Celiac Disease: Patient Perspective

1. Celiac Disease: Patient Perspective C. Kupper, RD, CD, Executive Director (admin@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. Primary Sources Support groups Internet List serves, chat groups Self-help books Secondary Sources Doctor Dietitian Celiac research facility Medical websites Where Celiac Disease PatientsGet Information and Guidance *Canadian Celiac Health Survey October 2002; Online patient survey (3/2005)

5. 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)

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% • Don’t know – 21% Online patient survey of 620 persons on a GFD from Celiac List Serve (3/2005)

8. 71% - Yes 22% - No 7% - Sometimes 25% - Possibly 27% - Yes 45% - No ‘Gluten’ Reaction from Labeled GF Food Do You Trust Products Labeled GF? Online patient survey of 620 persons on a GFD from Celiac List Serve (3/2005)

9. 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 The GF Consumer

10. 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)

11. 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

12. 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.