On spontaneity with celiac disease
Does everything have to be planned in detail after the diagnosis?
The life of spontaneous events is over once you have a chronic disease. Celiac disease, in particular, forces you to be more planned than before. Sometimes, more than you’d like. Arguably, some chronic conditions may be less stringent about it. For example diabetes; avoiding starchy and sugary foods is much easier than avoiding all foods at someone’s place.
Normally, people are carefree, or even careless, concerning health and diet. What celiacs have to do is relatively hard. It’s not impossible though. For many people, life without gluten is hard to imagine. Or even to comprehend. Most of my extended family wonders what I eat if not roti. Roti a wheat-flour pan-baked bread which is staple for North Indians. To them, a meal isn’t complete without rotis. I have replaced that with rice in my diet, which isn’t bad at all. Many parts of the world eat rice as a staple. But for many, (mental) satiation of hunger only happens with rotis.
When I go to a friend’s (or relative’s) place, even the spices or seasonings they use to cook can cause issues. Many of the seasonings are processed in facilities shared with gluten containing ingredients, hence making them unsafe for people with Celiac disease.1 Consequently, I have to plan my visit and carry one or two meals, along with snacks, for the planned time. If they ask me to sleep over impromptu, I can do it but can’t stay for breakfast as I didn’t plan for it.
When it comes to travel, it’s the same. I have to search and list out a bunch of places I can eat at before I start my journey. When travelling with a group, it usually means that I am eating alone at some place while others are grabbing food somewhere else. Sometimes I am the only one who needs to grab something for the road knowing the next 3 hours of the way has only “normal” gluten-containing food. You can only eat so many energy bars, eh?
First, it puts a weird pressure on others. Secondly, it can make me feel guilty for making others wait for me. I have convinced myself not to feel guilty; and remind myself that I have a disease. For my friends, however, it’s easier to plan things without me in it. Isn’t it?
A tip for people with Celiac disease
Make a list on Google Maps and mark restaurants safe for you on the maps itself. It makes it convenient to find places close to you when you travel.
Planning and my life
I have had an on and off relationship with Planning. I’d confess that in my early twenties, I used to plan everything. Everything in my room had a place, time and orientation. I had to force myself to take it easy, and allow for ‘living’. While planned life is much more productive, efficient and such; once in a while I should be able to enjoy life without worries, I thought.
Celiac disease has forced me back into discipline. More than I’d like. More than what is convenient. Honestly, I can see people thinking that I am paranoid about avoiding gluten. I have started to dislike any disturbance in my routine now. My office is asking me to do a work trip for a couple of days, and I am anxious about it. But, I’ll plan.
The bright side of planning
I take these challenges in good spirit, in “Chardi Kala”, as one of the Sikh principles of life suggests. It translates to: living with high spirits in the face of adversity. Additionally, as taught by my upbringing, I perceive suffering as the necessary dimension of being. Not to be mistaken for the only dimension. Being planned and more disciplined, obviously, has it’s advantages. And that is where I like to put my focus.
I do meal prep every weekend, without fail for more than a year now. I have learned a lot more about health, and eat much healthier than I ever have. This discipline required of me, has translated into other aspects of my life as well, especially health related. I sleep on time, wake up on time. I work from home, yet follow work timing on my work desk. I started this blog and have been writing weekly for 10 weeks. I can go on, but it’s enough to illustrate my point. Don’t we all want to do that? Be more disciplined about certain things in life?
Struggles and the way forward
That being said, I know a lot of people struggle after the diagnosis of celiac disease. From building a negative relationship with food, to constant anxiety about eating out, or not travelling at all. There are numerous struggles to face, which given the choice one would rather not. But we don’t have a choice. As Gandalf tells disheartened Frodo: “All we have to decide is what to do with the time that is given to us.”[clip]
It is not easy to change one’s perspective toward something, especially when something affects all aspects of the life. Believing in oneself may seem impossible. But let me tell you, it is possible to live a great, fun, exciting life with celiac disease.
Don’t be scared to ask for help.
I’d suggest you to always have some snacks on you, that you like. If on a road-trip prepare a few meals that you can store and eat when you are hungry or stop. When travelling do a bit of planning before you leave to relieve some stress and help you enjoy once you are there. Join facebook groups and other communities to help you out; asking questions in such communities have helped me talk to locals before I reach there. Inform friends and family that you can’t eat anything because of health issues. There are ways around these challenges.
I’d end with something I borrowed from The Martian by Andy Weir. The protagonist, Mark Watney, is stuck on Mars by himself, and is overwhelmed by all he has to do. He writes in his log: “One thing at a time, Watney”
We can get gluten-free food from shared facilities if they have some measures in place. In most cases though, those measures aren’t in place. If something isn’t labelled gluten-free and has a shared facility, I don’t consider it safe to eat.