What It’s Like Living with Celiac Disease
Moments from a life in which gluten is poisonous.
The first thing I remember after waking up from my endoscopy was a nurse asking if I wanted water. I gleefully said yes. She could have been asking if I wanted a hundred free puppies, that’s how happy I was. Since I had been asked to fast for this procedure, I was pretty much dehydrated.
As I started sipping the water through a straw, the doctor came in. Upon seeing that I was awake, he assumed that was the perfect time to show me the pictures he and his team had just taken with the tiny camera they’d snaked down my throat and into my stomach. He showed me an image of some brownish-pink tissue that was all wrinkled and said, “See that? That shouldn’t look like that. That means you have celiac disease.”
I didn’t have the energy to tell him a sarcastic thank you. I could barely stand the way my stomach looked on the outside; I sure as hell didn’t need to see the inside. I made sure my mother kept those pictures in a place I would never find them.
Celiac disease is an autoimmune disorder that affects the villi, the hair-like protrusions in the small intestine that are responsible for absorbing nutrients from the foods and drinks you consume. Every time I eat or drink gluten, my own immune system attacks those villi as if they are a foreign object.
If I continue to consume gluten, eventually the villi won't be able to absorb nutrients, and I will become malnourished. What an awfully ironic way for an overweight person to die.
I was catching up with old friends at a burger joint. I had only agreed to go because I had done my usual research on the restaurant to discover if they had options I could eat. When I discovered that this place offered gluten-free buns for their burgers, I gave my friends the go-ahead to meet there.
I ordered a standard burger and fries, the only difference being the gluten-free buns.
My waitress started twirling a strand of hair around her finger. “So, like, do you want just the buns to be gluten-free, or the patty too? What about the fries?”
I sighed.
On my last day of an internship at a nonprofit, my coworkers took me out to eat at a different burger place, this one famous for their gluten-free buns.
When we ordered, I was, of course, the only one who asked for gluten-free buns on my burger. The server asked, with complete sincerity, whether it was due to allergies or personal preference. I said allergies, even though celiac is a little different. The end result is basically the same, though. Wheat is still poisonous.
My burger was delicious, although my boss said he ended up paying an extra dollar for my gluten-free buns.
“Gee, thanks, Ellie.” His voice dripped with sarcasm. “I have to pay extra money because you have a life-threatening illness.”
I smiled but didn’t bother to mention that celiac isn’t really life-threatening. At least, not immediately.
When I worked at a Dollar Tree, my manager once suggested ordering a pizza for everyone. I chimed in that I can’t have pizza crust since it contains gluten.
“You can just eat the cheese off the top, can’t you?” she asked.
I considered it. “I suppose I can.”
So I did just that.
“Geez,” another coworker said, watching me. “I don’t know how you live without gluten. I wouldn’t be strong enough to do that.”
I didn’t bother to point out that it’s not a question of willpower. It’s a matter of necessity.
All throughout college, fellow students would try to get me to join their clubs, their Bible studies. Since I was painfully introverted and suffered from serious social anxiety at the time, I always said no.
“Come on,” they’d say. “We’re giving out free t-shirts.”
As tempting as the idea of getting a free shirt was (especially back then when I almost exclusively wore t-shirts), I always said no.
“There’ll be free pizza,” they’d say.
I always politely declined, not bothering to mention that pizza, even when it was free, no longer worked as an incentive for me.
I’m a bit torn about the rise of gluten-free versions of normally glutinous foods. On one hand, I’m glad that I can enjoy pasta, bread, and cookies again, even if they don’t quite taste the same.
On the other hand, it sort of delegitimizes my struggle. Every time I ask for a gluten-free dish at a restaurant, I can physically feel my server judging me as if I were one of those self-righteous uber-vegans who demand that everything they eat be raised with zero cruelty. It’s not that I’m against that cause, but it just isn’t who I am.
Pretty much every time I tell someone that I can’t ingest gluten, I feel their pity and their judgment all at once. They feel sorry for me, yet they still act as if my condition is a choice. I can assure you that absolutely no one would choose to live this way if that were the case.
When people with celiac eat gluten, it can result in a plethora of unpleasant symptoms. It can cause the typical stomach problems that you might expect, like diarrhea and vomiting. But untreated, celiac disease can also manifest in other ways, like seizures, tooth discoloration, loss of tooth enamel (which may explain why I have such awful teeth), fatigue, irregular periods, and even infertility and miscarriage.
I know that whenever I eat gluten, I not only develop intense stomach pains, but I also feel incredibly lethargic. Not to mention, my blood sugar skyrockets since I also have type 1 diabetes, exacerbating my fatigue.
Since the condition is hereditary, I don’t plan on having children, at least not biologically. I don’t want to bring a kid into this world who can’t enjoy some of the best foods the world has to offer. I don’t want them to go hungry at class pizza parties or experience any of the myriad hellish symptoms that could develop if they accidentally eat even a crumb of bread.
Like I said earlier, I’m glad that gluten-free dishes exist these days. People have told me that those options weren’t there thirty years ago. Had I been born back then, I would have had to pretty much only eat things like grilled meat, fruits, and vegetables.
Of course, that’s a large part of my diet today. Still, it’s nice to treat myself to some gluten-free pasta every once in a while, to let myself temporarily believe the delusion that I live a normal life.
But of course, I don’t.
In short, life with celiac disease is hell. At least, it is for me.
I have to live every day resisting the temptation to eat delicious glutinous foods and suffer the consequences. Most of the time, I succeed. Sometimes, though, I don’t, and I have to deal with the knowledge that my small intestine was just permanently damaged by my lack of self-control.
However, I’m getting better at sticking to a gluten-free diet. It has been almost five years since I was diagnosed, and it feels like the new normal now. That doesn’t mean that it’s easy; it sure as hell isn’t. But as long as I just take it one day at a time, I can get through it.
