Lisa Lewis earned her Ph.D. in Biological Anthropology from New York University, where she studied genetic variation. Her son's autism diagnosis and her family's successful adoption of the gluten-free casein-free diet led to her award-winning Special Diets for Special Kids series. Lisa continues to be a pioneer in the field of dietary intervention.

Special Diets for Special Kids

Future Horizons, Inc.

Contents

Why Special Diets?

People have used dietary interventions to treat diseases for many years but, as one might expect, this approach is rarely attempted when more conventional medical interventions are already available. Bluntly stated, dietary interventions are almost always tried for disorders that are, at the time, incurable. When no pharmaceutical or surgical treatments are available, diets may be tried out of desperation, from the perspective that "We might as well give this a shot." And while not all dietary interventions have been successful, many have produced significant improvement for specific symptoms.

The ketogenic diet is a good example of a diet used to treat a medical problem that seems to bear no relation to food or nutrition. Doctors at Johns Hopkins in Baltimore, Maryland, began using an extremely high-fat, low-protein carbohydrate diet to manage seizure disorders 70 years ago. The ketogenic diet lost popularity many years ago but resurfaced in the 1990s when Dr. John Freeman and nutritionist Millicent Kelly (1996) wrote a book on the use and management of the diet. It is again being used at medical centers around the country to control intractable epileptic seizures in patients who do not respond to conventional drug therapy and are not good candidates for surgery.

Another disorder for which dietary interventions have been used is attention deficit hyperactivity disorder (ADHD). Although estimates vary, some reports place the number of school-aged children taking stimulant medication for this disorder at over two million. As is true for most learning and developmental disabilities, boys with this disorder outnumber girls by a ratio of approximately 2:1. These children have various problems, including distractibility, impulsiveness, and hyperactivity. The behaviors associated with this disorder include difficulty remaining seated and paying attention, difficulty obeying instructions, shifting from one uncompleted activity to another, difficulty playing quietly, talking excessively, interrupting, losing things, and being unaware of the consequences of their actions.

Most children with ADHD are placed on stimulant medication. Despite potential risks and over the objections of many parents, some teachers insist that these boisterous children not be allowed in their classroom unless they are medicated.

For parents of ADHD children, Dr. Ben Feingold came along as a white knight in 1975 when he published Why Your Child Is Hyperactive. The late Dr. Feingold was a pediatric allergist in San Francisco who claimed that childhood hyperactivity was caused by food dyes, artificial flavorings, and certain preservatives commonly used to increase the shelf life of foods. He pointed out that over 80% of the food additives in our nation's food supply were composed of artificial colors and flavors.

Feingold hypothesized a genetically mediated sensitivity to certain artificial ingredients, citing the direct correlation between the increasing use of additives and the rise in learning and behavior problems. He prescribed a diet that eliminated these items, as well as foods containing the natural chemicals known as salicylates (salicylates are found in almonds, apples, apricots, berries, cherries, cucumbers, grapes, oranges, plums, tangerines, and tomatoes). Members of the Feingold Association have been helping parents of children with ADHD since 1976; for more information visit their website at http://www. feingold.org.

L. M. Pessler and colleagues (2010) at the ADHD Research Center in the Netherlands reported on their pilot study on the effect of diet on physical and sleep problems commonly seen in ADHD. A group of twenty-seven children were randomly assigned to a diet group or a control group. The diet group followed a 5-week elimination diet, while the controls stuck to their regular diet. Parents kept extensive diaries and monitored behavior, physical, and sleep complaints. "The number of physical and sleep complaints was significantly decreased in the diet group compared to the control group." There were significant reductions in the frequency of headaches, stomachaches, excessive thirst, or perspiration, and sleep issues. They concluded that "An elimination diet may be an effective instrument to reduce physical complaints in children with ADHD, but more research is needed to determine the effects of food on (functional) somatic symptoms in children with and without ADHD."

Artificial colors are complex organic compounds derived from petroleum. They are generally cheaper, more stable, and brighter than natural colorings; however, these advantages come at a great cost. According to the Center for Science in the Public Interest (CSPI), artificial colors should be avoided. "yellow 5, Red 40, and six other dyes cause cancer in animals, are contaminated with cancer-causing chemicals, and may cause allergic reactions and hyperactivity." (See the CSPI's full report on artificial food colorings at http://www.cspinet.org.)

Although tens of thousands of children and adults with attention deficit disorder (ADD) and ADHD have been helped by the Feingold and other diets, mainstream medicine still considers diet to be an "alternative" treatment. Diet is not even listed as a treatment on the website of the Children and Adults with Attention Deficit/Hyperactivity Disorder (CHADD), the largest national support and information network for these disorders.

While mainstream medicine considers dietary intervention to be controversial for the ADD and ADHD population, a special diet is the only accepted treatment for celiac disease (CD). Celiac disease, also known as celiac sprue or gluten-sensitive enteropathy, is a chronic disease in which the ingestion of gluten causes a characteristic type of lesion in the small intestine. The destruction of the gut wall causes improper, incomplete nutrient absorption. Children with this disease typically show serious gastrointestinal problems, fatty stools, and slow growth. Research has determined that many patients with a gluten sensitivity serious enough to damage the gut wall show no digestive symptoms in childhood; thus, it is likely that there are a great number of undiagnosed celiac children. In CD patients, all sources of gluten must be completely eliminated from the diet.

To fully understand the diet that must be used by individuals with celiac disease, and is advocated here for autism and other pervasive developmental disorders, it is important to know what gluten is. Glutens are proteins found in the plant kingdom subclass of Monocotyledoneae, the grass family of wheat, oats, barley, rye, and triticale. Derivatives of these grains include malt, grain starches, hydrolyzed vegetable/plant proteins, textured vegetable proteins, grain vinegar, soy sauce, grain alcohol, flavorings, and the binders and fillers found in vitamins and medications.

Why Dietary Intervention for Autism?

Avoiding gluten, and a dairy protein called casein, is at the heart of the dietary interventions outlined in this book. To understand why we need to remove these proteins, it is important to start with some background information about autism research.

The idea of using dietary intervention for autism has its origins in 1980 when neuroscientist Jaak Panksepp observed that children with autism had many traits in common with people addicted to opioid drugs. Addicts are often "in their own world," and frequently exhibit stereotypic behaviors (e.g., rocking). Generally, opiate addicts are insensitive to pain and have serious gastrointestinal problems. Dr. Panksepp (1980) proposed that children with autism might have elevated levels of naturally occurring opioids in their central nervous systems.

These observations led to research in Sweden, Norway, Great Britain, and the United States. In all locations, abnormal peptides were found in the urine of children with autism. These findings ultimately resulted in the postulation of what is now called the "opioid excess theory" of autism. Briefly, this hypothesis suggests that autism and its associated symptoms may result from the incomplete breakdown of peptides derived from foods that contain gluten and casein, and excessive absorption of these peptides (due to a "leaky gut"). According to the theory's proponents, the presence of these peptides causes disruption to biochemical and neuroregulatory processes in the brain.

At least six independent labs have found abnormal peptides in the urine of children with an autism spectrum disorder (ASD) — peptides that are not found in the urine of typical controls. Clearly something is putting them there. Since removal of foods containing gluten and casein leads to widespread improvement, it makes sense to assume that the foods are the source.

There are strong arguments supporting the removal of gluten and casein. Constipation, self-absorption, and insensitivity to pain are hallmarks of both autism and drug addiction. When these proteins are removed from a child's diet, the physical and emotional withdrawal response can be extreme — simply removing foods to which a person is sensitive should not cause this kind of discomfort. Since it has been shown that the urinary peptides decrease with a GFCF diet, it is reasonable to conclude that they have a dietary origin.

Studies of urine in Norway (Reichelt, 2003), England (Shattock, et al., 1990; Shattock & Whiteley, 2002; Shattock & Whitely, 2006), and the United States (Cade, 2000) all found opioid peptides in the urine of patients with autism. These peptides, primarily from gluten and casein, are close enough in structure to morphine-class drugs to cause some of the behaviors and symptoms typical of autism spectrum disorders (e.g., self-stimulation, sensory integration disorders, bowel irregularities, insensitivity to pain).

Subsequent research by Alan Friedman and others at Johnson & Johnson (1999) confirmed the presence of these substances in the urine of subjects who have autism. They also found that these subjects were deficient in a digestive enzyme known as Dipeptidyl peptidase-IV (DPP-IV). DPP-IV is the only peptidase that can break apart certain peptides (including opioids).

According to biochemist Jon Pangborn, Ph.D. (2008), some of the children who respond well to dietary intervention may be under the influence of opioids, but they may have other problems as well. For children with weak DPP-IV digestion, opioid peptides that enter the bloodstream could lead to immune system dysregulation. For these children, intestinal inflammation and lesions could result. Digestive enzyme supplements have now been formulated to include this important enzyme.

Related Issues

Research by Dr. Rosemary Waring (1996), of the University of Birmingham, UK, has shown that children diagnosed with an ASD have a marked deficiency in an enzyme group called phenol sulfur-transferase (PST), impairing the body's ability to rid itself of toxins.

During detoxification, toxins are transformed into harmless substances and excreted. The body often accomplishes this transformation by adding a molecule to the toxin, in a process called conjugation. Sulfate conjugation is a process used to transform many chemicals, including environmental toxins, drugs, and neurotransmitters. For this to occur, there must be enough PST. If this enzyme is deficient or there are an insufficient number of sulfate ions, then detoxification is impaired and harmful substances can build up. Some important metabolic processes can also be disturbed by phenolic compounds. PST is also vital to the sulfate conjugation of phenols; this is important because phenolic compounds are nearly everywhere in the environment. Further, if sulfation is deficient, proteins in the gut wall can stick together, causing gaps. In other words, a PST deficiency may contribute to intestinal permeability.

After hearing a talk by Dr. Rosemary Waring on the topic of PST deficiency, Sandra O. Johnson (S. Johnson, 1995) devised Sara's Diet. This "white diet" eliminates all artificial and natural pigments to reduce the load on the PST system as completely as possible. Although some foods are eventually returned to the diet, the regimen is extremely restrictive. In Kelly Dorfman's (1997) words: "Some parents have used diets that remove all known phenol compounds (such as Sara's Diet) to take pressure off the PST ... system. While sometimes helpful, these diets are extraordinarily difficult to implement long-term as naturally occurring phenols are in every food with color. Except in extreme cases, a diet reducing toxic load from the most concentrated sources ... appears to be the best. That is, reduce juices (or limit to pear juice) and eliminate all artificial colors and flavors." As word of PST deficiency spread, many autism researchers were intrigued by the suggestion that it could cause improper metabolism of neurotransmitters. It has been known for years that persons with autism often have abnormal levels of serotonin as measured in the blood. The buildup of serotonin is interesting and may prove to be significant upon further research. Another equally interesting point is the effect a PST deficiency would have on the permeability of the intestinal lining.

Although most of the reports are anecdotal, there is good evidence that a GFCF diet may indeed be extremely beneficial. The opioid peptides in question may stunt normal central nervous system development. Another observation is equally intriguing: "... because most bioactive peptides are found in different chain lengths, but with very similar activity, different peptidase defects would cause similar but not identical symptom profiles and peptide profiles" (Waring & Ngong, 1993). In other words, there could be several different genetic flaws affecting different enzymes that would result in the same symptoms.

What About Yeast?

For the parents of children with developmental delays or disabilities, the medical history often includes a series of ear or respiratory infections and antibiotic treatment. Many parents say their children "practically lived on antibiotics," and many were placed on prophylactic (preventive) doses for periods of months or even years. But while most children fed this diet of antibiotics developed normally, the vast majority of atypical children did ingest the medications, and continued to show, as they matured, severely disordered immune systems.

A basic tenet of allopathic medicine is that infections are due to organisms (bacteria, viruses, or parasites). Organisms can be killed with antibiotics. Therefore, infections should be treated with antibiotics. This view has changed little in the past 50 years despite evidence that the underlying theory is fragmentary and insufficient to explain why we succumb to these organisms. According to Michael Schmidt, Lendon Smith, and Keith Sehnert (1993), doctors simply are not taught alternatives to antibiotic dosing in medical school.

Antibiotic abuse is rampant, even in situations where their usefulness is questionable. Broad-spectrum antibiotics (e.g., Amoxicillin, Keflex, Ceclor, Bactrim, Septra) are most often prescribed for ear infections. Many (if not most) ear infections clear up without treatment. More importantly, these drugs wipe out normal intestinal flora, which can enable the population of normally occurring yeasts to expand dramatically.

When treatment is necessary, doctors sensitive to these problems prescribe drugs such as penicillin or erythromycin, rather than a broad-spectrum drug. Some rare doctors will also prescribe a short course of an antifungal agent such as Nystatin. Obtaining a prescription for an antifungal drug will likely be an uphill battle with most doctors. While they will readily admit that the drugs being prescribed will cause gastrointestinal upsets and vaginal yeast infections in women, they still laugh at the notion that an overgrowth of yeast in the gut after taking antibiotics might cause illness.

Many doctors claim that the overuse of antibiotics is the fault of their patients who insist on medicine when they or their children are ill. This is probably true; doctors are not the only ones raised with this model of treatment. However, doctors who knowingly prescribe an antibiotic to treat a viral infection to satisfy a patient's demand are not behaving responsibly. It would only take a few moments to explain that currently available medicines will not help a viral infection, and to suggest some other non-pharmaceutical treatments to alleviate discomfort. If doctors continue to prescribe medications they know will not help a child's illness, it is up to parents to resist the temptation to ask for medication.