Celiac Without Borders: A Global Perspective Coeliaque Sans Frontières: Une Perspective Globale Dr. Mohsin Rashid MD, MEd, FRCP(C) Paediatric Gastroenterologist Canadian Celiac Association Annual Conference, Kelowna, BC May 2012
Financial Disclosure None
Celiac Disease Personal Reflections • Physician • Parent • Relative
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) South Africa, 1 North America, 5 America, 7 Europe, 50 Oceania, 2 Asia, 3
The Global Burden of Childhood Coeliac Disease: A Neglected Component of Diarrhoeal Mortality? Byass P et al. PLoS ONE . 2011;6(7): e22774. 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. 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.
The Global Burden of Childhood Coeliac Disease: A Neglected Component of Diarrhoeal Mortality? Byass P et al. PLoS ONE . 2011;6(7): e22774. 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. AFRO African EMRO Eastern Mediterranean EURO European PAHO Pan-American SEARO South-east Asian WPRO Western Pacific Figure 7 . Estimated under-5 diarrhoeal deaths in 2008 by WHO region, showing the estimated coeliac-related component (red bars and numbers of cases).
The Global Burden of Childhood Coeliac Disease: A Neglected Component of Diarrhoeal Mortality? Byass P et al. PLoS ONE . 2011;6(7): e22774. 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.
Helping Patients with Celiac Disease (1). Those not yet diagnosed Strategy • Awareness (physicians, public) • Education (physicians, public)
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 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
Helping Patients with Celiac Disease (1). Those not yet diagnosed (2). Those diagnosed and struggling with gluten-free diet Strategy • Safe and affordable gluten-free products • Patient support group
Challenges of a Gluten-free Diet Gluten-free diet is a prescribed therapy • Availability • Cost • Complexity • Cross contamination • Nutritionally deficient? • Restrictive • Life-long
Management of Celiac Disease • C onsultation with a skilled dietitian • E ducation about the disease • L ifelong adherence to a gluten-free diet • I dentification and treatment of nutritional deficiencies • Access to an advocacy group • C ontinuous long-term follow-up by a multidisciplinary team
Patient Support Organizations Identified by physicians and patients as important sources of information 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)
Challenges of Health Care in Pakistan • GI diseases - Hepatitis B and C - Gastroenteritis - Malnutrition • Other - Tuberculosis - Malaria
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
Pakistani Celiac Society Inaugural Meeting 06, March 2010 Lahore, Pakistan
Pakistani Celiac Society Regional Conferences • Lahore - March 2010 - March 2011 - March 2012 • Islamabad - March 2011 • Karachi - December 2010 - March 2012
Writing a book on Celiac Disease & Gluten-Free Diet
Book on Celiac Disease, March 2011
Recommend
More recommend
