My Gluten Free Story

Everyone who has Celiac Disease or is Gluten Intolerant has a story about how they discovered they needed to live a gluten free lifestyle.

Here is mine.

Growing up, I was always considered small compared to the other kids in my grade. But overall, I was a happy and playful little girl who loved being outside with her animals.

I don’t really remember an exact day or time when I started getting sick. I do recall having joint pain for almost as long as I can remember, and later developing stomach aches. The rest of my symptoms included nausea, fatigue, headache, underweight, bloating and more… the typical Celiac signs.

I went to several doctors, who all diagnosed me as “failure to thrive” and said I should take snacks to eat in class and to drink pediasure to help me gain weight. Eating snacks during class wasn’t exactly great, having all the other kids look at me and ask why I got to eat in class when they didn’t. Also, pediasure wasn’t the best tasting supplement.

A year later, my pediatrician at the time had ran some blood work. I don’t remember why, maybe a physical for school. The results from that lab test was what sent me to Riley Children’s Hospital and would later explain a lot of my symptoms.

I was diagnosed with a high ANA, which stands for anti nuclear antibodies. Basically, indicating an autoimmune disorder. I was sent to the rheumatology department at Riley Hospital my 5th grade year of school. At Riley, they asked me all my symptoms, looked over the lab work from my pediatrician, and scheduled more lab work to be done.

Years and years of appointments at Riley Hospital and blood work and we weren’t headed in the right direction. The rheumatology department would routinely check me for Lupus and Rheumatoid Arthritis.

My mom’s cousins had found out many years prior that they had Celiac Disease, my great aunt carried both genes for Celiac. They thought we should check into it since all my symptoms matched up.

We told Riley Hospital and they sent me to the Gastroenterology department, which was not a pleasant experience. They basically said my symptoms were “all in my head” and didn’t believe me.

About 4 more years went by and I wasn’t getting any better, my symptoms just got worse while my blood work showed nothing except a high ANA. We were at a stand still.

The summer following my 7th grade year I was to get oral surgery done. A few weeks after the surgery we were on our way for my checkup, about an hour from our home. I remember the whole ride there feeling nauseated…I had milk and cereal for breakfast that day (gluten AND dairy…double the pain).  I had also lost around 10 pounds, which I didn’t have to lose. I weighed around 70 pounds going into my 8th grade year. I felt like I was wasting away and Riley Hospital could not get me in for another month.

Mom decided that we were going to talk to her cousin about Celiac Disease and the gluten free diet. I was with her this time, having denied looking into gluten free before because I said, “I won’t be able to eat anything.” But this time I was too sick.

So that day we went to talk to our cousin. She told us about the diet and let me try a lot of samples. The food wasn’t bad! And even better, it was the first meal in weeks, months even, that I wasn’t sick after.

And from that day, I’ve been gluten free. We went home and got rid of all the gluten in our house. We researched a lot and couldn’t have done it without the support from our cousins.

I was never actually diagnosed Celiac. Of course, after I went gluten free, Riley could get me in and said I would need to go back to eating gluten for a month to get diagnosed…I wasn’t wild about that, about my symptoms coming back and being sick again. It’s pretty obvious that I’m Celiac. It is best to get diagnosed though, to see how much damage gluten has done and if there is other issues going on.

Since then, we’ve started a Celiac/ Gluten Intolerance support group and I was lead to my major of Dietetics.

It’s amazing how much food can affect you. Both positively and negatively.

I hope my gluten free story has been inspiring for someone. I use it to remind myself why I’m in Dietetics: to help others who are newly diagnosed and to promote living a healthy lifestyle.

Let’s get the word out about gluten free and Celiac! It is so much more than a diet, it’s a lifesaver.