It’s difficult when the very thing you love turns out to be against you. For me, my lover-turned-enemy is food. I started to realise this when the physical symptoms I had since childhood got progressively more overbearing during high school and into my college years. Almost daily I started to experience throbbing pain in my stomach, fatigue and feeling sick after eating. This sounds like the beginning of a story about pregnancy. It’s actually the story of how I came to terms with having coeliac disease.
Like motherhood, coeliac disease is with you for life, only people don’t congratulate you when you explain your condition, they feel sorry for you. Gluten free products have pervaded supermarkets and cafes but there is still a lot of misunderstanding surrounding the disease. You may not be aware that coeliac disease is actually an autoimmune disease. The protein, gluten, found in grains such as wheat, barley, rye and oats, causes the body to attack the lining of the intestine. Over time the Villi (which are like tiny tendrils coating the intestinal wall) suffer damage and begin to flatten resulting in malabsorption and related conditions such as anaemia. The disease also increases risks for many other conditions such as diabetes, lupus and lymphoma.
The hardest part about managing coeliac disease is trying to exercise my self-control. There is nothing I want to do more than the very thing I am told not to. It’s an impulsive response. When I am at a friend’s for dinner or out for lunch and I see the most delicious cakes and cuisines, it’s nearly impossible (when the voice of reason must be my own) to resist the temptation. As a joke, my mother once bought me a little book on the cardinal sin of sloth. What would have been more appropriate is a book on gluttony. Before I realised I could no longer eat gluten I would go through food binges. Packets of cookies, cakes and chocolate were common culprits. No food was safe and everything was consumed in excess. Every other day I would eat sparingly. A few crackers, tins of tuna, a piece of fruit. My eating habits were a way of coping with the confusion of why I felt sick from eating and my inability to control my desire to indulge with food. The adult voices in my life at the time responded to my despair by convincing me my physical symptoms were imagined. This caused me daily anxiety and a love-hate relationship with food which ensued until I was old enough to find my own answers.
Before I removed gluten from my life altogether there was a bit of a process involved to get the coeliac disease diagnosis. It started with my decision to leave my hometown of Canberra and move to Sydney. Finally I was able to breath and discover myself for the first time without being told who I was or how to think. After my first year in a new city I finally accepted that there was something abnormal with me. I couldn’t eat a single thing it seemed without my stomach feeling like it was turning inside out. Over the course of a few months I went to various GPs only to find my symptoms dismissed yet again, as they had been during my childhood. The doctors told me to eat more fibre and drink more water. After looking at me judgementally, to ‘Google’ Irritable Bowel Syndrome. Another doctor ordered a blood test even though I hadn’t fasted which, as the phlebotomist told me while looking at the point of a needle, makes the test inaccurate. Rubbing my bruised arm, I left the doctor’s office feeling ashamed that I really was imagining everything I felt. It was then that my sister came forward and admitted that she also had similar symptoms. We talked about our experiences, particularly her polar opposite reaction from doctors to her symptoms. Thankfully she convinced me not to give up on myself after only a few ten minute rushed consultations with doctors who understood nothing of my daily life-long health challenges. Eventually I also found a wonderful doctor and specialist who diagnosed me with coeliac disease and not psychosis. The disease is incurable but manageable by eliminating gluten from the diet. Even though I am a self-confessed glutton I deceivingly expected my dietary change to be a simple task.
Excited to finally have an indisputable explanation for my physical illness I headed off to the supermarket for my new favourite gluten-free products and to reinvigorate my love affair with food. Aisle to aisle, they eluded me until I finally succumbed and asked the shop assistant who pointed me toward aisle four, the ‘health food’ aisle. I turned back and traced the line of his hand, asking to be sure, ‘So aisle four?’ Off I went to explore ‘health food’.
Turns out all this time I was eating so unhealthily not just because I was an undiagnosed coeliac but because wheat had been negatively affecting my health and overall well-being. At three times the price of normal products the gluten free ones must truly be healthier right? Why else would people pay more for less? After all the gluten free label usually pertains to other labels such as dairy free, nut free, fat free, vegan, vegetarian. I wondered what the food was not ‘free’ of and looked for the ingredients list. Most of the words were too small to make out or a mix of numbers and letters. My vision of a healthier, less bloated, muscular, energetic, successful future self was shattered when I saw the gluten free packet cake, cookie and cup cake mixes. Even I had to accept that the healthy gluten-free diet might be a farce. A very deliciously tempting one though. The abundance of gluten free food which has sprung up only very recently has also brought with it a string of misleading consumer information. Turns out that pairing gluten-free with health food was one marketing agency’s million dollar idea. The result is that the judgement and misunderstandings do not just occur in the doctor’s office but often at restaurants and from friends.
There is a certain sense of dread felt when asking cafe staff for their gluten free menu options. Most of my experience has been positive however there are those occasions which make dining out embarrassing and awkward. The negative experiences stem from the disbelief hospitality staff have for whether my food allergy is genuine or fad based. Some wait staff are completely unaware of what gluten is, others don’t take the request very seriously (countless times I have been given dishes with gluten when I specifically asked for without), and once a waitress even asked if I was actually allergic. Worse still my father still struggles to accept my disease at all:
‘Dad, I’m coming over. What’s for dinner?’
‘Pasta, you want some?’
‘No Dad I can’t eat gluten remember?’
‘Oh, ah, can you eat noodles?’
‘Chicken nuggets? Crumbed Fish? Toast?’
‘DAD!!! It’s only wheat, barley, rye and oats that I can’t eat!’
‘Oh, ok.. Pizza it is!’
Food is so intrinsically linked with sustaining not just our appetites and desires but also our social organisation. We often take for granted the sheer abundance of choice we have in what we can eat that to have that liberty impinged upon by a food allergy or intolerance becomes a source of anxiety, both for those that suffer from the condition and the people around them who have to respond to it. I experience this social pressure when eating out in restaurants, cafes and with friends and family or anywhere in which my dietary needs conflict with social etiquette and even my own self-expression. Where usually I would be a very appreciative and obliging dinner guest, I must now for the sake of my health be imposing and demanding. The consequence otherwise is gambling my health to avoid social inconvenience.
For a long time, I thought food was the villain of my story. When I finally decided to believe in myself I found answers for my symptoms, solace in my diagnosis and understanding for the challenges I continue to experience. After my diagnosis I felt a huge amount of relief but when I reflect on how that came about I still find it surprising how much of my life has been consumed with thinking about food and the false truths I found myself accepting. In reality, food is wonderful and my diet, although altered is almost entirely the same thanks to the wide range of gluten free products now readily available.
Having coeliac disease causes me unpleasant physical symptoms but now I am diagnosed, managing those symptoms has been a lot easier. This has also been aided by the huge amount of support I found from friends and family (some of whom have their own dietary restrictions) to whom my gratitude is unending. I am happy to say that my gluttonous appetite has not slowed down but rather taken on a new obsession for the different textures and flavours found in gluten free foods. In many ways my diet is more restricted but at the same time I feel liberated to have an explanation which resolves my mental tension, physical symptoms and allows me to rediscover my love affair with food with an invigorated and innovative approach.
If you have been diagnosed with coeliac disease you can join the Coeliac Australia Society . They provide information about the disease and how to manage it functionally.
Charlotte Bulbrook keeps being told she is an adult, maybe one day she will become one, for now she lives and writes in Newtown, Sydney.
Image: Gavin Firkser