What I Didn’t Know About Celiac

Michael is in New York City for the week meeting up with book publishers, OpenSky, and judging Iron Chef. He asked me to repost Carol Blymire’s Q & A on celiac disease. Look forward to a new post from Michael on Monday. And I am hoping for some off-the-cuff photos for this Friday’s post from him. —Emilia

Originally posted October 19, 2010

The blog world knows Carol Blymire for her cooking her way through The French Laundry Cookbook (which is how I became acquainted with her). She’s now documenting her adventures in avant-garde home cooking in her new blog, Alinea at Home. By day, she’s a communications and public policy consultant in D.C. Day and night, she lives with celiac, a disease that prevents her body from digesting gluten, diagnosed after years of tests for ALS and MS and the like when her dermatologist noticed some rashes and said she probably had celiac. Sources say that 3 million Americans suffer from celiac. One in 4 is genetically predisposed to the disease. No one knows what engages the gear that activates it. Millions are likely undiagnosed. Until Carol went on a rant about what she goes through (I was likely being insensitive), I had no idea what . . . well, more people, chefs especially, ought to know.

Carol, let’s make sure everyone’s clear on this. Having celiac disease, the inability to digest gluten, isn’t like being lactose intolerant. Or is it? I mean, really, how serious is it?

Oh jeez . . . I hope you weren’t hoping to win a Pulitzer for this, because I’m going to have to talk pretty explicitly about “digestive issues.” Can we do that on a food blog?

I take that to mean there’s some rectal enthusiasm involved here?

Here’s what happens when I’m accidentally “glutened”: uncontrollable, painful, explosive diarrhea that comes on quickly with next-to-no warning within 30 minutes of ingesting gluten. So, if I’m glutened in a restaurant, it might hit while I’m still sitting there finishing up my lunch. If I’m lucky enough to make it to the bathroom on time, then I have to hope there’s enough time in between “episodes” to drive home, where this lovely symptom will continue for another 24–36 hours.

Is that it?

Not even close. Over the next 48 to 72 hours, we celiacs also get to experience joint pain, stomach cramps, migraines, dehydration, numbness and tingling in the extremities, insomnia (despite being exhausted from all the butt explosions), and toward the end of it, a foggy-headed serotonin crash where it’s difficult to get out of bed, think clearly, or accomplish even the most basic life skills. Oh, and bumpy skin rashes. Let’s not forget those. So pretty.

Sounds like the hangover I had after my friend Blake left last weekend, something I hope not to repeat.

Getting glutened is really debilitating. If I have a big event, vacation, or important meeting, I have to plan to not eat food other than my own cooking the three days before because I can’t risk being stuck at home, sick from gluten, and miss out whatever it was I needed or wanted to do. And, whenever I eat out (whether at a restaurant or a friend’s house), I make sure I know all the possible places I could stop on the way home in case I get sick.

Why can’t you eat at restaurants and just tell them that you’ve got celiac and can’t eat gluten?

Cross-contamination is probably the biggest risk: you can’t plate someone’s spaghetti à la nero and then plate my food without washing your hands in between. You can’t put a burger on a bun, re-check the ticket and see that I’m no-gluten, and just take the burger off the bun and serve it to me. I can’t eat fries that have been cooked in the same oil as anything battered. If an expediter wipes the rim of a plate with bread on it before serving it, then uses the same towel edge to wipe my plate, then they’ve essentially just wiped my plate with a piece of bread, and I’ll be sick.

So many people lie about having food allergies (“I’m allergic to dairy, so no butter” but they order ice cream for dessert) that some chefs have confessed to me that they don’t take gluten directives seriously. I get it: I used to make fun of people who said they were allergic to wheat because I thought they were being dramatic and annoying.

What can chefs do to improve?

Trust that when someone says “no gluten,” they have celiac and are not just trying the latest fad diet. Learn about gluten because it’s everywhere. And, be extra-careful about cross-contamination—that’s the biggest risk, actually, in restaurant kitchens. You can’t touch bread or something with gluten in it and then touch our food without washing your hands in between. You can’t just do a “whoopsie” and take the burger off the bun and serve it to us.

Having celiac can be really isolating, because it’s safest and healthiest to just cook for yourself. But, I’m a social creature and I love restaurants, so I had to (and still have to) muster the courage to leave the confines of my kitchen and let others cook for me.

What should I do if I’m having someone for dinner who has celiac?

Be patient when the person with celiac asks you about every single ingredient and its origin. Be willing to read the labels of every single thing you put into a dish. Know that we understand how stressful and frustrating it can be to cook for someone with celiac; believe me, we get it, and we love you for making the effort to cook for us.

All of this comes with the gentle reminder to fellow celiacs that it’s in our best interests to call a restaurant a day or two ahead to let them know we can’t eat gluten. It’s kind of dickish to just show up somewhere and expect a restaurant to deal with a major dietary restriction. And, always send a thank-you note or personally thank the manager and chef. It’s not always easy to accommodate people with celiac, so a little thanks goes a long way.

One last question: What’s been your experience when you do find a restaurant that truly understands your condition?

More than once, I’ve actually cried during a meal because it was so good and wasn’t making me sick. A pastry chef here in town sent out a round of all his desserts that he’d made gluten-free. There are a lot of chefs who have gone above and beyond to make sure I’ve been safe—and that there’s nothing in the world that has made me feel more cared for . . . really and truly.

I asked for a recipe to accompany this post, and Carol asked if she could post Shauna and Daniel Ahern’s pizza dough for their new (excellent) book, Gluten-Free Girl and the Chef (it also makes a great cracker or flatbread dough):

Gluten-Free Pizza Dough

Carol loves this recipe because it is not only pizza dough but also doubles as a cracker dough. She topped this one with olive oil, fresh mozzarella, some Woodlands pork ham, and wine-steeped figs. She did another last night for the neighbors with tomato sauce, fresh mozzarella, ricotta, and purple basil.

Makes two 10-inch crusts if you like them thick, 12-inch if you like them thin.

125 grams (1 cup) cornstarch

125 grams (¾ cup plus 2 tablespoons) corn flour

125 grams (¾ cup) potato starch

125 grams (¾ cup) sweet rice flour

1 tablespoon xanthan gum

1 teaspoon guar gum

1½ teaspoons kosher salt

375 grams (1¾ cup) warm water, about 110°F/43°C.

50 grams (¼ cup) extra-virgin olive oil, plus extra for brushing

15 grams (4 teaspoons) active dry yeast

gluten-free cornmeal for sprinkling on pan (not all are gluten-free due to manufacturing practices)

Combining the dry ingredients: Sift cornstarch, corn flour, potato starch, and sweet rice flour into large bowl. Add xanthan gum, guar gum, and salt. Sift mixture into bowl of stand mixer. Activating the yeast: Combine warm water, olive oil, and yeast in small bowl. Stir gently. Let rest for a minute. Making the dough: Pour yeasty water into dry ingredients. Mix at medium speed (using the dough hook attachment) for 2 minutes, until dough comes together and feels soft and pliable. Set dough aside in a warm place and let rise for 1 hour. Preparing to bake: Preheat the oven to 550°F/288°C (or as hot as your oven will go). If you have a pizza stone, put it in the oven now. Sprinkle a pizza tray or baking sheet with cornmeal. Rolling out the dough: Cut the dough ball in half. Put one of the balls of dough between 2 pieces of parchment paper. Through the paper, roll out the dough as thin as you can make it. Prebaking the crust: Carefully transfer dough onto the pizza pan. Brush dough with olive oil. Bake until the dough feels firm and when you lift it off the pan, it will hold its shape, about 7 minutes. Take the crust out of the oven and top it as you wish. You can make the second crust immediately (and really, you probably will). Or, you can put it in the refrigerator and have pizza again the next day.

A few other gluten-free sites, besides Shauna’s:

Gluten Free Easily, by Shirley Braden

Wasabimon, by Stephanie Stiavetti

And by a teenager, Lauren McMillan, diagnosed with celiac, Celiac Teen.

If you liked this post on What I Didn’t Know About Celiac, check out these other links:

© 2012 Michael Ruhlman. Photo © 2012 Donna Turner Ruhlman. All rights reserved.