Celiac Disease: Patient Perspective C. Kupper, RD, CD, Executive Director Gluten Intolerance Group of North America USA)

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 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.