Celiac Without Borders: A Global Perspective

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Percival McKinney
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1 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

2 Financial Disclosure None

3 Celiac Disease Personal Reflections Physician Parent Relative

4 Celiac Disease: A Hidden Epidemic Affects about 1% of the world population (90% remain undiagnosed)

5 Celiac Disease World Map Indicating Prevalence

6 Celiac Support Organizations (n=68) North America, 7 Oceania, 2 South America, 5 Africa, 1 Europe, 50 Asia, 3

8 The Global Burden of Childhood Coeliac Disease: A Neglected Component of Diarrhoeal Mortality? Byass P et al. PLoS ONE. 2011;6(7): e 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.

9 The Global Burden of Childhood Coeliac Disease: A Neglected Component of Diarrhoeal Mortality? Byass P et al. PLoS ONE. 2011;6(7): e 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.

10 The Global Burden of Childhood Coeliac Disease: A Neglected Component of Diarrhoeal Mortality? Byass P et al. PLoS ONE. 2011;6(7): e 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.

11 The Global Burden of Childhood Coeliac Disease: A Neglected Component of Diarrhoeal Mortality? Byass P et al. PLoS ONE. 2011;6(7): e 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).

12 The Global Burden of Childhood Coeliac Disease: A Neglected Component of Diarrhoeal Mortality? Byass P et al. PLoS ONE. 2011;6(7): e 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.

13 Helping Patients with Celiac Disease (1). Those not yet diagnosed Strategy Awareness (physicians, public) Education (physicians, public)

14 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

15 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

16 Challenges of a Gluten-free Diet Gluten-free diet is a prescribed therapy Availability Cost Complexity Cross contamination Nutritionally deficient? Restrictive Life-long

17 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

18 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

20 Creating a Celiac Support Organization in Pakistan

21 Map of Pakistan

22 Pakistan: Facts & Figures Area (Sq. km) 796,096 Total Population (2008) Population under 18 yrs Population under 5 yrs Annual number of births million 77.9 million 23.8 million 5.3 million Population annual growth rate (%) 2.2 ( )

23 Pakistan: Economics (2009) PAKISTAN CANADA Indicator U$ U$ Gross Domestic Product 160,257 1,336,070 (million) Gross National Income ,

24 Mohenjo-Daro and Indus valley, Pakistan The land of oldest civilization (2600 BC)

25 Naltar Lake, Pakistan (Photo by: Kamran Rashid)

26 Rakaposhi (7788m), Hunza, Pakistan (Photo by: Kamran Rashid)

27 Trek along Batura Glacier, Pakistan (Photo by: Kamran Rashid)

28 K2 : The 2nd highest mountain peak in the world

29 Karakoram Highway, Pakistan World's highest paved international road (15,400ft)

30 Gawader, Pakistan World's largest deep sea port

31 Thar Desert, Pakistan One of the largest deserts in the world

32 Khewra Mines, Pakistan Second largest salt mine in the world (dates back to 320 BC)

33 Pakistan: Health Care PAKISTAN CANADA Indicator Value (year) Value (year) Number of Physicians 126,350 (2005) 62,307 (2006) Physicians density (per population) 8.00 (2005) (2006) Number of nursing & 70,698 (2005) 327,224 (2006) midwifery personnel Nursing & midwifery 5.00 (2005) (2006) personnel density (per population)

34 Challenges of Health Care in Pakistan GI diseases - Hepatitis B and C - Gastroenteritis - Malnutrition Other - Tuberculosis - Malaria

35 Creating a Celiac Support Organization in Pakistan Pakistani Celiac Society

36 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

37 Celiac Disease

38 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

39 Primary Urdu speaking areas in the sub-continent

40 Alphabets of the Urdu language

41 Pakistani Celiac Society All About Gluten-Free Lifestyle

42 Logo of the Pakistani Celiac Society Flag of Pakistan

43 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

44 Pakistani Celiac Society Web site (Urdu and English) Membership (free, on-line) Brochures Quarterly Newsletter

45 Pakistani Celiac Society Directors (President, Vice-President, Treasurer, General Secretary) Medical Advisors (Local, International)

50 Pakistani Celiac Society Inaugural Meeting 06, March 2010 Lahore, Pakistan

51 Pakistani Celiac Society Regional Conferences Lahore - March March March 2012 Islamabad - March 2011 Karachi - December March 2012

52 Writing a book on Celiac Disease & Gluten-Free Diet

53 Book on Celiac Disease, March 2011

54 Book: Celiac Disease and Gluten-Free Diet Foreword by Prof. Dr. Khwaja S. Husain King Edward Medical College, Lahore, Pakistan (Built 1860)

55 Book: Celiac Disease and Gluten-Free Diet 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

56 Book: Celiac Disease and Gluten-Free Diet Inauguration at the Annual Congress of Pakistan Society of Gastroenterology 2011 Faisal Mosque, Islamabad, Pakistan

57 Book: Celiac Disease and Gluten-Free Diet Printing vs Publishing 165 pages, laminated paperback 25 colored images 2,500 copies printed

58 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

59 Are Efforts Working? Not known at this time

62 Future Plans Prevalence study in Pakistan Estimated prevalence 1% = 1.8 million patients!!

63 Future Plans Locally produced gluten-free products Partnership with surrounding countries

64 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

65 Questions The Celiac Iceberg

Epidemiology. The old Celiac Disease Epidemiology:

Epidemiology. The old Celiac Disease Epidemiology: Epidemiology 1 1 Epidemiology The old Celiac Disease Epidemiology: A rare disorder typical of infancy Wide incidence fluctuates in space (1/400 Ireland to 1/10000 Denmark) and in time A disease of essentially