What I'd like to See on Gluten-Free Labeling

COMMENTARY | With a household of people with celiac disease and wheat allergies, food labels are very important to us. My children become deathly ill when they consume wheat, and one has celiac disease, so we have taken to gluten-free foods as an alternative. So, you can imagine our surprise when we discovered we were still getting sick and having symptoms that come with consuming wheat and gluten products.

My youngest became the most sick, with severe eczema and skin sores that ooze and bleed, diarrhea, abdominal pain and severe fatigue; she is only 3 years old. A closer inspection of the foods we were eating, along with a visit to the doctor, revealed to us that many packaged foods labeled "gluten-free" actually contain gluten or wheat products.

The tricky thing about issues such as wheat allergy is that different people respond differently. My immune system may need a higher amount to have a reaction, where my daughter can have a huge reaction to food that was simply cross-contaminated. This means if the gluten-free foods we buy and eat are made in a factory with foods that process wheat, she can have a reaction.

But the food labels aren't clear on this sort of issue. They are also not clear on how much gluten can still be in the product and still have a label that reads "gluten free".

The Food and Drug Administration is taking its time about setting a standard for gluten-free food labeling and I, for one, think it is long past due. I want to see more guidelines put in place, as was due in August 2008 under the Food Allergen Labeling and Consumer Protection Act (FALCPA).

What I'd like to see on gluten-free labeling is clear, honest labeling that we can believe in. My children trust me to be able to provide them with food that will not make them sick. I am at the mercy of the manufacturer when it comes to reading labels, calling phone numbers, researching preparation methods and trusting what they say is true and the food is OK for us to eat.

The FDA also needs to assess the proposed gluten standard of 20 parts per million. If you have ever had to shop for food with no wheat in it, you can understand the frustration that comes with improper labeling. Forget on-the-shelf breads; you cannot eat most cold cuts and deli meats, many salad dressings and thousands of other foods that go on the no-no list. It's really a challenge, and when we see foods labeled "gluten-free," we want to trust this. We should feel relief.

But to discover that the "gluten-free" label does not actually mean 100% gluten-free is more than a disappointment. You're playing with people's lives, my children's lives as well. The FDA needs to move into action today and set proper standards for labeling and then hold these companies accountable.