I tend to be the type of person who struggles in silence. So why am I sharing my story with celiac disease? Well, because I think we live in a world where we are expected to have our lives wrapped in a neat little bow. We show our picture-perfect selves through social media and leave out all the hard stuff. Do I want to share recipes that taste good while also being good for you? Absolutely. But I don’t want anyone to think that just because I’ve created some good recipes that this journey has been easy. When I was struggling the most with this disease, I felt like I was alone. I felt like nobody really understood what I was going through, not even my doctors. It’s not like anyone could physically see my symptoms. Plus, the gluten free diet has become such a trend that people don’t really see celiac as a disease. Grocery stores have aisles dedicated to gluten free foods. Restaurants are including gluten free options on their menus. The common thought is that you just simply need to avoid gluten and your life will go back to normal. Maybe this is true for some people with celiac disease, but it hasn’t been the case for me. So instead of downplaying this experience or pretending that it has been easy, I am opening up and getting real about what it is really like living with celiac disease.
Before I jump into my (very lengthy) journey with celiac disease, I want to take a minute to talk about what it actually is. Celiac disease is an autoimmune disease in which ingesting gluten leads to damage of the small intestine. When people with celiac disease eat gluten, their body starts to attack itself, specifically the small intestine. This immune response damages the intestine’s lining and prevents it from absorbing nutrients. What makes celiac disease so difficult to diagnose is that there are over 300 symptoms, many of which overlap with other conditions. As a result, many people with celiac disease go undiagnosed or misdiagnosed. Celiac disease can look so different from person to person which is why it is important to remember while reading my story that this is my personal experience.
If I had to use one word to describe my stomach it would be sensitive. Even from a young age, I would complain of stomach pain and discomfort. Whenever I was stressed or overwhelmed, my stomach hurt. However, it was never enough to go to a doctor and get checked out. It was more of an annoyance that came and went. Fast forward to my sophomore year of college and the stomach discomfort started to get worse. I also started to have more consistent GI issues. I decided it was time to go to a doctor to get everything checked out. I was told that there is a possibility I could have celiac disease but they would need to perform an endoscopy to confirm this. I was not thrilled by the idea of them sticking a tube down my throat so I decided the discomfort wasn’t that bad and forgot about the whole thing. This was also around the same time I was diagnosed with depression. So, as my stomach discomfort came and went, I would chalk it up to my depression or how my body reacted to stress. When it would get bad, I would see my primary care doctor who would agree that it was stress related.
In 2016, I started experiencing random symptoms on top of the intermittent GI discomfort. It started with migraines, which I’ve never experienced up until this point. My migraines would often lead to me throwing up and staying in bed all day. During this time, I was in my last year of graduate school and was under a lot of stress so I thought this was the cause. I thought that I just needed to push through until graduation and then I’d be okay. Then I developed asthma out of nowhere. Like wake up in the middle of the night gasping for air kind of asthma. So, I went to the doctor and she prescribed me an inhaler…problem solved. Then I started to complain about mouth sores, joint pain, bruising easily, and being tired all the time. I could easily sleep 12 hours and still wake up feeling exhausted. No amount of sleep would leave me feeling rested. I also was constantly getting sick. I had strep throat three times in 2016 in addition to the stomach bug, flu, and several colds. But, again, I thought it was stress related and the symptoms were so random I never thought twice to connect them.
During the summer of 2016, I started to get sick after drinking alcohol. It didn’t matter how much (or how little) I drank, I would be up all night in the bathroom with GI issues. I would easily go to the bathroom 6-8 times throughout the night. I would also feel extremely dizzy. This would maybe make more sense if I was out all-night drinking and living it up but this happened even if I consumed one or two drinks. I started to try different types of alcohol. Maybe I’m allergic to wine? Maybe I can’t drink beer anymore? Nothing made a difference. It got to the point where it wasn’t even worth drinking. I thought maybe I somehow became allergic to alcohol so I decided to stop drinking it altogether. This helped for a month or so, but then my symptoms returned with a vengeance.
I started to experience intense stomach pain, cramping, bloating, and nausea. Eating food became difficult as nothing was appetizing and everything seemed to make me feel worse. I would spend a lot of time in the bathroom because everything was going right through me. I was going to the bathroom at least six times a day, but usually more. On top of the GI issues, I was also experiencing chronic fatigue, headaches, and brain fog. Trying to focus often felt like trying to swim through a pool filled with cement.
In the beginning, my symptoms seemed so random that I had no idea what was going on and thought it would eventually get better. However, it got to the point where I thought it might be a good idea to see what was going on so I went to my doctor who diagnosed me with irritable bowel syndrome. She gave me some muscle relaxers for my stomach and basically told me that there isn’t much I could do other than try to relax and not be so stressed (easier said than done when you feel like your body is failing you). So again, I thought my symptoms would eventually go away and I’d be back to normal soon enough.
However, this was not the case as everything kept getting worse. My GI symptoms became more severe and I experienced them pretty much all day every day. It got to the point where the only thing I really could eat was toast (which was literally the worst thing I could be doing). I was losing weight quickly and ended up losing a total of 40 pounds before I was diagnosed. I was at the point where I would wake up, somehow make it through work, and immediately come home and either go to bed or spend the rest of the night in the bathroom. I often woke up in the morning and would contemplate if I should go to work or the emergency room. I stopped hanging out with friends or doing anything outside of work because I felt so sick. My whole body would ache all day and nothing seemed to relieve it. It felt like everything inside me hurt. I remember crying when I had to take my dog outside because it took so much out of me and hurt every part of my body. This was the point when I started to experience the mental symptoms of celiac disease. I started to have anxiety and panic attacks, which just made my GI issues worse and started a vicious cycle (anxiety caused GI symptoms to worsen which increased my anxiety). I felt hopeless and as if this was going to be my life forever. I felt guilty and blamed myself for feeling this way. I went back to the doctor who prescribed me anxiety medication because she thought the anxiety was causing my symptoms. So, I kept sucking it up and pretending like everything was okay. I did what I had to do and hid how I was truly feeling to most people. But sucking it up started to get harder and harder as my body became weaker and sicker.
It wasn’t until my sister’s wedding in April of 2017 that I realized that that something was definitely wrong and I needed to go see a GI doctor. Honestly, I think I was in denial and didn’t want to admit how bad my health was until this point. I just was doing what I had to do and didn’t want to think about what could be wrong. My anxiety also made my denial worse because I didn’t want to find out that something was seriously wrong with me. I would spend hours Googling my symptoms and I either had a cold or was dying, so to reduce my anxiety I tried to ignore my symptoms with the hopes that everything would get better. I told myself things weren’t really that bad. But when I barely made it to the bathroom in time at my sister’s wedding and needed to leave early because of how sick I felt, I realized that I needed to get help. Looking back, I can’t believe it took me to this point to realize that it wasn’t just stress or anxiety. My body was literally attacking itself. Thankfully, I was able to get in with a GI doctor prior to our wedding to figure out what was going on. They performed an endoscopy and colonoscopy to find the cause of my symptoms. I didn’t even care that I had to get an endoscopy, I just needed answers. To put my symptoms into perspective, the prep for the colonoscopy didn’t even phase me because this is what I was experiencing every single day. Truthfully, the prep wasn’t even as bad as what I typically experienced on a daily basis because you don’t eat food during it.
In May of 2017, I was diagnosed with celiac disease. I remember getting the call from my doctor and feeling so relieved that I had an answer. I hung up the phone and cried in my office. I wasn’t crazy. It wasn’t just stress. I had a real reason that I felt this way and I could do something about it. I was going to be okay. My doctor told me that all I had to do was start eating a gluten free diet and I’d be back to normal. So, that’s exactly what I did and it didn’t take long until I started to notice a difference. It took a while for the fatigue and overall feeling of being run down to go away but it was a drastic difference from how I was feeling before. Two months after being diagnosed, I was able to truly enjoy our wedding day. I married my best friend, ate, drank, and danced the night away with family and friends. I felt like everything was going to be back to normal in no time.
Oh, how I wish this was the end of my story. I wish that I could say that I was diagnosed with celiac disease, got married and lived happily ever after. But this was not the case. This part of my journey was just the beginning and my body had a lot more healing to do (and still does). But that’s a story for another time…
-Kelsey
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