Holding my tiny adopted newborn two years ago as he screamed, back arched stiffly in pain and bright blue eyes squeezed tightly shut, I couldn’t possibly have imagined all the gifts he would bring to my family. Today, as we prepare to launch the new community for people with food allergies, intolerances and other restrictions that he has inspired, I am stunned by all the meanings we’ve found in that old phrase, the “miracle of adoption.”
Our journey started just days after his birth in a tiny community hospital in the rural south. He was in my arms within minutes of his birth, the flurry of nerves interrupted by his piercing gaze as he took a long, slow look into my eyes. His older brother bounced nearby, eager to get a look at the little brother he’d always wanted and already loved, while their doting father fumbled with the camera to document it all. At last, our family was together.
Skinny as a rubber chicken, our little guy had come into the world hungry. I had induced lactation, the process through which an adoptive mom can prepare her body to breastfeed, so I was ready to provide, and he nursed eagerly. All, we thought, was well.
Just a few days later, the screaming started. Not little newborn screams but gut wrenching, piercing screams that we thought would never stop. At four days old, he was so stiff with pain that he pushed himself up on his little feet and wailed. Flying home to New York a week later, all I could think was that soon he’d be in the care of the pediatrician that had helped my older son, biologically mine, through asthma, low growth and myriad run-of-the-mill colds. Surely, she would know what to do.
"There must be something wrong with your milk," she said, threatening to "intervene" unless I switched to formula. Shocked, exhausted and heart-broken, I leaned on the skills I had learned as a litigator before leaving law firm life to focus on my family. I had done my homework. Other than the first colostrum that builds up over a woman's pregnancy, the chemical composition of breast milk is no different when you induce lactation than when you birth a child. Moreover, for an ailing baby, particularly one who (like him) comes from a family with a history of food allergies, breastfeeding is one of the most beneficial things you can do as it passes critical antibodies from mother to baby. “Isn’t it possible there’s something wrong with the way he absorbs my milk?” I asked.
Making my way to Montefiore Children’s Hospital in the Bronx, our little one was immediately diagnosed with the classic signs of food intolerance. They explained that the foods I was eating passed through (albeit in a new chemical structure) into my breastmilk. I left with new marching orders: keep breastfeeding as long as I could – but strip a daunting list of common childhood allergens out of my diet. I'd already gone lactose-free six months before (and lost a full size’s worth of bloat and almost 10 pounds in doing so) but now I needed to take out all dairy, gluten, egg, soy, tree nuts, peanuts, shellfish and chocolate, practically overnight.
It took several weeks for all those foods to fully leave my breast milk but within days, our little one's pain had clearly begun to subside. The diaper rashes, which had been so severe he had fissures, had released their angry red and the wrenching screams were replaced with gentle coos. And he began to gain weight at last, slowly inching up onto the growth charts one percentile at a time. When he finally reached the fourth percentile, the doctors ‘graduated’ me from their program. Victory, I thought, was mine.
But at a cost. I'd always enjoyed cooking - at least so long as I could make up my own recipes. But now I had to find a way to feed us all without the basic building blocks I'd always relied on. Going to the grocery store became a long and arduous slog, reading every ingredient on every label and cross-referencing it against the long list of “contra-band” in all their hidden forms. Restaurants switched from a welcomed break to a stressful and tentative foray into the now-hostile world of "normal" eaters. Gradually, I figured out the few go-to products he seemed to reliably digest and became versant in my new cooking vocabulary.
Then, as the weeks became months, unexpected ‘gifts’ began trickling in. First, I found that medical quirks I’d had since college, ranging from bloating and perpetual sinusitis to chronic exhaustion and even depression, were falling by the wayside. And I shed no fewer than 25 additional pounds of unneeded weight, in under a year. Suddenly, while nursing a newborn, I had about six times more energy than I had since college and slimmed down from a size 8 before I’d removed lactose to a size 0 today. When I later weaned the baby and started trying to reintroduce those foods, I found that dairy, gluten, egg and soy consistently caused all those mysteries – and more than a few pounds – to return, but that taking them out made it all disappear again. At the same time, my now-limited cooking options spurred an unexpected rush of creativity. It was like you’d taken away my watercolors and handed me a box of pastels. Inspired by my new medium, recipes starting pouring out of me, several allergy-approved dishes a week.
And yet, our struggles weren’t over. With solid foods for the baby came new mysteries. Pin-prick little red dots on his cheeks. Puffiness behind his eyebrow. And white webby stuff in his diaper that his new pediatrician said was “just his stomach lining.” His doctors were adamant that these weren’t common signs of food allergies – but they couldn’t tell me what they were.
As if this weren’t enough to give any parent’s heart a run for its money, troubling ailments had returned for our older son, then five, as well. About six months before the baby was born, he had started to have intense, chronic stomach aches. Meanwhile, he was transforming before our eyes from a bright, cheerful and flexible child into a spacey and difficult one. One day, thanks to a stomach virus that forced us to keep him off milk products for a while, we’d discovered that cutting all dairy out of his diet not only stopped his tummy aches but was like flipping a switch, back to the bright young boy we’d come to expect. This worked for about a year, but just as the baby’s troubles ramped up, big brother’s pain and mood swings did as well.
“He probably just wants attention,” well-meaning pediatricians, teachers and even family members told me. “I’m sure it’ll pass if you just give him time.” But time only made things worse and I could tell that there was something else going on. Soon, we were handing out Tums like it was candy, one or two after every meal. His symptoms seemed to come and go in the course of the year, acting up in spring and fall and giving him some respite in summer. “Maybe he just doesn’t like school,” the doctors said.
One gastroenterologist thought the tummy aches might get better if we put him on a low-fructose diet. Gone went all the fruits and most of the vegetables he enjoyed. Next came the onerous “FODMAPs” diet, on the theory that he might have irritable bowel syndrome, in which he lost a different grouping of fruits and veges, along with gluten, lactose and soy. Each diet meant finding a new way to cook, a new list for his then six-year-old brain to memorize and emotionally absorb, and a new set of ‘different-from-everybody-else’ snacks to bring to school. But no end to the stomach aches.
Or to the personality changes. In class he’d started to make sloppy mistakes and failed to participate in learning activities I knew he enjoyed. And at home we saw the spacey-ness return, along with an increasing inability to finish his sentences. Soon he was unable to follow simple, two-step directions, or to tell us what had happened at school that day – until the day after. His short-term memory, we realized, was grinding to a halt.
Terrified and trouble-shooting now on two fronts, we found our way back to the immunologist who had diagnosed his seasonal allergies five years earlier, determined to crack the code of our boys’ respective mysteries.
For the baby, whose cheeks were by now ruddy with a constant ‘flush’, we walked out with a list of the 25 least-allergenic foods and instructions to strip everything else out of his diet. Of these, he was able to tolerate just half. Twelve foods.
Nine months and a whole lot of lamb, pears and potatoes later, he had jumped from the fourth percentile in weight to the 29th. The rash reduced enough that we were able to identify environmental triggers too, like industrial carpeting, fleece, stuffed animals and very often just going into a new building. These reactions were accompanied by desperate screaming fits of “Out! Out!” as he tried to get away from the painful stimulants. Still, we were narrowing things down and I felt invincible. After months of shooting in the dark, now we had something new on our side: a doctor who got it, and who cared to make it better.
For big brother, the answers were less clear. “Read this and see if it reminds you of anyone in your household,” our immunologist said as I was leaving her office one day, thrusting a complicated medical journal article into my hands. “We’ve known for a while that this can set in for adults in middle life, but I’ve just heard of two reported cases in children.”
And from there the pieces finally began to fall into place. The article was about a condition in which the body does not produce enough of the enzyme needed to break down the histamine that it naturally produces in an allergic reaction. This same chemical is present in all foods to one degree or another, and some foods trigger further production or release of histamine at the cellular level, even without a classic allergy being present. According to the article, when you don’t produce enough of the enzyme you need to break down the particular amount of histamine in your body (whether due to seasonal allergies or the foods you’re eating), it builds up as a toxin in your cells – including your brain – causing everything from digestive upsets, asthma attacks, pulmonary reactions and sinus symptoms to panic attacks, depression and other psychological disorders.
Skimming the article, I found that all the foods our little ones and I were able to tolerate are low histamine, while ones that made me feel bloated and nauseous – including wheat, cheese, egg whites and soy sauce – were on the ‘no-no’ list, along with berries, anything smoked, aged or fermented and a host of other things. And because histamine is also produced when you have an allergic reaction, we finally had an answer as to why our symptoms would be getting so much worse in the spring and fall, when our many pollen allergies came into full swing.
That was four months ago. Within weeks of starting him on the onerous, low-histamine diet, our older son’s stomachaches were gone. No more Tums, no more tears. Adding a daily Claritin to the mix (to help him break down the histamine he is still producing or absorbing through food), it was as if you’d flipped the light on at last. Literally overnight, the somber, ill-tempered and forgetful little boy who was seemingly losing his cognitive faculties was replaced with a dancing, giggly, brilliant gazelle. Creativity poured out of him as freely as laughter and his teacher – whom I’d forgotten to update in the excitement of it all – sent an email home remarking on the transformation, adding “I hope you’re seeing changes at home, too.”
The baby, meanwhile, has started on a medication to help stabilize his cells and slow their production of histamine. We don’t know for sure yet, but our immunologist believes his mast cells may have a little-understood disorder causing them to produce histamine ‘willy-nilly’ in response to any new input, food or otherwise. Thus while the cause differs, she thinks his symptoms may also relate to periodic histamine overloads. We take precautions now to make sure that none of his foods are more than a few hours old, since histamine builds up with time, cooking in batches and immediately slotting the leftovers away in the freezer in tiny, serving-size glass jars. Gone at last are the blooming rashes, manic screaming fits and ‘tasmanian devil’ moments that far exceeded his quota as a normal two year old. Soon, we hope, we may be able to start reintroducing new foods, and maybe even get him to the full, ‘low histamine’ diet the rest of us are now on. “Restricted”, it seems, is a matter of perspective.
Ours is surely a unique story, but food allergies and intolerances are not. Estimates are that 8% of American children and 3-4% of adults have a food allergy, to say nothing of the millions of others who have non-allergy mediated food intolerances. These include gluten- and lactose-intolerance, along with less well-known ones like histamine and sulfite intolerance and severe immunological reactions like celiac disease. Millions more suffer daily with a range of digestive, psychological and other complaints, some of which may be caused by their own, as yet undetected, food reactions.
Going through our own journey, we’ve also learned that while the specific restrictions, causes or symptoms may differ, people eating on a ‘custom’ or restricted diet have a lot in common. Finding food you can safely eat and learning to cook in a whole new way is overwhelming, time-consuming and often alienating. Finding answers can be just as hard, as the medical profession is still struggling to understand the myriad chemical reactions each of us as very specific individuals might have to a given food – even if it’s “organic”, “healthy” and “nutritious.”
As my own family has found success, I’ve been heart-broken by the number of other moms who have told me that they see what a difference I’ve made for myself and my kids and that they think their own kids could really benefit from the same – but that “it just seems too hard.” It is hard, but it doesn’t have to be this hard. And no one, child or otherwise, should have to suffer because it’s too hard to figure it out. On a purely physical level, we wonder how would our little one be doing if he hadn’t found his way to this family with the crazy coincidence of our shared intolerance and the luck of a really good doctor – and how would we all be doing without the knowledge that he brought to us?
And so we set out to build a new site where people who are managing food restrictions already, or who are just now trying to figure it out, can come together and connect with one another based on their particular eating needs and the lifestyle challenges they present. A place to share recipes and survival strategies for cooking at home, eating out, working with our kids’ schools, etc. And a place to tell our stories. After all the gifts our little one and his tricky little body have brought to us, it seems like the least we can do.