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Dr. Mohsin Rashid MD, MEd, FRCP(C)
Paediatric Gastroenterologist
Canadian Celiac Association Annual Conference, Kelowna, BC
May 2012
Celiac Without Borders:
A Global Perspective
Coeliaque Sans Frontières:
Une Perspective Globale
Financial Disclosure
None
Celiac Disease
Personal Reflections
• Parent
• Relative
• Physician
Celiac Disease: A Hidden Epidemic
Affects about 1% of the world population
(90% remain undiagnosed)
Celiac Disease World Map Indicating Prevalence
Celiac Support Organizations
(n=68)
Europe, 50
Asia, 3
Oceania, 2
North America, 7
South America, 5
Africa, 1
OBJECTIVE: To make global estimates of the burden of coeliac disease
in childhood.
METHODS: Using a crude model of childhood coeliac disease,
incorporating estimates of population prevalence,
probability of non-diagnosis, and likelihood of mortality
among the undiagnosed across all countries from
1970 to 2010, based around the few available data.
The Global Burden of Childhood Coeliac Disease:
A Neglected Component of Diarrhoeal Mortality? Byass P et al. PLoS ONE. 2011;6(7): e22774.
The Global Burden of Childhood Coeliac Disease:
A Neglected Component of Diarrhoeal Mortality? Byass P et al. PLoS ONE. 2011;6(7): e22774.
Figure 1. World map by WHO Regions, as used as the basis for modelled estimates, showing underlying assumptions about the population prevalence of childhood coeliac disease.
RESULTS: • In 2010, there were around 2.2 million children <5 years
of age living with celiac disease.
• Among these children there could be 42,000 deaths
related to coeliac disease annually.
• In 2008, deaths related to coeliac disease probably
accounted for approximately 4% of all childhood
diarrhoeal mortality.
The Global Burden of Childhood Coeliac Disease:
A Neglected Component of Diarrhoeal Mortality? Byass P et al. PLoS ONE. 2011;6(7): e22774.
The Global Burden of Childhood Coeliac Disease:
A Neglected Component of Diarrhoeal Mortality? Byass P et al. PLoS ONE. 2011;6(7): e22774.
Figure 7. Estimated under-5 diarrhoeal deaths in 2008 by WHO region, showing the estimated coeliac-related component (red bars and numbers of cases).
AFRO African EMRO Eastern Mediterranean EURO European PAHO Pan-American SEARO South-east Asian WPRO Western Pacific
CONCLUSIONS: • Although coeliac disease may only account for a small
proportion of diarrhoeal mortality, these deaths are not
preventable by applying normal diarrhoea treatment
guidelines, which may even involve gluten-based food
supplements.
• As other causes of diarrhoeal mortality decline, coeliac
disease will become a proportionately increasing problem
unless consideration is given to trying gluten-free diets for
children with chronic diarrhoea and malnutrition.
The Global Burden of Childhood Coeliac Disease:
A Neglected Component of Diarrhoeal Mortality? Byass P et al. PLoS ONE. 2011;6(7): e22774.
(1). Those not yet diagnosed
Helping Patients with Celiac Disease
Strategy
• Awareness (physicians, public)
• Education (physicians, public)
Living with Gluten-Free Diet Survey (2008)
Adults (n=5,203)
Mean duration of symptoms before
diagnosis 12.0 years,(Median 6.0 yrs) Zarkadas M et al. DDW 2010
Canadian Celiac Health Survey (2002)
Adult data (n=2,681)
Mean duration of symptoms before
diagnosis 11.7 years Cranney A et al. Dig Dis Sci 2007
(1). Those not yet diagnosed
(2). Those diagnosed and struggling with
gluten-free diet
Helping Patients with Celiac Disease
Strategy
• Safe and affordable gluten-free products
• Patient support group
• Availability
• Cost
• Complexity
• Cross contamination
• Nutritionally deficient?
• Restrictive
• Life-long
Challenges of a Gluten-free Diet
Gluten-free diet is a prescribed therapy
Management of Celiac Disease
• Consultation with a skilled dietitian
• Education about the disease
• Lifelong adherence to a gluten-free diet
• Identification and treatment of nutritional
deficiencies
• Access to an advocacy group
• Continuous long-term follow-up by a
multidisciplinary team
Identified by physicians and patients
as important sources of information
Patient Support Organizations
Zarkadas M et al. J Hum Nutr Diet. 2006;19:41-49
Creating a Celiac Support
Organization in Pakistan
Map of Pakistan
Pakistan: Facts & Figures
• Area (Sq. km) 796,096
• Total Population (2008) 176.9 million
• Population under 18 yrs 77.9 million
• Population under 5 yrs 23.8 million
• Annual number of births 5.3 million
• Population annual growth rate (%) 2.2
(2000-2008)
Pakistan: Economics
(2009)
PAKISTAN CANADA
Indicator U$ U$
------------------------------------------------------------------------------
Gross Domestic Product 160,257 1,336,070
(million) ------------------------------------------------------------------------------------------------------------------------------------------------------------
Gross National Income 886.30 39,236.60 ---------------------------------------------------------------------------------------------------------------------------------------------------------------
Mohenjo-Daro and Indus valley, Pakistan The land of oldest civilization (2600 BC)
Naltar Lake, Pakistan (Photo by: Kamran Rashid)
Rakaposhi (7788m), Hunza, Pakistan (Photo by: Kamran Rashid)
Trek along Batura Glacier, Pakistan (Photo by: Kamran Rashid)
K2 : The 2nd highest mountain peak in the world
Karakoram Highway, Pakistan World's highest paved international road (15,400ft)
Gawader, Pakistan World's largest deep sea port
Thar Desert, Pakistan One of the largest deserts in the world
Khewra Mines, Pakistan Second largest salt mine in the world (dates back to 320 BC)
Pakistan: Health Care
PAKISTAN CANADA
Indicator Value (year) Value (year)
--------------------------------------------------------------------------------
Number of Physicians 126,350 (2005) 62,307 (2006) -----------------------------------------------------------------------------------------------------------------------------------------------------------------
Physicians density
(per 10 000 population) 8.00 (2005) 19.00 (2006) -----------------------------------------------------------------------------------------------------------------------------------------------------------------
Number of nursing & 70,698 (2005) 327,224 (2006)
midwifery personnel ------------------------------------------------------------------------------------------------------------------------------------------------------------------
Nursing & midwifery 5.00 (2005) 101.00 (2006)
personnel density (per 10 000 population)
• Other - Tuberculosis
- Malaria
Challenges of Health Care
in Pakistan
• GI diseases - Hepatitis B and C
- Gastroenteritis
- Malnutrition
Creating a Celiac Support
Organization in Pakistan
Pakistani Celiac Society
“Amazing, shocking, astonishing and what not. The labels use excellent "gymnastics of words" to trap the customer. Being a patient for last 15 years I know that any kind of wheat product or its by-products are not gluten free. A product that is wheat-free is not bound to be Gluten- Free but a gluten free product is definitely free from wheat and other grains that have gluten content. No two goats should butt heads about this.”
--- Comments on the Blog by a patient
Celiac Disease
Urdu Language
• A central Indo-Aryan language of the Indo-Iranian
branch. Has resemblance with Hindi
• Urdu/Hindi is believed to be the fourth most
spoken language in the world (after Mandarin,
English, and Spanish)
• Official language of Pakistan
• Spoken in India, Bangladesh, Iran, Saudi Arabia,
South Africa, United Arab Emirates, other Gulf
States and by immigrants in UK, Australia, USA
and Canada
Primary Urdu speaking areas in the sub-continent
Alphabets of the Urdu language
Pakistani Celiac Society All About Gluten-Free Lifestyle
www.celiac.com.pk
Logo of the Pakistani Celiac Society
Flag of Pakistan
Pakistani Celiac Society
Mission Statement
The Pakistani Celiac Society is a national
volunteer, non-profit organization dedicated to
provide support and services to individuals and
families with celiac disease and dermatitis
herpetiformis through programmes of
awareness, advocacy and education
Pakistani Celiac Society www.celiac.com.pk
• Web site (Urdu and English)
• Membership (free, on-line)
• Brochures
• Quarterly Newsletter
Pakistani Celiac Society
• Directors (President, Vice-President, Treasurer,
General Secretary)
• Medical Advisors (Local, International)
www.celiac.com.pk
Inaugural Meeting 06, March 2010 Lahore, Pakistan
Pakistani Celiac Society
Pakistani Celiac Society
• Lahore - March 2010
- March 2011
- March 2012
• Islamabad - March 2011
• Karachi - December 2010
- March 2012
Regional Conferences
Writing a book on
Celiac Disease & Gluten-Free Diet
Book on Celiac Disease, March 2011
• Foreword by Prof. Dr. Khwaja S. Husain
Book: Celiac Disease and Gluten-Free Diet
King Edward Medical College, Lahore, Pakistan (Built 1860)
• Chapters
- Understanding Celiac Disease
- Living with a Gluten-Free Diet
- History of Celiac Disease
- Celiac Disease in Pakistan
- Pakistani Celiac Society
- Gluten-Free Recipes
- Resources
Book: Celiac Disease and Gluten-Free Diet
• Inauguration at the Annual Congress of
Pakistan Society of Gastroenterology 2011
Book: Celiac Disease and Gluten-Free Diet
Faisal Mosque, Islamabad, Pakistan
Printing vs Publishing
Book: Celiac Disease and Gluten-Free Diet
• 165 pages, laminated paperback
• 25 colored images
• 2,500 copies printed
Spreading the Word
• Articles in medical journals in Pakistan
• Presentations at Pak GI Society meetings
• Lectures at various medical institutions
• Distribution of books to physicians,
medical students and libraries
Are Efforts Working?
Not known at this time
http://www.daaliearthfoods.com/p-gluten-free-flours.php
Future Plans
• Prevalence study in Pakistan
Estimated prevalence 1% = 1.8 million patients!!
Future Plans
• Locally produced gluten-free products
Partnership with surrounding countries
Summary
• Celiac disease is truly a global disorder
• Celiac community faces similar challenges
• Improving awareness is key to making life
better for patients with celiac disease
Questions
The Celiac Iceberg