Celiac Consumer Survey Results Pam Cureton RD LDN

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

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

Demographics n n Sample Size = 57 (10 - Males, 46 - Females) Age n n n Income n n Most had some college or more (90%) Ethnicity n n Participants predominantly High SES (>$70 K/year) Education n n Survey completers: 11 -78 years, mean = 47 years Person on GFD: 3 -78 years, mean = 43. 5 Predominantly European American (89. 5%) Time on GFD n 2+ years (52%; range <1 month – 5+ years) 3

Current Diet n When asked how strictly they followed the GFD, participants said: n They never ingest gluten (53%) n Try hard not to ingest gluten (37%) n Try not to ingest gluten (3. 5%) n Knowingly Cheat (5%) 4

Ingredients Participants Have Doubts About n n n 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) n n n 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) 5

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

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

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

What Should GF Mean? n n 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” 9

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

How Do You Identify GF Foods? n Most common answers included: n n n 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 11

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

Likely to Buy if Manufactured in Non-Dedicated Plant? n 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? ” n n Absolutely will not purchase Might Purchase Would Probably Purchase Would Definitely Purchase 13

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

Limitations n May not Generalize Well to All Patients with CD. n n n 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. 15