My Story - Blog Post #1

This is My Story

This is a long one folks- 

It will be 8 years in December, since I stopped eating gluten- and technically, I was not officially diagnosed with Celiacs disease until a year and a half later. Here is my story.

My parents thought I was a weird child because not only did I hate milk, I didn’t like ice cream, pizza, cookies or really anything sweet. My after school snack was a whole tomato, usually with some salad dressing. I lived off of white rice, meat and vegetables.  I was a tiny, tiny child- I did not hit 4 feet until I was 16, and barely broke 100 pounds until my junior year in high school. I was always small, but very active- and when I was 10, my doctor expressed concern that I was not growing according to how most kids my age were supposed to grow, so I was sent to a specialist. There, the doctor hooked me up to a machine that took a vial of blood every half hour for 3 hours. I don’t remember a lot about that day, but I do remember I was told to fast, so by the end of it, 10 year old me was starving, and they left my family and I with the information that nothing was wrong- or that they didn’t really know what was wrong, and that my parents should try to fatten me up a bit because maybe I just had a fast metabolism. So, we stopped at McDonald’s on the ride home. 

For that year, my mother made me drink vitamin shakes and took me to Mickey D’s quite a bit.  I didn’t know what was going on- but I knew that my stomach hurt almost every day, and that certain things, like cereal, pizza, milk and ice cream, made me feel like garbage. Back then, Celiac’s disease was rare, and they did not even test me for it- but rather they tested me for ulcers, colitis, and other upper and lower GI ailments- but there were no conclusions as to why I felt sick all the time.  I hated going over to sleepovers, in fear of my stomach hurting, and I hated using the bathroom, so I would hold it in school for hours, and feel like someone was stabbing me in the stomach until I got home.  There was a lot of embarrassment attached to my issues, but I thought that it was just normal to not want to eat, or go to camp, or sleepovers, or use the restroom in school. It was a struggle.  

I was a pretty happy kid though- I was a gymnast from a young age, and my size was very beneficial to that sport. I played softball, I was a cheerleader and was on a bowling team. I hated sitting still. As I grew older, I was never really unhappy with my size, but wished that I grew a little more womanly- and was jealous of my friends and classmates who “filled out” over time.  Come to find out, this was all related to celiacs disease.

Long story short, after 30 years, and many issues, frustrations, lots of pain, missed events- my life started over again.  After 3 decades of undiagnosed celiacs disease, so much became clear to me and I was able to truly live. Before realizing that I had celiac’s. I researched my symptoms often, and finally stumbled upon the idea of living gluten free, and was recommended to read the book by Elisabeth Hasselbeck called The G Free Diet- the Gluten Free Survival Guide. Within the first chapter, hearing Elisabeth’s story, almost all of my questions were answered! I felt so many emotions- first being anger, why had I not figured this out before, and elation- that I might be able to feel better. I decided to try out living gluten free- just to see what happened. After only 4 days I felt - different. My stomach was not bloated, I didn’t have cramping, and I felt like I could take on anything. At that point, I knew that this had to be my answer- and never went back to eating gluten. That was it- regardless of not having an official diagnosis at that time- I didn’t care- I felt better, and no doctor was going to make me eat gluten again.

I cried after the first week when I realized that this was how everyone else felt- not sick - on a daily basis. I cried out of happiness, but out of sadness as well, mostly because I knew I couldn’t eat bagels anymore, but also because I had missed out on so much in my life, due to a protein- found in those bagels. 

I was officially diagnosed a year and a half later, when the rash on my arms, back, scalp and fingers got unbearable. Come to find out, cross contamination with gluten caused my skin to attack itself- I was diagnosed with dermatitis herpetiformis, a rash almost only linked to celiacs disease, and the dermatologist told me I was what they called “hyper-sensitive.” Meaning, that even if I don’t eat gluten directly, I will still get a reaction when I consume anything that even has a speck of gluten on it or in it. Although annoying, the best part was finally getting confirmation that gluten was the enemy. I was thrilled to know for sure, and knew that my life could only continue to improve with my new diagnosis.

If you are reading this now as a newly diagnosed celiac, I feel for you- but please understand, the gluten free community has come a LONG WAY since 2012. There was close to nothing delicious that was gluten free, and no one really understood, that no, I cannot eat a french fry if you cook it in the same oil as the chicken fingers, and yes, I will get sick if I do… It was a constant battle. Thank GOODNESS that things have changed and more people truly get it now, and I eat gluten free bagels that are REALLY good. 

It has been a crazy journey for sure. There are so many additional details I will share in later posts, but I will leave you with this- do your research if you are wondering if you have an issue with gluten, give it up and see how you feel. I hope no one ever has to feel the way I did physically back then, I would not wish that upon anyone! And feel free to reach out if you ever want to discuss and ask questions. 

I promise you that if you have to give up gluten, I will make you a cupcake that tastes like it has gluten in it, but it doesn’t, and it definitely won’t make you sick. Celiacs deserve delicious food and cupcakes too!