Navigating a gluten-free life
About 14 years ago, when our youngest child was 6 months old, my husband was diagnosed with celiac disease. He was very sick and had lost more than 20 pounds in a few months with constant diarrhea. I am a registered dietitian, and at that time had been working about 10 years but knew very little about celiac disease or the gluten-free diet. There was a lot to learn.
I learned as much as I could about eating gluten-free, and he slowly got better. I cried the first time I went grocery shopping. Back then, it was impossible to tell if most foods contained gluten. I relied on celiac disease support groups more than professionals because they had more information.
He is perfectly healthy now and stays on his gluten-free diet. It amazed me how well the gluten-free diet worked. There are a lot of things in nutrition therapy that we try; some work and some don’t. The gluten-free diet really works.
In 2006 the Food Allergen Labeling law improved things dramatically. Wheat now had to be listed on all labels in common terms. Gluten comes from wheat, barley and rye. The word “wheat” must be listed either in the ingredients or in a “contains statement.” Before this, if food starch was listed on a label there was no way to tell if it was from wheat or a gluten-free grain such as corn. Barley and rye did not fall under this law, so it still cannot be easily identified on labels.
The FDA set a deadline of 2008 to set a legal standard for gluten-free labeling. However, 2008 came and went with no standard. The term “gluten-free” on labels was not legally regulated.
Finally, this August the U.S. Food and Drug Administration (FDA) published a ruling on gluten-free labeling. The law does not go into effect until August 2014. The law states that all foods under FDA labeling must meet a standard of less than 20 ppm (parts per million) of gluten to be labeled “gluten-free.” This includes gluten that may get into foods through cross contamination, such as at the manufacturing plant. This is a huge step forward for the United States as this same standard has been used in European countries for years. Now, we can finally trust that a food labeled gluten-free really is gluten free.
Restaurant eating is the next step forward. Though many restaurants have gluten-free menus, cross contamination is still a big risk.
About the Author
Carrie Ek, registered dietitan/nutritionist, has worked at Advocate Lutheran General Hospital for over 20 years. She works with children and adults with celiac disease as well as other needs for nutrition counseling. She is also the coordinator of the newly opened Pediatric Celiac Disease Center at Advocate Children’s Hospital.