After putting some thought into it, I’ve determined I’m the face of celiac disease.
And so are you (if you have celiac disease, of course).
My point is, celiac disease has many faces. You can’t look at someone and tell they have celiac disease, which can be a blessing or a curse. Sometimes, if people can’t see your disease, its not real to them.
This past weekend, I went out with my girlfriends and ordered gluten-free cider. My friend ordered beer. You can probably see where I’m going with this story.
The waitress set our nearly identical drinks in front of us saying “Here’s the cider. Here’s the beer.”
Without a second thought I grabbed my drink and took a big swig (I was thirsty). The waitress was still at the table when a sense of panic hit me. “This is beer,” I said.
My friends knew I wasn’t just complaining because I don’t like the taste of beer, but the waitress had no idea what she had just done. I don’t blame her. We were just ordering drinks, so I didn’t mention being gluten-free beforehand.
For the first time in over three years (my entire gluten-free life), I knowingly had gluten.
I must admit, I’ve been curious what my reaction to gluten would be since eliminating it from my diet entirely. I’ve even considered eating something with gluten just to know for sure how my body reacts. However, I never could do it. I’ve trained myself to avoid gluten so well that the thought is unappealing.
Before I went gluten-free, I had many symptoms, but none of them where what people often attribute with celiac disease. I never had terrible stomach issues, so I’ve been curious if my reaction has changed now that I’ve cut gluten from my diet.
Of course, since going gluten-free I’ve felt I’ve been glutened a time or two. However, I was never sure. I couldn’t tell if my stomach was just upset or bloated, if I was just tired, if my acne was just from stress, or if it was my disease.
This time I was sure. I drank gluteny beer. It was plain as day.
So … I waited for the reaction.
About 10 minutes in, I felt my stomach bloating. About 20 minutes in, brain fog hit. Not too long after that, my stomach started hurting. I didn’t feel terribly nauseous or have to run to the bathroom. It felt more like stomach craps and gurgling.
The days following my accidental glutening have been spent with bloating, headaches, fatigue and stomach pain. Still, three days later, all I really feel like doing is curling up in a ball on the couch.
I must admit, I was both relieved and disappointed by my reaction to gluten. I was relieved gluten doesn’t make me visibly ill.
But you might wonder why I was disappointed.
I sort of hoped I could tell people who ask me what happens when I eat gluten that I throw up everywhere, so don’t test me, but I can’t. It would be a safety net reminding those around me to be careful. No one wants to be the person to make me throw up because they fed me gluten.
Instead, I experience symptoms I can hide (and I often do) to avoid making anyone feel bad for making me sick. I’m disappointed in myself for allowing this to happen.
All in all, this experience has taught me it’s important to recognize celiac disease doesn’t have one face or one set of symptoms. There are lots of faces. No matter the reaction on the outside, the impact gluten has on celiacs on the inside is extremely damaging to the small intestine.
It’s hard to spread celiac and gluten-free awareness when it has so many different faces, but together we can do it.
Sharing your unique story with those around you is a great place to start. What symptoms do you experience when you eat gluten?
For a full list of celiac disease symptoms, visit the Celiac Disease Foundation’s webpage.