Part 1: My Diagnosis
(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.)
In 2008 I was diagnosed with celiac disease and consequently began eating gluten-free. In 2008 “gluten free” was not a Hollywood fad, social media hashtag or controversial topic. In fact, it was pretty unknown.
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 (gross, sorry) and I have always harbored stress and emotions in my stomach. So when combined, those two factors seemed to be the culprit of my daily stomach 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. 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?
Part 2: What Next?
Before I even left the hospital I had an appointment with a nutritionist to discuss the nitty-gritty of celiac. She gave me packets and packets of information and went over the “safe” and “harmful” foods. But at that moment, as confused and scared as I was, part of me was kind of excited to begin my gluten-free journey. I wanted to feel better. I wanted to be strong and healthy again. I not of optimal health due to malnutrition and fatigue from eating gluten.
On the way home from the hospital my mom and I stopped at the grocery store and wandered the aisles while referring to the handouts from the nutritionist. I distinctly remember a small (and by small I mean 1 shelf) selection of gluten-free foods. We bought a few cereals, cereal bars, breads and baking ingredients. As soon as we got home it was operation: clean out the pantry. We designated a gluten-free shelf, labeled it and bought a separate toaster for gluten-free bread only. After weeks of trial and error (re: eating food that tasted like cardboard), I found the packaged foods I liked (see “Favorites” for my tried-and-true favorite products).
Immediately after my diagnosis and even to this day, the most difficult part of being gluten-free is eating in social setting. Friends going out to dinner? “Guess I’ll eat before, in case nothing is safe” OR “Guess I’ll have a plain garden salad, dressing on the side.” (Eating out has gotten A LOT easier over the years as more restaurants now offer GF menus). Explaining to the waiter and to people at my table about celiac disease is not always fun. Honestly, it can get awkward and I get tired of repeating my story.
Now, I could ramble on and on about how I’ve “overcome many obstacles and have become a natural at eating gluten-free.” While that’s mostly true, I think the most important thing I can say is that the hard times and awkward situations have been worth it. The way I feel now is worth 1 million awkward conversations at restaurants because I
feel am healthy.
If you ever have any questions, comments or just want to vent about #celiacpains, I’m your girl. Peace, love, GF.