Celiac Consumer: Survey Results

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: 11-78 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. 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) Ingredients Participants Have Doubts About

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

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.