1 Celiac Consumer: Survey Results Pam Cureton, RD, LDN University of Maryland, School of Medicine Center for Celiac Research

2 The Center for Celiac Research Presents: Making Tracks for Celiacs: A Patient Education Day July 9, 2005

3 Demographics Sample Size = 57 (10 - Males, 46 - Females) Age Survey completers: years, mean = 47 years Person on GFD: 3-78 years, mean = 43.5 Income Participants predominantly High SES (>$70K/year) Education Most had some college or more (90%) Ethnicity Predominantly European American (89.5%) Time on GFD 2+ years (52%; range <1month – 5+ years)

4 Current Diet When asked how strictly they followed the GFD, participants said: They never ingest gluten (53%) Try hard not to ingest gluten (37%) Try not to ingest gluten (3.5%) Knowingly Cheat (5%)

5 Ingredients Participants Have Doubts About Modified Food Starch (N=44) Malt (N=37) Artificial Flavors (N=36) Starch (N=35) Caramel (N=34) Hydrolyzed Vegetable Protein (N=32) Natural Flavors (N=26) Kamut (N=23) Distilled Alcohol (N=15) Millet (N=13) Vanilla (N=13) Dextrin (N=12) Vinegar (N=12) Buckwheat (N=8) Dextrose (N=7) Sorbitol (N=7) Masa Flour (N=6) Rice Syrup (N=6) Corn Gluten (N=4) Bean Flour (N=2) Tapioca Starch (N=2) Vegetable Oil (N=2)

6 What Does GF Mean? Participants were asked “If you see ‘Gluten Free’ on a label, what does it mean to you?” No detectable levels of gluten – safe to eat Trace amounts of gluten (<10mg) – probably safe to eat May contain gluten – may not be safe to eat Definitely contains gluten – not safe to eat

7 What Does GF Mean? No participant answered “Definitely contains gluten” 71% reported that it means “No detectable gluten” 27% reported “Trace amounts” 2% reported “May contain gluten”

8 What Should GF Mean? Participants were asked “What do you think ‘Gluten Free’ on a label should mean?” No detectable levels of gluten – safe to eat Trace amounts of gluten (<10mg) – probably safe to eat May contain gluten – may not be safe to eat Definitely contains gluten – not safe to eat

9 What Should GF Mean? No participant answered “Definitely contains gluten” No participant answered that GF should mean “May contain gluten” 83% reported that it should mean “No detectable gluten” 17% reported “Trace amounts”

10 What Should GF Mean? What Does GF Mean? Difference Between Perception and Facts on GF Meaning

11 How Do You Identify GF Foods? Most common answers included: Read Labels (N = 44) Rely on Foods Labeled “GF” (N = 32) Call the Manufacturer (N = 25) *Participants were allowed to check more than one answer

12 Influence Purchase of GF Foods? Influence Purchase Decision if Labeled GF vs. if Not Labeled? When faced with a questionable ingredient, 24 participants reported that they would rely on foods labeled “GF”. 35 call the manufacturer 20 rely on safe food list *Participants were allowed to check more than one answer

13 Likely to Buy if Manufactured in Non-Dedicated Plant? Participants were asked, “How likely are you to purchase a food item that is GF but manufactured in a plant that also processes foods containing Gluten?” Absolutely will not purchase Might Purchase Would Probably Purchase Would Definitely Purchase

14 Likely to Buy if Manufactured in Non-Dedicated Plant? Participants reported: 48% - Might Purchase 33% - Would Probably Purchase 9% - Would Definitely Purchase 9% - Absolutely will not purchase

15 Limitations May not Generalize Well to All Patients with CD. Convenience Sample of Conference Attendees. Predominantly High Income, European American Participants with Average Age of 47 years. Small Sample Size. Results are Correlational in Nature. Self Report.