Hi, we are the desi celiac sisters – brought up in Dubai, UAE. Meena has moved to Houston and I am based in Dubai.
I was diagnosed with celiac disease in 2010. I have always been thin and noticed that I am losing weight for a few months (without trying). In that same time period, my thyroid tests started varying continuously despite being on thyroid medicine (for Hashimotos) since 2002.
I went to a new endocrinologist who tested me for celiac disease. My blood work indicated high antibody levels and I was told to get on a strict gluten free diet for the rest of her life.
My doctor also said that everyone in the family should get tested as celiac is genetic.
So, my sister Meena got tested too even though she had no symptoms of celiac disease (she also has Hashimotos).
Her blood work showed high antibodies too. The doctor was so surprised that she recommended an endoscopic biopsy and which also showed intestinal damage to everyone’s surprise.
We did not find it very hard to adapt to the diet (at home) as alternative gluten free flours were available – at that time, the biggest worry was how to replace our roti. The two of us would have wandered around confused if it wasn’t for mum just rolling her eyes at her adult daughters throwing a fuss about not being able to eat rotis. Mom learned and taught us to make amaranth and sorghum rotis.
But eating outside was difficult – both, for me in Dubai and for Meena in Houston/Sugar Land. Access to other gluten free products like bread, pizza, cakes, etc was not easy then.
Thankfully, it’s a lot better now and we have a wide range of products available in most supermarkets. Eating in restaurants is better now compared to 12 years ago, but we still do have a long long way to go in terms of awareness of cross-contamination.
India has been the toughest for us when we visit. It’s almost been almost impossible to eat out anywhere. Think it’s only the 5-star hotels who understand – simply because they deal with clientele from all over the world.
That was the reason why we started this account on IG – we wanted to connect with other desis – globally, as well as in India.
In addition, this has given us an opportunity to explore eating/cooking outside our comfort zone as well as find gluten free alternatives for our traditional comfort food. It has also given us a chance to learn more about cooking, enjoy making desserts which we’d never done and learn from everyone else!
Our biggest frustration is that we still get asked what will happen if we eat just a little gluten – which is hard for us because we don’t react to cross-contamination – but we do have a full blown Celiac disease!