Six years ago I was diagnosed with celiac disease and, as a result, began eating gluten-free. Six years ago “gluten-free” was not a Hollywood fad, social media hashtag or controversial topic. In fact, it was pretty unknown.
(Note: This is a very simplified version of the medical terms and diagnosis. This is also how my doctor explained it to me when I was 13…in an easy-to-understand way. Visit celiac.org or celiaccentral.org for a more in-depth overview).
I was sick for most of my 8th grade year with stomach aches. Initially, that’s what my doctor and parents thought my diagnosis was: just stomach aches. Since I was little I’ve had digestive issues and I have always harbored stress and emotions in my stomach, so combined, those two factors seemed to be the culprit of my daily pains.
But these stomach pains came with weight loss, bloating, increased constipation and fatigue. My hereditary dark under-eye circles were more pronounced than ever and my mood was definitely not pleasant. So I went back to the doctor for further evaluation.
First, my doctor suggested I eliminate certain foods starting with acidic food. After no change, I eliminated dairy products. Then, the closer I got to my 8th grade graduation the more my parents and I pushed for tests. Next up, a blood test.
Before I got the blood test my doctor explained celiac disease for the first time. All I remember her saying is “if the diagnosis is celiac, you won’t be able to eat food made from wheat, barley or rye.” I kind of dismissed that possibility in my mind because it seemed like such a drastic condition and I came from a simple family with no “unusual” conditions (to me, celiac was ”unusual”). She said if the blood test results showed high levels of certain antibodies, it would suggest the possibility of celiac disease. From there, the next step would be to have an endoscopy because only that can confirm celiac.
When my results came back, the doctor told my mom to schedule an appointment with a GI for an endoscopy (you guessed it, my antibody levels were high).
I had not started eating gluten-free yet because in order for an accurate diagnosis, you need to be consuming gluten for at least a month prior.
An endoscopy is a short procedure where the GI puts a camera down your throat to examine the small intestine (I was under anesthesia). The GI will take pictures and samples of tissue, which will then be looked at under a microscope. If my villi were flattened or damaged, that would signal celiac disease.
While the doctors guessed I had celiac based on what they saw through the camera, I had to wait for a pathologist to confirm the biopsy results. A few days later, I went in for the pathology results and I was officially diagnosed with celiac disease.
Again, this was at a time when “gluten” sounded like a foreign word. I was stunned, confused and overwhelmed. What do I do now?
To be continued….