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India should worry about underdiagnosis and overdiagnosis of coeliac disease

BMJ 2014; 348 doi: https://doi.org/10.1136/bmj.g2046 (Published 19 March 2014) Cite this as: BMJ 2014;348:g2046
  1. Pankaj Vohra, senior consultant, pediatric gastroenterology, Max Super Speciality Hospital, Press Enclave Marg, Saket, Delhi 110021, India
  1. pankajvohramd{at}yahoo.com

Lack of awareness means patients are being let down, says Pankaj Vohra

As a paediatric gastroenterologist in Delhi, having seen more than 1000 cases of coeliac disease in the past 15 years, I am concerned about both underdiagnosis and overdiagnosis.1

Underdiagnosis is common in adults and in children from most of the so called hinterland, primarily because of limited awareness. Coeliac disease was not taught in medical schools until recently, and India has no standard re-certification process. For most doctors, diarrhoea means infection and, if recurrent, either reinfection or in some cases intestinal tuberculosis. It also does not help that coeliac disease has so many manifestations, especially extraintestinal. And often if a doctor can’t “fix” a patient in a day or two, or does not prescribe antibiotics, the patient will go to another doctor. This so called shopping for a cure can delay diagnosis further. Also, many children are seen by general physicians who are not attuned to looking for growth problems, which is an important marker for coeliac disease.

Conversely, there are pockets in India, mostly in the northern cities of the wheat eating belt, where awareness of coeliac disease has been drilled into paediatricians and general physicians. They are eager to make the diagnosis, using serology reports that show a tissue transglutaminase antibody concentration merely two to three times the upper limit of normal. In a country beset with parasitic disease, this could well give false positive results and unfortunately not all laboratories are accredited.

Centres of excellence performing endoscopy in children are limited in number, and experienced pathologists perhaps even more so, but making a diagnosis of coeliac disease with lifelong ramifications based on a borderline serology report is definitely not acceptable.

For some doctors and most patients, endoscopy seems too expensive, difficult, or painful to carry out (adults are not sedated and they communicate that experience to children). However, endoscopy is recommended and worth it: a 10 minute procedure can confirm if a patient needs a gluten free diet for life or not. Too often I see children receiving a gluten free diet for a year, two, or even longer, based on unconvincing serology reports.

Assuming that an accurate diagnosis has been made, the doctor spends at most 20 minutes counselling the patient and may recommend a dietician (of which there are a limited number with experience of gluten free foods). But for the most part, patients are left on their own, at the mercy of the internet and pamphlets listing common foods that contain gluten. Many live in smaller cities and may not have continuous access to the internet or to a doctor familiar with this condition.

Key advice, such as “No gluten ever for life,” “Look for hidden sources of gluten,” and “Inform the school,” may not have been given.

Often advice is vague, and it is friends and extended family who fill the gaps: “How can the child live without wheat?” “Gluten free is only for a year.” “You can have gluten once a week and then slowly get back to a normal diet once your symptoms disappear.” Unfortunately, myths about the disease and its treatment abound, and comments may even include the dismissive: “Oh, don’t worry about this new breed of doctors and their newfangled diagnoses of food allergies and intolerances,” and the dangerous: “Don’t worry, I know someone who can cure coeliac disease.”

Willingly or unwillingly, families stop wheat for the patient and may notice improvement but the reality of maintaining a gluten free diet hits them in a week or two. Many gluten free grains (including millets) are grown in India, and Indian cuisine has many gluten free dishes. The key is to use gluten free flours and to learn which packaged food products contain gluten. Can children eat ice cream or chocolate without fear of gluten? Why is there no certification for packaged foods to assure parents that they are not poisoning their child? Could public awareness be raised so that affected children are given food they can enjoy? Are there restaurants where you can get safe food?

Few children that I see with coeliac disease have the resources to import gluten free foods or buy them at premium prices in the local market. Assuming that about 1% of the north Indian population has coeliac disease we might expect roughly five million people with this condition.2

What should be done? In a country where infectious diseases dominate public policy, healthcare planners need to step in. This process is beginning: a task force on coeliac disease has been established in the Indian Council of Medical Research and the Department of Biotechnology has instituted a programme to fund coeliac disease research. But healthcare providers must first agree on the criteria for diagnosis. Doctors should be made aware of coeliac disease and its presentations. We need gluten free food certification. Families need to be taught that patients can never eat any gluten, and this will lead them to demand more from the food and hospitality industries. Players in these and the drug industries must take up the challenge of meeting these medical needs.

The aim should be to have an accurate diagnosis at the appropriate time and to then treat coeliac disease as a condition that requires a strictly modified diet, which is readily available and does not restrict schooling, play, work, or any other aspect of life.

Notes

Cite this as: BMJ 2014;348:g2046

Footnotes

  • Competing interests: I have read and understood the BMJ Group policy on declaration of interests and have no relevant interests to declare.

  • Read the BMJ’s recent Clinical Review on coeliac disease, www.bmj.com/content/348/bmj.g1561.

  • Provenance and peer review: Not commissioned; externally peer reviewed.

References

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