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Celiac Consumer: Survey Results. Pam Cureton, RD, LDN University of Maryland, School of Medicine Center for Celiac Research. The Center for Celiac Research Presents:. Making Tracks for Celiacs: A Patient Education Day July 9, 2005. Demographics.

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Celiac Consumer: Survey Results

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Celiac Consumer: Survey Results

Pam Cureton, RD, LDN

University of Maryland, School of Medicine

Center for Celiac Research


The Center for Celiac Research Presents:

Making Tracks for Celiacs:

A Patient Education Day

July 9, 2005


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)


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%)


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


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


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”


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


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”


Difference Between Perception and Facts on GF Meaning

What Does GF Mean?

What Should GF Mean?


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


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


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


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


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.


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