title: Celiac disease: evaluation of the diagnosis and dietary compliance in Canadian children.
abstract: OBJECTIVE
  We sought to characterize the clinical features at presentation as well as the associated disorders, family history, and evaluation of compliance with a gluten-free diet in children with celiac disease from across Canada.
  
  
  METHODS
  All members (n = 5240) of the Canadian Celiac Association were surveyed with a questionnaire. Of the 2849 respondents with biopsy-confirmed celiac disease, 168 who were < 16 years old provided the data reported here.
  
  
  RESULTS
  The mean age when surveyed was 9.1 +/- 4.1 years, and 58% were female. Median age at diagnosis was 3.0 years with a range of 1 to 15 years. Presenting symptoms included abdominal pain (90%), weight loss (71%), diarrhea (65%), weakness (64%), nausea/vomiting (53%), anemia (40%), mood swings (37%), and constipation (30%). Almost one third of families consulted > or = 2 pediatricians before confirmation of the diagnosis. Before the recognition of celiac disease, other diagnoses received by these children included anemia (15%), irritable bowel syndrome (11%), gastroesophageal reflux (8%), stress (8%), and peptic ulcer disease (4%). A serological test was performed to screen for celiac disease in 70% of those in this population. Eight percent had either type 1 diabetes mellitus or a first-degree relative with celiac disease. Almost all respondents (95%) reported strict adherence to a gluten-free diet, and 89% noted improved health. Reactions after accidental gluten ingestion developed in 54% of the children between 0.5 and 60 hours after ingestion with a median of 2.0 hours. Reactions included abdominal discomfort (87%), diarrhea (64%), bloating (57%), fatigue (37%), headache (24%), and constipation (8%), and most displayed > 1 symptom. Although most adjusted well to their disease and diet, 10% to 20% reported major disruptions in lifestyle. Twenty-three percent felt angry all or most of the time about following a gluten-free diet. Only 15% avoided traveling all or most of the time, and during travel, 83% brought gluten-free food with them all of the time. More than half of the families avoided restaurants all or most of the time. Twenty-eight percent of the respondents found it extremely difficult to locate stores with gluten-free foods, and 27% reported extreme difficulty in finding gluten-free foods or determining if foods were free of gluten. Sixty-three percent of the respondents felt that the information supplied by the Canadian Celiac Association was excellent. Gastroenterologists provided excellent information to 44%, dietitians to 36%, and the family physician to 11.5%. When asked to select 2 items that would improve their quality of life, better labeling of gluten-containing ingredients was selected by 63%, more gluten-free foods in the supermarket by 49%, gluten-free choices on restaurant menus by 49%, earlier diagnosis of celiac disease by 34%, and better dietary counseling by 7%.
  
  
  CONCLUSIONS
  In Canada, children with celiac disease present at all ages with a variety of symptoms and associated conditions. Delays in diagnosis are common. Most children are compliant with a gluten-free diet. A minority of these children experience difficulties in modifying their lifestyles, and gluten-free foods remain difficult to obtain.
authors.affiliation: Division of Gastroenterology and Nutrition, Department of Pediatrics, Dalhousie University, Halifax, Nova Scotia, Canada. mohsin.rashid@iwk.nshealth.ca
authors.forename: Mohsin
authors.initials: M
authors.lastname: Rashid
authors.forename: Ann
authors.initials: A
authors.lastname: Cranney
authors.forename: Marion
authors.initials: M
authors.lastname: Zarkadas
authors.forename: Ian D
authors.initials: ID
authors.lastname: Graham
authors.forename: Connie
authors.initials: C
authors.lastname: Switzer
authors.forename: Shelley
authors.initials: S
authors.lastname: Case
authors.forename: Mavis
authors.initials: M
authors.lastname: Molloy
authors.forename: Ralph E
authors.initials: RE
authors.lastname: Warren
authors.forename: Vernon
authors.initials: V
authors.lastname: Burrows
authors.forename: J Decker
authors.initials: JD
authors.lastname: Butzner
mesh_terms: D000293:Adolescent; D002170:Canada; D002446:Celiac Disease / Q000175:diagnosis* / Q000178:diet therapy* / Q000453:epidemiology; D002648:Child; D002675:Child, Preschool; D005260:Female; D006801:Humans; D007223:Infant; D008297:Male