2005N-0279 Food Labeling; Gluten-Free Labeling of Foods; Public Meeting
FDA Comment Number : EC1209
Submitter : Ms. Diane Reynolds Date & Time: 09/20/2005 05:09:36
Organization : Ms. Diane Reynolds
Category : Individual Consumer
Issue Areas/Comments
I am grateful to the FDA for investigating the issues of defining 'gluten-free' and getting food manufacturers to label products that are gluten-free. These are very critical issues to me as I am still strugglling to find foods that I can digest.

Last year, at the age of 23, I was diagnosed with celiac disease (after a mis-diagnosis of IBS). By the time of my diagnosis, I was enemic, had osteopenia and had sustained serious intestinal damage. I was advised that the only course of treatment for celiac disease is a lifetime of eating only gluten-free foods. As I struggle to recover, I face the constant challenge of finding gluten-free foods, as they are not identified and/or available at most grocery stores.

What MUST 'gluten-free' mean for someone with my condition? 'Gluten-free' MUST mean that the food is free of all wheat, rye, barley, oats and any foods (soy sauce, spices, flavorings, etc.) that are derived from those grains. The label should also state if the food is processed in a plant that also processes those grains. Small amounts (even trace amounts) cause set-backs in my healing process, as evidenced by physical discomfort and blood test results.

It is very diffiuclt to identify food that does not contain gluten. Even some meats and poultry are bathed in solutions/marinades that contain gluten, but this is not clearly disclosed on the label. Most grocery stores do not carry lines of gluten-free products. Mainstream food products rarely carry a 'gluten-free' label. If the ingredients in a product (such as peanut butter, spaghetti sause, soup, cheese, yogurt, etc.)appear to be okay, I must the call the food company on my cell phone to ask if that particular product with that particular bar code is gluten-free. If the customer service representative seems uncertain, I do not trust the reply. Even when the reply is that the product is gluten-free, the customer service representative states that I must call every time I want to purchase the product as the company reserves the right to change the source of the ingredients at any time without changing the label. That is why each shopping trip takes hours as I have to call most food companies every time I shop! I typically spend $40/week at mainstream grocery stores and most of the food I eventual feel safe in buying (after calling the food company) is not labeled gluten-free.

In addition, every week I must shop at various small, natural food stores throughout my metropolitan area and even into the next state to find basic foods (cereal, pasta, bread products, soup, prepared meats, etc.) and vitamins which have the gluten-free label. I spend at least $60 per week on these items as they cost much more than 'regular food.' So in addition to my $100 total weekly food bill (for just one person!), I must travel an extra 20-40 miles per week to find food that I can digest.

The lack of gluten-free labeling also makes it difficult for my workplace cafeteria and restaurants (frequented for work events or pleasure) to identify which (if any) foods I can consume. This makes it very difficult for me to participate in professional seminars/conferences that span a meal period.

Having the 'gluten-free' label on products would make coping with my disease much easier and less expensive (in terms of travel time and expense, plus work time lost due to illness from accidental ingestion of gluten). With the FDA's urging, I hope more food companies would commit to placing such labels on their products. I am sure thousands of us celiacs would rush to buy those products!

Thank you,
Diane Reynolds