2005N-0279 Food Labeling; Gluten-Free Labeling of Foods; Public Meeting
FDA Comment Number : EC163
Submitter : Mrs. Ann Hewitt Date & Time: 08/24/2005 05:08:46
Organization : Mrs. Ann Hewitt
Category : Individual Consumer
Issue Areas/Comments
Thank you for considering gluten-free labeling and for seeking comments.

Since my son and I have celiac disease, 'gluten-free' needs to mean completely free of gluten or zero parts per million. If things are labeled gluten-free that actually contain small amounts of gluten, we will get sick but will not know what the offending food is if all the labels state the same thing but do not mean the same thing.

The way I currently identify foods not containing gluten is through lists provided by the Celiac Sprue Association, Hy Vee and Wild Oats. For items that do not appear on these lists, I look at the label for suspect ingredients. If it looks like the item might be gluten-free, I call or email the manufacturer to make sure. I contacted at least fifty manufacturers the first year after I was diagnosed. I shop at two stores every week and order food from a food coop once a month. I spend a total of about three hours a week shopping and researching what to purchase.

In addition to digestive reactions to gluten, I also have a skin reaction when I touch gluten. Because of this and because I do most of the food preparation for my family, I do not have anything in my home or car that contains gluten. My family members who do not have celiac disease eat gluten-free foods every time they eat at home. They do eat foods containing gluten about once a week when they eat out. My husband works from home 95% of the time so is usually eating at home. Everything that I purchase is free of gluten, but only about 5% of my purchases are marked 'gluten-free' on the label. Usually these are breads, cereals, crackers, cookies, pasta and pizza from the health food store, and I buy limited amounts of these items. I try to buy as much as I can from the regular grocery store. There are many gluten-free foods I can purchase but most are not labeled as such.

'Gluten-free' on a label means I don't have to research the item to know that it is safe. Unless I see an item on a gluten-free list or contact the manufacturer, I don't buy the item. I have a higher trust when the label states 'gluten-free' because recipes and formulations change all the time. A product I researched two months ago may have changed and may not be gluten-free today. If a product is labeled gluten-free, I feel certain that it is free of gluten.

For me, the only foods I can buy are those with no gluten. Level A, B and C ratings would only be helpful to me in eliminating my ability to purchase those with small amounts of gluten. I fear for those who have not had clear teaching about celiac disease and think they would be fine eating small amounts of gluten. Their length and quality of life will be compromised.

In addition to gluten-free labeling for foods, it would be very helpful to have gluten-free labeling on health and beauty products and prescription and non-prescription medications. Because there is less information and more confusing ingredients, I spend ten times as much time researching these items as I do researching foods.

Again, my thanks for working toward helpful labeling. Please provide labeling that will help those of us who live with celiac disease every minute of our lives to have truthful information easily provided on all labels.

Ann Hewitt