You are a celiac, when and how were you diagnosed?

I was diagnosed with Celiac disease when I was 8 years old. It was not an extremely straightforward experience. Initially, I fell sick with a fever and temperature every few months and was extremely weak and short for my age. I did not realize this at the time but it was because I was immunocompromised due to celiac disease. I never had the classic symptoms that usually affect the digestive system. I was constantly misdiagnosed in India with other diseases which the doctors had assumed based on how weak I was. I was finally diagnosed in the US when my pediatrician decided to run a TTG test. My TTG number was extremely high but to confirm that I had celiac disease I had a biopsy. Straight after the biopsy, it was confirmed I had celiac disease and I have been on a 100% gluten-free diet ever since.

You had been in India and UK (and many other countries) so what difference have you noted in relation to the availability of gluten free food in the market?

I was diagnosed 10 years ago and back then the availability of gluten free grocery items at stores in India was extremely limited. I usually carried most things back from the US and my mum made gluten free atta at home using a chakki. When I went to boarding school in the UK at 11 I realized how easily available gluten free items were in all supermarkets. Similar to the supermarket’s restaurants in India barely had knowledge of how to cater for someone with celiac whereas many restaurants in the UK had GF items clearly marked. Over the past 10 years, it has been exciting to see how the levels of awareness have increased and restaurants and supermarkets have adapted to this.

How did you come up with the idea of Glutenfreejio app and how is this serving the celiac community? Please share what this app is all about with our readers.

Whenever I visited other countries on holiday, I realized that most countries had an app that can easily help locate restaurants with gluten free menu’s. I realized that the Indian celiac community really needed something like this. Hence, I decided to create an app that can help locate gluten free restaurants near you once you put in your location. I felt that more features could be incorporated into the app so I decided to add a function where users can also locate grocery stores selling gluten free items near them. Further, the app also has all the resources that are available on the gluten free jio website. I hope this app helps anyone living with celiac disease in India as well as foreigners when they are on holiday in India.

What changes would you like to see in the Indian scenario regarding Celiac/ gluten intolerance and gluten free food?

Firstly, I hope that there is an increase in awareness and that the misconceptions regarding celiac disease are cleared up. I feel that sometimes people don’t take Celiac Disease seriously as they don’t understand the effects that it has on people who are suffering from it, so I hope this changes in the future. Secondly, I hope that more restaurants that are celiac-friendly start to appear.

Is the Indian govt /FSSAI sensitised about the gravity of the situation and problems being faced by gluten intolerant? What changes would you like to bring?

Over the past few years, FSSAI has stated that any product that has less than 20ppm mg per kg can be labelled as gluten free. However, there is no way to check that food item labelled as gluten free are actually gluten free. The reason it cannot be 100% trusted is that there is no specific penalty for these regulations not being followed. For eg. sometimes items I have come across at the grocery store say Gluten Free but when I read the other information on the label it says that it is processed in a factory handling wheat etc. therefore it is not 100% GF. Such things need to be taken into account when companies are producing their food labels. The government is not particularly involved in rules and regulations regarding Celiac Disease. I think a step forward would be the government actually recognising the severity of food allergies in general and spending funding on awareness campaigns.

You are nominated as an Ambassador for Beyond Celiac .. how do you feel and what is your role being an ambassador?

It is extremely exciting to be an ambassador for beyond celiac. I have been working with them to develop Gluten Free Starter kits for people who are newly diagnosed with celiac disease. The idea with these kits is that once someone is diagnosed the hospital can give them the kit to help them transition to a gluten free lifestyle easily. These Kits contain an information pack which I wrote using material provided by beyond celiac. It also has some Gluten free goodies that are from Wheafree.

Wheafree is associated with you and your project for a long time, can you tell us more about this special relationship?

It has been extremely enjoyable working with the Wheafree team over the past few years. Initially, when I learnt about Wheafree I was really happy to discover that there was provisioning for gluten free Indian Sweets. I am looking forward to visiting Wheafree’s 100% gluten free factory and blogging about it on gluten free Jio’s social media pages.

You are a multidimensional personality, you are an entrepreneur, bakery specialist, diet consultant, Writer/Author. According to you, which is the main role you play and why?

I am a curious person in the sense I like to understand how things work! So, definitely the baker in me who tries to create new recipes that  is definitely what is close to my heart. As a Celiac I understand the struggles of fellow Celiacs and  by using my knowledge and skills if I can create foods which others can enjoy its a win for me. This is also reason why during the pandemic I started to teach baking online.

You became all of the above for some reason, would you like to share your story with our readers as I am sure, it will be an inspirational story?

It’s been long journey for me!

My childhood goal in life was to be an IAS officer. Well, inspite of being a favourite to crack it, I didn’t and then the 4th & last time I wanted to write it is when I kept falling sick.

Fast forward to 2010, I was so unwell that I quit my job and finally discovered I had Celiac Disease. I had to take time out to heal and even when I joined work back, when I had to take some emergency medical leave I was asked to leave. In the meanwhile I was cooking and baking gluten free foods for myself. I took an  active interest to read everything I could  find on Celiac Disease,  whether it was medical journals or articles, or websites.  I connected to Celiacs all over the globe. I went to stores in Bangalore and requested them if they could source gluten free ingredients for me and also whenever they needed to know more I spoke to the manager or store owner.

In 2013, when decided I might as well do something that can help me & others. I started commercially baking on a small scale, kept talking about Celiac Disease whenever I got an opportunity,  my baking helped me get noticed.  It created sone kind of awareness which was not there before and then people started asking me to talk and write about it. My willingness to share information and knowledge also was a reason for why I was recognized by  Chefs and many in the food industry.

It has not at all been easy for me, I have spent countless hours, money, effort into all that you see me doing today. However, thanks to my family, a good support system and my faith its kept me going inspite of the numerous challenges.

At the end of day it is very important for me that whatever I do makes a difference and that is exactly why I wanted to be in the Civil Services anyway.

I would say this to summarize my answer everything I am doing today is due to a necessity or because someone requested me to help them out with something 🙂

When you came to know that you are Celiac, was your family and friends supportive? How was the reaction of society ? Were they sensitive to your needs

For family it was a relief because my symptoms finally had a reason. I am blessed to have a very supportive family..Friends were surprised there could be such problems.  Society, oh well! Some were  kind and empathized. Some were surprised that something like this was there and many also thought it was temporary and never took it seriously. I would say I haven’t had much trouble with family or friends but people even now,  especially strangers feel its a fad diet and I doing it for losing weight!  There is so much awareness from 12 years back but still so much more to happen.

You have met Higher up officials of FSSAI, what is your assessment about their understanding of this disease? Do you think Labeling laws are strict and good  enough for food business operators .

I don’t think they still understand the problems we Celiacs face, sadly. Yes, we have good labelling laws but there is no accountability and that very fact makes the labelling laws ineffective. I know numerous manufacturers who never knew that they had to even list allergens or give a disclaimer about shared facilities.

There are manufacturers who happily put a gluten free label without even understanding the meaning of glutenfree. So its very clear that the labelling laws have not been clearly communicated and that companies are not held accountable if they do not declare allergens or all ingredients.

What made you think of writing the book ‘A Gluten Free Life’ My Celiac Story  and how the experience as an author?

I was speaking about food & my struggles with Celiac Disease at a conference and in the audience happened to be a consulting editor who worked with Harper Collins. A month later she wrote to me and asked me if I wanted to write a book about my struggles and my journey.
That is how I came a write a book. It is really a miracle that a book deal was given to me. However,eventhough I submitted the manuscript in 2015, it was published only in 2018.

To write this book I took 1.5 years, I had to maintain a disciplined schedule and as my book has 25 recipes it meant a lot of time was spent creating those recipes as well. It wasn’t easy for me to go back in time & share many of my personal struggles but in order for developing the connect with the reader and serving the purpose of writing the book, I had to do things which weren’t emotionally a pleasant experience.

Writing a book is a lot of work and on a topic like health it is even more of a challenge as you don’t want the reader to be bored. In a world where only celebrities or movie stars are asked to write on health I still believe I am highly blessed to get this opportunity.

What advice/suggestions you will give to the Celiac community from the lessons you have learnt in your life ?

Well, one thing you have to realise is that

1. Try to not to stress too much because at the end of the day it just effects us.
2. Plan – Do not restrict your life because you have Celiac Disease. Instead, research and plan and live your life whether it is travel or anything else.
3. Do not be hassled by people’s opinions who might think you are fussy or following a fad diet.At the end of the day no one can bear your pain. Physical pain cannot be borne by anyone else so you should do everything to make sure you are safe. Health is wealth,  as cliché as it sounds,  it is true.
4. Be kind, clear and courteous when you are  trying  to communicate your dietary restrictions to chefs, managers or wait staff. Clear communication always gets through to others.
5. Please also be kind when new Celiacs ask you for help or direct them to resources and people who can help.
   Be kind to each other as well and support fellow Celiacs if they are trying to do something for the community.

The only way the Celiac community benefits is, if we have empathy for each other. There is always  strength in numbers. For example just look at the vegan community just in a few years vegan products are flooding the market. I have seen how united they are. Their unity puts pressure on all big manufactures and it they cater to them.

One more question which came from my daughter. At what age you came to know about your celiac disease and what was your reaction to this ?

I was diagnosed at 27. Needless to say it was a little tough to grapple with it. However, since I didn’t know much about it then it wasn’t a huge shock for me. It was probably only after few months after my diagnosis the seriousness of it struck me.