Kirti Dawar, Divya Dawar

In 2014, our family’s life changed when we discovered that our youngest member, 12-year-old Harsh, had celiac disease. The diagnosis felt like a punishment, casting a shadow over our home. The subsequent recommendation from our doctor to undergo the tissue transglutaminase IgA test (tTg-IgA) revealed that all of us, except our father, tested positive. It was a moment filled with fear and confusion, leaving us questioning why this happened and what steps we should take next. However, amidst the turmoil, we found a silver lining. Knowing the root of our health issues meant we could now make efforts to lead healthier lives.
Our journey began in 2008 when Harsh, then about 8 years old, didn’t exhibit the typical growth of a boy his age. Despite a healthy appetite and active lifestyle, his height and weight lagged. Doctors initially attributed this to genetics, considering our parents’ shorter stature. But as years passed without significant growth, our concerns deepened. Finally, in 2014, a pediatrician suggested testing Harsh for tTg-IgA and performing an endoscopy. These tests confirmed that Harsh had celiac disease, providing clarity to the symptoms we had previously overlooked, such as abdominal pain, bloating, diarrhea, and mood swings.
The revelation prompted the entire family to undergo tTg-IgA testing, which resulted in positive diagnoses for our mother, myself (Divya), and my sister, Kirti. Although Kirti and I exhibited fewer symptoms, we were both underweight and had not experienced typical growth, which had been dismissed as poor eating habits.
Over time, we all suffered from severe diarrhea, vomiting, stomach aches, irritability, bloating, and occasionally constipation. I also struggled with anemia and irregular menstrual cycles.
We immediately adopted a gluten-free diet, which proved most challenging for Harsh. He could no longer indulge in the foods most children enjoy or partake in treats at friends’ birthday parties. Dining out became a thing of the past, and our mother took on the responsibility of preparing gluten-free meals for our school and college lunches.
In India, where gluten-free options were scarce, adapting our diet was daunting. Wheat chapati or roti is a staple in North India, and finding alternatives that could satisfy gluten-sensitive and non-sensitive family members was a delicate balance.
One of the most difficult experiences post-diagnoses occurred at an Indian wedding, renowned for its lavish spreads, much of which contain gluten. The temptation was immense, and the skepticism from relatives who dismissed celiac disease as a myth only added to the challenge. They insisted that wheat was healthy and that we weren’t eating enough. Standing firm against pressure to consume harmful foods, especially in front of a child-like Harsh, was heart-wrenching. Yet, as siblings, we stood united and resilient.
Every time we visited our relatives, our parents began packing our food separately. It took a few years, but now they respect our dietary requirements and no longer force us to eat what we know is harmful—an achievement. For Kirti and me, it was also a challenge with friends, as they were reluctant to try to find allergen-friendly places. We could no longer frequent Pizza Hut, Domino’s, or McDonald’s. Those who valued us stayed by our side.
Those who valued us stayed by our side, and the rest at least became aware that people can have different dietary limitations that need to be respected.
When we mentioned our gluten-free diet, people often joked, “Why are you dieting when you’re already so thin? Do you want to disappear?” But they didn’t understand that this diet was essential for our survival. Once we all started gaining weight and people noticed the improvement, they accepted our lifestyle.
Around the same time, we launched our Instagram page — glutenfree_happyme_. We aimed to share tips on managing a gluten-free lifestyle, provide resources, and raise awareness about celiac disease. We were adapting to our new lifestyle and learning many things. We began scrutinizing labels, contacting brands to confirm if their products were gluten-free or at risk of cross-contamination, and speaking with restaurant managers to ensure the food was safe. We started experimenting with gluten-free recipes, creating alternatives.
We started experimenting with gluten-free recipes, creating alternatives to wheat roti using jowar, ragi, and rice flour and recipes for gluten-free cakes, momos, and gol gappe to satisfy our cravings. We’ve been sharing these on our Instagram page to ensure that young ones diagnosed with celiac disease don’t have to compromise on their happiness as our brother did.
Through our page, we discovered a gluten-free community group where families shared their struggles and offered support. This group was a blessing, making us feel less isolated and helping us forge meaningful connections. We met individuals dedicated to making India safer for those with allergies and spreading awareness.
The internet has been a powerful tool. Since celiac disease wasn’t very common in India, we gained much knowledge from Google and other online groups. An abundance of information is available to help you prepare for the challenges you might face.