My Celiac Story
Photo by Emily Mathewson Photography
Looking back on my journey to where I am today is mind blowing – I was falling asleep out of now where whether it be at work, behind the wheel, and/or as soon as I had woken up. I was always bloated, was getting the worst headaches to where I had to be in a cold and dark room to even somewhat manage them. I always felt awful after I ate and even worse when I drank beer.
It all came to a scary build up in Summer 2015 when I was at work and could not keep myself upright due to the pain in my stomach. I went to urgent care and they simply wanted to give me medicine but did not know what was wrong. I decided to try and push through, but the next morning I was in so much pain I had to take myself to the ER where I was admitted for a week due to me having two soft-ball sized ulcers in my stomach. While in the ER I had scopes, colonoscopies, and monitoring of my vitals, but no celiac diagnosis as nothing could be found physically wrong besides the ulcers. However, I had to end up going on short-term disability for the rest of the summer due to the medicine and others tests that doctors wanted to run. I had 4 operations and 4 ambulance rides to the ER that summer and none of the diagnosis came close to celiac disease. I was told I possibly had endometriosis, cervical cancer, IBS, and just seems like your normal GI problems while also being given pills for unconfirmed diagnosis and were simply just masking the pain.
So, for the next 2 years, I went on with the hustle and bustle of my life while still not feeling 100%. I knew something was wrong but could not find a doctor to help me out. One moment that really sticks out to me was when I was visiting my now fiancé then boyfriend in Pittsburgh and we had gone out the night before where we had gone to some new breweries and enjoyed lots of gluten-containing foods (my favorite). Well I woke up feeling like I had acid reflux and my stomach was not happy with me, so while we were on the highway (Pittsburgh does not have pull over lines) I had to manually roll down his window and puke out of his car while he was driving (#ThatsSoCelic). I even went to the ER the next day because I could not hold anything down and felt awful. Again, nothing came back abnormal besides having a high count of liver enzymes, which now is one of the extra-intestinal signs of celiac disease. I had something similar in Atlanta, GA on the highway on the way to Sweetwater’s 420 fest, but actually had the Uber pull over and get sick. My body seemed to be getting to a point to where it was legit revolting against me, and I would be down for the count the rest of the day and even into the next day.
The final straw the broke the camel’s back was Thanksgiving 2017. The flu was going around, but I knew what was happening to me was not the flu. Let’s just say the day after Thanksgiving where obviously you consume so much food contained with gluten that I was down for the count in so many different ways. I spent most of the next day hiding in the bathroom and sleeping. I woke up the next day feeling better, survived our drive home, and even had wings for dinner that night (looking back on that decisions probably not the brightest, but I was hungry from not having anything left in my body from the day before). However, I woke up in the middle night with the feeling like someone had just dropped a match down my throat, I was burning up, I could not stand up straight because my stomach hurt so bad and could not leave the bathroom. I slept on the bathroom floor the night due to the cold ground and the proximity to the toilet. I could not even keep water in my system, so my now fiancé and I decided I needed to go to the ER. Of course, I was back into the vicious cycle of “we do not know what is wrong with you, but here are some pills”. I even got admitted due to the pain I was in then un-admitted 20 minutes later because they did not know what do with me. They told me to come back in 48 hours if I was still experiencing the pain and symptoms, so guess who ended up in the ER 48 hours later? This was when I knew had to start advocating for myself, especially with all the weird blood panels, symptoms, and pain I was having. I saw a liver specialist who said he loves to work on livers, but does not need to work on mine, but recommended I get an upper gastrointestinal (UGI) endoscopy. This is a procedure where a doctor gets the opportunity to look at the inside lining of your esophagus, your stomach, and the first part of your small intestine via a scope.
Now we are in January of 2018, where the GI specialist whom I had never met before and only met 20 minutes before my operation, sat down with me, asked me questions, and asked me “have you ever been tested for Crohn's or Celiac Disease?”. My response was “I have not, and no doctor has every brought those up to me”. He was in disbelief of that and knew that doing a biopsy** of my stomach tissue to test me for those two things would more than likely give me the answer I needed, which it did! Beginning of February 2018 is when I found had I had celiac disease and that was the start of my journey of learning about the auto immune disease and how to live with it.
It took me 3 years to figure out what was going on with my body and I am still learning, but 3 years to get an actual diagnosis is insane! I have done a lot of learning and advocating over the last year and a half to get where I am now, but I still have a lot to learn. I have taken a lot of steps to not feel like I did at the height of knowing I was suffering from an auto immune disease. I hope that you realize you are not alone and that this blog is a safe space, a community, and a place to learn how to live with celiac disease.
**Biopsy remains the most accurate way to diagnose celiac disease.