My Celiac Journey

haleybrinkerhoff0
Apr 20, 2023
5 min read

How I came to realize I had Celiac Disease and my life experiences leading up to it

Hi everyone! Let me introduce myself, my name is Haley Brinkerhoff. I am 22 years old, am a college student at Southern Utah University and I have Celiac Disease.

I didn't always know I had it, in fact I really didn't know up until 4 years ago! Because of that my gluten free journey came with a lot of ups and downs, but I've come a long way from where I started.

So how did I figure out I had celiac and what was my life like before that you might ask? Well, let me tell you. First we have to start off at the very beginning.

Early life

I was just like every other little kid when I was younger. I was obsessed with my favorite movies and tv shows (I loved Disney princesses if my sweater didn't give it away). I also loved having fun and could be a bit of a wild child. The only big difference I had was my diet.

When I was little, I was the PICKIEST eater. Like imagine little kids who would only eat like one or two things and that was me.

I refused to eat anything else than things like pizza, hotdogs, ice cream, or toast. And even then, most of the time I didn't even want to eat those! In fact, my parents have always told me that there were times when they would go to McDonalds to get me an ice cream cone so I would at least eat something during the day (but even then my dad would have to goof around and push the ice cream on my face for me to even take a bite if you look at this picture down here).

So what the heck was my problem? The issue was I was always sick. It didn't matter when it was, what we were doing, I never felt good (hence the abundance of toast I ate).

I had so many stomach aches that when I got to elementary school, the school nurse knew me by name because I was in there every single day. Without fail.

Eventually my parents started to get really worried that there was something seriously wrong with me and that I wasn't just being picky. So, they took me to all the doctors they could find. From there I had lots tests done to try and figure out the issue, but I never got any results back. When I was 7, I had four separate stomach biopsies (like the picture below) to try and figure it out, but no luck.

After all stomach biopsies and the exploratory tests that followed, doctors gave up on finding the cause. I was a medical mystery.

So, pretty soon I started getting used to my stomach issues. I though it was normal to feel like it was being crushed 15 minutes after every time that I ate! Well, who knew it wasn't?!

It wasn't until years and years later that I finally started to figure out the root of the problem.

Diagnosis

I had gone through my entire elementary, middle, and high school careers convinced that it was normal for food to not agree with you. In fact, I decided during elementary and middle school that I wouldn't even eat my whole lunch anymore, just the parts I liked, since it always made me feel gross.

Well, turns out that didn't help much either because my snacks consisted of goldfish, ritz crackers, and all the other snacks that had the main ingredient as gluten. Eventually I started eating my whole sandwich, but let me tell ya, it was a struggle for younger me to do that.

Anyways, after graduating high school, I started to notice that my symptoms were getting much worse. It wasn't just feeling gross anymore, every time I would eat it felt like I needed to throw up.

As a side note, a few years earlier I realized I was lactose intolerant, so I thought that could the culprit for my nasty stomach. But even after trying to cut out dairy I was feeling worse. This was when my parents decided to sit me down for a talk.

For years, my mom had been saying it was a possibility that I may have celiac because she was diagnosed with it when she was around my age. But, I refused to believe it. It was my worst nightmare.

How could I give up my favorite foods! My main meals consisted of pasta, bread, and the "occasional" doughnut.

So, I denied it for almost three months. And during those three months, I felt the worst I have ever felt.

It was after those three months of denial and the constant comments from my parents telling me that I need to try eating gluten free, I finally decided to when we were on vacation. I figured if I really felt this awful then there was nothing to lose.

I spent the next couple of days eating gluten free food and I finally felt better. At first, I was absolutely devastated. I didn't want to change my eating habits! So, after eating gluten free for a few months, I decided to eat some gluten to see if that was the actual problem and I instantly regretted it. I was absolutely miserable from my Panda Express orange chicken.

It was then that I finally started to commit to being completely gluten free.

Life after "death"

At first, I'll be honest, I wanted to die.

I knew that eating gluten free would be hard and I didn't want to put in the extra effort. But I couldn't deny how much better I felt. So, I started to try and find the joy in my new found health.

It's now been 4 years since going gluten free and I honestly feel like my life has completely changed! My health issues have pretty much disappeared and my stomach has never felt better.

I spent the first few years trying to adjust to gluten free cooking and have now started exploring with new recipes.

I have been able to find recipes for things ranging from lomo saltado to shrimp alfredo to arepas!

I've been able to teach family members how to make things gluten free and have even gotten to the point to making things where people can't tell that they're gluten free.

I've also been able to find several gluten free restaurants and places with options that has helped me feel more comfortable going out with friends and family!