You Are What You Eat
He was always the worst-behaved child in the room. It didn’t matter where he went. Or when. Three-year-old Donald* simply couldn’t control himself — ever.
“He was bouncing off the walls all the time,” recollects his mother, Annette. “I loved him dearly but couldn’t bear to be around him because he was so obnoxious, in-your-face, he could never sit still, never stop moving, couldn’t control his impulses—he was always hitting, kicking, jumping or touching.”
Desperate to figure out what was going on with her son, Annette stumbled onto an article about a little girl whose behavior seemed nearly identical to Donald’s and who was “cured” through a special diet.
At her wit’s end, Annette put Donald on the diet.
She swears it saved her son.
The diet Annette turned to is known as The Feingold Diet. And it is not without controversy.
Dr. Benjamin Feingold, who developed the diet in 1973, never set out to be a diet doctor. In fact, he was a prominent pediatric allergist who had been the chief of allergy for the Kaiser Permanente Medical Center in San Francisco as well as the chairman of the hospital’s central research committee. Dr. Feingold had been using The Mayo Diet, developed by Dr. Stephen Lockey, to treat his allergy patients. The diet was based on Dr. Lockey’s research, which discovered that eliminating certain synthetic food additives and salicylates, which are found in aspirin, from patients’ diets also eliminated allergic reactions. What Dr. Feingold found, though, was that the diet also seemed to result in behavior modification. He began testing the diet on “hyperactive” children who hadn’t responded to any other treatment. In a significant number of cases, the children’s behavior dramatically improved.
Dr. Feingold presented his findings to the American Medical Association in 1973, asking researchers to study why this diet, which he called the “K-P Diet” after Kaiser Permanente, seemed to work. In 1974, he published Why Your Child is Hyperactive, a self-help book that threw aside the psychiatric diagnosis of hyperactivity as a neurological problem and instead advocated the K-P Diet for children exhibiting the disorder.
The book unleashed a torrent of controversy. Later, a spate of research seemed to disprove the diet, which had become known as The Feingold Diet.
But in 2008, something rather historic happened: The American Academy of Pediatrics admitted it might have made a mistake in chastising The Feingold Diet. In reviewing a comprehensive British study that upheld the benefits of the diet, the AAP wrote: “…even we skeptics, who have long doubted parental claims of the effects of various foods on the behavior of their children, admit we might have been wrong.”
Despite this admission, however, the diet still has some strong detractors, including the web site QuackWatch.com, which warns that The Feingold Diet could pose “potential harm” to children by “Depriving them of the opportunity to receive appropriate professional help (medication, psychotherapy, or both).”
Does the Feingold Diet work?
The Feingold Diet certainly is not the only diet that purports to change behavior, but it is one of the oldest and most studied for hyperactivity, now known as Attention Deficit Hyperactivity Disorder (ADHD). Its proponents urge parents to try the diet before mood-altering drugs, which they say should be used only as a last resort. They point to so-called “black box” warnings — the strongest possible warning the FDA issues for a drug — on both stimulant and antidepressant medications used to treat ADHD as reason enough to hold off on using them.
“It was bad enough when people thought the worst side effect would be a lack of appetite or failure to grow,” says Shula Edelkind, a research librarian for the Feingold Organization, “but now that side effects are known to include stroke, heart attack and sudden death, as well as hallucinations and worsening of the symptoms you are trying to treat, [drugs], should only be used when all other treatments have failed and the child’s ADHD is severe enough to be unbearable without intervention.”
Unlike stimulants or antidepressants, there’s nothing about the Feingold diet that’s inherently dangerous, Ms. Edelkind says. The diet eliminates synthetic food dyes, synthetic flavor and three synthetic preservatives: BHA, BHT, TBHQ. It can be tricky to follow, but advocates say that, in addition to impacting behavior, it can eliminate other symptoms that tend to plague children with ADHD— things like migraines, chronic ear infections, asthma, and even bedwetting and seizures.
The latter assertions cause some to scoff at the diet, or label its adherents fanatical, but over the years scientific research seems to demonstrate that the diet does have its merits.
Two recent studies undertaken by the University of Southampton looked at the effects of food dyes and the preservative sodium benzoate on healthy children. The researchers discovered that the additives resulted in an increase in hyperactivity in both three-year-olds and eight-year-olds.
“We were able to show that, when children were given a daily drink to take containing a mixture of food colors and a preservative [sodium benzoate] that their level of hyperactivity was higher than when they took a drink just containing fruit juices,” says Dr. Jim Stevenson, an emeritus professor at the University of Southampton.
The study prompted Britain’s equivalent of the FDA to urge food manufacturers to remove six artificial coloring agents from foods sold to children; the British government told companies to stop using dyes by the end of this year. The European Union, meantime, passed a law that will require a warning label on products containing any of the most widely used dyes.
Additives in U.S. Food
Here in the U.S., however, petroleum-based additives, as well as synthetic dyes and flavorings, continue to be used in the food supply. These ingredients are cheaper than their natural counterparts, so companies aren’t likely to make the switch if they don’t have to. Given this, organizations such as the Center for Science in the Public Interest are spearheading the effort to persuade the government to force corporate America’s hand.
“Congress should ban the use of dyes in all foods, but especially those marketed to children,” says Dr. Michael Jacobson, the executive director of the CSPI.
In June 2008, the CSPI petitioned the FDA to ban synthetic dyes. The FDA currently is evaluating the issue. But because of the technicalities involved in obtaining and enforcing an FDA decree, the CSPI would prefer that Congress pass a law banning the additives. The chances of that happening, at least in the short term, seem slim.
In the interim, some doctors have begun to recommend that parents delete processed foods from their children’s diets.
“[Children] should not be eating processed food,” asserts Dr. Bonnie Kaplan, a University of Calgary professor of pediatrics. “They should be eating healthy, home-cooked food…Where do you get the additives? Not in the stew that you make at home. We get preservatives when we get the stew pre-packaged.”
The problem is, too few parents believe that synthetic additives can be troublesome for their kids. This frustrates Dr.Kaplan, who studied the issue extensively in the 1980s but couldn’t persuade parents that it was important.
“The public was so close-minded,” she says. “They just refused to accept that nutrients affect children’s behavior. Now there is so much literature showing that diet affects behavior.”
Dianne Doggett is not one of those parents. As the organizer of the Autism Treatment Forum, Ms. Doggett is a strong proponent of a gluten-free, casein-free diet to modify behavior in children with autism. The GFCF diet requires the elimination of all gluten — wheat, barley, oats, spelt and rye — and all casein, a milk protein found in dairy products. Advocates of the diet claim that children with autism have difficulty digesting gluten and casein, and that this incomplete digestion leads to problems that ultimately affect the brain, behavior, and social interaction. Like Feingold followers, those who have switched their kids to a GFCF diet are passionate about its benefits.
“The GFCF diet greatly reduced my son’s sensory distortion issues; it brought back his sense of touch and it reduced his sensitivity to sound and light; it greatly reduced his hyperactivity and improved his sleep. He [also] started to understand and respond to speech,” Ms. Doggett says of her son, who has been on the diet for nine years. “It brought him back to ‘our world’. It was wonderful.”
But unlike the Feingold Diet, the GFCF diet has not been studied extensively; what few studies have been done don’t appear to show a benefit, perhaps because study participants didn’t adequately adhere to its strict regimen. Despite this, doctors today don’t seem so wary of it as in the 1970s when most lambasted Dr. Feingold as a quack. Indeed, some physicians today are following in Dr. Feingold’s very footsteps by trying the GFCF diet as a last resort for kids for whom nothing else seems to work.
Dr. Diane Black, a biochemist who founded the Fetal Alcohol Institute of the Netherlands, is a prime case in point. A dozen years ago, her sons began demonstrating some autistic behaviors, such as hiding in cupboards, crawling around in circles, and meowing like cats when stressed; her youngest son seemed off in his own world. Dr. Black attempted Applied Behavioral Analysis-style therapy with him, rewarding him with a piece of chocolate if he would make eye contact, but it didn’t seem to be working. When a friend mentioned to her that a GFCF diet could perhaps help children with autism, Dr. Black figured she had nothing to lose. She started the entire family on the diet and within a few weeks, the boys’ diarrhea, cramps and throwing-up stopped; they became calmer and their pain sensation normalized to such an extent that they ceased self-damaging behavior such as head-banging and picking the skin off of their fingers. They also stopped walking on their toes, and her oldest son began to sit quietly at the dining table instead of jumping from his chair or dancing on the table.
Frankly, the new behavior was more than a little disconcerting: Dr. Black had never seen her sons so calm.
“One evening at the dinner table, my youngest son, William looked deep into my eyes and said, ‘I only want to look at you, Mama’,” she told Parent:Wise. “From that moment on, he made great advances in bonding to me, and within a few months started to interact with other children. Thus there is no question for us that the GFCF diet was of capital importance.”
Making the Change
If diets like these can have such a profound impact on a child’s behavior, why don’t more parents try them? Perhaps because both The Feingold Diet and the GFCF diet can be incredibly difficult to begin and demanding to maintain. Gluten and casein, for example, are ubiquitous, hiding where you would least expect them — and ingesting even a tiny bit derails the entire diet.
“Not only can gluten be found in foods as surprising as salad dressing, but these peptides also appear in medications, cosmetics —lipsticks have gluten! — and stationary products such as envelopes and glues,” says Vicki Kobliner, a registered dietitian with Defeat Autism Now. Still, she says, more and more grocery stores are carrying GFCF foods so parents shouldn’t be intimidated by the seemingly Herculean task of implementing the diet. “After a few weeks, it becomes very routine and is often more nutritious”
For parents who don’t know where —or how— to begin the process of understanding how diet affects their child’s behavior, the Early Intervention Program is a good place to start. Any child ages birth to three with developmental concerns can access the program, which is administered through each state’s department of health. Typically, EI programs are not well-publicized; most rely on referrals from pediatricians and other health professionals. The enrollment process can take a long time, but the benefits are worth it, says Judy Converse, a registered dietician and author of the book Strategies to Help Kids on the Autism Spectrum Focus, Learn, and Thrive.
It’s critical for parents to know how to apply nutrition tools, diets, lab tests, and biomedical treatments in the correct sequence for the most behavioral success — and they need to know how to do it within their health insurance network so they don’t go broke paying for the promise of a miracle, Ms. Converse says.
“I object to providers charging thousands [of dollars] for lab tests of dubious worth to the child’s progress, selling unnecessary supplements, or imposing overly restrictive diets that impair growth or create other problems,” she says. “I have seen these situations too often over my ten years in practice.”
That’s precisely the problem with these diets, opponents assert: they offer promises that aren’t steeped in science and lure people into spending money on specialized foods and supplements in an attempt to “cure” their children. The fact is, says Dr. Amy Culp, a registered and licensed dietician, there’s no reason to put anyone on a gluten-free diet unless it is medically warranted — for example, if the person is diagnosed with Celiac disease or has a gluten intolerance.
Dr. Sam Goldstein, an assistant clinical professor of psychiatry at the University of Utah School of Medicine, concurs. “Although there are single case reports and some studies suggesting dietary manipulation may improve the learning and behavior of normal children, as well as reduce symptoms and improve the behavior of children with specific problems such as hyperactivity or learning disabilities, this research has for the most part been poorly conducted.”
True enough, says Elizabeth Strickland, a registered dietitian who specializes in nutrition therapy for those with Autism Spectrum Disorder and the author of the book Eating for Autism: The 10-Step Nutrition Plan to Help Treat Your Child’s Autism, Asperger’s, or ADHD. However, she adds, “It is important to understand that just because most of the research on the GFCF diet is anecdotal instead of scientific, that doesn’t mean that it does not work or should not be considered.”
Donald’s mother, Annette, acknowledges that some people might consider her a “fanatic” for eschewing traditional ADHD medications and instead of putting her son on The Feingold Diet. And she admits that adhering to the program is a lot of work and more of an expense than eating a traditional American diet: she has to read every food label, scour books about what her son can or cannot eat, and take her own cupcakes to every birthday party her son attends.
“It is a pain in the butt,” she says ruefully. But despite the hassle, she simply can’t imagine turning back. Three years after beginning the diet, her son is a completely changed child, she says, and she credits The Feingold Diet with his profound behavioral transformation. “I cannot stress enough what a different child he has become: He is able to control himself in a way he never could before. He is now a sweet boy to be around.”
She understands the hesitation some people have toward behavior modification diets because she herself experienced it. “I could never have suspected that there would be such a significant link between diet and behavior [if I hadn’t seen it],” she says. “It is huge.”
Still, she questions why that same hesitation isn’t expressed about using drugs to treat ADHD. For her, modifying Donald’s diet seemed less medically chancy than giving him a stimulant or an antidepressant with possible severe side effects. Yes, it took longer to see the initial results. But she believes that, in the long term, the benefits of the diet have far outweighed the risks posed by the medication.
“Diet is not a quick fix. The quick fix is to go to your doctor to have a prescription for ADHD medicines,” she says. “[But] if I can keep my children from crazy medicines —and from their side effects— then my job as a Mom has been done.”
*We have changed these names to protect the privacy of the family who agreed to speak with us about their experience with The Feingold Diet. Although their son is doing well now, the family lives in Atlanta and does not want their son labeled by educators or others as a result of their participation in this article.