Four years ago, I had never even heard of Celiac Disease. I had no idea what it was and would have never ruled it out as a possibility. Today, many still do not know what Celiac disease is because there isn't much awareness about it. I hope to be able to increase awareness and help others suffering by sharing my story. I will be walking you through my pre-diagnosis, breaking down the mental and physical symptoms I experienced.



A little about Celiac Disease
Celiac Disease is an auto-immune disease that affects the lining of the small intestine. The consumption of gluten triggers an abnormal immune response damaging the absorptive surface of the small intestine. This can result in malnutrition, nutritional deficiencies, increased risk of autoimmune diseases, and some cancers of the gut if left untreated. Celiac disease has several symptoms which can differ from one person to another. Many also experience little to no symptoms, or may only start feeling them once the disease starts progressing. The average diagnosis time is about 10 years for individuals suffering from celiac disease. How crazy is that? I was fortunate enough that I got diagnosed earlier than that. In my case, it started off with the physical pain and eventually, it affected me mentally as well.

**Warning: This may be a lengthy post #sorrynotsorry! 
(Although, I will do my best to keep it to a minimum, I find it very important to let people know who I am and my story in order to educate and help others, hoping they do not have to go through such an enduring process!)

My Story 

When I first started experiencing symptoms, it started off with mild stomach pain. As most average teenagers would do, I blew it off thinking it was just a bad stomach ache that would go away. Boy, was I wrong. Fast forward two weeks, I was in Lebanon supposed to be enjoying a two-month vacation. Instead, I was struggling to even enjoy myself. The stomach pain had gone from zero to one hundred REAL f* quick and I couldn't even process what was happening.

I began experiencing mild stomach pain as previously mentioned. Eventually, the pain got worse within a matter of 2 weeks and was now accompanied by a lack of appetite, nausea, and weight loss. I managed to lose 15 pounds within those two weeks. Seeing as I had never weighed more than 115 pounds, losing 15 pounds was a big deal for me. I looked very unhealthy at that point, especially at my height of 5'3 (I will link photos at the bottom of the post for reference). Over the course of two months, the symptoms progressed. Although unhealthy, I managed to stay at a solid 100 pounds.

The journey to countless visits to the doctors office had just begun. Frequent diagnoses were limited to over-stress, or that I had IBS and should stop worrying because it would soon pass. That was the most devastating news for me to hear because I knew something was wrong. The pain drove me crazier day to day, and it progressively got worse. I started feeling weak, sleeping a lot more, lacked motivation, and just had no energy to do anything.  All of these symptoms are common signs of depression but at the time, I was in denial. I was in denial because I knew that there was something more than the fact that I was depressed. After educating myself enough on the disease, I now know that depression is another symptom of Celiac Disease and although it was very hard to come to terms with, I was able to admit to myself that I was depressed.

Two months had gone by, and I was back in Toronto now but still no diagnosis. After countless visits to the doctors office, no one could rule out the problem. I was at my weakest point, and I was starting to lose hope. Giving up just seemed like the only option left. I visited a total of 14 doctors with no questions answered. At this point, I was in my senior year of high school. I had a great boyfriend and great friends that I truly cared about but I could not find it in me to show them because this had taken a huge toll on me. They would frequently mention that I wasn't the same Léa they knew, that they thought I was going crazy, and that I was delusional. It upset me because I knew exactly what they were saying but could not find the power in me to do anything about it. I felt like everything was falling apart and I was hopeless. Celiac disease is a very powerful disease and will affect you physically as well as mentally. I physically and mentally felt that I could not do things I was able to as little as 2 months prior.

Mentally, this took a huge toll on me in terms of my personality and mood. This affected my personal relationships and my education. I would sleep for the majority of my days, leaving little to no time for school work or friends and S/O's. I am forever grateful to have had a good support system around me from my sisters to my boyfriend, and friends. But it is very hard to not feel guilty for having to put people through that with you and you can't help but feel like you are being given up on at some point. After all these visits to the doctors, and the countless "you're okay"s and "it's all in your head", it is more than likely that the odds will be against you. A lot of people around me really believed I was okay at this point, even my own parents started thinking I was delusional. It really sucked that I couldn't even get my parents behind me on this. But with all the proof against me, it was hard to even convince anyone. This did not aid in any way with the stress and anxiety I was feeling.

I would often get anxiety attacks when I would argue with my parents or when other aspects such as friendship and relationships were struggling. I knew everyone thought I was going crazy, and I also knew that I was driving people crazy. This was not something easy for me to handle and I was really struggling, but it was hard to make people see eye to eye with me on it at the time because none of us really knew what was going on. Part of me always feels a sense of guilt for having put my friends through it and even my S/O because starting a new relationship, to have someone do a 360 on you unexpectedly, is not something that's easy to handle. That part still aches in me because I would have never wanted to put someone through that. But another part of me tries to be at peace with it because I did not choose for things to go the way that they did. I would have wanted to hope for the best, but sometimes in life, you can't expect what's going to happen to you and I didn't choose Celiac Disease. Once I realized what was going on and I finally got diagnosed, everything from my changed behaviours, the way I was looking, and feeling, all made sense. Everything just became crystal clear and I just wished it had happened sooner for others to understand with me why I was the way I was. Despite it all, I will forever be grateful for those of you who stuck by me, and thank you. You know who you are. And although it would have been easy to give up on me, I also want to thank you for sticking by me and giving me that string of hope to latch onto.

There were several occasions where I would come back home with no answers, feeling hopeless and just saying I guess I am just going to have to live with it. Having someone there pushing you to keep looking for answers is the best thing you could ask for. That was what kept me going in times of despair. Someone told me: "you can't give up on yourself like that, you have to keep going until you get your answers". And I did have that drive at the beginning. When I want something, I am driven and I won't stop until I get it but it's very easy to lose your drive in desperate times. Having someone tell me that, was a constant reminder of who I was and what I was fighting for. It also reminded me, that there are people who truly do care about me. This was year 2 of my pre-diagnosis.

Fast forward to 2014, I had gone to a new clinic that had just opened up by my house. The doctor had sent me to do an abdominal ultrasound. As the lab technician was performing the ultrasound, she looks at me and says "holy ****, there is so much gas in your stomach, I can't even see your liver". She went on asking me questions as to the reason for my visit and we began talking about intolerances and allergies. It wasn't until then that the idea of a "wheat allergy" was brought to my attention. She mentioned her friend was experiencing stomach discomfort for a while and after removing wheat from her diet, she felt like herself again. After that appointment, I came home and started doing some research. That is when I stumbled upon Celiac Disease. I read up on the symptoms.. and I had just about every symptom in the books.

*Just for reference here are common symptoms one may experience:

Abdominal pain
Weight loss
Nausea
Lack of appetite
Nutritional Deficiencies
Anxiety
Depression
Joint Pain
Indigestion
Bloating
Recurring/persistent diarrhea
Menstrual irregularities
Migraines
Lactose Intolerance
Anemia

Those are some of the symptoms I experienced. For an extended list of symptoms please visit: http://celiac.ca/pdfs/celiac%20disease%20what%20is%20it.pdf.

I took it into my own hands to go to that same clinic, explained to the doctor what was going on and for how long and demanded I get screened for Celiac Disease. I had finally found a doctor who considered it as an option and agreed with me.

There are two steps for Celiac Disease diagnosis. The first step is a screening where they perform some blood work. If the blood work comes out positive, a biopsy is done in order to confirm the diagnosis. After the initial blood work was done, I was screened with a positive result. I then went for an endoscopy procedure to confirm the diagnosis. A biopsy of the small intestine was taken. On August 13th, 2014, I was officially diagnosed with Celiac Disease.

Finding out I had Celiac Disease was nowhere near easy. When I found out, I cried. It was like a bittersweet moment. On one hand, it was a relief because I had finally found my answers 4 years later. On the other hand, I knew this was going to be a turning point in my life, and I was scared. I knew the journey back to recovery wouldn't be an easy one, but that moving forward it would be nothing but better.

What I've learned now