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A pilot Canadian celiac disease survey has been conducted determining the
feasability of a full survey of over 5,000 Canadian Celiac Association
members.  A full survey is underway.  The full article is available free
but only in PDF file format.  The Adobe Acrobat reader is required.

Abstract:
http://www.biomedcentral.com/1471-230X/3/8

Full text, PDF version only:
http://www.biomedcentral.com/content/pdf/1471-230x-3-8.pdf

The Canadian celiac health survey - The Ottawa chapter pilot.
Ann B Cranney , Marion Zarkadas , Ian D Graham  and Connie M Switzer
BMC Gastroenterology 2003 3:8 (published 11 May 2003)

Abstract (provisional)

Background
Celiac disease may manifest with a variety of symptoms which can result in
delays in diagnosis. Celiac disease is associated with a number of other
medical conditions. The last national survey of members of the Canadian
Celiac Association (CCA) was in 1989. Our objective was to determine the
feasibility of surveying the over 5,000 members of the CCA, in addition to
obtaining more health related information about celiac disease.

Methods
The Professional Advisory Board of the CCA in collaboration with the
University of Ottawa developed a comprehensive questionnaire on celiac
disease. The questionnaire was pre-tested and then a pilot survey was
conducted on members of the Ottawa Chapter of the CCA using a Modified
Dillmans' Total Design method for mail surveys.

Results
We had a 76% response to the first mailout of the questionnaire. The mean
age of participants was 55.5 years and the mean age at diagnosis was 45
years. The majority of respondents presented with abdominal pain, diarrhea,
fatigue or weight loss. Prior to diagnosis, 37% of respondents consulted
four or more family doctors. Thirty percent of individuals were told they
had either osteoporosis or osteopenia. Regarding the impact of the gluten-
free diet (GFD), 45% of individuals reported that they found following a
GFD was very or moderately difficult. The quality of life of individuals
with celiac disease was comparable to the mean quality of life of Canadians.

Conclusion
On the basis of our results, we concluded that a nationwide survey is
feasible and this is in progress. Important concerns included delays in the
diagnosis of celiac disease and the awareness of associated medical
conditions. Other issues include awareness of celiac disease by health
professionals and the impact of the GFD on quality of life. These issues
will be addressed further in the national survey.

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