My Health Story: Celiac Disease

How did you find out you had Celiac Disease? This is definitely one of the most common questions I get asked and I wish I could say the whole process was quick & easy, but it was FAR from that. Getting diagnosed with Celiac Disease is actually only the beginning of my health story rollercoaster, but the first major trigger to let me know that something was very, very wrong with my body and that this was just the start of it.

How it all started:

I was 18 years old in my freshman year of college (2010) when I was first diagnosed with Celiac Disease. I played soccer at St. John’s University and it was after one of our home games that things took an extremely sudden turn. Out of nowhere, I had EXTREME pain in my lower stomach to the point where I was on the floor in a curled up ball hysterically crying because it genuinely felt like I was being stabbed with knives. I started having difficulty breathing and everyone around me really didn’t have a clue on what to do. Thankfully, my parents were at this game and were able to immediately put me in the car and take me to the hospital. No one at the hospital that night or my general doctor over the next couple of days could figure out what was going on. After that first occurrence, I had a few more episodes like that until I was finally sent to a gastroenterologist who decided it was time to do an endoscopy and see what was really going on inside. As soon as I woke up from that procedure, my doctor assured me that I no doubt had Celiac Disease and a very serious case of it. He explained to me how the villi on my small intestine (responsible for nutrient absorption) were completely flattened & nearly destroyed from the damage that has been going on for likely 10+ years.

Quick overview on Celiac Disease for those that aren’t too familiar:

Celiac Disease is an autoimmune disease that can occur in genetically predisposed people (you have to have the gene) where the ingestion of gluten leads to serious damage in the small intestine. When people with celiac disease eat gluten (a protein found in wheat, rye, barley, and other grains), their body mounts an immune response that attacks the small intestine. These attacks lead to damage on the villi, small fingerlike projections that line the small intestine, that promote nutrient absorption. Right now the only treatment for celiac is a gluten free diet & sticking to this diet 100% will usually heal the villi and the small intestine over time.

I’d be lying if I said it didn’t take a LONG time to get this under control. Again, this was back in 2010 when gluten free wasn’t the trend it is today, so there really weren’t a ton of products out there to choose from. Eating at restaurants was a huge struggle because the staff didn’t know what the heck I was talking about when I told them about my allergy, and that has gotten me extremely sick more times than I could have ever imagined. Some people with Celiac will get an upset stomach if they have gluten by accident (or on purpose), feel foggy & tired for the next couple day, have muscle & join fatigue, etc. but I’m one of the lucky ones who gets violently sick. My reaction happens within minutes and I know right away, so to say that I take it very seriously is an understatement!

After I was diagnosed I immediately started working with the doctors & dietitians at the Celiac Disease Center at Columbia Hospital to help educate & guide me through this new lifestyle change that was going to take some time to get used to. I literally carried around a little gluten free notebook/pamphlet that they gave me with everything I could/couldn’t eat because it was such an information overload at first. It also didn’t help that it was my first semester away from home, so I was on my own for prepping meals, navigating my way through the school cafeteria, and trying to figure out which alcohols were safe to drink (lord only knows what ingredients were in four lokos). And because I have a pretty severe case of Celiac, cross contamination is something that can deeply throw me off the deep end - I even had to get my own toaster so that my bread didn’t have any contact with the regular good stuff.

There were SO many ups & downs during this whole transition and if I were to go into every detail I’d end up writing a full novel. Even with being on the gluten free diet for months at first and then years, I was still getting extremely sick. That then led to having issues with additional food groups, additional GI problems, and later on additional autoimmune diseases. More to come here!

Gluten free is all the talk now as most of you know, but if you or anyone you know have any question about Celiac, gluten sensitivity, or symptoms you’re experiencing, reach out! I’m happy to help in any way that I can.

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