Celiac Without Borders: A Global Perspective · Celiac Disease: A Hidden Epidemic Affects about 1%...

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