This was posted in our local press, I had to share this story.
By: MARY LOCHNER
I sat next to a white wall decorated with neon alphabet letters and tried to explain the problem with my daughter. When I was done the pediatrician leaned back a little and wrinkled her nose. She frankly looked a little repulsed.
“Hold on,” she said. “Let me get the behavioral therapist.”
It wasn’t always like this. After my boy-girl twins were born, I often received compliments on how happy my babies seemed. After about eight months of age, my son stayed the same chill little guy. But in my daughter, I saw a change. At first I thought she must have a slightly more volatile temperament, and that it was only now beginning to show. But after she was a year old, it became apparent that I was dealing with something a little more serious. The slightest thing could set my daughter off—or nothing at all. And when she got upset, it wasn’t like a normal toddler getting upset. She was hysterical. It was like someone had lit her on fire. She screamed, and kept screaming, as though in mortal agony, for as long as two hours at a time.
Comforting her was no easy task, in part because she no longer seemed comfortable with being held. Even while in a good mood, my daughter would become tense and rigid in my arms. The only time she seemed able to cuddle was when she was on the verge of sleep. In those rare times when she was truly exhausted, but not quite asleep, she would finally relax into a snuggle. I treasured those moments. But I also wondered why she had to be nearly passed out to enjoy being held.
As her episodes increased in frequency, I started to feel more concerned. How would she fare in preschool? Was her temperament going to be this extreme for the rest of her life? The worst part was that my daughter just seemed so unhappy. I didn’t want that for her.
The behavioral therapist listened quietly to our predicament. Then he looked at me and shared this illuminating gem: “Well you know, toddlers do have tantrums.”
It wasn’t the answer I was expecting.
“Are you sure? I don’t think I’ve heard of this toddler tantrum phenomenon before.”
Okay, I didn’t really say that. It’s what I wanted to say. But that would have been rude, so instead I assured him that I did know what normal toddler tantrums looked like. I’m the eldest in a large Catholic family, I said; I have 11 younger siblings. I worked as a nanny for nearly three years. I’ve worked as a caseworker for homeless children and severely emotionally disturbed children. I have a pretty well-grounded concept of what is and isn’t normal behavior for a toddler. What my daughter was going through didn’t look like normal behavior to me, and I was concerned the behavior would persist and cause problems in school.
“There’s no way we can predict future behavior from how she’s acting now,” he said.
Actually, I’d done some research and had a stack of articles from peer-reviewed scientific journals on my desk at home that strongly contradicted him. But I was beginning to feel the futility of my communications with the behavioral therapist. I cautiously offered that I’d read some research that seemed to indicate there was a predictive relationship between toddler and childhood temperament.
No, not true, he said.
He added, “She’ll probably just grow out of it.”
“Okay. So what are some tools I could use now to help her when she’s really upset and won’t calm down?”
“Try distracting her,” he said. “Give her a toy that makes noise. Or sit her down in front of the T.V. for a while.”
Brilliant. Your kid is having behavioral problems? Sit her in front of the T.V.
I didn’t know what kind of degree the behavioral therapist had. But I was pretty sure I could’ve consulted someone with considerably fewer credentials for that last piece of advice.
I’m a patient person. I could deal with my daughter’s behavior. But I knew that something was wrong. When my daughter was having an episode of what might have been termed hysterics in an older time, it was as if she was somewhere else. She was unreachable. I’m an old hat at managing toddler tantrums. But there was no response on my part that had much impact on her. When she was distressed, she was just gone.
And her episodes were getting worse. Soon, she was having them at night time as well as during the day. The first time it happened, she woke up screaming hysterically at 2 a.m. Her twin brother and I sat awake with her, and I tried everything to help her, but nothing helped. At 5:30 a.m., she started pointing toward something in the closet. I couldn’t tell what it was. “This? This?” I asked, picking up various items. Finally she gave a favorable response to an old black and white polyester dress. I gave it to her. She held it to her face and rubbed the cool fabric on her cheek, her arm, her belly, and instantly relaxed. She continued rubbing it on her skin, almost compulsively. Within minutes, she had fallen asleep.
By the time my twins were almost two years old, I was no longer mothering my daughter. I was merely surviving her. The night-time episodes continued, and the dress solution had been a fluke; it didn’t work a second time. I never knew what was going to set her off. I now had to hold her when she got upset, and instruct her twin brother to keep his distance, because now that she was older my daughter flailed wildly during an episode, hurting herself, her twin and me if she wasn’t gently but firmly restrained. There were other changes. I can’t remember when, but at some point my daughter stopped making eye contact with me, or anyone, altogether. Even when she was content, she was often off in her own little world.
I got a new pediatrician. I described my daughter’s symptoms. I even started launching pre-emptively into an account of my long experience in childcare just in case he would be tempted to think that I just didn’t know how to tell the difference between a normal tantrum and a real problem. But it wasn’t necessary. He took me seriously. Instead of telling me my daughter would probably grow out of it, he got down to the business of trying to find out what was wrong with her.
He ran Mary Jean through a test or screening for everything from iron deficiency to autism. At the same time, I continued doing my own research, and I started to wonder if my daughter could have Sensory Processing Disorder, which can include intense negative behavioral reactions to the kinds of sensory input that most people don’t even notice. My daughter became rigid when I held her, and sometimes she could be set off by certain sounds. Or she would say “Too loud, too loud!” about a sound that didn’t seem loud at all. I also remembered the time when she could only be calmed by the feel of the fabric of a particular dress on her skin. Could SPD be at the root of her extreme behavior?
While I was looking into that possibility, I came across a newspaper article from March 2012 in the Huffington Post called “Is Sensory Processing Disorder the New Black?” It described the case of a child who sounded just like my daughter. In the story, the girl’s extreme behavioral symptoms disappeared after her mother consulted a nutritionist and took gluten out of her diet.
The nutritionist, Kelly Dorfman, was a co-author of the Huffington Post article, which claimed that gluten intolerance sometimes manifests with “neurological symptoms.” In other words, for some people, it doesn’t necessarily (or only) cause tummy trouble. It messes with your head.
Of course, if readers wanted to know more, they could buy Dorfman’s book, What’s Eating Your Child? about nutritional origins of childhood illnesses.
I was not sold.
Okay, a confession: I didn’t have a whole lot of flattering thoughts about the gluten-free trend at the time. I thought of gluten intolerance as a prototypical “white woman’s disease,” as awful and sexist as that sounds, and is. I thought it was something that a small portion of the population actually experienced, and a much larger portion mostly imagined. I have a sister who’s been gluten intolerant for much longer than it’s been fashionable. She vomits and gets ocular migraines if she accidentally consumes gluten. I couldn’t imagine how all the people that I suddenly met who insisted they were gluten intolerant, but had never seen a doctor about it, could really have the problems my sister did. I thought they were probably just jumping on a trend that made them feel special.
When someone told me they were gluten intolerant, I silently thought “Maybe. Or maybe it’s all in your head, and when gluten-free isn’t cool anymore, you’ll suddenly be cured.”
So when I read Dorfman’s article, I thought, “Right. So now going gluten-free is the cure for children who have extreme behavioral problems, and who-knows-what-else. Maybe. Maybe in very rare circumstances.”
But mostly, I thought it was false hope, and more gluten-free hype offered to parents who are at their wits’ end.
So of course I bought the book.
“So, I was reading this book,” I told my daughter’s new pediatrician at our next appointment, very timidly and pretty much embarrassed that I was bringing it up at all. “And it’s by this nutritionist, who says that sometimes she sees children in her practice who have been diagnosed with bipolar or other mental health problems. But it turns out they’re just gluten intolerant. And then they get better on a gluten-free diet. And I just thought maybe we could try it with Mary Jean.”
I waited for him to, at best, patiently indulge me out of compassion for my plight, or at worst, tell me nicely (because he’s a nice doctor) how stupid that sounded.
Instead, he told me that gluten intolerance could be a culprit of my daughter’s extreme behavior, and that a gluten elimination trial would be a really good way to find out. He suggested going gluten free for a month, then back on gluten for a month, then gluten free a second time, and keeping a journal of her behavior. By doing the gluten-free trial twice, he said, we would be able to reasonably establish that any improvement in my daughter’s behavior was due to the removal of gluten, and not to coincidence.
When I told friends and family about the gluten-elimination trial, I also told them I thought it wouldn’t work. But I felt like I had to try it out of due diligence. It probably wouldn’t help Mary Jean, but at least we’d be narrowing down the possible causes of her condition, whatever it was.
So when the first month went by and my daughter’s episodes decreased markedly, I thought it couldn’t be real. Then again, I couldn’t pin her recovery on anything else.
Sometimes when people go gluten-free, they feel better because when they cut out gluten, they’re also cutting out some of the worst health offenders in their diets: highly-processed foods that often contain gluten-based additives; or refined flour products that tend to spike your blood sugar. But my children and I already ate a ridiculously healthful diet. Tomato sauce, pickles and sauerkraut were pretty much the only foods we ate that I didn’t make from scratch.
Still, that first month, I couldn’t believe my daughter might be getting better because of the gluten-free diet. It was also very easy to forget that things had ever been any different for us, than the relative peace and calm we were starting to enjoy.
But when we went back to eating gluten during the second month, the bad old days came screaming back inside of a week. I realized I’d forgotten what hell it was for all of us, living with my daughter’s condition. By the end of that second month, I was grateful just to get back on the gluten-free diet for month three of the trial. Within two weeks of going gluten-free again, my daughter’s episodes had lessened. By the end of the month, they were down to only two or three occurrences per week.
“It’s not a miracle cure,” I thought, “But it’s a lot better.”
But I was wrong. Going gluten free was my daughter’s miracle cure. After six weeks on the gluten-free diet, her awful screaming and flailing episodes, the ones that would last for hours and come out of nowhere, were gone. Vanished. A thing of the past. It was like she was a completely new, and different, person. Now, if my daughter got upset, there was an obvious reason, and she could be reasoned with. Her distress never lasted more than a few minutes.
My daughter started looking me in the eyes again. She easily relaxed into a snuggle. But the best thing about it was finding out that underneath her old symptoms was this ebullient, curious, affectionate little girl who is so thoroughly level-headed you would be hard pressed to connect her to her former self. Mary Jean’s transformation was like the fabled one between Dr. Jekyll and Mr. Hyde. How had something as simple as a grain protein been the cause of behaviors that were so extreme?
“We know people have behavioral and neurological symptoms with celiac disease,” said Kelly Dorfman, the nutritionist whose book got me interested in considering gluten intolerance in the first place. Her book will be re-released in April under a new title, Cure Your Child With Food, and Dorfman said it’s got a new chapter with more on “bizarre gluten stuff.”
Since her book has come out, Dorfman said, the medical community has started to recognize a condition called non-celiac gluten sensitivity.
“You can have all the symptoms of celiac disease, but you can’t test for it for it using regular celiac testing,” she said.
In celiac disease, the body produces antibodies in response to gluten that can be measured in the blood. According to the National Foundation for Celiac Awareness, an estimated 3 million Americans have celiac disease, which causes a wide variety of symptoms, ranging from depression to abdominal pain. The NFCA says research indicates that six times as many Americans—18 million—have non-celiac gluten sensitivity.
Dorfman said it’s not uncommon for her to see patients in her practice whose only symptoms of gluten intolerance have to do with their behavior and mood. It tends to run in families, she said. The client she describes in her book was diagnosed with bipolar disorder as a young child, and her father was taking medication for anger management. It turned out that both were simply gluten intolerant. Celiac disease is also more common in certain populations, she said, such as Irish Catholic, Italian, and Eastern European Jewish populations, and one might expect non-celiac gluten intolerance to run higher among people with those backgrounds as well. She said she also sees a high frequency of gluten intolerance among Native American clients.
The lucky ones
Maybe it’s not so great for my daughter to be gluten intolerant, but when I first discover that gluten is the problem, I feel like we’ve won the lottery. That’s because I never thought she was going to get better. I thought that, at best, we’d get a diagnosis and then find an effective method for managing her outbursts over time. To have the solution and the cure be so easy seems almost too good to be true. So, mostly, I want to move on and forget the bad old days ever existed.
Going gluten free turns out to be an easy transition for us. I’m a stay-at-home mom with a sitter who comes in part-time to cover my freelance journalism work hours. So there’s no daycare to deal with when it comes to food preparation. All I have to do is buy gluten-free alternatives at the store. That gluten-free trend I formerly derided is a boon to us now: it means there is no shortage of food options. We never feel like we have to go without. Life is good.
And then comes the day when the sitter drops my twins off after a trip to the park, and right away I know something isn’t right. We’re getting ready to go to the coffee shop, and my daughter doesn’t like the coat I’m putting on her. Weird, but okay, have another coat, what’s the big deal. The big deal is the second coat is also the wrong coat; she needs the first one. But then she tries it on, and realizes it’s not the right coat after all. Soon she’s screaming hysterically, and insisting on trying on each coat before discarding it as horrible and asking for the other coat. It’s the hallmark irrationality of the bad old days.
I call my sitter to ask her if she gave the twins anything with gluten. Why she would do that, I have no idea, since I expressly told her not to and described what could happen if my daughter eats gluten.
“Oh, gluten?” she says. “Um, I did give them breaded chicken wings. I thought it would be a fun snack.”
Never mind that their lunch pail is already loaded with fun snacks: the kind that don’t cause little Mary Jean to lose her mind. Apparently my daughter’s gluten intolerance wasn’t “real” enough to the sitter to be taken seriously.
Kind of like how I used to view other peoples’ self-proclaimed gluten intolerance.
I suddenly realized it wasn’t necessarily always going to be easy for my daughter just because we knew what her problem was. I imagined sitting in front of an unsympathetic teacher and principal after a school pal slipped Mary Jean a cookie at lunch, trying to explain that the gluten made her do it.
Kellie Seaman, an Eagle River mother of two, has been there before. Her 14-year-old daughter, Taylor, has multiple food allergies. Some of her food allergies make her swell up, or have an asthma attack, or get hives. Wheat turns her into an emotional wreck.
“It’s easier now that she’s older, because she can identify that she’s reacting because of an interaction with food,” Kellie said. “When she was younger, it was harder for her to understand, and it was scary for her.”
Taylor’s parents have got the school thing pretty much figured out. At the beginning of the year, they meet with the teachers, the principal, the school nurse—anyone who will be charged with Taylor’s education and care—and explain Taylor’s condition. They’ve also had question-and-answer sessions with students in the classroom, to help them understand why Taylor reacts to food sometimes. They find it helps cut down on teasing. The Seamans, a military family, have found Alaska schools to be on the whole very supportive and understanding, Kellie said. But it hasn’t been like that everywhere, and some years they’ve had to homeschool.
Taylor’s immune system is highly sensitive, Kellie said; even inadvertent contact with an allergen makes her reactive. Part of communicating with school staff means setting up a protocol for how to recognize and respond to one of Taylor’s reactions. When it comes to Taylor’s behavioral reactions to wheat, Kellie said, it can be hard for people to realize there’s really nothing they can do, and the best thing is to give her space.
“The number one problem is people overreact to her irrational behavior,” she said. “If people can understand that she can’t control it and it will pass, and not engage aggressively and give her time to work through that emotion, it’ll pass more quickly. It’s when people accelerate it, yell at her, say ‘Why are you acting this way,’ that’s when it becomes a problem.”
Sometimes the teacher would send Taylor to the nurse to calm down. Other times her parents would have to pick her up. Kellie said some kids who have behavioral reactions to food allergens get violent. That’s never been the case with Taylor, she said.
“But she would sob hysterically if her pencil broke,” she said.
Taylor, now 14, says she feels more confident in dealing with her food allergies now that she’s older.
“The way I keep control is I’ve learned to ask a lot of questions,” Taylor said. “It gives me more self-esteem knowing that I need to ask about what’s in food, and that I’m old enough to ask, so I’m not having to rely on my mom. My friends help a lot. At parties they’ll watch out for me, and help me remember I can’t have certain things.”
Dorfman said most of the kids she sees in her practice get pretty good at recognizing when they’re having a behavioral reaction to gluten.
“What’s interesting is how well even young kids, who are supposedly not very good at regulating emotion, regulate themselves when they figure out that’s what it is. Kids who’ve been diagnosed with all kinds of horrible things, can tell that the gluten is causing their problem, and stick to (a restrictive diet.)”
When I talk to Megan Ippoliti, another Eagle River military mom who has four young children under the age of six, it strikes me how much her clan fits my previous stereotypes about the gluten-free family. After her husband encouraged the family to go on the paleo diet—another diet trend where adherents eat what people ate during the Paleolithic Era—she concluded that gluten had been wreaking havoc with her children’s behavior. She sees it as the culprit behind her three-year-old daughter’s sleeping problems and excessive tantrums, and her five-year-old son’s anger problems. She hasn’t had any of her kids tested for celiac disease. But she’s convinced the reason her children’s behaviors have improved is that her family stopped eating gluten.
Maybe. One year ago I would have said it’s probably all in the Ippolitis’ heads. But after what my children and I have been through, I’m eating humble pie instead of dishing out a condescending attitude. I hope my daughter and I never have to make the gluten insanity plea to a school principal or preschool director. But if we do, I hope we’ll have an understanding ear to explain it to.