This afternoon, a fellow writer and food-lover friend spotted something on the menu I might like. A crispy duck salad with green lentils, red cabbage, winter pears, and some kind of creamy vinaigrette. Before I could even coo over the idea of it, Jess looked up at the waiter and said, “Does have that any kind of bread in it? Or any kind of wheat at all?”
I thought for a moment that she was trying to go gluten-free. Later, I realized she was simply asking for me. (And every time someone takes care of me, I love that person more.) The waiter said, “I don’t believe so, but I’ll check.”
Before I left, I said, “I think I’d want one of those too, but it can’t have even a speck of wheat in it.” (Looking at the description of the dish, I wasn’t worried about rye or barley.)
“Oh,” he said, a smile lighting up his face. “I’m learning all about this. My mom has to do that too!”
“Celiac?” I said, as I looked up at him.
“Yes!” he seemed excited that someone knew what his mother is suffering.
“Me too. How long?”
“Just a month. She’s having a hard time.” His face naturally shadowed with sadness.
I pulled out my wallet, fished out my business card, and said, “Hey listen, I write a website all about this, and I have a book. If you think it will help your mom, give her this.”
He seemed genuinely thrilled. In fact, he thanked me several times throughout the meal. As he left, I looked at Jess, a bit sheepish I had just promoted my work like that. But she put me at ease immediately. “Changing one life at a time, eh?”
That’s what it feels like sometimes.
(And by the way, Cafe Presse, where we had lunch, is one of my favorite spots in Seattle for lunch. Great food, fresh ingredients, a French feel. That salad was simply transcendent. I’ve eaten at Presse many times, and every waiter has understood the gluten dilemma. Plus, they make incredible pommes frites, and they only fry those in the oil in the kitchen. No cross-contamination. I may not have experienced any cliché pregnancy cravings, but this baby seems to love Presse pomme frites with fresh aioli.)
I’m amazed, every day, at how deeply we affect each other, and we often don’t know it.
Every time those of us who are gluten-free speak up and sing out our story (instead of silently sulking), we’re changing people’s minds.
I like to joke, these days, that part of my job is talk about my intestines in public. (“What happens when you have any gluten by mistake?” someone asks me, and I start into the descriptions.) I’m not complaining. It’s a hilarious gig. And I have always thrived on absurdity. But most of us aren’t that thrilled with disclosing the details of our “disease” in public. Some elect to stay home instead.
By the way, I have to interrupt myself: I rarely say that I have celiac disease. I don’t have a disease. This is simply the way my body was built, imprinted in my DNA long before I was born. The same may be true for Little Bean, and this baby is still four months from coming into the world. If you define yourself by disease, you might not want to talk about what happens to you if the chefs slip and give you some breadcrumbs by mistake. But me? I explain, in clear terms, because this is simply who I am, and I want to be well.
When I talk about gluten and what will happen when I get some, I never know who might be listening.
Several months ago, in O’Hare airport, in the security line, I started talking to an older gentleman from Georgia. We bantered about something, and he asked me what I did for a living. When I told him about my writing, and the book I had just been in town to promote, his eyes went wide. Turns out he was one of the nation’s leading diabetes educators, and he had been wanting to learn more about living gluten-free. Maybe he bought my book. Maybe someone else who needed the story found out about it from him.
Look, I know how lucky I am. After a lifetime of dreaming about it, I was offered a book deal. When I look over at the copy of my book sitting on the mantelpiece of our fireplace, I want to giggle. But that’s not the point.
We can all do this. Those of you who are gluten-free, have you noticed how much more widely discussed this is these days than three years ago? When I explain my work now, to someone in grocery stores or airplanes, someone always says, “Oh, I know someone with that.” If someone else is next to you, in the aisle with the gluten-free flours, looking puzzled? Strike up a conversation. Maybe you’ll spark someone to create a truly great gluten-free bread. (And then ask for the recipe.)
To quote, in part, Robert Kennedy: “Each time a person…acts to improve the lot of others…(s)he sends forth a tiny ripple of hope, and crossing each other from a million different centers of energy and daring, those ripples can build a current that can sweep down the mightiest walls of oppression and resistance.”
In other words? Maybe some day each person in this country with celiac can be well. (And eat something like that crispy duck and lentil salad. As Jess said, as we were desperately trying to find any shreds of crispy duck skin still clinging to the bone, “Oh my god, I want to eat my fingers.”)
Changing lives one person at a time. It may be the only way anything happens.
It’s even better when it’s someone you love.
Our friends Nina and Booth had us over to their lovely home for dinner the other night. The Chef loves it when other people cook for him, so he can sit back and relax. But what made me happier still is that, sitting in their kitchen, I knew I didn’t have to explain anything about how to make food for me safely.
You see, the two of them have a gluten-free kitchen now too.
Nina and I met through our dear friend Judy. The two of them went to elementary school together, grew up together, and have stayed friends through every tumultuous and glorious year. Judy was actually the director for my Food Network spot, and she became my friend as soon as we were done shooting. When she came to Seattle last year, to film more spots, she introduced me and the Chef to Nina and Booth. Kismet.
Nina and I started rollerblading around Greenlake in the burgeoning spring air. We talked fast, with our hands (thank goodness we had balance in our bodies) about writing, options for films, translating memories into words, and editors. You see, Nina is a fabulously talented children’s book author. (Little Bean will be the proud owner of all of Nina’s books.) We spoke each other’s language, without need for translation, immediately.
And of course, we talked about food. We never stopped talking about food.
Booth, her husband, had once run a seafood exporting business, bringing Pacific Northwest fish to Japan. Together, they had run a successful coffee company in Atlanta, before that. Nina and Booth know all the best places to find exquisite bites of food, and they were generous in sharing names.
(Some of you who have been reading for awhile might also recognize them as our friends who live half the week on The Island, which we love.)
Soon after we met, Nina started reading this site. Booth did too.
And yet, it took us all at least six months before we realized: “Wait a second. Does Booth have celiac too?”
One day, as we sat in the coffee shop near my old home, I listened as Nina talked about how horrible Booth was feeling. Starting somewhere in the fall, after a long, arduous solo backpacking trip, he had started to descend. Terrible lethargy, headaches, sleepless nights, and this awful aching feeling in his feet. Soon, he could no longer ride his bike. He had been to doctors, who wanted to diagnose him with gout, or thought he had some form of arthritis. When the strange rash appeared, the doctors tried to give him salves for that.
Each one was addressing the individual symptoms. No one looked beneath it to see if they were all connected.
I had been hearing about and witnessing Booth’s pain, and his understandable struggle with this. No one seemed to understand.
Why did it take me nearly four months to ask, “Wait, does he have any digestive troubles?” (You see? I talk about intestines.)
I’ll leave Booth’s personal bathroom issues alone. He’s not writing this piece. But I will say this: what Nina told me confirmed the idea that had been sparked.
Let’s see. He’s Irish. He spends a lot of time in the bathroom, always has. He loves beer, but it makes him kind of sleepy. He can’t sleep through the night, uninterrupted. Headaches. Sudden onset of pain and a terrible rash after a traumatic event….
“Nina, I think he might have celiac. Have him tested.”
She read more about it. (Fans of this site, they never thought it had pertained to them.) Booth did too. They went to the doctor.
And the doctor did the blood test, misread it, said he showed a “weak positive” and congratulated him on not having celiac. Disappointed at not having a diagnosis, he went gluten-free for a week anyway.
The next week, I met Nina and Booth at the grocery store in Ballard. Booth’s eyes were wide open, light for the first time in months. His skin looked clear. He stood up straighter. And Nina looked happier with him than I had seen in a long time.
I glowed. As we slowly walked through the grocery store, I pointed out the places where gluten can hide, and suggested some cereals and flours. But mostly, I found myself beaming. That I could help my friend find health? Better than a book deal.
Booth had started sleeping through the night. He hadn’t taken any ibuprofen in 24 hours, after months of guzzling them down every four hours. Clearly, he felt better.
His rash didn’t go away, though. In fact, it flared even stronger after a few weeks. It nuzzled into vulnerable places and itched so ferociously that he could barely sleep at night. One night, in desperation, he drove to the emergency room. The doctor there took one look at him, listened to his story, and examined his rash. “You have celiac,” he said. “This is dermatitis herpatiformis.”
Finally, a diagnosis.
Booth still struggles. The rash hasn’t disappeared completely. (For those of you reading with DH, how long did it take you to stop suffering with it?) He still wonders, sometimes, if he really does have this. How could he have lived as long as he did and not known this was his body?
That was my question when I was diagnosed as well.
But he’s committed. Call it whatever you want — gluten clearly doesn’t do him any good. And after we began talking, and he started to live consistently without all those problems plaguing him, he began suggesting to the members of his family that they be checked out too. The mother who suffered colon cancer. The sister with some of his same ailments. The brother who had never been well. His three sons, one of whom spent time in Iraq and could not eat a meal without throwing up and having horrible stomach pains. (The Marines refused to believe that anything was wrong with him, and did not investigate.) They have started listening. One of his sons has gone gluten-free with him, entirely. Always a lover of food (he began cooking seriously at 11), Chris is now one of the assistants at the Chef’s restaurant. He’s thrilled to be working at a place where he can put his hands on the food and not worry about growing sick. In turn, he’s feeding other people who are amazed to be eating gluten-free in a restaurant.
Those ripples are extending outward.
So when Nina and Booth fed us, the other night, I didn’t have to examine any packages for her, to detect hidden ingredients. Everything in their home was already gluten-free. We sat in their capacious kitchen, the warm light falling down upon us, eating kalamata olives, Manchego cheese with quince paste, and rice crackers. Nina worked on the chicken curry, Booth cooked the jasmine rice, and we all laughed together. Everyone in the room felt well.
The curry was stunning. The eggplant bharta kicked our sinuses with its spiciness. Even the non-alcoholic fizzy grape juice tasted good to me.
But the best part of the meal was at the end. With a proud flourish, Nina brought forth a plate of chocolate chip cookies. For the first couple of months they were both eating gluten-free (she eats with him, after all), Nina relied on mixes. It’s how I started too. But when I showed her more flours, and told her how I combined them, she started playing.
And just that week, she had invented chocolate chip cookies that made them both howl with delight. Hands grabbed for them that night, and then reached in for more. These weren’t specialty cookies. These were just damned fine.
After months of not having a taste for sweets, something awakened in me. Still-warm, crumbly chocolate chip cookies, the chunks of chocolate melting against my teeth, the whole grains in the flours as generous as the light in the kitchen had been, the dark sweetness of Muscovado sugar — all of it shared with friends.
Little Bean began dancing in my belly.
Isn’t it amazing? How much we all mean to each other?
NINA’S BETTER THAN WHEAT FLOUR CHOCOLATE CHIP COOKIES
Nina and Booth gave me permission to tell their story here. And Nina kindly gave me her recipe, so that everyone can have great chocolate chip cookies.
I take no credit for these. I stand in awe. These are all hers.
1 cup teff flour
1/2 cup sorghum flour
1/2 cup ground flaxseed
1/4 cup sweet rice flour
3/4 cup Muscovado sugar
3/4 cup white sugar
2 sticks butter– softened
1 tsp baking soda
1 tsp salt
1 1/2 tsp vanilla extract
1 bag Ghirardelli BITTERSWEET chocolate chips
1 cup chopped walnuts
Preheat oven to 375ºf.
In a large bowl– put in softened butter. Blend in sugars. Mix in eggs and
then add vanilla. Mix all dry ingredients together, and blend into wet
mixture. Blend in chocolate chips and nuts. Put heaping teaspoonfuls onto
Bake for 10 minutes.
Remove to cooling rack.