no laughing matter

Last night, I lay in my daughter’s bed, holding her as she shuddered in pain against me. She cried, hard, just as she had after I lifted her off the toilet a few moments before. Her eyes were red with crying and the exhaustion. She told me again that her head hurt. Her stomach hurt. Her entire body hurt. “Mama, why do my knees hurt?” I tried to keep calm, talking to her in a quiet voice about what was happening to her body. But my body hurt the same way, in the same places, and my sentences stumbled in the middle, the words coming out jumbled. I know this feeling, the start of three to five days of pretty agonizing pain and exhaustion, emotional volatility and discomfort. But watching her go through it is more difficult than I can say.

“Honey, I just can’t stand gluten,” I told her, holding her hand and stroking her back.

“Me too, Mama. I can’t stand gluten too.”

* * *

For years, I hoped that Lucy had somehow missed the hereditary burden of celiac sprue. Statistics vary but it seems to be about 1 in 20 first-degree relatives of those who have celiac end up with celiac themselves. That’s a pretty good chance, but it also seemed like a pretty good chance she wouldn’t have it. We talked with our doctor about this before she was born, and he was pretty clear: there is no one protocol in the medical community for how to introduce children to gluten or look for celiac in children. That makes sense, given that so many doctors are ill-informed about celiac, its symptoms, and how to test for it. Ours is not. He’s kind, wise, and always up to date on the latest information. But given the lack of solid information, for decades, about the true prevalence of celiac in this society, there is no one clear path for how to feed and raise the child of a celiac.

Danny and I talked about this endlessly her first year. We decided, on the advice of our doctor, to do what seemed natural: feed her what we eat. We don’t have any gluten in the house. We weren’t going to bring it in for her first foods. Lucy ate roasted sweet potato, avocados, raspberries, and the pureed leftovers of whatever we ate for dinner. Pretty quickly, she wanted to skip the purees and simply gnaw on whatever we gave her. Salmon, roasted potatoes, broccoli — this was her food. There was no need to give her a hunk of bread, unless I had made some gluten-free bread for recipe testing and she reached for it.

After she was a year old, we let her try some of her dad’s bread at a restaurant. I remember that feeling so clearly. Here we go. Here comes the gluten. But there was no dramatic effect. She seemed fine. She has always been very alive, this kid. She loves her food, laughs out loud, dances whenever possible. I kept looking for dramatic signs: diarrhea or stomach pain, achy joints, blotchy skin. And there wasn’t any. Maybe we were lucky. Maybe she could eat gluten.

I never wanted her to be gluten-free. Lord knows it’s easier in this culture to be able to eat gluten. Most people don’t seem to understand this condition and I didn’t want her to have to endure the ignorance and bullying I see all around me. To send her to preschool and let her eat the little pretzels the teachers tumbled onto the table at snack time seemed like a blessing. We sent her with lots of good food in herl unchbox. I didn’t mind the occasional packaged treat at birthday parties or sharing Dad’s sandwich when we ate out. We ate so well, and she ate so many vegetables and interesting foods that I never really worried about it. She seemed fine.

Except, not really. Something in my mama-mind knew something was off. We knew that her skull surgery, when she was nine months old, was a deep trauma. She didn’t sleep more than an hour at a time for four months after that surgery. So the fact that she spent the next three years not sleeping seemed like her. But every once in awhile — and to be honest, it was more often than I wanted to say — I would think, “Man, when I get gluten, I can’t sleep either.” Lu didn’t sleep through the night without waking once until she was four years old.

(Side note: people keep asking us how we are dealing with the exhaustion of having a newborn. Frankly, we’re fine. Desmond is already a much better sleeper than Lucy was at this age. Sleep deprivation? We’re used to that!)

But I didn’t want to be the mom who refused to let her eat gluten just because she might have celiac. Lots of kids don’t sleep through the night until they are older. She wasn’t suffering. By the time she was three, there were nights she was up in the middle of the night making up musicals in her bedroom, singing and happy. I didn’t want to blame gluten for that. Maybe that was just her brain.

However, as she grew older, and started going to preschool more than a couple of hours a week, we started seeing changes. The night after we had spent a day in the city and she had eaten macaroni and cheese at a restaurant, or some of the extraordinary pizza at her uncle Brandon’s place, she had fitful sleep with lots of bad dreams and gas pains. The next day, she was spacey and lethargic. Sometimes we had to run to the hospital because the moment she got a cold like every other preschool kid, that stream of snot turned immediately into strep with a double ear infection and raging fever.  Luckily, she’s so naturally healthy that this only happened a few times, but it reminded me of my childhood, when I caught nearly every bug that went through the school and ended up with pneumonia or bronchitis every single winter.

And then it all started to pile up by the time she was four. Our bright and lively girl started spacing out when we talked with her. We talked with friends. Oh, that’s the age. They can’t listen to a thing! But it didn’t feel like her. She started having toilet accidents, after she had been potty trained at two. Nearly every day, she came back from preschool with a wet pair of pants and underwear wrapped in a plastic bag in her backpack. When we asked her about it, she told us she had been playing and forgot. But it didn’t make much sense. I started watching more closely. It never happened on the weekends when she was home with us and ate entirely gluten-free. But how could this be related? By last summer, she was at times so kinetically crazily physical that she started to seem hyperactive. One day, I found her on the couch, leaping from one end to the other, repeatedly banging her head into the pillow at the end of the couch. When I stopped her, and asked her what she was doing, she said, “I don’t know, Mama. My brain just keeps telling me to do this.”

She lost all the color in her cheeks. Our bright-eyed and bushy-tailed girl seemed dull and a little bit grey.

One day, out of nowhere, she said to me, “Mama, every time I drink cow’s milk, I get a tummy ache.” I looked at her, surprised. Really? We talked and talked about it. It seems like she inherited Danny’s lactose intolerance. We always marveled that when we took her for an ice cream cone, she would take five bites and throw it away. Now, I understood it was making her sick. We thought this was it. We took her off all dairy for awhile, then realized she was fine with cheese and yogurt. We made almond milk and bought her sorbets instead. I thought that would take care of it.

But it didn’t take care of it. She still complained about stomach aches. I knew it was time to take care of this.

This fall, when we were in Italy and traveling around New England in a minivan, we let her eat all the gluten she could. In order to get an accurate celiac diagnosis, you have to be eating a lot of gluten. How much? Some doctors say gluten at every meal, every day, for six weeks. The idea of that gives me the willies. It’s no wonder that some folks don’t need the official diagnosis to know how to live their lives. They’ve already gone off gluten, seen a dramatic difference, and they don’t want to do this to their bodies. I can’t imagine eating gluten at all, much less for six weeks. But we wanted to test Lucy. The genetic testing was too expensive. And I worried she had active celiac, so we wanted her to have a celiac blood panel, to see. So we let her order all the pasta she wanted in Italy. She ate pizza in New York. We stocked up on good kid snacks for the car and kept them in the back seat, away from my food. She ate a moderate amount of gluten. There was only so much we could get in her. She seemed to resist it.

And then the endless wondering. Was she cranky because we were traveling? Or was it the gluten? Was she not sleeping, tossing and turning and muttering in her nightmares, because of the gluten or because we were in an unfamiliar bed? Was she sick? Or was it the gluten? We just kept going, trying to get her at least six weeks before the test.

By the time we reached home, it felt pretty clear to me. She talked about the “blizzards of poo” she started having every day. She clutched her stomach often. She woke in the middle of the night, crying, and I had to go into her room and pump her legs like she was a baby, to help the gas move through her system. One evening, we went to a family night at our church. Someone brought pizza from Costco and Lucy ran to have a slice. After eating half of it, she put it down on the counter and ran to the bathroom, her face white. She still talks about that pizza. “I did not like that pizza, Mama. I don’t want to ever eat that pizza again.”

To me, it seemed pretty obvious. But I still didn’t want to jump to conclusions. Did she have a flu coming on and that’s why the pizza made her sick? No other kid got sick, so it wasn’t food poisoning. But maybe it wasn’t the gluten. It’s near to impossible to perform scientific experiments on yourself. There are so many variables.

Finally, we went to the doctor’s office to have her blood drawn. She was brave as they tied the rubber band around her arm, then watched as the blood scurried up the tube to the waiting bottle. We told her, “It’s possible that you can’t eat gluten, like Mama. We’re going to take this test to find out. While we’re waiting for the results, you can’t eat any gluten.” At breakfast just after the blood test, she said to the waitress, “I can’t eat any gluten! What can I have?” Immediately, she started advocating for herself. At every party or friend’s house, she asked, “Does this have gluten in it? I can’t eat gluten.” Lucy told her teachers that she could no longer have the pretzels. She needed popcorn instead for snack that day. She has watched me politely interrogate every waiter in restaurants we have visited for years. She has seen me skip dishes at potlucks and asked why. And for years, she sat on the other side of the table from me at restaurants, so her food wouldn’t drop onto mine. Without us saying anything, she sat down on my side of the table after the blood test. “Now I am gluten-free, just like my mama!” she told us.

Three days after she stopped eating gluten, she started sleeping through the night again. By the end of the week, she stopped having accidents at school. There has not been a single one since. There were no stomach aches any more, no blizzards of poo. She found more energy. She started dancing before school again. Her body calmed down. And by the next week, her cheeks were back to pink. We hadn’t seen our kid in awhile.  It felt so good to have her back.

But the celiac test came back negative. According to those results, she didn’t have it.

Danny and I decided, on the advice of our doctor, to keep her off gluten. The results were so dramatic that I couldn’t imagine going back. Maybe we hadn’t given her enough gluten for the test to be accurate. (Since I have published this post, I was told by a reader that a pediatric celiac specialist in Los Angeles told her that her daughter needs to eat three slices of bread, every day, for three months, in order for the adaptive immune system to form enough antibodies to the gluten for the test to be accurate. Three months! I couldn’t get Lucy to eat gluten for six weeks.) Maybe it was a false negative, which happens often with that test. Luckily, we have a doctor who knows this. It’s possible she has gluten intolerance, we thought. Or non-celiac gluten sensitivity. Since we don’t have gluten at home, and thus she eats 95% gluten-free anyway, this just kept her away from the Costco pizza and terrible packaged kid snacks at social gatherings. If nothing else, it was a great chance for her to learn to advocate for herself. So she was completely gluten-free for the first time since she was one. And she clearly felt fantastic.

This year, since October, Lucy has bloomed. Always alive and kind, she is feisty and funny. She has the kind of energy that can only come from finally feeling well. Plagued by two or three ear infections a year, she has not suffered one since she went off gluten. She no longer has problems sitting still at circle time at preschool. Her focus is incredible. We don’t have to ask her to do something 14 times before we finally get her attention. She dances and swims and walks through the world with a wonderful confidence. Last week, I asked her if she had a good day. Puzzled, she looked at me and said, “Mama. Of course. I always have a good day.” That wasn’t true when she was three or four. At five, she clearly feels healthy.

However, it seems that our hopes that she would only have gluten intolerance have been dashed. A few weeks after she stopped eating gluten, she had a couple of bites of gluten-flour pancakes by mistake. She complained of a stomach ache and fell asleep in the car for two hours. This is a girl who doesn’t nap anymore. She hasn’t since she was two. But after those couple of bites, she passed out. A couple of months later, she ate french fries with friends while we talked with their parents. After she had eaten a few bites, I remembered that this place did not have a dedicated fryer, and those fries were cross-contaminated with gluten. But she has gluten intolerance, I told myself. She’s fine. Ten minutes later, she was crying and blotchy faced, stumbling to the bathroom. She came back and fell asleep in my lap. We have been as careful with her since then as we are with me.

Since the test came back negative, we don’t know that she has celiac. And we’re not willing to test her on gluten for three months, and watch her be sick again, just for that confirmation. I do know that no matter what we call it, no matter what the mechanism — right now, and maybe only right now — Lu doesn’t do well with gluten.

Two nights ago, we slipped up, somehow. We’re tired. Our little guy is sweet and lovely, as calm a baby as I have ever met. He’s already smiling and laughing, freely, with dimples to boot. And he sleeps three to five hours at a stretch. Still, Danny and I are tired. We’re working nonstop on the last recipe testing and writing for our next cookbook, which is due June 1st. There’s a lot going on. So the other night, when we looked up at the clock and it was 6:30 and we had no plan for dinner, we decided to go out for pizza. There’s a pizza place on the island that uses a gluten-free crust and careful protocol to make a gluten-free pizza for its customers. Three or four times, we have gone there for dinner together, and I have always been safe. Of course, I remind the people working there how to take care of me, and now Lucy: please take off your gloves, wash your hands, make the pizza in your dedicated space, use toppings that have not been touched while you made other pizzas. They’re a family place and there are a number of families here that can’t eat gluten. They have always taken care of us before. The other night, we were so tired that we decided to call ahead and order our pizzas in advance so they’d be waiting for us when we arrived. We told them we were gluten-free but the girl on the phone kept missing parts of our order. But we felt safe. It felt good to carry the sleeping baby in his car seat, put him on the bench beside us, and share some pizza with Lucy. It felt normal.

When we returned home, I cuddled both the kids on the couch and read them books. I kept mixing up my words, slurring sometimes, stumbling. In my tired stupor, I thought, Man, am I getting old? Lucy seemed pretty volatile before bed, but she fell asleep quickly. I had a terrible headache, but I’m exhausted. And then, I was awake from 2 to 4 am, a cruel fate when it was my turn to sleep for awhile that night. Lucy was awake too, so we spent some time in her room reading. My knee hurt so badly I couldn’t sleep. My hands didn’t want to move, all the joints achy. My belly was a mess. It took me until the morning to piece it together. Oh crap. I must have gotten some cross-contamination. Flipping gluten. I could barely walk to the kitchen for coffee, my entire body aching. The trips to the bathroom began. I haven’t gotten any gluten by mistake in almost a year. I had forgotten somehow, the misery, the return to the halting stumbling pain and ache of every muscle in my body, the roiling rumbling sheer terror of pain in my stomach and the rest of my abdomen, the bone-tired fatigue. I wanted to lay my head down on the table. I couldn’t. There was a baby to care for. A kid to get off to school.

The kid. Oh crap, the kid got gluten too.

When I picked Lu up from her first preschool, she was in tears that I was the last parent to pick up. She started crying when I said we had to wait a few moments before we drove to her afternoon school so I could feed Desmond. She threw herself onto the floor in a full-blown fit, something I hadn’t seen from her since she was three. I tried to stay calm and console her but then I lost my patience since i felt like crap. We somehow we all made it to the car and started driving. Somehow, she cracked a joke and we started laughing. She apologized for getting so upset. I did too. I urged her to eat, since she hadn’t touched her snack and I thought she was hungry grumpy. My head was in too much of a fog from the gluten to make the connection.

“Mama, this cheese makes me feel like cow’s milk,” she said.

“What, honey? What do you mean?”

I figured it out. Stomach ache. Quickly, it became clear she had been suffering with a stomach ache all morning, like me. A headache too. She started to cry again. “Mama, I don’t feel well.”

I told her she didn’t have to go to school, but she loves this afternoon school, a place she can romp free with friends who are dear to her. I told one teacher what had happened and drove back to our studio to work. Or, try to work while I nursed a horrible headache.

When I went to pick her up, she was in tears again. She hadn’t eaten. She was a trooper, her other teacher told me. I had no idea she was feeling sick until the end, when she told me about the gluten. I’m so sorry.

On the way home, as we stood waiting at a stop sign, I looked back at her in the rear view mirror. She had the same glazed expression I had been wearing all day. She looked miserable. She tilted her head and I said, “Go ahead, sweetie. It’s okay.” Her head fell to the side and she passed out, asleep. I carried her upstairs and she took a two-hour nap.

The rest of the evening, she clung to me, flushed and unhappy, needing to run to the bathroom, her voice hoarse from crying. She perked up when good friends came over for dinner, and tried to be happy watching cartoons with her friends. But she didn’t eat any dinner. Nothing sat right. She turned down the chocolate cake I had made for Adrienne’s birthday. By the time they left, she was in agony. Writhing in pain, she begged me to carry her upstairs. I brushed her teeth for her, whispered in her ear that I understood and I felt the same way, and I rubbed her back.

For nearly an hour, she slumped and shuddered in pain. I soothed her as best as I could, trying not to cry myself, even though I felt the same way. Finally, I coaxed her into sleeping.

Lucy and I suffered through this because some employee probably forgot and dusted her work surface with flour before making our gluten-free pizza.

* * *

I wasn’t going to write about this. We have so much going on — a new baby, whom we waited three years to meet; a cookbook due; a James Beard award (!); new plans for our kitchen studio; life to live — and I haven’t been writing about the deeply personal lately anyway. I know there will be some  people who will scoff that Lucy needs to be gluten-free because she didn’t have the official test come back positive. And frankly, I don’t think it’s the business of any damned fool who wants to meddle. I was going to keep this to ourselves.

But the other day, before I got gluten, I saw this video from Jimmy Kimmel. You’ve probably seen it. It’s making the rounds. His crew went out to a park and asked people if they were on gluten-free diets. If so, could they define gluten? Of course, the four people they found to talk incoherently about gluten (“Um, it’s in potatoes?”) managed to sound just as stupid as the producers had hoped. I’m infuriated that anyone is eating a gluten-free diet and doesn’t know what gluten is. It makes our lives more difficult, those of us who truly have to avoid gluten. Just doing it because it’s a fad, and you think it’s a weight-loss diet, makes you seem pretty foolish. But more importantly than that, when you ask for a gluten-free meal at a restaurant, then decide to have the cookie at the end anyway, you make wait staff and cooks across America doubt those of us who need to avoid that little bit of cross-contamination. You are making our lives harder because you tell people you are gluten-free when you don’t even know what it is.

But more for me, I’m annoyed with Jimmy Kimmel and the spate of comedians who seem to think it’s funny to make a lame joke about gluten-free folks. As a friend of mine wrote to me the other day, ‘these “stop average people on the street to make them look like idiots on national TV’ bits have always been awkward, unfair, and pretty exploitative, regardless of the subject matter.” As we’ve been telling Lucy, just putting poo and pee in a sentence doesn’t make it funny. Just making fun of people who are different than you is not funny, comedians of America. This piece was not as infuriating as the piece where Jimmy Fallon did a mock-interview with a cookbook author who said he is deathly allergic to gluten and then shoved a pie in his face. What in the hell is funny about that? However, Kimmel said in the opening how annoyed he is with the gluten-free trend. “I mean, I know there are people who have to be gluten-free for medical reasons. I get that, but I still find it annoying.” (And there was a New Yorker cartoon published this week: “I’ve only been gluten-free for a week and I’m already annoying.”)

Hey Jimmy Kimmel and Jimmy Fallon and the legions of smug people represented by that New Yorker cartoon — screw you. Seriously? Sorry that my 5-year-old daughter’s medical condition is annoying to you. If I had cancer would you say that? “I mean, I know there are people who have colon cancer, but I find it annoying.” Hey Jimmy Kimmel, do you want to try the searing abdominal cramps or explosive diarrhea that my daughter and I have been enduring for the last 24 hours because we got a little gluten by mistake? And then, do you want to hear some numbskull on television say you’re annoying because you’re sick, just for an easy joke? And then, do you want to see thousands of people posting that bit from tv on Facebook and Twitter, saying, “See? I told you so! People who are gluten-free are just as annoying as you think!” Even Michael Pollan — Michael Pollan! — posted a link to that clip by saying, “Gluten-Free People Actually Have No Idea What Gluten Is.” Really, Michael Pollan? I was hoping for a little more nuance and compassion from you.

That’s what it comes down to, for me. There’s so little compassion in this. Sure, some people are blindly following a gluten-free diet (even if they mistakenly think it’s some low carb thing) because they hope it makes them lose weight or feel better. But can you blame them, when we live in a society that says we should be ashamed of ourselves if we’re not at perfect target weight at all times? That says we deserve bullying if we’re outside the norm? Because that’s what all this blithe conversation and cavalier attitude toward those of us who have to be gluten-free really is: plain ignorant bullying. And I’m sorry that my daughter has to grow up in a culture that’s so quick to throw around jokes about her medical condition.

We’re going to make sure that she has more compassion for others than our one-line, quick-joke culture does. I hope this will only make her more interested in other people’s stories than holding onto her idea of the truth. And I’m going to keep working to raise awareness of why so many of us truly do have to be gluten-free. (I’m also going to work hard at dissolving my wish that Jimmy Kimmel, Jimmy Fallon, that New Yorker cartoonist, and even Michael Pollan develop celiac so they can see what it’s like.) Danny and I love playing in the kitchen, making up food that anyone who is gluten-free can eat. I feel even more compelled to create good recipes in the face of this.

But mostly, a little kindness goes a long way. I wish we lived in a culture that prized kindness over disdain.

I could say more. But it’s 4:30 in the morning, and i’ve been up since 1 am. There are always a few nights of unshakeable insomnia after I get gluten by mistake. I just heard Lucy crying from her room. Sounds like the gluten is keeping her awake too. I’m going to let this go and go to her.