My life with Celiac disease
Celiac disease sucks. I don’t know how else to describe it. Very challenging to live with, especially if you’re a socially active person. It is an autoimmune condition where your system attacks the tissues in your small intestine when you eat gluten (a protein found in wheat, rye, barley and oats), this causes damage and destroys the villi. These are tiny finger-like projections that maximise the absorption of food and nutrients into the blood. People with the disease suffer from a variety of symptoms which include extreme fatigue, heartburn, bone loss, indigestion, lactose intolerance, skin rash and weight loss, malnutrition, among others. Sadly it’s goodbye to eating your favourite cereals or feasting on french toast in the morning, as gluten is your poison. You must learn to live without it if you want to improve your quality of life.
My personal story begins early on when I was 13.
I always suffered from stomach pains. My mother would say it was because I was such a nervous child. “Darling you have to learn to be calmer about things. Otherwise, you’ll hurt your body with all that stress and anxiety. I will always protect and look after you, don’t worry so much”, she would say in her gentle voice. I believe my anxiety stems from my father leaving the house when I was eleven. My mother had to care for me on her own. I watched her cry and breakdown, and for or a while, I absorbed her fear of being alone. Seeing her in pain deeply affected me. It was a difficult time in our lives, but we learnt to move on, and she was able to be at peace with everything.
When I was fourteen, I remember having restaurant days with my mother. They would consist of choosing a different dining experience every month so that we could go and enjoy their main menu and spend some girly time together. It was usually on the first Saturday of the month at around 7 pm. I would wear my best outfit, and my mother would always look incredibly glamorous. She was a single mum who worked two jobs so that she could give us a good life. To me, these dates were extra special, and I wouldn’t miss them for the world. “Today we’re going to this amazing Italian restaurant called Fellini. They have the best beef lasagna in the world. I can’t wait for us to try it.” She would say excitedly. I always looked forward to our dates because it was an opportunity to connect and feel closer to her.
My mother was the most beautiful woman. Tall, slim, with blond curly hair and light brown eyes. Her skin was like porcelain, flawless for her age. She would always tell me that skincare should be an essential part of every woman’s routine, especially after the age of 20. “Cleanse, tone and moisturise if you want your skin to feel like paradise” she would exclaim. Her smile would light up every room, and her kindness was extraordinary. Reading books was her passion, especially those about the great English poets. She would devour the works of Lord Byron and Mary Shelley, as well as William Shakespeare.
She loved food more than anything in the world and would savour foreign dishes that had exotic flavours and ingredients. My grandmother had worked as a Chef in Paris. My mother learnt about fine cuisine from an early age. Their mother and daughter relationship grew around food and after-dinner conversations; this is where they nurtured their love for each other. My grandmother past away three years ago, and my mum was devastated. I believe the reason she began dinner dates with me was to create the same bonding experience that she had with her mother.
We began our culinary journey two years ago. Restaurants were like our second home, a place where we felt welcomed and pampered. Food was our start of conversations and time for enjoyment. Plates of delicate pasta and risottos, Thai curries and Indian cuisine, Mexican spice, and everything in between. Amazing dishes that would elate our palettes and bring us joy. I felt happy in my mum’s world and cherished every minute we spent together. My favourite dinner was pasta carbonara. I always loved Italian food. Carbonara is a pasta dish made with egg, hard cheese, cured pork and black pepper. The cheese is usually Pecorino Romano or Parmigiano Reggiano; I liked a combination of the two. The most common pasta they use is spaghetti, but I have mine served with bucatini. It makes for perfection when it comes to the combination of ingredients.
As we dined in different restaurants and tasted a variety of dishes, it was always hard to pick your favourite. Sometimes we would go and explore Egyptian food, or Spanish cuisine with all the exquisite tapas and Paellas. There was so much to choose from and so many flavours that would drive you wild. I loved the experience of dining out. It was glorious.
For my sixteenth birthday, my mother had a special surprise; she was going to take me to my favourite Italian restaurant. I was so happy and excited. I bought a new dress and invited two of my friends along. We got there at 8 pm sharp on a Friday evening and sat at the best table. I ordered Lasagña, as my mum always talks about how amazing it is. After 20 minutes, my dish was ready; and it didn’t fail to impress. I looked up at my mum and gave her a big smile. “Thanks, mum, you’re the best.” The flavours were incredible. Golden crunchy cheese on top, with a layer of the finest, juicy meat sauce underneath. Crispy edges, and a gooey cheesy centre. Freshly cooked lasagna pasta sheets in between a creamy and decadent parmesan white sauce, bathed in an abundance of culinary heaven.
I felt so happy at that moment. I was turning fifteen and had all the people I loved there with me. As I finished eating, I started to feel a little dizzy. At first, I thought nothing of it, but then I began having the worst stomach cramps imaginable. It was so bad that at one point, I had to push my fist up between my ribcage so that I could tolerate the pain. I was shaky, sweaty, and my heart was racing. My head hurt, and I was very nauseous. “I need to go to a doctor now please mum; I’m not well”, I said. She quickly got up and took me to the hospital. She was worried as I was never one to complain and knew this must be something serious. I was so weak I could hardly walk.
Three hours after we got to emergencies, I got examined by a specialist doctor. He asked me lots of questions regarding my medical history, and I answered as best I could, while my mother held my hand. “I would like to perform a blood test for antibodies if that’s ok?” Asked the doctor. “Why antibodies?” said, my mum. “Well, I work with many patients that have coeliac disease, and I think your daughter has all the classic symptoms. I will run blood tests and ask for other examinations to be able to give a definite diagnosis”, he said.
After three weeks, we went back to the doctor’s office. I had taken all the exams he had asked for and was ready to know what was wrong with me. “Hello Jennifer, please sit down.” said the doctor. My mother sat down beside me and put her arm around me. She was the strong one. “I’m afraid that all your tests show that you have the disease. I’m very sorry. I want you to know that it is treatable through diet, and if you follow it right, you should be able to live a healthy life. You have to be careful around food and plan your meals thoughtfully.” explained the doctor. I was shocked and sad. I never imagined being diagnosed with an autoimmune disease at such an early age. I was devastated and didn’t know what to do. I hugged my mum and cried in her arms.
The next few months were a learning curve for both of us. We had to know what to cook and what ingredients to look out for in case they were triggering. Most things have gluten. Some products have it hidden. There are many gluten-free items on the market, but they are costly. We would never be able to go back to our favourite restaurants or do date nights together because I could get contaminated with gluten. Everything had to be carefully labelled or put away. Products that I loved I could never have again. I had to say goodbye to my old life and create a new one. At first, I didn’t want to. I was angry and confused, but I knew it was the best for me. I didn’t have a choice. I had to learn to live with it and become healthy again.
My mum was my rock. She changed everything in the house. We were 100% gluten-free, and I began to feel amazing. My skin started to clear up; my hair was healthier and shinier; my stomach wasn’t bloated anymore. I didn’t get headaches. I could sleep better and just felt more at peace mentally. “No matter what, I will stand by you”. My mum would say. “I feel sad for all the restaurants we won’t get to visit, and that our special moments will be gone. I’m so sorry, Mum”, I replied. “Your happiness means everything to me; no amount of food could replace my love for you. We will find new restaurants — gluten-free ones. Just start over, differently. I love you no matter what”, she said.
Celiac disease changed my life. It affected my body, health and my social environment. It was difficult going out with friends because I was always the one not being able to eat anything on the menu. It was frustrating still having to explain myself. People were not entirely clear about the disease. They would think it was a simple allergy and that I was exaggerating. After a time, my closest friends stayed by my side and supported me. I began taking care of my health and my life. I had to because it was my only body and I couldn’t abuse it. I became an expert on gluten-free products and recipes and knew all the right restaurants. I felt positive again and ready to embrace the new me.
Sometimes life can hit hard, and challenge us to overcome obstacles that we’re not prepared to face. There is always a strength inside of us that pulls through. I call it love and resilience, the most beautiful dish of all.
