Celiac Disease:

Patient Perspective

C. Kupper, RD, CD, Executive Director (admin@gluten.net)

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.