CELIAC DISEASE IN PAKISTAN CHALL

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					                                                                                        J Ayub Med Coll Abbottabad 2009;21(3)


EDITORIAL
                CELIAC DISEASE IN PAKISTAN: CHALLENGES AND
                              OPPORTUNITIES
                                       Mohsin Rashid, Aamir Ghafoor Khan*
Division of Gastroenterology & Nutrition, Department of Paediatrics, Faculty of Medicine, Dalhousie University, Halifax, Nova Scotia, Canada,
                           *Faculty of Gastroenterology, Post Graduate Medical Institute, Peshawar, Pakistan

Celiac disease is a permanent intolerance to gluten (a                     biopsies for confirmation of the diagnosis.
protein present in wheat, rye and barley), which                           Endoscopic biopsies, still remain the gold standard
causes damage to the small intestinal mucosa by an                         for diagnosis.
autoimmune mechanism in genetically susceptible                                       Celiac disease can be effectively treated by a
individuals. The villous atrophy that ensues can lead                      strict, life-long adherence to a gluten-free diet.
to malabsorption of a variety of macro and                                 However, a gluten-free diet should not be started
micronutrients including iron, calcium, folate and fat                     before a biopsy is done, as the diet will heal the
soluble vitamins.1 Celiac disease was thought to be a                      intestinal lesion and affect the interpretation of the
rare malabsorptive disorder of infancy and childhood.                      biopsy making confirmation of the diagnosis
However, it is now considered to be a common,                              difficult.
chronic, multi-system disorder that can present at any                                Celiac disease is one of the most common
age when gluten is present in the diet.                                    chronic gastrointestinal disorders in the world. The
          Typical symptoms of celiac disease are                           disease occurs in about 1% of the population.1–3
abdominal pain, diarrhoea and weight loss. However,                        However, it is estimated that 90% of these
many individuals present with non-gastrointestinal                         individuals remain undiagnosed. The prevalence of
(atypical) symptoms including anaemia, extreme                             celiac disease in Pakistan is unknown. However, it is
weakness, short stature, osteoporosis, elevated liver                      felt to be a very common disorder both in children
transaminases, neuropathy, menstrual irregularities                        and adults.
and infertility. Additional symptoms in children                                      It is well recognised that awareness of celiac
include vomiting, delayed growth and puberty and                           disease amongst health professionals is poor and
dental enamel defects. Dermatitis herpetiformis (DH)                       delays in diagnosis are common. Unrecognised or
is ‘celiac disease of the skin’ and presents with a                        poorly treated celiac disease can lead to a variety of
chronic, severely itchy, blistering rash that is poorly                    complications including nutritional deficiencies like
responsive to conventional therapies. A skin biopsy                        anaemia and osteoporosis, reproductive disorders,
helps confirm the diagnosis of DH.                                         increased risk of developing other autoimmune
          Celiac disease is a hereditary disorder. Both                    disorders and intestinal lymphoma. Serological
first and second-degree relatives of the patient with                      screening of minimally symptomatic patients or those
celiac disease have a significant (5–15%) risk of                          with atypical/non-gastrointestinal complaints can
developing the disorder. Other high-risk groups                            significantly increase the rate of diagnosis of celiac
include patients with autoimmune disorders, e.g.,                          disease.4
type 1 diabetes, thyroiditis, and Down syndrome.                                      While       the    gastrointestinal   medical
          Highly sensitive and specific serological                        community’s main focus is on chronic viral hepatitis
tests are available to screen for celiac disease.2,3 The                   and infectious diarrhoeal disorders, celiac disease
currently recommended tests are the serum IgA-                             may not be getting its due attention in Pakistan. Two
tissue transglutaminase antibody (TTG) and the IgA-                        aspects of this issue need to be addressed:
endomysial antibody (EMA). These tests have a                              1. Determining the scope of celiac disease in
sensitivity and specificity of greater than 90%. The                       Pakistan
TTG is currently the test of choice and is widely                                     This is not known and needs to be
available worldwide. IgA deficiency is common in                           investigated. How common is this disease and how
celiac disease and hence total serum IgA level must                        does it present clinically? To answer these questions,
also be measured to avoid a false-negative result. The                     data from various medical institutions across the
serological tests are less reliable in children under 3                    country should be collected to study the patient
years of age. Also, the patient must be consuming a                        characteristics and various clinical presentations and
normal, gluten-containing diet at the time of testing.                     manifestation of celiac disease. This information
A negative test does not rule out celiac disease.                          should be used for improving awareness of celiac
Serological screening is recommended for all high-                         disease in the medical community.
risk individuals. Patients with a positive TTG test
should be referred for endoscopic small intestinal



                                http://www.ayubmed.edu.pk/JAMC/PAST/21-3/Editorial.pdf                                                      1
                                                                        J Ayub Med Coll Abbottabad 2009;21(3)


          With the availability of serological testing, a   individuals and families with celiac disease through
study to investigate the prevalence of celiac disease       programmes of awareness, advocacy and education.
in Pakistan should be feasible.                             The web site of the Society (www.celiac.com.pk)
2. Availability of gluten-free foods in Pakistan            contains information on various aspects of celiac
          Although a gluten-free diet provides              disease and gluten-free diet both in Urdu and English
effective treatment for celiac disease, this diet is        languages. Printable brochures are also available
complex, costly and socially restrictive. The problem       which can serve as a source of useful information
is further compounded by the fact that wheat is the         both for the patients and health professionals.
most affordable and readily available grain in the          Advocacy strategies by the Society include getting
Pakistani diet. Alternates like rice are expensive and      the medical profession involved in the process,
outside the reach of the general population especially      creating patient forums for sharing information and
for long term use. Maize can provide a less costly          ideas and liaison with food industry for better and
alternative but contamination with gluten-containing        affordable locally manufactured gluten-free products.
grains remains a concern in the flour production                     In summary, there celiac disease in Pakistan
process.                                                    comes with many challenges. However, at the same
          A gluten-free diet poses several other            time there are some exciting opportunities. This is a
challenges. Contamination with gluten-containing            good time for medical professional organizations to
grains always remains a concern. The patients live in       partner with patient support groups in order to
constant fear of this possibility. The problem can be       improve awareness of celiac disease in the country.
remedied somewhat by accurate labelling of food             These efforts will eventually result in timely
products. Unfortunately, adequate food labelling laws       diagnoses of celiac disease and better availability of
do not exist in Pakistan. Lobbying with the                 affordable gluten-free food products for patients. The
government to enforce mandatory and accurate                task is uphill but can be accomplished with
labelling laws can get this process moving forward.         dedication and commitment.
          Availability of manufactured gluten-free          REFERENCES
foods in Pakistan is limited. Gluten-free foods
                                                            1.   National Institutes of Health Consensus Development
imported from foreign countries are very expensive               Conference Statement on Celiac Disease, June 28-30, 2004.
and will never be affordable for masses. North                   Gastroenterology 2005;128:S1–S9.
American data shows that gluten-free foods are at           2.   Rostom A, Murray JA, Kagnoff MF. American
least 2.5 times more expensive than their regular                Gastroenterological Association (AGA) Institute medical
                                                                 position statement on the diagnosis and management of
counterparts. Therefore, efforts must be made in                 celiac disease. Gastroenterology. 2006;131(6):1977–80.
getting the food producers and suppliers to create          3.   Hill I, Dirks M, Liptak GS, Colletti RB, Fasano A,
gluten-free foods from locally available ingredients.            Guandalini S et al. Guidelines for the diagnosis and treatment
Compliance with a gluten-free diet will improve if it            of celiac disease in children: Recommendations of the North
                                                                 American Society          for   Pediatric Gastroenterology,
is easily available and affordable.                              Hepatology and Nutrition. J Pediatr Gastroenterol Nutr
          Patient information and education remains a            2005;40:1–19.
cornerstone in the management of any disorder.              4.   Catassi C, Kryszak D, Louis-Jacques O, Duerksen DR, Hill I,
Pakistani Celiac Society is a recently established               Crowe SE et al. Detection of celiac disease in primary care:
                                                                 A multicenter case-finding study in North America. Am J
national, volunteer, non-profit organization whose               Gastroenterol 2007;102:1454–60.
mission is to provide support and services to
Address for Correspondence:
Mohsin Rashid, Division of Gastroenterology and Nutrition, Department of Paediatrics, Faculty of Medicine,
Dalhousie University, Halifax, Nova Scotia, Canada.
Email: Mohsin.Rashid@iwk.nshealth.ca




2                            http://www.ayubmed.edu.pk/JAMC/PAST/21-3/Editorial.pdf