In the spring of 2010 I was officially diagnosed with celiac disease after fighting with doctors for two years.I was 19 years old. This search for answers would include numerous specialists and even my own mother telling me the way I felt was all in my head. To finally get a diagnosis would be a long and exhausting journey that had actually spanned a lot longer than two years.
What is Celiac Disease?
Celiac Disease is a chronic digestive and autoimmune disease that causes increased inflammation and damage to the small intestines when gluten is ingested. This can develop at any point in life in individuals who are susceptible to the disease. So basically it’s hereditary and you need to be genetically predisposed to it.
Let’s start from the beginning – I was always an extremely active teenager with a fairly abundant social life. However I spent my entire adolescence feeling extremely unwell. Any good memories I have of that time in my life are completely overshadowed by memories of chronic fatigue, depression, anxiety, insomnia, and an inability to regulate my nervous system. Knowing what I know now, this was all connected to eventually being diagnosed with an autoimmune disease that attacks the digestive system. Why? Because your digestive health directly impacts your brain health, along with every other organ in the body! Sure, some if it had to do with trauma but we can talk about that another time.
In June of 2008 I graduated from high school and made the decision to forgo university, taking a very different path than the rest of my friends as I watched them all move into their dorm rooms. I became a certified ESL teacher and immediately started applying for jobs around the world. I landed a teaching job in Xi’an, China and was on plane a week after my 18th birthday.
A few months after my move to China I began to feel increasingly ill, worse than I had felt in the past. I started to gain quite a bit of weight and the dark circles around my eyes became hard to ignore. My body ached, my hair brittle and thin, and I would suffer from excruciatingly painful stomach aches that would bring me to my knees. I ended up working with a team of doctors in China for a few weeks and their strategy was to pump me full of antibiotics, but couldn’t actually figure out what was wrong. All they told me was they suspected signs of kidney failure so they put an intravenous port in my hand and I would visit the hospital twice a day for two weeks before and after work.
One morning I woke up and could barely stand. It felt as if all the muscles in my body had just given up and there was no more gas in the tank. I immediately called my mom in tears and she had me on a plane back to Canada a few days later.
The unfortunate part about this story is that it would then take another year for me to receive a diagnosis. I spent my time back in Canada seeing different specialists with no luck, until my family doctor suggested it was purely psychosomatic to which my mother agreed. I remember feeling extremely alone as I was watching myself slowly wither away and nobody seemed to care.
In the following months my health began to deteriorate at a pretty rapid rate. I developed a mild case of narcolepsy where at times would fall asleep mid conversation, I had intense tingling in my hands and head that mimicked electric shocks, my skin was always itchy and my stomach aches were so bad that I would curl up in the fetal position on the floor. Finally, one day I noticed that I could no longer stomach solid foods. This new symptom had me living off of about five smoothies a day until my actual diagnosis, which would come about a month later.
I couldn’t get an appointment with my GP so I decided to try the walk-in clinic, perhaps fresh eyes would help. This visit consisted of a middle aged man asking me to lift up my shirt to exam my stomach, so when he saw the tattoos on my rib cage his immediate reaction was “Are you sure you don’t have hepatitis from these tattoos?”. He then prescribed me an anti-nausea medication, told me to take them before I ate and sent me on my way.
After a couple of weeks on these pills I finally got an appointment with my GP. Due to my new symptom of not being able to hold down food, she referred me to a gastroenterologist and they scheduled a colonoscopy and endoscopy pretty shortly after. When I met with the specialist a few days after my procedure, she showed me photos of my GI tract and told me that I had the worst case of celiac disease she had ever seen.
In your small intestine you have something called villi that line the walls. These villi are crucial to nutrient absorption and keeping you nourished. If these are damaged or inflamed, the food you’re eating isn’t getting absorbed into the body. Mine were so damaged they were almost non existent, meaning I was severely malnourished.
She was so concerned that I had reached a point of not being able to heal or reverse the damage, so we set up yearly scopes for the first few years to see if I would make any progress.
I’m so grateful to be able to say today that I was in fact able to heal through a massive diet and lifestyle change. I am now 32 years old and I am mentally and physically stronger than ever before and I find each year gets so much better!
It’s important to fight for your health and not give up. I think so many of us become use to feeling tired and sickly and feel as if we have no control over it. We just accept it. Life is meant to be enjoyed, and we should always feel our best.
Written by
Amanda Rader | Certified Nutritional Practitioner
