Celiac disease patient perspective
Download
1 / 12

Celiac Disease: Patient Perspective - PowerPoint PPT Presentation


  • 89 Views
  • Updated On :

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. 44% found GFD difficult to follow* 2. 84% have problems identifying GF foods*

loader
I am the owner, or an agent authorized to act on behalf of the owner, of the copyrighted work described.
capcha
Download Presentation

PowerPoint Slideshow about 'Celiac Disease: Patient Perspective' - taber


An Image/Link below is provided (as is) to download presentation

Download Policy: Content on the Website is provided to you AS IS for your information and personal use and may not be sold / licensed / shared on other websites without getting consent from its author.While downloading, if for some reason you are not able to download a presentation, the publisher may have deleted the file from their server.


- - - - - - - - - - - - - - - - - - - - - - - - - - E N D - - - - - - - - - - - - - - - - - - - - - - - - - -
Presentation Transcript
Celiac disease patient perspective l.jpg

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 l.jpg
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 l.jpg
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 l.jpg

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)


Slide5 l.jpg
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 l.jpg
Varying Levels of Gluten Sensitivity below which they are not concerned with health risks?

  • 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 l.jpg
Define Gluten Free in USA? below which they are not concerned with health risks?

  • 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 l.jpg

71% - Yes below which they are not concerned with health risks?

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)


The gf consumer l.jpg

Compulsive about food safety & contamination below which they are not concerned with health risks?

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


Consumer comments l.jpg
Consumer Comments below which they are not concerned with health risks?

  • 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 l.jpg
Closing Thoughts below which they are not concerned with health risks?

  • 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 l.jpg
Bottom Line below which they are not concerned with health risks?

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.