Celiac Disease:
Patient Perspective
C. Kupper, RD, CD, Executive Director ([email protected])
Gluten Intolerance Group of North America USA)
www.gluten.net
Living & Coping with Celiac Disease
1. 44% found GFD difficult to follow*
2. 84% have problems identifying GF foods*
3. Quality of life negatively impacts§
• Ability to travel (82%)• Ability to eat out (86%)• Family life (67%)• Work/Career (41%)
*Canadian Celiac Health Survey October 2002 § J Am Diet Assoc 2003, Lee and Newman
Gluten Reactions
• 75% feel can differentiate a ‘gluten’ vs. other intolerance reaction
• Reactions last several hours to days– Self-reported 4 hours to 14 days– Reactions range from intestinal to extra-
intestinal, and classic allergic-type reactions
Online patient survey of 620 persons on a GFD from Celiac List Serve (3/2005)
Where Celiac Disease PatientsGet Information and Guidance
Primary Sources
• Support groups• Internet• List serves, chat groups• Self-help books
Secondary Sources
• Doctor• Dietitian• Celiac research facility• Medical websites
*Canadian Celiac Health Survey October 2002; Online patient survey (3/2005)
Do consumers perceive that there are gluten exposure levels below which they are not concerned with health
risks?
• Yes and No– Depends on consumer’s confidence and
acceptance of research vs. testimonials– Consumer inability to correctly interpret research
findings – Perpetuation of mis-information
Online patient survey of 620 persons on a GFD from Celiac List Serve (3/2005)
Varying Levels of Gluten Sensitivity
• Celiac disease vs. gluten intolerance
• Perception of gluten ‘poisoning’ vs. other reaction causes
• Fear Factor of complications from gluten ingestion
Define Gluten Free in USA?
• No definition – 19%
• 20 ppm gluten –13%
• 200 ppm gluten – 5%
• Zero – 42%
• Don’t know – 21%
Online patient survey of 620 persons on a GFD from Celiac List Serve (3/2005)
Do You Trust Products
Labeled GF?
• 71% - Yes• 22% - No• 7% - Sometimes
• 25% - Possibly• 27% - Yes• 45% - No
‘Gluten’ Reactionfrom Labeled
GF Food
Online patient survey of 620 persons on a GFD from Celiac List Serve (3/2005)
The GF Consumer• Compulsive about food
safety & contamination
• Limited trust in labeling & manufacturing practices
• Limited understanding of good manufacturing practices
• Want company accountability / assurance
• May translate information to an extreme
• Descriptive labeling not considered beneficial - ‘no gluten ingredients added’
• Changes in ingredients can change GF Status – i.e.: food starch
Consumer Comments• Without effective labeling how can someone who is being
damaged by gluten sensitivity/CD, protect themselves?
• Even if you call a company they can change their process/ingredients and we never know.
• If the product appears GF on the label but is not marked GF, I do not trust the product.
• I get sick eating GF foods…I don’t trust anything not made in a dedicated plant.
St John’s Celiac List Serve (3/2005)
Closing Thoughts• Speak same language - ‘‘Translator’’
– Consistent Simple Terminology between industry & consumer
• ppm• gluten
• Education component lacking – consumer and industry
• Reasonable vs. lowest threshold– Consumer safety– Manufacturer compliance
Bottom Line
Gluten intolerant consumers
want to rely on labeling,
with a high level of confidence,
to make safe food choices
for their health and well-being.
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