Om Gupta (60) lost 35 kgs over four years. He visited every doctor in town the exact figure was 97. All kinds of tests were performed,including those for AIDS,TB and cancer.
Everybody was treating the symptoms,nobody looked at the root,
Then last year,after yet another blood test and biopsy,he was diagnosed with Celiac Disease (CD). It turned out that he had been living with the disease for over 50 years.
Similar was the case of Swerneek Singh,a social worker. She kept losing weight,lived with an unsettled stomach,low haemoglobin count and weak bones. She was diagnosed with Celiac Disease in 2007.
Today,both Gupta and Singh are leading normal lives.
Celiac Disease is a condition triggered by hypersensitivity to a protein called gluten which is found in grains including wheat,oats,barley and rye. The only treatment is to stay away from products containing gluten. Experts say that lack of awareness about the disease is the reason why patients remain oblivious to the disease for years till the damage has been done.
By the time I knew I had Celiac Disease,I was weak and had early osteoporosis, Singh said. Now with a gluten-free diet,I have gained weight and no longer feel exhausted.
Recent studies have shown that the disease has an incidence of 1 in 100.
Ishi Khosla,clinical nutritionist and founder president of the Celiac Society for Delhi said: Awareness is still limited and the condition presents itself in many ways typical,atypical and even silent,which can make diagnosis difficult. I see patients who have been considered for growth hormone for short stature,hospitalised repeatedly,and even been prescribed anti-tubercular treatment for diarrhoea and weight loss.
For Deepa Karira,another patient,staying away from gluten gets difficult at times. I cant have golgappas or pizzas. When I go to McDonalds,I cannot have burgers. But she agrees that this is the only way to lead a healthy life.
Experts say children diagnosed with the disease learn to adapt quickly to the changed diet culture. Paediatric gastroenterologist Dr Saranth Gopalan said: The only treatment is to stay away from wheat and wheat products and the younger the child,easier it is for him to imbibe the modifications in diet.
Dr Vaneeta Kapur,a member of the Celiac Society of Delhi,said: It is important to create awareness. The Celiac Society is trying to rope in manufacturers,hotels and restaurants and sensitise the food industry for better labelling and full disclosure of all sources of gluten on packaging.
WHY DIAGNOSIS IS DIFFICULT
Most patients are diagnosed between 40 to 60 years of age and have symptoms for approximately 9 years before diagnosis. This is because:
* A majority do not have classic Celiac Disease,but the silent version. Studies show that there are approximately 6 silent/asymptomatic cases for each symptomatic one.
* The symptoms are changing and cover a large spectrum of disorders. The silent cases have no or minimal gastrointestinal symptoms,but suffer from related auto-immune diseases.
* Earlier,91 per cent patients had diarrhoea. Since 2001,the figure has dropped to 37 per cent.
* Symptoms can wax and wane over a long period of time.