Where I’ve Been: Celiac and the Switch to Gluten-Free

When I wrote my last post in January of 2012, I had no idea what was coming. It seems a little coincidental that I wrote about bread back then. I can’t eat that anymore, or at least not in the same way that most people can.

In Florence, Italy

In Florence, Italy

The last year has been hard — wonderful in some ways (I visited Italy for an amazing six weeks last summer, started interning at Texas Monthly, became Co-Editor-in-Chief of a literary journal, started a new relationship, and will be graduating from UT in May) but trying in others  (realized that I want to make enough money to travel, started interning at Texas Monthly, became Co-Editor-in-Chief of a literary journal, started a new relationship, and will be graduating from UT in May).

And then, I was officially diagnosed with celiac disease about a month ago.

This post was hard for me to write. I hope that reading this is helpful for someone else with celiac, as the stories I’ve found on others’ blogs have been for me. At the very least, I hope it explains some of the things that, in my frustration and fear, I may not have adequately explained to my friends in the past couple of months.

My symptoms started last July, when I got back from Italy. For years, I’ve been told I have a “nervous stomach,” so I chalked up the nausea and cramps to jet lag, then to anxiety about living alone for the first time, then to anxiety about the future, and so on. I really recognized something was wrong at an outdoor performance of The Sound of Music in Zilker Park. While nibbling on sandwiches from Panera with several friends who I hadn’t seen in a while, I started to feel a little dizzy. By the end of the performance, my stomach was clenching horribly. I passed out on my bed as soon as we got home, even though I very much wanted to join the excited reunion between my high school friends in the next room. The following morning, I was convinced it had just been the heat, but my friends convinced me to see a doctor.

The lovely results of the doctor’s various tests? I’d picked up some sort of mild, waterborne parasite in Italy. Fantastic. Not exactly the kind of travel adventure story I was hoping for — “Do you have tapeworm?!”  (No.) “Are you contagious?!” (Also no.) “Oh my god I’m never going to Italy!!” (Buck up, darling, you should.)

I still felt wrong after a course of antibiotics, and I noticed that I mostly felt sick after eating. Where I had once loved creating new recipes and trying new restaurants, I started to fear food. I couldn’t figure out what would make me sick and what wouldn’t. By November, I had started to feel so unwell that I could barely concentrate. I couldn’t go to class and work regularly because of the pain in my stomach. At one point my work hours actually got cut, because I kept missing and couldn’t make up the time quickly enough. On the days when my stomach didn’t hurt, which were few, I still felt like I was in a haze and had no energy. I wondered if I had ADHD. At one point, my symptoms were severe enough that I thought I had cancer.

A conversation with a professor who had recently been diagnosed with celiac left me relieved and terrified. Her symptoms matched mine. I got blood tests over Christmas break that showed a gluten intolerance, and last month’s endoscopy results confirmed that I have celiac disease.

So what does having celiac mean? This autoimmune disease has been a lot more prevalent in the news lately, so most people now understand that gluten means wheat, barley, and rye. No normal bread or pasta, no cake, no highly-processed foods (many preservatives are actually gluten). On the most basic level, when a person with celiac eats gluten, the villi in her stomach are damaged, blocking the absorption of vital nutrients. This leads to malnutrition, and, if left untreated, celiac can cause chronic pain, IBS, myriad autoimmune disorders and sometimes even cancer. Gluten intolerance is different from celiac, but can be just as severe.

Celiac is genetic, and I’m fairly certain that my grandmother had undiagnosed celiac, along with lupus and many other unexplained health problems. At the end of her life, I remember her telling me that the only thing she felt like eating was maple-flavored yogurt. It grieves me to think that she suffered simply because she lived in a different time. When she was diagnosed with lupus, doctors had even less of an understanding of celiac, and I doubt any would have thought to recommend a gluten-free diet. And the only way to treat celiac is by following a strict, gluten-free diet for the rest of your life.

For the rest of my life.

Ay, there’s the rub.

I’m lucky, really. I’ve been told that many people aren’t diagnosed with celiac until 12 to 15 years after the onset of more serious symptoms. In my case, I had mild, almost unrecognizable stomach problems for most of my life, up until the parasite triggered the full-on fury of the disease. Though my GI doctor says that my intestines show evidence of chronic damage, I only felt non-functional for about six months before I was diagnosed.

I’m also lucky because if there was ever a “good time” to have celiac, it’s now. Celiac awareness is growing, the gluten-free diet is actually pretty trendy, and I’m in the best city in the world for g-free — Austin, TX. I’ve got an entire Central Market aisle dedicated to my diet, g-free labels at Wheatsville Co-op, god-sent g-free red velvet cupcakes at Delish, and the entirely g-free restaurant/mecca Wild Wood Bakehouse only fifteen minutes from my apartment.

But for the rest of my life.

From my senior photo shoot this month. Courtesy of Amanda Martin Photography.

From my senior photo shoot this month. Courtesy of Amanda Martin Photography.

It’s only been about  three months of g-free, and usually, I look and feel much better. But I’d kill for a can of Pringles. I could cheat, I suppose. I probably will, at some point. But I accidentally ate two bites of a gluten-containing side at Trudy’s a few weeks ago, and I was out for a full day. So maybe I won’t.

I’m saddest about how the way I travel will need to change. No pain au chocolat à Paris for me, unless it’s specially made. Most of my favorite travel and family memories are food-related — those moments of pure joy when you discover a completely unexpected favorite or find a famous restaurant and spend the afternoon trying new things with loved ones. Spinach and ricotta pizza at Reading Terminal Market in Philadelphia. Pasta primavera with a shaved fennel salad in New York City. Thick, crusty slices of white bread sopping up the best balsamic and olive oil in Tuscany.

Now I think about those meals, and instead my brain says, “Spinach and ricotta gluten. Gluten primavera. Thick, crusty slices of gluten.”

And I know — I know — that I can still find joy in food. My first gluten-free meal in Austin was at ASTI. I wolfed down the entire bowl of butternut squash risotto before my boyfriend was even halfway through his meal (and if you know me, you’ll know that I’m the slowest eater on the planet.) That was most definitely a joyful meal. And I’ve certainly become more grateful for my food, and the chefs and friends who have done their best to ensure that what I eat won’t make me sick. But I feel like that spontaneity I used to love is lost. If I ever want to travel outside of the US again, I’ll have to rigorously plan an eating itinerary, pack some of my own food, and learn how to say “do you have gluten-free options?” in many different languages. On a weekly or even daily basis, all of this attention and talking can be a bit of a nightmare, especially for someone liked me who is a learned and not a natural extrovert. I have to call new restaurants ahead to make sure they understand the risks of cross-contamination. I have to be that person who asks the waiter a million questions. I have to be extremely careful about restaurants that serve ethnic dishes, because the waitstaff can’t necessarily read the non-English label on authentic food items to tell me if their food is really gluten-free. I have to be the deciding vote on where we go to dinner, because my friends are too sweet to let me go anywhere that doesn’t have a designated gluten-free menu.

That’s been the blessing out of all of this, really — I’ve seen such love from my friends, and even strangers (specifically the waiters who put up with my twenty-questions game and send me complimentary gluten-free appetizers when I can’t join in on the bread basket.) All of them have tried their hardest to accommodate my new needs. Sometimes I feel a huge sense of shame. I’m not the type who wants to be the center of attention, but maybe all of this will finally help me grow comfortable with being in the spotlight and standing up for myself and what I need. Everything happens for a reason.

Right?

It may still be a little while before I post new recipes here. I’m still trying to figure out how to get adequate nutrients in my diet since I can’t eat enriched grains anymore. Plus, the very notion that I’m limited has made me apprehensive about cooking for myself, even though I know it’s probably the safest way to avoid gluten. When I do post new recipes, I may delete the old recipes, or at least label them clearly as gluten-containing so that readers aren’t confused.

So for now, bear with me. I’ll find the joy again. I’ll just need some time.

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4 thoughts on “Where I’ve Been: Celiac and the Switch to Gluten-Free

  1. I love reading this post very much. Thanks for sharing this because otherwise I wouldn’t know there are so many other troubles that a restricted diet can cause besides just having deal with the craving. I’m sorry you are diagnosed with celiac but I also admire your self-motivation and positive attitudes. You’ll be fine 🙂

  2. Jordan, that was a lovely, well-written piece. Sorry for your struggles. I have to agree with you that you can be grateful on the timing. In 1993 my mother-in-law was diagnosed with celiac. Back then no one really knew the condition existed and now you hear about gluten-free on a regular basis. Best wishes on your discovery of joy in cooking again!

  3. Just read this. Really lovely piece. Thank you for sharing!
    It may take some time, but you will find joy in food again. My mother and I were both diagnosed as “gluten-sensitive” a few years ago, and at the time, she was devastated. She’s an amazing cook and food had always been one of the main ways she was able to create/share her talents with other people, so I think she was really afraid that her allergy was going to take that away. As a result, she essentially took what most people would’ve seen as an enormous roadblock and used it as a catalyst to think more creatively about food. She found ways to alter recipes she already had, made up new ones, and did quite a bit of research for gluten free cooking websites, all so she wouldn’t have to give up cooking. The result? She’s been able to continue sharing her food with other people, only now she’s actually able to cook for a wider audience. You’re absolutely right that there really isn’t a “better” time to be gluten free. There are so many options that have surfaced in the last few years, not only restaurants, but alternative flour mixes, sauces, breads, pastas, and other products. And one of the best things about the increased awareness of gluten intolerance is that there are so many amazing chefs and creative individuals, like you and like my mom, who have used their love of cooking as a way to not only connect with people, but to also remind others with gluten issues of the joys of food.

    Bottom line: Celiac and gluten intolerance can be limiting, but they can also act as a catalyst for greater creativity and as an opportunity to connect with and help others who may have forgotten how to enjoy and appreciate food.

    So thank you for sharing and for reminding all of us with allergy issues that food does not have to be a source of fear. Keep cooking! 🙂

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