We went to meet a certified nutritionist to start my gluten free journey. At this point, we were in the United States and there seemed to be plenty of gluten-free options both at restaurants and super-markets. The nutritionist first asked me about what my daily diet was. I have never been fond of eating fast food or what may be labeled junk, but gluten was most certainly omnipresent in my earlier diet. I have had long battles with my mom over not wanting to eat rotis, now in retrospect may be my body was giving me signals. The dietician educated my family and me regarding the negative consequences of untreated Celiac disease including nutrition related complications such as osteopenia and osteoporosis, iron deficiency anemia as well as other auto-immune diseases.
We were to leave for India in the next few days and we spent most of that week visiting various gluten-free dishes in Wegmans (a massive supermarket in upstate New York which does gluten-free really well). My parents decided to dedicate our existing kitchen to being gluten free for me and use another room as a kitchen for cooking food which would not have gluten. Family support of the gluten-free diet is vital. It is important that all family members, staff who may cook should be aware of gluten-free dietary requirements. It’s important to educate them about avoiding the possibility of cross-contamination in the home, especially if the other family members don’t have these conditions.
The good thing about Indian cuisine is that it is naturally gluten free, excluding the obvious chapattis. Hing surprisingly is a big no-no too since commercially it may be cross-contaminated with wheat. Once we were back home everything seemed terribly difficult at first especially my tiffin for school. My mom got a special chakki/grinder for my kitchen to prepare my gluten free flour. Now instead of my staple sandwich to school, I started taking cut fruit, vegetables, gluten-free idlis, rice with sugar, gluten free crackers and, energy bars. Since the food labeling in India is not very good, even if the product says gluten free one is not sure of the facility it was processed in. If I went out to wedding, I stick to simple stuff like rice and chicken curry. Outside dinning was very limited in the beginning as my parents wanted to take no chances with my recovery. In around a year after following a very strict gluten free diet, my TTG level came down to 18.7 which was around normal.
I however had to forgo a school trip to Delhi since my mom was not certain about me being able to handle a gluten free diet alone. That was the first time I felt really sad about having to miss out on a free trip. Birthday parties also were challenging if they were catered affairs. I used to generally have a soft drink and then leave after the cake was cut. My mom did suggest packing a few goodies for a party, but I was too embarrassed to carry my own food. Now I have no such qualms or inhibitions. It is more important for me to be well and not fall sick once any such issues. When a friend had a birthday party or a playdate at home, often their moms would be very kind to make something gluten for me.
Of course, now that I am in a Boarding school, I have learnt how to make sensible gluten free choices whether eating outside, traveling in a plane or attending a birthday party. When I initially applied for boarding school in the UK, I hadn’t been diagnosed with Celiac disease but when I found out I had Celiac disease, my parents and I were hesitant because we didn’t know if those schools offered gluten free meals as we didn’t have any knowledge about being gluten free prior to my diagnosis.
My mum emailed all the schools and they all got back with various food allergen policies which were satisfactory. When I started boarding school in 2016, it was quite scary to have to go up to the counter and ask for my gluten free meal.
In my initial weeks, the gluten free food wasn’t amazing, so I had to talk to my housemistress who emailed the head of catering and set up a meeting with her. She wrote down my requests and tried her best to help me. After my meeting with her, my food improved a lot but after a couple of months, the quality of gluten free food went down again. Luckily, I was able to arrange another meeting with the head of catering and the gluten free food has been great ever since. When they provide a break in school, there is always a box which is labeled “GLUTEN FREE“ and it has a variety of gluten free snacks in it.
During parties, my friends are really kind and order a GF pizza for me, but I always carry a snack with me such as a protein bar to be safe because sometimes the snacks in the gluten free box are not of my liking. Whenever we go on school trips, we get packed lunches and the kitchen staff makes me a gluten free packed lunch as they have all the details about it. Unfortunately, there has been a couple of times when my sandwich has been made of normal bread instead of gluten free bread and I never checked before that happened and I only realized this when I reached the place where my school trip was going. After these incidents, I learned my lesson and always checked my packed lunch before I went on a trip.
My friends are also very supportive of my allergy when it is someone’s birthday and if everyone is having pizza, they always get me a gf pizza or a gf cupcake. Overall being gluten free in a boarding school has been a really positive experience with a couple of downs but I don’t regret coming to boarding school at all.