Maxwell vomited so often as a baby that his mother Sarah Luk Hill, learned how to tell it was coming and catch it in a towel.
Maxwell had suffered gastrointestinal problems since birth, including apparent tummy cramps and constipation. Did he inherit his dad’s lactose intolerance, Luk Hill wondered? Maxwell seemed to be reacting to her breastmilk, so she cut dairy out of her own diet starting when he was 10 days old. That reduced his fussiness, but the gastrointestinal problems continued. When Maxwell weaned himself at nine months, Luk Hill put him on a soy formula to avoid exposing him to cow’s milk. That’s when things really “fell apart,” she says from her home in Stratford, Ont. He had a constant runny nose, periodic rashes, and he threw up every night, sometimes more than once. Worried about the possibility of choking, Luk Hill brought Maxwell into bed with her. “He would cough in a certain way, and I could hear it starting to gurgle up, so I kept a towel handy.” Catching his vomit became so routine that she would just fold the towel, toss it on the floor, get a fresh one and go back to sleep.
Then, at age 12 months, Maxwell stopped growing.
Fast-forward through months of visits to various perplexed medical and alternative health practitioners. Finally, a dietitian at a paediatric gastroenterology clinic diagnosed food-protein-induced enterocolitis syndrome. FPIES is an abnormal immune system reaction that happens when certain food proteins (in Maxwell’s case, dairy) reach the intestine. Within two weeks of eliminating all dairy products, plus soy and beef, whose proteins are often problematic for kids with dairy FPIES, the symptoms had improved. Soon, Maxwell started growing again. Now four, he is still small for his age, but he’s catching up — and he’s healthy.
As Maxwell’s case illustrates, diagnosing the connection between what a child eats and what’s ailing him can be devilishly difficult, even when it’s clear the digestive system is involved. And when children’s adverse reactions to food show up in more subtle ways, such as apparent behaviour problems, pinpointing the food culprit is even trickier. (See Blame it on last night’s dinner.)
Restricting, changing or supplementing what a patient eats has been part of both medical treatment and homespun health lore for ages. Diet is sometimes a complement to medications and other treatments. With some medical conditions, a dietary change is the treatment.
In recent years, however, we’ve heard a growing number of claims that various childhood health and even behaviour problems can be solved by tweaking the child’s diet. Celebrity Jenny McCarthy asserts that removing gluten (a wheat protein) and casein (a milk protein) from her son’s diet has helped him to “recover” from autism. Others say similar changes fixed or lessened the effects of their kids’ skin rashes, asthma or hyperactivity.
Sorting through these various claims, it’s hard to tell fact from inference, pseudo-science and downright quackery. While it’s true many childhood health problems can be related to eating certain foods, Kamloops, BC, dietitian Janice Joneja stresses, “the food itself does not cause disease. It’s the body’s response to components of the food that causes the miserable symptoms of what we call food allergy, intolerance or sensitivity.” Joneja has a wealth of professional knowledge and personal experience in this area. She’s a research scientist who went back to school so she could better understand her children’s food allergies; this was back in the late 1970s, a time when few medical practitioners believed food allergies even existed. Today, one of the top authorities on the subject, she notes these disorders can be due to: the body’s inability to digest a food substance (those with lactose intolerance, for example, can’t digest the natural sugar in milk); the body’s inability to process a substance after digestion (as in metabolic disorders); or the immune system mistakenly seeing a food as a threat (as in food allergies).
One of the better-known diet-related health problems is celiac disease, a condition in which gluten, a protein found in wheat and other grains, damages the surface of the small intestine, affecting the body’s ability to absorb all sorts of nutrients. There is no cure. At best, it can be managed by eating a diet that’s free from gluten. This can be tough, since gluten is hidden in many processed foods.
Celiac disease can be diagnosed definitively by a blood test followed by a biopsy, or small sample, of the intestine — but that’s not the case with most food sensitivities. There are shortcuts — educated guesswork and controversial tests used by alternative health practitioners — but Joneja says accurate diagnosis of food intolerances and allergies usually requires careful, often painstaking detective work. “You need to eliminate the suspected foods from the child’s diet for at least four weeks, during which the symptoms should go away if the eliminated food is the culprit. That should be followed by a careful and controlled challenge, where you give the child the food again (one at a time) to watch for a reaction.”
Sometimes the connection between a particular food and a child’s problem seems so clear that parents initiate dietary changes on their own, without consulting medical professionals. Laura Reid took chocolate out of her son’s diet last year and says it greatly reduced the number and severity of the tantrums that had been driving her to despair. “A food trigger wasn’t on my radar because he didn’t seem to have other food allergies,” says Reid, who lives in Hamilton. “But after my mother witnessed a particularly harrowing episode, she reminded me that I had a problem with chocolate in my childhood.” So Reid cut out chocolate and saw a decline in the tantrums after two weeks.
Reid’s food elimination experiment wasn’t risking her son’s health. No child needs chocolate to survive. However, both Joneja and Vancouver paediatric gastroenterologist Mark Kovacs have seen children whose health was compromised by dietary changes based on inaccurate diagnoses of food intolerances.
Kovacs says patients sometimes arrive for appointments with long lists of foods an alternative health practitioner has told them to cut out. He says that’s a concern: “I tell parents, ‘You can eliminate anything you want from a child’s diet, but you have to substitute other foods that offer the equivalent nutrients, and these must also be foods your child will actually eat.’ Removing something like chocolate is not risky. However, when you’re removing all wheat, which a fair number of parents are doing these days, sometimes without a proper diagnosis, there’s a potentially big nutritional concern.”
Autism and diet: Fact or fiction?
Although most autism experts do not believe dietary changes can cure autism, the idea of at least investigating a link between food and this developmental disability has credibility. For one thing, certain metabolic disorders cause abnormal brain development. It’s also true that children with autism have more digestive problems than the general population.
Still, none of that proves digestive problems cause autism or that changes in diet will cure it or even improve the symptoms of any given child. Certainly, Kim Ewin didn’t see any positive changes when she tried eliminating gluten and casein from her daughter’s diet five years ago. For several weeks, the London, Ont., parent carefully observed the response of her six-year-old daughter, who had been recently diagnosed with autism and ADHD. “I kept a journal of what she ate, along with her behaviour, and I noticed no improvement at all in her anxiety, meltdowns or fidgety, hyperactive behaviour.”
Joneja thinks it’s unclear whether many children with autism will benefit greatly from a gluten- and casein-free diet, but supports the idea of parents trying the diet in the hope it might improve some of their children’s symptoms. “However,” she cautions, “it takes a lot of careful work to avoid all the foods with casein and gluten while still ensuring that the child’s diet is nutritionally adequate. This is particularly difficult because some autistic children already have very restricted food preferences.”
Some diet-related health problems, like Maxwell’s case of FPIES, are rare enough that they stump many health practitioners. Other problems, like certain food intolerances, can take a long time to ferret out.
If you think your child has a diet-related problem, the best thing you can do is to learn as much as you can. A good place to start is with Joneja’s book, Dealing with Food Allergies in Babies and Children. Its 400-plus pages take you though all imaginable aspects of every kind of food allergy, intolerance and sensitivity.
Maxwell is doing well now, but his mother, Sarah Luk Hill, says it took her and her husband a fair bit of time to really get a grip on how to eliminate dairy and soy proteins from Maxwell’s diet. “For example, we have to avoid anything that is labelled ‘vegetable oil’ because those oils often contain soy oil. But we keep getting better at it. We don’t really care anymore why he has this condition, although we hope he may grow out of it someday. For now, we’re just happy that we have a way of keeping Maxwell healthy.”
Blame it on last night’s dinner…or not
A specialist in food allergies sorts out which common childhood health issues may be connected to food reactions, and how
“Eczema can be a symptom of food allergy,” says Kamloops, BC, dietitian Janice Joneja. The skin rash is often one of the first signs of allergy in a baby. “But,” she adds, “not all babies with food allergies have eczema, and lots of other environmental allergens, such as dust mites, plant pollens and pet dander, can lead to eczema as well.”
Research offers modest support for the idea that food additives can affect children’s behaviour, although the documented effects are usually very small, noticeable to parents, but undetectable on objective tests. Joneja believes it’s possible that food may affect the behaviour of certain children in various ways, for instance, food allergies can contribute to inadequate sleep, a poor diet or general irritability.
But, Joneja cautions, “hyperactivity is never the only symptom of food allergy, and food allergies or reactions are not the main cause of hyperactivity.”
For children with food allergies, eating or inhaling particles from an allergenic food can cause symptoms of asthma, such as wheezing. But Joneja notes that food itself is seldom the sole trigger for asthma.
Sorting out the theorized link between autism and diet is complicated. There are different theories as to how diet and digestive issues could contribute to autism, the best known being that problems in the gut cause improper metabolism of gluten (a protein found in wheat and other grains) and casein (a milk protein), leading to the development of compounds that can interfere with the central nervous system, thus leading to the development of symptoms of autism.
Another theory is that gut problems lead to vitamin B12 deficiency, which, in turn, causes neurological damage.
Yet another theory, being investigated by a research group at the University of Western Ontario in London, Ont., is the possible role of a short-chain fatty acid most people have never heard of. These theories have not yet been proven, and the only thing we do know for sure is that even if some of them are, they won’t apply to all or even most children with autism.