Celiac Disease: Patient Perspective

1
Celiac Disease Patient Perspective
C. Kupper, RD, CD, Executive Director
(admin_at_gluten.net) Gluten Intolerance Group of
North America USA) www.gluten.net
2
Living Coping with Celiac Disease

• 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
3
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)
4
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)
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Do consumers perceive that there are gluten
exposure levels below which they are not
concerned with health risks?

• Yes and No
• Depends on consumers 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)
6
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

7
Define Gluten Free in USA?

• No definition 19
• 20 ppm gluten 13
• 200 ppm gluten 5
• Zero 42
• Dont know 21

Online patient survey of 620 persons on a GFD
from Celiac List Serve (3/2005)
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Do You Trust Products Labeled GF?
Gluten Reaction from Labeled GF Food

• 25 - Possibly
• 27 - Yes
• 45 - No

• 71 - Yes
• 22 - No
• 7 - Sometimes

Online patient survey of 620 persons on a GFD
from Celiac List Serve (3/2005)
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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

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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 foodsI dont trust anything
  not made in a dedicated plant.

St Johns Celiac List Serve (3/2005)
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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

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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.