2005N-0279 Food Labeling; Gluten-Free Labeling of Foods; Public Meeting
FDA Comment Number : EC12
Submitter : Mrs. Starr McGettigan Date & Time: 08/03/2005 02:08:11
Organization : Mrs. Starr McGettigan
Category : Individual Consumer
Issue Areas/Comments
I am the mother of a five year old boy with Celiac's Disease. While I do not represent a body of research data or findings, I would like to offer my comments regarding questions #9 and #10 from Section III, Subsection E (Consumer Purchasing Practices). When my son was first diagnosed, I spent hours and hours of my time researching ingredients that were safe for him to consume and those that were not. Unfortunately, there are several ingredients that can be safe or unsafe (i.e., Natural and Artificial Flavorings, Modified Food Starch, Gelatin, etc..) Most of these questionable ingredients are in most processed foods today. I spend at least 10 hours a month on the Internet in search of acceptable alternatives to "kid favorite" foods. I rely mostly on established Gluten-Free supply sites that have maintained a reputation within the community as having a zero tolerance for cross-contamination and that perform consistent testing of product lines. While the Internet does open a whole new source of food for my son, I do incur large costs for shipping items (especially bulk bread mixes and frozen items).

At least once a month I drive approximately 60 miles to the closest organic/natural food store chains (Whole Foods and Trader Joes). While I do have 2-3 small natural food stores near my home, the larger chains offer a better variety of Gluten-Free products at a considerably lower cost. These larger store chains also offer Gluten-Free product listings. While I still need to double check the ingredient labels, the GF product listing offers me a place to start. The time it takes to shop at my local grocery store has also increased. I need to verify the ingredient list on any new product that I am buying and compare it against the ?safe? product listings I use. I also need to periodically verify the ingredients foods we currently use in case the manufacturer has changed something. The new labeling for the 9 major allergens (including wheat) has helped some in my search for foods; however, the new labeling still does not list rye, barley, or oats. If a product is in question, I must note the name of the product, specifically the type and flavor and also the bar code (UPC). I am then required to verify the presence (or lack) of Gluten with the manufacturer. While most manufacturers are very helpful, I often have to rely on information from a customer service representative that has never heard of Celiac Disease or Gluten. I have often not purchased products because the customer service representative was not confident in their answers to my questions. Even ?safe? foods need to be verified in this manner on a periodic basis.

Even given all of this searching for the safe foods, I still make several things myself. In many instances, I am just not confident in ingredient listings or the customer service representatives knowledge of the ingredients. I can not afford for someone else to make a mistake or be careless in their review of ingredients. My son and I have a rule, ?When in doubt, don?t!? If he is not sure, he doesn?t eat it and if I am not sure, I don?t buy it.

Lastly, I always purchase an item labeled Gluten-Free over a similar `safe? item regardless of cost. I can not describe to you the relief I feel when an item is labeled Gluten-Free. I would be equally pleased with barley, rye, and oats being added to the new allergen labeling. I love my son very much and take full responsibility for his care. I am not looking for a solution that puts all of the responsibility on the manufacturers, but there must be an easier way. If the FDA and the food manufacturers could give me the tools I need (i.e., clear labeling of wheat, oats, barley and rye) it would make a world of difference in my life.

I greatly appreciate the opportunity to provide my comments to this meeting. I also appreciate that this meeting and the previous meeting (acceptable levels of gluten) are even taking place. Thank you.