2005N-0279 Food Labeling; Gluten-Free Labeling of Foods; Public Meeting
FDA Comment Number : EC1261
Submitter : Mrs. Deborah Byrne Date & Time: 09/20/2005 05:09:17
Organization : Mrs. Deborah Byrne
Category : Individual Consumer
Issue Areas/Comments
I have 3 celiac children. We have been following a gluten free diet for 10 years. During that time we have had rare accidents of eating food containing gluten. One occasion my son ate 2 whole wheat waffles from a box that was similar in appearance to the G.F. box. His reaction occurred within 2 hours and involved 6 hours of severe vomiting and abdominal pain followed by a day of numerous bouts of diarrhea. My daughter reacts with similar severity and has ended up twice in the emergency for I.V. fluids. This past year while at a sleepover she ate pizza from a box that looked very similar to the box that contained G.F. pizza. She reacted within three hours and spent the rest of the night vomiting. A year earlier she tried some millet bread from a bakery in Florida that was not labeled with any offending grains and ended up in the emergency room as the vomiting got so bad tiny pieces of tissue and blood
started coming up. We later found out that chemical analysis of the millet bread from this company showed gross contamination with wheat. So ingredients matter a lot to us!
This last child had the severe reaction to the wrong pizza. It would have been helpful if the Gluten Free label had been prominently displayed so I might have not picked up the wrong box in a rush. The same is true with the waffle box and my son.

Gluten free to us means no wheat, rye, oats or barley. None. I think studies need to conclude what trace amounts can cause a reaction in the most sensitive celiac. As far as the oats question....My daughter tried quaker oatmeal over 4 days as recommended by her G.I. doctor. Starting with a tablespoon of oatmeal and gradually increasing each day to a cup. By the 4th and 5th day she began having intestinal symptoms...loose stools so we stopped. It wasn't the terrible vomiting but still a milder reaction. The question is was it contamination in the oats or intolerance to oats and is that intolerance the same physical reaction in her intestines as wheat? I think we need some research and studies to determine this. If a label says gluten free I read the label to see what is in the product because I know from experience that word doesn't mean the same thing to everyone. If I was newly diagnosed I would probably read that word and assume that whatever was listed must be gluten free. The two controversial questions that must be answered are what is the smallest amount that gives a reaction in the most sensitive patient and is the reaction to oats the same reaction as to wheat, rye, and barley or is it a separate intolerance? Until those questions can be answered I don't think you will know what product can have the label gluten free.

Thank you for addressing this matter for all of celiac community. It affects us everyday, everytime we sit down to eat.

Debbie Byrne