I wanted to share my story of what it's like to have Celiac Disease as someone in their 20's. This article is for all of those other Celiacs out there feeling like they're are alone in their experience. Maybe my story and how I cope will give inspiration and hope to those out there struggling.
Before the Diagnosis
When I was about 15 I started getting symptoms after bout of food poisoning I had on vacation down in Florida. All of a sudden I lost a ton of weight. I remember the comments on my weight and the near constant assumptions that I had an eating disorder. I would turn down trips to the beach and would dread summer because that meant showing more skin. I could no longer hide my weight through layers of clothes. I spent many years going to the doctor in tears begging her to listen to me, that something was wrong. I was told I had anxiety, or was depressed. I remember like it was yesterday, a locum doctor was telling me that I had an eating disorder. Yelling at me to tell her what i'd eaten over the past few days I was caught off guard and couldn't answer. I left almost every one of my doctors visits embarrassed that i'd gone back again. I started to think, maybe they're right. Maybe I am a hypochondriac.
"45% of autoimmune suffers are labelled a hypochondriac in the early stages of their illness"
All my hair started falling out and my nails would chip apart. My bones were frail and I was under developed for my age. It was like slowly watching myself fall apart and turn into a chronically ill person one day at a time. One of the most difficult things about being sick when you're young is having having no one to relate to. All your friends are in the height of their lives, having fun and being adventurous. It can be very isolating being chronically ill. Many of the time your peers and even friends and family can't fully understand the daily struggle.
I would only speak up on days I was very ill. All other days I would hide it. Why? I was usually met with eye rolls and dismissive comments. I would be out with friends, family, on vacation, at school and I would be so ill I would have to go home and rest. The severe nausea and bloating I had started to control my life. All I did was stay at home alone. At the beginning people are understanding but after a while no one wants to hang out with the sick girl anymore. Right before the diagnosis I was so ill I weighted about 103 pounds and i'm 5'7. I was vomiting most days which didn't help the eating disorder assumptions. Finally after about 6 years of sickness and doctors visits I was diagnosed with Celiac Disease.
After the diagnosis/ treatment
After my diagnosis I was eager to go on a gluten free diet. I thought yes! I was right. There was something wrong. Well now i'll go on a gluten free diet and it will be smooth sailing from here. Unfortunately my health didn't improve. I was still eating a lot of packaged gluten free foods. Gluten free cookies, pizzas, crackers, and cakes. I didn't realize that packaged gluten free foods were even worse for you then their gluten counterparts. For some reason I didn't realize that my body needed help healing from all the damage that Celiac Disease had done. My health continued to deteriorate over a period of 2 more years. My immune system was so weak I ended up with a viral infection that lead to swelling in my brain and permanent damage. That was the wake up call I needed. It was time to get real with myself and step out of denial. I needed to change. I was now 23 and had lost almost ten years of my life to feeling ill, missing out, and living in a world of self pity.
A Change For The Better
As much as I don't want to admit this healing scared me. Being sick took some responsibility away from me. I always had others to care for me. If I got better then it was time to really grow up and I truly believe that stalled improvements in my health. Eventually it got to a point when I realized that it was time to grow up and not let the fear control my life.
I knew I needed to change. But where do to start? After a visit to a gastroenterologist where I was told that I was being to careful and my recent rise in numbers on my blood panel were nothing to worry about I decided to try a holistic approach. Now i'll be honest here because that's what this whole story is about. I thought holistic medicine was made up of a bunch of snake oil salesman trying to sell me supplements that didn't work. Little did I know a holistic lifestyle would completely change my life. Yes I still struggle with the effects of my autoimmune disease and brain damage, but it's at a place where I can live my life. Isn't that what all of us with chronic illness want? Just to live, to be free from the shackles of our disease?
Through an extensive elimination diet and implementing the autoimmune protocol it was like the colour was back in my world for the first time in forever. I went from laying in bed unable to live like I wanted, to feeling free. Like my disease no longer controlled my life and that was such a good feeling. I started working towards focusing on improving the quality of my diet, I starting going on walks and improving all aspects of my self care.
As much as Celiac Disease has taken away from me, the experience has given me so much. The perspective chronic illness gave me has forced me to grow as a person. There is something about being taken long past your breaking point to change the way you see every aspect of your life. It really helps you quickly see what's important and what's not.
I want to show others out there with Celiac Disease who are still suffering with symptoms that there is more you can do to change your life. Don't let anything hold you back from living your life. Accomplish those dreams, conquer those fears, and know that the power is in your hands and that better health is ahead.
If you're Canadian you can donate to the Canadian Celiac Association here!
How did your chronic illness change your life?