Our Journey to Being Diagnosed with Celiac Disease

 

For many, they will understand this journey all too well. For others, you may sit and wonder how I survived the last few years. For everyone, this is my real life story on becoming diagnosed with Celiac Disease. Forwarned, I am a writer at heart and love sharing a thorough post.

There has never been a time in my life that I remember not having something going on with my health. As a young child, I was diagnosed with Epilepsy that over time became less of a hindrance on my life. Growing up with Epilepsy taught me a lot of things, one of those things was being aware of how my body feels. Epilepsy in the late 80s was a very misunderstood illness and is still to this day. Most people in my life have never experienced me having a seizure however, they still are apart of my life over 2 decades later.

Epilepsy involved a lot of interesting tests, medications, and beyond. This, of course, had an effect on my immune system as I got older. Now at the age of 31, a Mom of 2, avoiding the common cold has become entirely impossible and my immune system is a whisper in the wind.

Life has been a whirlwind for quite some time. When my long-term, long-distance relationship of 7 years came to a shattering but necessary end, it wasn’t long after I started to feel a little extra tired than usual. I was now a full time working single Mom of two very shattered children, exhaustion was to be expected. Over a year went past, and things were not improving. I started complaining to my parents how off I was feeling, and the first life-changing doctor’s appointment of many began.

On April 21, 2015 I sat in my vehicle holding back every ounce of my soul. Just writing this brings back those tears instantly. I remember the emotion, the pain, the confusion. I wasn’t even in my 30s, how was this possible? My first appointment had my doctor instantly begin testing for ovarian/cervical cancer. I struggled with severe abdominal pains, migraines, inability to eat for weeks, my monthly unwanted guest hadn’t arrived for months… I was scared, petrified. It runs in my family. How? Why? No.

The next week, I went in for an ultrasound and soon learned yes I do in fact have cancer like abnormalities, and to come back in 6 months time to review growth… Pardon?

Over those 6 months, doctors appointments continued on an extremely regular basis and soon our path to finding out what was wrong led us to my liver and kidneys. Next up, ultrasound on internal organs after multiple visits to the vampires (blood clinic) to check enzymes and all that fancy stuff they check our blood for.

Throughout all the doctor’s appointments, blood tests, ultrasounds I was still a single Mom of 2, working full time and doing everything I possibly could to prevent my kids from feeling how I was. Every day was filled with an adventure because, let’s face it I wanted many great memories made fast… just in case.

It wasn’t long after my internal organ ultrasound I learned that my liver and kidneys were not functioning as usual. The doctor quickly shifted gears to change this before things became worse than what they were. I was down over 30lbs in less than a months time, and I officially needed antibiotic assistance. My journey just hit a whole new level.

The antibiotics quickly helped me battle off a wide variety of infections I was coping with. Did I tell you, I don’t have an immune system? My body was riddled with colds, infections and the in between. I was feeling okay, still tired but able to hold food down.

Summer of 2015 arrived, health was starting to improve. I’ve made some big changes to my life, quit a very stressful job and really focused on life with my children. I was happy and doing okay. On July 31, 2015 I met my amazing man who has been my biggest support and emotional crutch through so much. When we first met, I instantly informed him of my health struggles. There was no way to proceed if it could ever be an issue for him to live with, and he didn’t hesitate to sign on to my crazy life.

The first few months were great, doctors appointments were less and less. This ended very abruptly. We moved to our new home at the end of February 2016, and on moving day we had exactly 25 minutes to get from our old house to our new one. Why? That was the longest I could sit up without blacking out/being violently sick. Health came crashing down, and I spent moving day plus the next 2 weeks very sick, working from home in bed. By Easter, I was hospitalized due to excruciating sickness, pains and off work for several days.

We had the doctors attention again. A simple bladder/kidney infection had me unable to walk, eat or survive. Something was very, very wrong. We circled back around to ovarian/cervical cancer once again.

One misbelief about Canada’s medical system is how great it is. It took many months for us to see a specialist to get a biopsy completed. I just wanted a diagnosis, and I had to wait months to find out. After the waiting game was over, the biopsy came back positive.

This diagnosis ripped me apart. Apart. Hearing those words come out of your doctor’s mouth, alone because you were stubborn that day and told your man to just go to work… I cried far longer in the parking lot this time. A little over a month later we were back in the hospital for my first removal surgery. Thank goodness my health is such garbage that in the early stages it had me feeling far worse than it should have. They removed more than initially planned, regretting not putting me under after several minutes of surgery. Did you know the freezing agent they use in these surgeries causes such severe shaking, that a person with Epilepsy could potentially self-destruct themselves into a seizure? That was fun…

After some time, things were not improving. I was fed up. I was sick of being sick. Life was becoming absolutely impossible. Most days were spent working from bed with my loyal black lab, who never leaves my side on bad days. Energy levels were near gone, no food was appetizing, depression was setting in hard. I needed help, and everyone around me knew it.

The next big visit to the doctors was the one where he finally listened to my cry out for help. I walked into the doctor’s office “lawyered” up with my list of health ailments, daily struggles, every complaint I’ve had for the many weeks in advance. When he read through this list, and finally looked at me you could see the concern on his face. I am not the biggest fan of our doctor, but again our medical system isn’t as great as many think. Another road of antibiotics to fight whatever infections I had hidden throughout my body, a follow-up appointment booked and the beginning of new supplements to see if things balance out.

No improvements between appointments, some items more severe and now I am not leaving without some proper direction. More blood work to check on my liver, because yes it was still having issues and this time we throw in a new, expensive test that is going to change everything.

When I heard these words, I didn’t understand much. I had heard of gluten-free diets however, my knowledge was very vague. All I knew is every food I loved was soon going to be forbidden. One of my biggest passions, cooking & baking. Always dreamed of owning my own bakery/cafe filled with fresh everything, and being told that I can no longer eat a classic warm apple pie…

Life became annoying.

We have spent every weekend wandering through grocery stores, health food stores and any alternative food store within a 30-minute drive from our home hoping to find solutions for every food I can dream of. Having a spouse who is beyond supportive of your everyday struggles can make any disease easier, and he definitely has helped beyond belief with my Gluten Free Journey.

At the beginning of my journey my weight exceeded 250lbs and as of 2017 my weight is averaging around 125lbs… this journey has been a huge struggle. I struggle with much more than just physical health pains and problems. This journey has affected me mentally and emotionally. Leaving home is hard some days, going into busy public places is impossible alone and keeping a positive mind can be a huge struggle many days. Add on the pain and worry in your families faces every time they see you, it wore me down fast. Receiving a diagnosis of Celiac Disease was very hard and still is, but at the same time took a lot of weight off our shoulders knowing one day I will be okay again.

Every journey has its own beginning, and I hope my journey can one day give someone else hope that you too can get through it. You are not alone, and yes you can eat yummy pizza again, we promise!