Celiac Society

Introduction

The CSI/Celiac Society of India organised a 2-day International Symposium on wheat-related disorders, ISWD 2019, in New Delhi from12-13th January 2019.

Aim

The aim was to draw attention to wheat-related disorders, including CD, one of the world’s most under diagnosed nutritional and medical condition. The symposium with the central theme of “Beyond Celiac & Beyond the Gut” sought to bring experts and authorities on wheat-related disorders from across the globe onto a single platform.

Attendees

Physicians, gastroenterologists, dermatologists, pediatricians, neurologists, nutritionists and other professionals from USA, Canada, Italy, New Zealand, Germany and Israel, besides India, were in attendance to discuss on latest research findings; developments in early diagnosis and treatment of celiac disease and gluten intolerance. ISWD attracted the attention of the right regulatory bodies like FSSAI and Niti Aayog

At a glance, the conference was attended by :

* 950+ people registered and attended the two days of sessions and programs
* 50+ renowned experts brought their valuable perspectives to the program
* 450+ practicing professionals visited the conference to take back useful insights
* 150+ budding medical and nutrition students
* 250+ patients and kins of those suffering turned to the conference for further answers
* 50+ imminent media professionals covered the conference online and offline

Eminent personalities who graced the occasion include Prof Vinod Paul of Niti Aayog, Shri Pawan Agarwal of FSSAI, Dr Naresh Trehan of Medanta Hospitals, Dr KK Aggarwal, past President Indian Medical Association, Dr BS Ramkrishna, Dr Navin Dang and Dr Anupam Sibal.

The Organising Chairman was Dr. Tom O’Bryan, the Organising Secretary was Dr. Sarath Gopalan and Conveyor was Ms. Ishi Khosla.

Background

Celiac Disease was first recognized by the Greeks in the second century AD. The word celiac is derived from ‘koiliaks’ a Greek word meaning ‘suffering of the bowels’. It is an autoimmune disorder that occurs because of ingestion of gluten, a protein present in wheat, barley and rye. In patients having this condition, gluten is not digested completely and this leads to damage to the villi of the small intestine. Villi is the lining of the small intestine that absorbs food.

Signs and Symptoms

An impaired gut leads to a variety of complications, the most prevalent being chronic diarrhea, gastrointestinal disturbances (abdominal bloating, flatulence, abdominal pain, constipation, nausea, vomiting) anemia, skin rashes, osteoporosis, stunted growth etc.

Untreated celiac disease increases the risk of disorders like diabetes, thyroid disorders, liver diseases, asthma, certain types of cancers etc. Intake of wheat also contributes to certain types of disabilities like Autism, developmental delay, Attention Deficit Hyperactivity Disorder (ADHD), Schizophrenia, Ataxia. It also contributes to epilepsy, migraine and a variety of skin diseases like Dermatitis Herpetiformis, Psoriasis and eczema.

Wheat Related Disorders

Listed among the top eight food allergens (others being soy, peanuts, tree nuts, dairy, egg, fish and shellfish), adverse reactions to wheat, apart from celiac disease, can be in the form of an allergy, skin rashes or non-celiac wheat intolerance. Most common symptoms for allergies could be respiratory, asthma, atopic dermatitis, urticaria, anaphylaxis and many others.

The difference between celiac disease and wheat sensitivity is in intestinal permeability and genes regulating the immune response in the gut. Intestinal permeability connotes the ability of the mucosal layer of the digestive tract to prevent bacteria, antigens, and undigested food proteins from seeping through the gastrointestinal barrier. Those who have celiac or wheat sensitivity often have a high degree of permeability, also called the leaky gut. Although gluten-sensitive patients may have diarrhea, abdominal pain and other symptoms associated with celiac disease, they do not necessarily have the same type of damage to the mucosa in celiac disease.In other words the mechanisms of intestinal damage are different but the manifestations & management in both conditions are similar.

That there is a wide range of diseases and medical conditions that are associated with intake of wheat is revealed by the statement of Dr. Alessio Fasano (Director of Pediatric Gastroenterology at the Massachusetts General Hospital for Children, Boston). He claims that around 300 health conditions are linked to wheat/gluten intolerance.

Incidence

Epidemiological research shows that the frequency of celiac disease continues to be on the rise. In the United States, for example, the frequency has increased over the last 40 years from 2 cases per thousand to 10 cases per thousand (1%). Though authentic data is unavailable about prevalence in India, according to projections, it is estimated that 1-2% of the Indian population suffers from celiac disease. It has gone up four times since the 1960s.

Highly Under diagnosed condition

• Wheat sensitivity is often compared to an iceberg where the visible tip represents those with the symptomatic ailment. The greater proportion of the iceberg represents those with silent or latent forms of the disease. It is estimated that over 90% remain undiagnosed. According to estimates, it can take more than 10 years from symptoms to diagnosis, even in the Western countries.

• Learnings from the Symposium

• That wheat sensitivity exists beyond Celiac and beyond the gut

• Non-Celiac Wheat sensitivity is an entity

• Modern wheat is immunogenic

• A paradigm shift in treating nutritional deficiency disorders and modern lifestyle diseases like diabetes, heart disease, obesity, auto immune disease and certain cancers, autism, neuro psychiatric diseases and neurological condition, reproductive disorders, dermatological disorders

• Importance of gut health, microbiome and inflammation

• Early diagnosis

• Need for mass screening in high risk population

• Need to provide alternative foods, regulation and research

• Recommendations

Awareness and Advocacy

1. Increase awareness about celiac disease and wheat related disorders amongst the public, healthcare professionals and the food industry.

2. Advocacy: Amongst policy makers. In addition, association with other national and global institutions is required. There is a need for mass screening in high-risk populations. Also, inclusion of celiac disease in the Rights Of Persons with Disabilities Act, drawing from policies of the US and other Western countries.

3. Catalyse the speed of information dissemination on latest research about wheat sensitivity to professionals and public through special events, forums, case study, presentations, lectures, workshops, seminars, national and international conferences.

4. Ensure financial aid reaches the underprivileged through government programmes including CSR funds. For example, Italy?? to those suffering from celiac disease, to lessen the impact of the price difference in gluten-free food.

5. Increase availability of alternate gluten-free grains, through the public distribution system.

Food Regulation

1. Food regulation and implementation of laws regarding declaration of gluten and allergens now becomes imperative.

2. Sensitise food manufacturers, hotels and restaurants to follow good manufacturing practices, food labelling and provide food alternatives.

3. 11?? Create a task force of food manufacturers to formulate incentives for the industry, which could include tax relief, reduction in cost of ingredients and food testing, to benefit the consumer.

Diagnosis, Nutrition Support and Research

1. Early diagnosis of wheat related disorders: Newer and cheaper techniques are necessary for our citizens.

2. Establish a nationwide support structure to provide psychological support to families who need to manage wheat related disorders.

3. Conduct specialized training courses for dieticians and doctors in hospitals. Sensitise parents and teachers through schools, drawing from the ‘say no to crackers’ campaign)

4. Encourage research on new treatments and better management of the disorder with adequate funding.