Despite the explosion of gluten-free offerings at supermarkets, big-box stores (half of gluten-free shoppers buy their products at Walmart, a February 2011 Packaged Facts report found ), and health food stores, celiac patients still find themselves endlessly double-checking ingredient lists. Many call companies to learn if they've paid meticulous attention to preventing potential cross-contamination in the field, during transportation, during milling, and properly washed down equipment that handles foods containing gluten before they do any gluten-free runs.
Maria Monteverde-Jackson, 40, of Arlington, Va., recently diagnosed with gluten sensitivity, expressed frustration about gluten-free food packaging.
"The biggest challenge I have found is there is no consistency in the labeling. There is no symbol that all the products use," said Monteverde-Jackson, who went gluten-free about six weeks ago.
Summit co-organizer John Forberger, of Merchantsville, N.J., said companies may seek voluntary certification from the Gluten Intolerance Group's Gluten Free Certification Organization (GFCO) or from the Celiac Sprue Association (CSA) that their products contain less than 10 parts per million of gluten.
Other companies label their products gluten-free based on their own good-faith standard. Still others may state on packages that their products contain "no gluten ingredients." But this hodgepodge approach doesn't provide much security for patients like him or Monteverde-Jackson.
Forberger said his severe gluten intolerance manifests as painful attacks of pancreatitis that occur within 30 minutes of ingesting any gluten. A triathlete who has followed a "paleo diet" of meat, fish, fruits and vegetables for several years, he regrets the day last October that he decided to try a couple of Snyder's of Hanover pretzel sticks in a brown bag bearing the words "gluten-free" in a big blue circle on the package.
"The next thing you know, I had stomach cramping," he said. He ended up hospitalized for three weeks. Although Snyder's obtained GFCO certification for its gluten-free pretzels in April 2010, and produces its pretzels to have no more than 5 ppm of gluten, Forberger said he's been contacted by some others who, like him, became sick after eating the pretzels, and says he wished he hadn't veered from his no-starchy-carbs diet.
While it's possible the pretzels might have contained some trace of gluten, activists active in the blogosphere have said Snyder's sought gluten-free certification in good faith. That can't be said for Paul Seelig, sentenced by a North Carolina judge on April 12 to an 11-year prison term for knowingly misrepresenting Great Specialty Products bakery goods as gluten-free.
Among the dozen sickened was Zach Becker, who had recommended Great Specialty foods on his Gluten Free Raleigh blog for two weeks before developing a blistering, bleeding celiac rash called dermatitis herpetiformis.
In a statement he read before the judge sentenced Seelig, Becker said the lack of an FDA standard for what constitutes a gluten-free product "has left the gluten-free community vulnerable to fraudulent companies like Great Specialty Products."