# Presentation: 288881

## Celiac Disease: Patient Perspective

- C. Kupper, RD, CD, Executive Director (_[admin@gluten.net](mailto:admin@gluten.net)_)
- Gluten Intolerance Group of  North America USA)
- www.gluten.net

## 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

## 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 PatientsGet 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’ Reaction
- from 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.