Finding out that I had Celiac disease was a weird and strange road for me. I didn’t find out that I had Celiac until I was 19 years old, after a months long journey of figuring out what was wrong with my stomach.

Let’s go back to the beginning, though. When I was a young child, there was a brief period of time that my mom and I thought I could have Celiac or some kind of gluten intolerance because I kept throwing up and getting sick after I ate. I had a friend who had Celiac, so we were already familiar with the disease and possible symptoms. However, even when I was eating this gluten free diet, I was still getting sick. So we just stopped and I went back to eating regular food and eventually the getting sick sort of just went away on it’s own. Now let’s flash forward to April of 2021.

In April of 2021, I was just having a normal day getting ready for work while my mom was in Florida on vacation (this is important to the story). As I was finishing up getting ready for work, I had the worst stabbing pain in my stomach that I had ever felt in my life. I couldn’t even walk, that is how intense the pain was. I immediately called my mom and told her something was wrong, and called off of work. Since my mom was in Florida, we called my aunt and my cousin in case I needed to go to the emergency room. Within an hour or so, the pain had gone and we decide it must have been an ovarian cyst that ruptured. We scheduled an appointment for the very next day for the OBGYN to get everything checked out.

So, the next day comes and I take myself to the doctor. After what felt like a never ending and unpleasant check-up at the OB, the doctor comes in and tells me that she needs me to FaceTime my mom before she tells me the results of my exam. The alarm bells are ringing for me now and I begin to panic, but I call my mom (who was out to lunch with my aunt and grandma in Florida) and we get on with it. The doctor proceeds to tell me that the ultrasound showed I had an ovarian torsion, and given the amount of time since the pain occurred it was likely that I would need to have it removed. Now at this point in the story you are probably wondering what any of this has to do with me getting diagnosed with Celiac, but I am getting to the point I promise. So, picture me, an 18 year old girl by herself in the OB’s office, getting told that I needed to have emergency surgery because my ovary is twisted and needs to be fixed and probably taken out completely. After a bit of chaos and confusion, I get moved and prepped for surgery. Thankfully, my aunt and uncle were able to come to the hospital and comfort me since my mom wouldn’t be able to make it home until the next day.

Next thing I know, I am getting wheeled back into the operating room and put under anesthesia feeling terrified at my situation and afraid about the potential of losing one of my ovaries. As a young woman, this was a really horrifying situation for me to be in. My doctor was, thankfully, amazing throughout the process and listened to all of my concerns and fears regarding the procedure and consequences of losing an ovary. Well it turns out I didn’t need to be worried about any of this at all. When I woke up in my room after the surgery, my doctor came in looking very happy! She said that when they went in to fix things, my ovaries were completely fine! There was no torsion, and no issues at all with my ovaries. There was however some major issues with my intestines (gross, I know). To spare you the gory details I will keep this part brief, my intestines had an insane amount of scar tissue and resembled someone who had to have had multiple abdominal surgeries. I had 0 at this point. My doctor was basically saying it was a hot mess of scar tissue and looked like someone had hung my intestines on a hook inside my body, which is why the scans looked like I had an ovarian torsion. The spot where my intestines were pinched was right over my ovary, causing the confusion.

So problem solved! My doctor fixed the scar tissue and my intestines, and I got to keep both my ovaries in the process. Yeah, well turns out an 18 year old isn’t supposed to have such a messed up situation in the stomach and we needed to figure out what was going on to prevent further damage or another potentially dangerous situation like this from happening again. I went to the GI specialist at our local hospital, and I guess for every good doctor (my OB) there is a really bad doctor (this GI specialist). He was so disinterested in what I had to say, and completely disinterested in my symptoms and surgery. He basically chalked it all up to the fact that I have a very short torso and not a lot of space for my organs to sit, and that caused the scar tissue to build up. Well, I wasn’t really buying this explanation, so after some pestering on my part he promised to look into it and call me about what he found (spoiler alert, he never called). And for the next couple of months, that was that and I never got any answers. Until I got a referral to Ohio State to see a doctor there.

Now it’s the end of November, and has been months since my surgery. My mom and I go to Ohio State so that I can get some tests run, an endoscopy and colonoscopy (TMI, but it is how they have to get the biopsy and run the tests). Thankfully, they put me in a twilight state for this so I do not remember either of these things happening. So, after a quick nap for me and the tests taken, that was that. I got the results not too long after and they said very clearly that I had Celiac disease. Finally I had the answer to all of my issues! This was really reliving for me, I knew what was wrong and I knew how to fix it. However, because I was so used to eating gluten and all the yummy food made with gluten, the problem became that I didn’t care to change my diet…

I was so used to eating gluten that I didn’t feel the everyday effects of what it was doing to my stomach because that was my baseline. It took probably a full year for me to fully accept being gluten free without any relapses. I had a few people in my life who also had Celiac, and one of them told me the true long term effects that could happen if I didn’t eat the way I was supposed to. Turns out that if you have Celiac and continue to eat gluten, the damage to your intestines can be irreversible and you can even get cancer or have infertility issues. This was a huge wake up call for me, to realize the damage that I was doing to my body and my future. Once I started eating gluten free, I had some relapses here and there, but the longer that I went without eating gluten the more it hurt when I ate it. Now I have been fully gluten free since the fall of 2022, when I moved to Denmark and met my boyfriend, and he made the commitment to eat gluten free with me! We live together and have a completely gluten free household and kitchen, and we know all the spots in Odense where I can eat without getting sick! Having a support system really makes the world of difference when trying to change your lifestyle to something that feels scary and different. I was so worried that I would never be able to fully transition to a gluten free diet, but now I have figured out ways to eat all my favorite foods in gluten free form!

I guess that the moral of this story is that sometimes going to the doctor is really scary, especially as a women when we constantly have to advocate to be heard and taken seriously (I am still mad at you, GI specialist #1), but the outcome of finally figuring out what is wrong and causing you pain is so worth it. And it isn’t that scary to have Celiac anymore! The worst part is the accidental getting ´´glutened“, as I call it when I go out to eat and get sick from cross contamination, and how expensive gluten free food is! All in all, the road to getting where I am now in my health journey was difficult and took a lot of willpower on my part, but I love the feeling of not being exhausted all the time and having my stomach be in constant pain. If you are struggling sticking to your gluten free diet, or making any change to better your health and well-being, trust me I know how hard it is! It is so worth it in the end though, to put yourself first and prioritize your health.