CELIAC DISEASE IN PAKISTAN: CHALLENGES AND OPPORTUNITIES
AbstractCeliac disease is a permanent intolerance to gluten (aprotein present in wheat, rye and barley), whichcauses damage to the small intestinal mucosa by anautoimmune mechanism in genetically susceptibleindividuals. The villous atrophy that ensues can leadto malabsorption of a variety of macro andmicronutrients including iron, calcium, folate and fatsoluble vitamins.1 Celiac disease was thought to be arare malabsorptive disorder of infancy and childhood.However, it is now considered to be a common,chronic, multi-system disorder that can present at anyage when gluten is present in the diet.Typical symptoms of celiac disease areabdominal pain, diarrhoea and weight loss. However,many individuals present with non-gastrointestinal(atypical) symptoms including anaemia, extremeweakness, short stature, osteoporosis, elevated livertransaminases, neuropathy, menstrual irregularitiesand infertility. Additional symptoms in childreninclude vomiting, delayed growth and puberty anddental enamel defects. Dermatitis herpetiformis (DH)is ‘celiac disease of the skin’ and presents with achronic, severely itchy, blistering rash that is poorlyresponsive to conventional therapies. A skin biopsyhelps confirm the diagnosis of DH.Celiac disease is a hereditary disorder. Bothfirst and second-degree relatives of the patient withceliac disease have a significant (5–15%) risk ofdeveloping the disorder. Other high-risk groupsinclude patients with autoimmune disorders, e.g.,type 1 diabetes, thyroiditis, and Down syndrome.Highly sensitive and specific serologicaltests are available to screen for celiac disease.2,3 Thecurrently recommended tests are the serum IgAtissue transglutaminase antibody (TTG) and the IgAendomysial antibody (EMA). These tests have asensitivity and specificity of greater than 90%. TheTTG is currently the test of choice and is widelyavailable worldwide. IgA deficiency is common inceliac disease and hence total serum IgA level mustalso be measured to avoid a false-negative result. Theserological tests are less reliable in children under 3years of age. Also, the patient must be consuming anormal, gluten-containing diet at the time of testing.A negative test does not rule out celiac disease.Serological screening is recommended for all highrisk individuals. Patients with a positive TTG testshould be referred for endoscopic small intestinalbiopsies for confirmation of the diagnosis.Endoscopic biopsies, still remain the gold standardfor diagnosis.Celiac disease can be effectively treated by astrict, life-long adherence to a gluten-free diet.However, a gluten-free diet should not be startedbefore a biopsy is done, as the diet will heal theintestinal lesion and affect the interpretation of thebiopsy making confirmation of the diagnosisdifficult.Celiac disease is one of the most commonchronic gastrointestinal disorders in the world. Thedisease occurs in about 1% of the population.1–3However, it is estimated that 90% of theseindividuals remain undiagnosed. The prevalence ofceliac disease in Pakistan is unknown. However, it isfelt to be a very common disorder both in childrenand adults.It is well recognised that awareness of celiacdisease amongst health professionals is poor anddelays in diagnosis are common. Unrecognised orpoorly treated celiac disease can lead to a variety ofcomplications including nutritional deficiencies likeanaemia and osteoporosis, reproductive disorders,increased risk of developing other autoimmunedisorders and intestinal lymphoma. Serologicalscreening of minimally symptomatic patients or thosewith atypical/non-gastrointestinal complaints cansignificantly increase the rate of diagnosis of celiacdisease.4While the gastrointestinal medicalcommunity’s main focus is on chronic viral hepatitisand infectious diarrhoeal disorders, celiac diseasemay not be getting its due attention in Pakistan. Twoaspects of this issue need to be addressed:1. Determining the scope of celiac disease inPakistanThis is not known and needs to beinvestigated. How common is this disease and howdoes it present clinically? To answer these questions,data from various medical institutions across thecountry should be collected to study the patientcharacteristics and various clinical presentations andmanifestation of celiac disease. This informationshould be used for improving awareness of celiacdisease in the medical community.J Ayub Med Coll Abbottabad 2009;21(3)2 http://www.ayubmed.edu.pk/JAMC/PAST/21-3/Editorial.pdfWith the availability of serological testing, astudy to investigate the prevalence of celiac diseasein Pakistan should be feasible.2. Availability of gluten-free foods in PakistanAlthough a gluten-free diet provideseffective treatment for celiac disease, this diet iscomplex, costly and socially restrictive. The problemis further compounded by the fact that wheat is themost affordable and readily available grain in thePakistani diet. Alternates like rice are expensive andoutside the reach of the general population especiallyfor long term use. Maize can provide a less costlyalternative but contamination with gluten-containinggrains remains a concern in the flour productionprocess.A gluten-free diet poses several otherchallenges. Contamination with gluten-containinggrains always remains a concern. The patients live inconstant fear of this possibility. The problem can beremedied somewhat by accurate labelling of foodproducts. Unfortunately, adequate food labelling lawsdo not exist in Pakistan. Lobbying with thegovernment to enforce mandatory and accuratelabelling laws can get this process moving forward.Availability of manufactured gluten-freefoods in Pakistan is limited. Gluten-free foodsimported from foreign countries are very expensiveand will never be affordable for masses. NorthAmerican data shows that gluten-free foods are atleast 2.5 times more expensive than their regularcounterparts. Therefore, efforts must be made ingetting the food producers and suppliers to creategluten-free foods from locally available ingredients.Compliance with a gluten-free diet will improve if itis easily available and affordable.Patient information and education remains acornerstone in the management of any disorder.Pakistani Celiac Society is a recently establishednational, volunteer, non-profit organization whosemission is to provide support and services toindividuals and families with celiac disease throughprogrammes of awareness, advocacy and education.The web site of the Society (www.celiac.com.pk)contains information on various aspects of celiacdisease and gluten-free diet both in Urdu and Englishlanguages. Printable brochures are also availablewhich can serve as a source of useful informationboth for the patients and health professionals.Advocacy strategies by the Society include gettingthe medical profession involved in the process,creating patient forums for sharing information andideas and liaison with food industry for better andaffordable locally manufactured gluten-free products.In summary, there celiac disease in Pakistancomes with many challenges. However, at the sametime there are some exciting opportunities. This is agood time for medical professional organizations topartner with patient support groups in order toimprove awareness of celiac disease in the country.These efforts will eventually result in timelydiagnoses of celiac disease and better availability ofaffordable gluten-free food products for patients. Thetask is uphill but can be accomplished withdedication and commitment.
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