bite, every day, and it’s hard,” Jude said. “If I eat even a crumb of gluten, I would probably be out of school for a week.”
Celiac disease is an autoimmune condition in which the body reacts to gluten, a protein found in wheat, barley and rye. Even trace amounts can cause severe symptoms and intestinal damage. More than three million people in the United States are estimated to have the condition.
For families like the Leibsons, the challenge is knowing which foods are actually safe.
“M&Ms are a perfect example, because nothing in the ingredients says there is gluten in them,” Staci said. “But since they aren’t labeled and are not required to be labeled, I’m not sure if Jude can eat them. It’s a big grey area, and that’s a big problem.”
Under current federal rules, only wheat must be highlighted on packaged food labels. Barley, rye and oats — which can be just as dangerous for people with celiac — can appear in ingredient lists without any special warning. Advocates say that leaves families uncertain and forced to scrutinize every item they buy.
The legislation the Leibsons are supporting would require restaurants and food producers to clearly label foods containing all sources of gluten. Supporters note that many other countries already mandate this type of labeling, and say a nationwide policy would make dining out and grocery shopping far safer.
The Leibsons hope that what started with a small press conference will eventually lead to big changes.
Top: Jude Leibson, 11, who has celiac disease, is flanked by Nassau County Executive Bruce Blakeman (background) during this week’s press conference in Mineola, at which Jude and his family is pushing for stricter gluten labeling standards in the U.S. (Credit: GLI/Andrew Rappaport)
