For the last four years, I’ve been tortured by dreams.
Dreams about croissants, French bread, NY-style pizza, bagels and cream cheese. Dreams about ravioli, gnocchi, lasagna, and pierogis. Dreams about pie crust and pop-tarts.
Dreams about gluten.
Gluten is a miracle protein – it’s what makes our carbs so damn delicious. Its taste and texture are irreplaceable. If you have ever eaten a real, bagel-shop bagel, you have experienced the miracle of gluten. If you don’t believe me, go try a gluten-free “bagel.” You’ll never doubt again.
Gluten can also kill people. For those of us with celiac disease, gluten triggers an autoimmune reaction that releases aggressive antibodies. These antibodies are powerful, but not very smart: instead of attacking the trigger, they attack and destroy the lining of the small intestine. And since it’s the lining of the small intestine that absorbs nutrients – you know, the stuff that keeps people alive – gluten can make some of us very, very sick.
Four years ago, before my haunting dreams began, I made a bold announcement on Facebook. During the height of the gluten-free food fad, when it seemed like everyone I knew was giving up gluten, I declared for all my friends to see that nothing could ever make me stop eating gluten.
I loved gluten. I grew up being fed by Italian and Polish grandmothers. We’re talking homemade ravioli, gnocchi, and bow-tie pasta. Potato pancakes and pierogis. Bread – all of the bread. As a kid, I’d eat a loaf of Wonderbread – plain.
It wasn’t the wheat I loved – it was the gluten. It was what made all my favorite foods so good and I refused to believe that there could be any medical necessity to force me to stop eating it.
Even though I’d had stomach problems my entire life.
Even though none of the medical interventions of the previous 15 years had done anything to help them.
Even though I was kind of convinced that I had cancer because my guts were bleeding. A lot.
Shortly after I posted my heady declaration of gluten-love on Facebook, I went in for my third combined endoscopy/colonoscopy. In case you were wondering, that’s when they stick cameras in both ends to take pictures of your insides. It’s a barrel of laughs. Especially the preparation part, which almost certainly would have made it at least as far as the seventh circle of Hell if Dante had lived in modern times.
At this point, the results of that test are probably obvious: I have celiac. Gluten was, and continues to be, my enemy.
Giving it up was hard. It still is hard. There are times when I long for a piece of warm, crusty, yeasty French bread like a drowning man longs for oxygen.
I knew giving up gluten would be hard, but what I didn’t realize was that something else would be even harder – self-advocacy. When you have a food allergy or intolerance, it’s up to you to make sure you don’t get sick. You have to constantly ask about ingredients and how things are made.
You become the annoying person who grills servers at restaurants about whether or not the fries are fried in the same grease as the chicken tenders. You become the person at the party who doesn’t eat anything or who peppers their host with questions about what *exactly* is in that salad dressing. You become the person who hovers over the single gluten free dish at potluck parties just to make sure no one contaminates it with a bread crumb.
And it’s even more awkward when you factor in the eye-rolling. Because gluten-free eating became such a trend, when you say you are gluten-free people assume you are just avoiding carbs to lose weight or “feel better.” I feel like I have to carry around wallet-sized pictures of my damaged guts as evidence that my dietary hypervigilance is necessary.
People also have a hard time understanding your deep-seated fear of cross contamination. And I get it – the idea that a crumb of bread can trigger a reaction sounds far-fetched. But it isn’t.
Last year, I had two experiences of “accidental glutening” within a six-month period. Both times were because of cross contamination. In one case, it was the seasoning on fries – the mixture contained a minuscule amount of flour, and the following week was agony.
During those six months, I lost some of my hair and most of my energy. I lost weight. A lot of it. People noticed. My delightful brother called me Skeletor. Others complimented me. It took all my willpower not to tell them that I was on a special diet called malabsorption, or, as I prefer to think of it, crapping out the calories. That as soon as my guts healed, I’d gain it all back, and then some, because that’s how the universe works.
It’s not a diet I’d recommend, unless you plan to purchase real estate in the public restroom market.
The moral of the story is this: celiac disease and gluten intolerance are real. Both can seriously damage a body. So when you’re with a friend at a restaurant, and she’s treating the server to the gluten inquisition, try not to roll your eyes. She’s not trying to be annoying. She’s not enjoying herself. In fact, she’s hoping against hope that the server doesn’t spit in her food. But she has to do it, because otherwise she might eat a molecule of gluten and be sick and balding for the next month.
3 thoughts on “Celiac Dreams”
Oh wow! Thanks for posting this.
It’s the fact that it’s become a fad with so many people. It diminishes the severity of the disease for the few that have it. It’s sad, really, and the 1 child(teenager) that I know who has celiac disease misses out on a lot of activities because she is just so sensitive to gluten. Group dinners revolve around places that have gluten free menu items and even then, she occasionally gets sick because of cross contamination. I don’t know why so many people feel they have to jump on a bandwagon to feel special? If they really had celiac, they would know that they can’t have certain condiments like soy sauce, some ketchups/mustards, salad dressings or cheap hot dogs or anything that contains “fillers”. I don’t have it, yet it ticks me off when I hear someone go on and on about their “intolerance” and then I see what they order or what they have in their shopping cart and it has…..gluten.
Yes! It’s so frustrating. And I really feel for kids and teens who have it. It’s so hard to be different at that age, and it’s even harder to say no to foods in social situations when you are young. Especially when you just want to be part of the crowd!