My Celiac Diagnosis: As If Diabetes Wasn’t Enough

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“I can pretty much eat whatever I want.”

For many years of my diabetes career, this was the phrase that kept me going. (Well, this and “Just five more years until a cure.”)

Well-meaning folks would ask, “should you be eating that?” and I’d throw back my head, mouth full of cake or ice cream – or both – to laugh in their misinformed faces. Diabetes is a never-ending chore, but the reward for all of that calculating and bolusing, the measuring and the machines taped to my body, had always been a small measure of culinary freedom. “I can pretty much eat whatever I want,” I’d say, and go back to shoving a croissant sandwich into my face.

It was nice while it lasted. But then diabetes’ snot-nosed little brother showed up to blow that notion to bits. Celiac disease entered my life – officially – on December 16, 2015. I’m not a fan.

I’m learning what it’s like to meet a lifestyle-altering condition in mid-life, and have a new appreciation for my fellow PWDs who’ve had to dive into the weird routines of diabetes care at 20, 30, 40 or older. After living with Type 1 for 25 years, I’m used to all the diabetes stuff, even if I don’t like it. Diabetes is something I’ve learned to work with – or around – in a slew of different circumstances. But now I have a new set of constraints to work within, and I don’t know the shortcuts – and I’m afraid that might be because there are none.

In my blissful ignorance, I’d always thought that living with Celiac disease meant staying away from pasta, bread, and some fried/breaded stuff. Now I know that gluten is an insidious evil that is nearly impossible to escape. You can find it in soy sauce. Oats. Malt vinegar. Bloody Mary mix. Tater tots fried in the same oil as breaded chicken fingers. Lunchmeats. Advil Liqui-Gels. Some sauces and condiments, but not all. Communion wafers. Gluten-free pasta that was boiled in a pot that was just used to boil regular pasta. My favorite lip gloss. Things I’ve never had interest in eating but now crave, because danger is so delicious.

And while my options for eating out at restaurants are more limited, my tendency for self-pity is not. All it takes is a stroll past a person enjoying a sandwich or a normal beer, and I spiral into an irrational mixture of despair, rage and hunger. I find myself flipping through the channels on a weeknight, landing on a new episode of Chopped, and thinking, “Now I’ll never be able to judge a sadistic cooking show on national television! Thanks a lot, immune system!” (So sad, because that was such a strong possibility.)

To make this journey a little more uncertain, I’m one of the weird celiac people who don’t have much going on in the way of symptoms. I didn’t have aches, or rashes, or nightmarish digestive symptoms. Looking back, I see that I was dealing with some brain fog and fatigue, but I figured that was normal for a PWD with a full-time job and a three-year-old at home. My extra-sneaky celiac disease was diagnosed after a series of blood tests showed that I was lacking the kinds of nutrients that should be in your body if you’re actually absorbing the food you eat. Two blood tests and a biopsy later, it was all confirmed, and all I really had was a list of foods and ingredients to avoid.

“This is going to be hard, and I’m sorry I don’t have more to help you,” my doctor said. “But the good news is, there are treatments in the works, and we could see something on the market in as soon as a few years.” (I’m not even kidding.)

So I’m doing my best. Except for a few things my daughter eats, we’re mostly gluten-free at our house. I’m mustering up the courage to ask the folks at Chipotle to change their gloves before they make my salad, and I’m learning to beat back the dramatic spikes in my blood sugar that some GF-foods cause. I’m trying to focus on things that are naturally gluten-free – say, avocados – and rehearsing a new script in my head when it comes to the emotions of eating and illness and control. The problem is that celiac disease doesn’t come with test strips or meters. I can’t see how my body is reacting to the restaurant meal I had four hours ago, and I can’t inject an anti-gluten substance into myself to counteract a slip-up or a miscalculation.

I’ve found that Type 1 diabetes and celiac disease do have more in common than their auto-immune roots, though. The management of both is made much less painful by people who chime in with “me too,” or “how can I help?” I’ve been surprised at parties by spreads of gluten-free crackers and fancy cheese, or a friend who recreates my favorite gluten-y restaurant meal without the flour. My husband took a break from brewing beer to whip up some batches of low-carb cider. And just last night, a new friend and fellow celiac lady joined me for dinner at a neighborhood joint that I didn’t even know had gluten-free food.

I know I’ll get through this, and I know my little village will help me. I’m discovering more gluten-free foods to enjoy, and would love to get one of those little testing doo-hickeys that you can put your food into for gluten detection purposes. And I’m pitching a new show to the Food Network – Chopped: The Celiac Challenge. I plan on being the head judge.

 

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