Canadian Celiac Health Survey

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Canadian Celiac Health Survey

• Ottawa Mini-Conference
• 23 September 2006
• Marion Zarkadas MSc, RD
• CCA Professional Advisory Board

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Canadian Celiac Health Survey

• Collaborators
• CCA Professional Advisory Board
• Drs. Ann Cranney Ian Graham - Faculty of
  Medicine, U of Ottawa
• Canadian Celiac Association
• Sponsors
• J. Alex Campbell Research Fund of CCA
• Anemia Institute of Research and Education

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Background

• Doctors often unaware of variety of symptoms of
  celiac disease (CD)
• CD often remains undiagnosed, is misdiagnosed or
  diagnosis is delayed
• Without treatment there can be long- term
  complications, e,g,, malignancy, osteoporosis,
  reproductive problems

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Background

• Little up-to-date Canadian data on CD
• Last CCA survey in 1989
• CD is much more common than previously thought
• It is inherited, so family members are at higher
  risk of having CD

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Steps Involved

• Developed questionnaire
• Reviewed by international CD experts Drs. Green
  and Fasano
• Did a pilot survey of 414 Ottawa members in 2001
• Surveyed 5,240 CCA members in 2002

Cranney, Biomed Central 200338
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Results

• 2/3 responded excellent response
• 2,681 adults and 168 children with biopsy
  confirmed CD/DH
• 11 had dermatitis herpetiformis
• Females/males 3/1
• Mean age of adults 56 years

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Age at Diagnosis of Celiac Disease
Mean age at diagnosis 46
Percent of Respondents
Age at Diagnosis
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Diagnosis

• Prior diagnoses included anemia, IBS, allergies,
  ulcers, chronic fatigue syndrome
• 7 were diagnosed as children and half reported
  that their symptoms disappeared and reappeared
  during adulthood

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How Many Doctors Were Consulted Before Diagnosis ?

• 2 or more family doctors over 1/3
• 3 or more doctors over 1/4
• 2 gastroenterologists over 1/8
• final diagnosis confirmed by gastroenterologist
  over 3/4

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Delays in Diagnosis

• THE BAD NEWS
• Average delay in diagnosis after developing
  symptoms 11.7 years
• Delays in diagnosis were not shorter in those
  diagnosed after 1998 compared to those before 1998

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Possible Precipitating Factors Within 6 Months
of Diagnosis

• Severe stress 23
• Severe intestinal infection 9
• Pregnancy 8
• Major surgery 7

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Common Symptoms

• Abdominal pain 83
• Diarrhea
• Weight loss
• Weakness/tiredness
• Anemia
• Depression
• Bone/joint pain 38

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Less Common Symptoms

• Constipation 32
• Easy bruising
• Nausea, vomiting
• Lactose intolerance
• Mouth ulcers
• Migraine
• Swelling feet hands 20

14
Full Recovery on GF Diet

• Weight loss 84
• Nausea/vomiting 73
• Anemia 72
• Diarrhea 66
• Mouth Ulcers 60
• Weakness/tiredness 53
• Constipation 47
• Migraine 40

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Other Autoimmune Diseases

• Most common autoimmune diseases among members
  and their 1st degree relatives
• - Hypothyroidism
• - Rheumatoid Arthritis
• - Type 1 Diabetes

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Bone Health

• Bone density tested 57
• Osteoporosis 26
• Osteopenia 13
• Previous fracture 42
• Broken wrist 16
• Taking calcium and vitamin D 25

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Reproductive Health

• Females
• History of miscarriage 31
• Trouble conceiving children 14
• Treated for infertility 5
• Males
• ? sex drive 46
• Low sperm count (in those tested) 27

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Quality of Life

• Mental and physical function scores were similar
  to general Canadian population
• Lower scores in those diagnosed within the
  previous year and among women compared to the men

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Improved Health After a GFD
NOT AT ALL 1
A LITTLE 3
MODERATELY 13
A LOT 83
20
Reactions To Gluten

• abdominal discomfort
• diarrhea
• bloating/flatulence
• fatigue
• nausea
• constipation
• Mean reaction time 6.4 hours

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Impact of a Gluten-Free Diet

• Avoiding restaurants
• Difficulties in finding GF foods, especially of
  good quality
• Difficulties in determining from label if foods
  are GF
• Avoiding travelling
• Psychological impact being a bother, feeling
  left out, anger, denial

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Quality of Information by Source

• Sources of excellent quality of
  information about CD
• Canadian Celiac Association
  (National and Local) - 64
• Gastroenterologist - 28
• Dietitian - 26
• Family doctor - 12

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Conclusions

• Delays in diagnosis remain a problem
• Medical doctors and dietitians need more training
  in symptoms, diet follow up
• Family members with symptoms should be screened
  for CD
• Improved labelling of gluten in foods is needed

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MANY THANKS

• FUNDING
• - CCA J. Alex Campbell Research Fund
• - Anemia Institute for Research and
  Education
• DEDICATION HARD WORK
• - the PAB and Ottawa U collaborators
• PARTICIPATION AND HELP
• - the members of the CCA