When Muskan, a 23-year-old MBA student from Delhi, was 11, a paediatrician finally identified the cause of years of stomach pain, vomiting, bloating, skin rashes and poor growth. After confirming coeliac disease through a blood test, he handed her a rasgulla and said, “Congratulations. We finally know what’s wrong with you.”

“It may sound strange to congratulate someone for being diagnosed with an autoimmune disease,” she recalls. “But after years of searching for answers, finally knowing what was wrong felt like a relief.”

Dharit Maniar, a 27-year-old real estate professional from Mumbai, spent nearly six months searching for answers after developing fatigue, digestive problems and brain fog at the age of 22. Despite belonging to a family of doctors, recognising coeliac disease took time.

Coeliac disease is an autoimmune disorder in which eating gluten – a protein found in wheat, barley and rye, causes the body’s immune system to attack the small intestine, damaging its lining and affecting nutrient absorption. Studies suggest the condition affects about 1 in 100 people worldwide, although many cases remain undiagnosed. In India, studies have reported similar prevalence, but experts say limited awareness and the wide range of symptoms from digestive distress to systemic issues, mean many people are diagnosed only after years of illness.

Although coeliac disease is medically treated with lifelong avoidance of gluten, its emotional and social impact often receives far less attention.

Life after diagnosis

For both patients, finally receiving a diagnosis brought relief after years of uncertainty. But it also marked the start of lifelong dietary vigilance. Muskan, who also lives with fibromyalgia, postural orthostatic tachycardia syndrome (POTS), migraines, restless leg syndrome and chronic pelvic pain, says accidental gluten exposure triggers much more than digestive symptoms .”My pain worsens, my headaches become more severe, my fatigue increases and several of my other conditions flare up,” she says.

Simple outings require careful planning. She says she constantly thinks about whether safe food will be available, whether she will have enough energy to participate and whether restrooms will be accessible. One incident from her internship continues to stay with her. After delivering her final presentation, her colleagues celebrated at an ice cream parlour. The only flavour she could safely eat was mango, a flavour she dislikes. . “Nobody intended to exclude me, but moments like these remind you that the world isn’t designed with your condition in mind,” she says.

Dharit says everyday activities such as attending weddings, travelling or eating out require meticulous planning because even trace amounts of gluten can trigger the disease. At a music concert in Mumbai that lasted nearly eight hours, he says there was not a single food option he could confidently eat because of concerns about cross-contamination.“I spent the event worrying about what I was going to eat rather than simply enjoying it,” he says.

Not just gastrointestinal

According to Shubha Vivekan, consultant gastroenterology and hepatology, Apollo Speciality Hospitals, Chennai, this shows why coeliac disease should not be viewed simply as a gastrointestinal disorder. “Treatment appears straightforward because it centres on a gluten-free diet, but patients live with constant decision-making, anxiety about accidental gluten exposure, dietary fatigue and social restrictions,” she says. “Even when intestinal healing is achieved, these psychological and social challenges continue to affect quality of life.”

The condition goes beyond what’s on a patient’s plate. Reading food labels, questioning restaurant staff, worrying about cross-contamination, carrying food while travelling and repeatedly explaining the disease to others become part of daily life.

For Dharit, one of the greatest frustrations is the lack of confidence in food labelling and the high cost of gluten-free products. He says patients often contact manufacturers directly to understand ingredients and manufacturing practices before purchasing packaged foods.

Muskan says another challenge has been convincing people that her symptoms are genuine. “For years, my symptoms were dismissed as stress or anxiety. Living with invisible illnesses means constantly having to prove that your symptoms are real.”

Vivian Kapil, consultant psychiatrist, SRM Prime Hospital, Chennai, says many patients initially experience relief because they finally understand the cause of their illness. However, that relief is often followed by the psychological demands of lifelong dietary restrictions. “Many patients feel embarrassed asking for special meals or repeatedly explaining their condition. Anxiety, depression and social withdrawal are therefore much more common than many people realise.” She adds that the constant need to monitor ingredients, interpret labels and remain alert while eating outside can itself become mentally exhausting.

Vasanth R, senior consultant psychiatrist, MGM Malar Hospital, Chennai, describes this as “food fatigue”. “Over time, food stops being associated with pleasure and instead becomes a source of constant vigilance and potential danger,” he says. “Patients often worry about whether they have followed the diet correctly, and when symptoms persist, they may even blame themselves despite adhering to treatment.”

Addressing mental health

Experts say psychological distress may begin long before diagnosis.

Sangeetha Sankaranarayanan, consultant psychiatrist and medical superintendent, SIMS Hospital, Chennai, says many patients spend years wondering why they remain unwell. “Without a diagnosis, patients often begin questioning whether their symptoms are psychological or whether they are imagining them,” she says. “Receiving the diagnosis brings relief, but learning to live with lifelong dietary restrictions creates a different form of stress.” She says stress can itself influence gut symptoms through the gut-brain axis, making emotional well-being an important part of disease management.

For children and adolescents, the challenges can be different. Sabaresh Pandiyan, consultant psychiatrist, Rela Hospital, Chennai, says children with coeliac disease often struggle with feeling different from their peers during birthdays, festivals, school trips and family celebrations. “They frequently ask, ‘Why can everyone else eat these foods while I can’t?’” he says. “Some avoid social events altogether because they fear accidental gluten exposure or being teased.”

He adds that clinicians and families should watch for persistent sadness, anxiety, declining school performance, disturbed sleep, social withdrawal or avoidance of even gluten-free foods, as these may indicate emotional distress requiring professional support.

A multidisciplinary approach

Although a strict gluten-free diet remains the cornerstone of treatment, experts say dietary advice alone is insufficient.

Dr. Vivekan says persistent symptoms should always be evaluated to rule out ongoing gluten exposure or associated conditions, but clinicians should also recognise the psychological burden of living with lifelong dietary restrictions.

She advocates multidisciplinary care involving gastroenterologists, specialist dietitians, psychologists and patient support groups to improve both medical outcomes and quality of life.

Experts recommend routine mental health screening during follow-up visits so that patients experiencing anxiety or depression can receive timely interventions such as cognitive behavioural therapy or stress-management programmes.

Quality-of-life assessments and anxiety or depression screening questionnaires should become part of routine follow-up, alongside annual medical evaluation. Experts also emphasise supporting caregivers and families, who often shoulder much of the daily responsibility of managing the disease.

They say care should be individualised because no two patients experience coeliac disease in the same way. Beyond specialist consultations, patients also benefit from education, counselling and access to reliable support resources that help them navigate everyday life. Support groups can play an equally important role by reducing isolation and allowing patients to learn practical coping strategies from others living with the condition.

For patients, greater awareness remains the greatest unmet need. “People with coeliac disease are not looking for sympathy,” says Dharit. “We want awareness, safe food, better labelling and the opportunity to participate in everyday life without constantly worrying about getting sick.”