Dr. S.K. Mittal, president (CSO), made a presentation on the present situation of CD. The salient points discussed in the presentation are summarised below:
- High prevalence (1%) of celiac disease (CD) in the country (overall 10-12.5 million affected individuals) with equally high prevalence of predisposing HLA antigen DQ2 and DQ8 even in southern and northeast parts of the country, which have comparatively less manifested disease.
- The prevalence (10-15%) is higher among populations with public health problems such as anemia, short stature and severe malnutrition. In view of this, CD needs to be recognized as an important National Public Health problem.
- A sustained public awareness campaign, targeting health care providers besides general public needs to be launched.
- To ensure early diagnosis, serological test (anti TTg IgA) should be made available in all Government Hospitals.
- Individuals afflicted with CD need to have lifelong gluten free food.
- Welcoming recent action of FSSAI regarding laying down the standards of gluten free and low gluten foods and labeling of prepackaged foods of the same, it was suggested that further action be taken to eliminate misleading labels such as “wheat free” and “made from naturally gluten free ingredients” on packaged foods. In allergen listing the word “wheat” should be replaced by “gluten”.
- Testing for gluten content by an independent accredited lab must be a prerequisite for granting license for manufacturing gluten free foods.
- To ensure quality control, a large number of laboratories, in both public and private sector, capable of testing gluten in foods, must be set up throughout the country wherein both manufacturers and consumers can get their products tested.
- Consumers should be offered testing at reduced rates.
- Gluten free foods (life saving intervention) must be exempted from GST. Income tax benefits to be offered to celiac parents/individuals.
Following the presentation, each of the issues highlighted were discussed in depth by the expert committee. CD is easily diagnosable, and is very easily treated with a gluten free diet. However there are many obstacles to recognition and treatment of this common disease which is estimated to affect around 10 million Indians. The three major issues highlighted during the discussion were (1) poor awareness of the disease among both health care professionals and the general public leading to significant morbidity; (2) the lack of uniform diagnostic pathways for CD and unavailability of diagnostic kits in the public sector; and (3) poor availability and regulation of gluten free foods. Addressing each of these issues would go a long way towards ameliorating the burden of CD in the country.
Based on the discussion, the following specific recommendations are made to the Indian Council of Medical Research and the Department of Health Research:
- CD may be listed as a public health problem, particularly in states where its prevalence exceeds 1%.
- Increased awareness of CD is necessary among health care givers as well as the general public. This can be achieved through ICMR sponsored lectures/seminars during annual conferences of various professional bodies. ICMR may request Presidents/Secretaries of organizations for a session in their annual conference and nominate a speaker from the Task Force or from its panel of experts to speak on the subject. It was suggested that this could be done in project mode by issuing a call for proposals to increase awareness of CD.
- Guidelines for CD management already developed by ICMR should be popularized by uploading on the websites of organizations and should also be sent as a manuscript for publication to Indian Journal of Pediatrics and other specialty journals.
- The indigenously developed kit for CD diagnosis is in step with the “Make in India” concept currently being popularized. There should be a formal multicentre validation study of this kit which should be planned by a task force constituted for this purpose (the three sites of the earlier task force study may be involved). This will allow its wide use.
- ICMR may recommend to the Central and State governments that tertiary care centres/ medical colleges with departments of Gastroenterology and with pediatric gastroenterology services should be provided with appropriately validated diagnostic kits.
- The committee recommended that labelling issue demanded urgent attention with creation of gluten testing facilities in accredited labs. It was suggested that a separate meeting at FSSAI dedicated to this should be planned with participation of the CSO.
- The ICMR should strongly recommend to the FSSAI that gluten free foods in the list of medical foods exempt from GST. This will provide much needed relief to the families of patients suffering from CD as gluten free foods are currently priced 5 times as much as normal foods.
- The ICMR should strongly recommend to the Ministry of Health and through MoH to the Finance Ministry that there be income tax benefits for the families of CD patients, along the lines already available for certain chronic disabilities.
