2005N-0279 Food Labeling; Gluten-Free Labeling of Foods; Public Meeting
FDA Comment Number : EC1467
Submitter : Mrs. Robin Rubinstein Date & Time: 09/20/2005 06:09:50
Organization : Mrs. Robin Rubinstein
Category : Individual Consumer
Issue Areas/Comments
With 4 out of 5 members of my family with Celiac Disease, one being a "brittle Celiac", Gluten free needs to be totally devoid of any gluten: wheat, rye, oats & barley. Gluten poisoning has almost claimed my daughtrer's life twice from products that were "gluten free". I call companies when I question their ingredients. Every shopping trip requires at least two phone calls. Most companies are on the east coast which makes it challenging for west coast consumers (time difference). I can spend at least one hour on the phone trying to get information about true gluten free ingredients and processing. In a store, where one would spend about 15 minutes shopping, I spend about 1 hour to and hour and a half for the same few products - checking ingredients, calling companies, etc. Many problems arise from the processing and packaging and not just the ingredients themselves. That is also a SERIOUS problem. Even though a prescription medication is gluten-free, when it is sent on a floured belt or coated with a gluten-ladened starch to keep it from sticking - this gluten free medication becomes a poison. Of all the food I buy, about 20% have a gluten-free labeling. Whole foods Market just came out with an entire Gluten free line. I'm currently calling them to check their actual gluten content. I need to check even companies that claim their products are gluten free because cross contamination is a serious problem. In addition, many companies do not label their source for modified food starch (ie wheat, corn or tapioca) An example of dealing with companies that make gluten ladened and "gluten-free" products was when I was told by Met RX, makers of Balance Bars that certain bars were gluten free, one of their "gluten free" bars sent my daughter to the hospital. Upon notifying them, I was told that a certain amount of gluten is allowed to receive a "gluten free" classification. THAT IS NOT TRUE. DO YOU WANT A POISONED CHILD? My daughter can have NO GLUTEN, NONE. Currently, there are companies that are in total compliance for those that require gluten free diets, but that's mail order. This is really SIMPLE, it doesn't need a Federal case being made out of it.
Simply,companies, if providing GLUTEN FREE food, must be void of any contamination in set up, preparation, processing and distribution of the product. The source of gelatins, modified food starches, etc need to be identified, anonymous sources are danger zones. As labeling has become exact for those with diabetes, the same is required for gluten free. Carbohydrates, a new pop term to the obese crowd, are getting more attention even though it's for cosmetic reasons not medical. In sum, our lives are challenged by having Celiac Disease. It's not easy, watching everything that goes into your mouth - where it came from and how it was prepared. My kids don't go to sports, school, scouting, & band functions and eat like the other kids. I have to bring it. My 17-year old is afraid to buy stuff from the store because even though it says gluten free, unless it's from Whole Foods Market, she knows she'll be sick. There is only one Whole Foods in our area and it's 25 miles away. Please help make it easier. Just be explicit in the ingredients and only call something 100% gluten free - GLUTEN FREE.
Thank you,
Robin Rubinstein