The Canadian celiac health survey--the Ottawa chapter pilot.
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 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, 30% of respondents consulted four or more family doctors. Thirty seven 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.


CONCLUSIONS
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.
Division of Rheumatology, Department of Medicine, Queen's University, Kingston, Ontario, Canada. cranneya@kgh.kari.net
Ann
A
Cranney
Marion
M
Zarkadas
Ian D
ID
Graham
Connie
C
Switzer
D002446:Celiac Disease / Q000150:complications / Q000175:diagnosis* / Q000178:diet therapy; D003937:Diagnosis, Differential; D005192:Family Health; D005240:Feasibility Studies; D005260:Female; D005983:Glutens / Q000008:administration & dosage / Q000009:adverse effects; D006306:Health Surveys; D006801:Humans; D008297:Male; D008875:Middle Aged; D018673:Nutrition Policy; D009864:Ontario; D010865:Pilot Projects; D011788:Quality of Life; D011795:Surveys and Questionnaires
D005983:Glutens