PART I GET READY! GET SET!
CHAPTER 1
Food Reactions:
What They Are and How to Test for Them
“The important thing in science is not so much to obtain new facts as to discover new ways of thinking about them.”
—William Bragg
Food Allergies versus Food Sensitivities and Intolerances
Many people use the term “food allergies” to describe all reactions to food, but this is not accurate. Allergy is one type of reaction to food. There are also numerous sensitivities and intolerances to foods that are not classified as allergic reactions. Many children with ADHD or ASD have multiple types of reactions to foods, ranging from allergies to a variety of types of sensitivities and intolerances. The type of reaction least likely to cause behavioral symptoms is the traditional type of food allergy with obvious symptoms such as sneezing, hives, and wheezing. Children with ADHD or ASD tend to have food reactions best labeled as “sensitivities” or “intolerances.” Some of the most common foods that cause food intolerances and sensitivities are similar to those that cause allergies—milk, wheat, and soy. Corn is also a frequent offending food, but almost any food can trigger reactions due to sensitivity and intolerance.
There are many types of food sensitivities and intolerances that result from poor digestion and/or poor absorption of specific food substances. For the purposes of this chapter, when we refer to food sensitivities, we are referring to the delayed (immunoglobulin G, or IgG) type of food reactions. Food intolerances can include a wider range of reactions, such as intolerances to lactose, fructose, other carbohydrate sugars, phenols, salicylates, and gluten (in celiac disease) and intolerance to byproducts of abnormal digestion, such as opiate peptides from milk/casein, gluten, and soy. More recent research suggests that gluten may also be problematic by causing inflammation in the body and the brain.
Food Allergies
The antibodies (immune cells) in the body that result in traditional allergies are called immunoglobulin E (IgE) antibodies, which trigger the release of histamine. The antibodies that result in one type of food sensitivity are immuno- globulin G (IgG) antibodies. The reactions are different and the testing is different. This distinction will be important when we discuss types of blood tests commonly available to test for food reactions later in this chapter. The most confusion comes from testing for traditional (IgE) allergy reactions versus delayed (IgG) reactions.
IgE reactions are obvious and fast. We are all familiar with traditional allergic reactions in some fashion. A person eats a food and develops hives or wheezing. A person with a severe peanut allergy can develop a life-threatening allergic reaction after eating peanuts. The immune pathway in the body that results in these reactions is very fast-acting. Cause and effect is usually easy to figure out because the reaction happens so quickly. These reactions do not have a direct negative effect on the brain. While people may become irritable from the discomfort of the allergy symptom, such as itching or wheezing, they are not irritable due to a specific effect of the food on the brain. The most common foods that provoke allergic reactions are milk, eggs, peanuts, tree nuts (almonds, cashews, pecans, and walnuts), fish, shellfish, soy, and wheat.
Food Sensitivities
Most types of food reactions, however, are not IgE reactions; most fall into the other categories. IgG food sensitivities can result in physical symptoms similar to allergies. However, they may also result in a much broader array of symptoms, including behavioral or developmental symptoms. A striking difference between food allergies and food sensitivities is the time it takes for the reaction to occur. Whereas food allergy symptoms occur quickly, symptoms of food sensitivities can occur at any time within three days of eating the food. Most commonly, these reactions occur within one to two days. This often makes it very difficult to figure out which food caused which behavioral reaction. With food allergies, keeping a food diary can be very helpful. Because of the delayed nature of food sensitivities, food diaries are less helpful.
For those with compromised systems, the number of IgG sensitivities may be high and include most of what the person eats. For that reason, rotation diets are frequently recommended to limit the damaging effect on the immune system. The concept behind a rotation diet is to limit the exposure to the same food and, more specifically, the same family of foods. By not repeating the suspect or reactive foods daily, the body’s reactions to the foods will be more limited. The most common food rotation programs suggest not eating the same foods more often than once per day in four or more days. Food rotation diets are discussed in Chapter 9.
Food Intolerances
These reactions are not immunoglobulin (IgE or IgG) reactions. Intolerances include problems with digestion of foods due to the lack of specific enzymes including maldigestion of lactose, carbohydrate double sugars (disaccharides), and proteins from gluten and milk (casein). Celiac gluten intolerance is not due to maldigestion but to an autoimmune response that damages the intestinal villi in response to gluten exposure.
Intolerances also include inability to metabolize a component of a food such as fructose, phenylalanine, phenols, and salicylates. Food intolerances may result in immediate and also delayed reactions, depending on the situation. With lactose intolerance, the effects (diarrhea, cramps) may be notable within hours. Gluten celiac type reactions may also be immediate (stomach pain, cramps, diarrhea) and long-term (growth delay, skin conditions, fatigue, and neuro- logical or behavioral/developmental symptoms). For intolerance to phenols and salicylates (a type of phenol), some reactions may be more immediate (stomachache, red face or ears, hyperactivity, hives, and headaches) whereas others are more delayed (dark circles under the eyes, short attention span, sleep disorders, speech difficulties, tics, behavioral problems, and head banging).
Symptoms of Food Sensitivities and Intolerances
Symptoms of food sensitivities and food intolerances can be broad:
GENERAL SYMPTOMS: Fatigue, food cravings
SKIN: Eczema, unexplained rashes, allergic shiners (dark circles under the eyes), red face/ears
DIGESTION: Stomachaches, loose stools or diarrhea, constipation, alternating diarrhea and constipation
RESPIRATORY: Mucus production, congestion
IMMUNE, INFLAMMATORY, AND AUTOIMMUNE REACTIONS
CARDIOVASCULAR: Abnormal pulse, elevated blood pressure
NEUROLOGIC: Headaches (e.g., migraines), ringing in the ears, tingling, dizziness, tics
PSYCHOLOGICAL: Depression, mood disorders, anxiety, panic attacks, aggression, sleep disorder
BEHAVIOR/DEVELOPMENT: ADHD symptoms (decreased attention, hyperactivity, impulsivity), mood swings, irritability, anxiety, autism symptoms (poor eye contact, social withdrawal, decreased language, obsessions, repetitive behaviors)
Causes of Food Reactions: The Digestive Connection
Normally, when foods are digested in the small intestine (the upper part of the intestine), they break down into their smallest components: proteins to amino acids, fats to fatty acids, and carbohydrates to simple sugars. Along with nutrients, these are allowed to cross the intestinal lining into the bloodstream, where they travel to other parts of the body, including the brain.
A critical part of this healthy system is the lining of the intestine. This lining needs to be a good barrier so that foods cannot enter the blood until they have been fully digested. It functions like a window screen, letting in good air but not larger items like pesky flies or harmful bugs. When the intestinal lining is damaged, potentially harmful large food molecules can enter the bloodstream—like holes in the window screen letting in bugs. This condition is commonly referred to as a “leaky gut,” since food molecules leak through the microscopic holes in the intestinal lining.
Many children with ADHD or autism have problems with their intestinal lining. Children with autism also may not have enough digestive enzymes, or the body may not release them at the right times or in sufficient amounts. The type of food that causes the most problems for children with ADHD or autism is protein, specifically proteins from milk, wheat, and soy. Dietary proteins (fish, fowl, meat, eggs, dairy, beans, nuts, seeds, and grains) consist of many chains of amino acids and are not useful until they are broken down into individual amino acids by digestive enzymes. The foods themselves are like dollar bills that will not work in a coin machine. They must be broken down first into individual coins (amino acids). Visualize these proteins as long metal chains, with each link being an amino acid; digestive enzymes break the connection between links and free the amino acids (links) for further use. The amino acids are very small and are absorbed through the intestinal lining into the body. The amino acids can then be put back together in different combinations to make peptides and proteins again. These can be used to build important structures in the body, such as muscle, or to send messages in the body, for example, as hormones or transmitters in the brain.
During digestion, not all of the amino acid chains are completely digested. What results are residues of short chains of amino acids called peptides. The peptides, however, are large and should not be absorbed unless the gut is damaged and, therefore, too permeable or leaky. Think of amino acids like Scrabble letters. Peptides are the “words” made from those letters. Depending on how the letters (amino acids) are arranged, different “words” (peptides) are formed. The body recognizes these “words.” If, however, the letter arrangement does not spell a “word,” the body considers it to be foreign. Likewise, if the intestinal lining is damaged, the body may consider the peptides that leak into the bloodstream to be foreign. If they are not recognized because they are foreign, the body sends specialized cells to get rid of them. When the peptides are “words” the body recognizes, the body allows them to remain. If the “words” have receptors in the brain, they may cross the brain and send a signal. If the signal is not one that should normally occur in the brain, there can be a short circuit in brain functioning. This can contribute to many of the symptoms seen in children with ADHD or autism.
The Dope on Opiates
While short-circuiting of the brain from “misspelled words” can occur in a variety of conditions, a feature that is more common in autism but occasionally found in ADHD is the creation of “words” or peptides that have an opiate-like effect on the brain. If the amino acid “letters” in the peptide “word” are arranged in a specific order, the peptide looks like an opiate and acts like an opiate—similar to morphine. “Opiates” refers to the narcotic alkaloids found in opium such as morphine and heroin. An “opioid” has an opiate-like reaction. Casein and gluten are the most common foods that result in these opiate-like substances. Soy is also likely a source of these opiates. Casein and gluten contain a similar sequence of amino acids. They have, embedded within their long chains of amino acids, sequences of these short opiate-like peptides. These peptides are not available or active unless the proteins are incompletely broken down due to digestive enzyme deficiencies such as lack of dipeptidyl peptidase IV (DPP-IV). The resulting opiate-like endorphins have very specific amino acid sequences. For gluten the result is gliadorphin (tyr-pro-gln-pro-gln-pro-phe) and for milk casein, the result is casomorphin (tyr-pro-phe-pro-gly-pro-ile). These opiate-like peptides are generally large and unable to pass through the intestinal lining. When the lining is leaky, these peptides can enter the bloodstream and travel to the brain, having an opiate-like effect there. These opiate peptides have been found in the spinal fluid and the urine of children with autism. The effect of opiates on the brain can certainly explain some of the symptoms seen in autism.
Many children crave dairy and wheat products. There are some children whose parents describe them as “milk-aholics” because of the intensity of their craving for milk. These cravings may be similar to drug-seeking types of behaviors. A child may not want other foods because they don’t give the brain the same “high” as the opiate-producing foods. Food “hunger strikes” and refusal to eat can occur. This may also account for the behaviors—from irritability to rage—seen in many children when dairy and wheat are initially removed from the diet. They are, in effect, having drug-withdrawal symptoms.
These opiate-like peptides mimic the effects of drugs like morphine and have been shown to react with areas of the brain that are involved in speech and auditory processing. Opiate-like effects on the brain could also result in social withdrawal. A child may “zone out” or “be in his/her own world.” He/she may laugh or giggle for no apparent reason. In addition, a child may have a high pain tolerance since opiates, like morphine, are excellent painkillers. We are aware that there are likely other psychoactive and neuroactive peptide possibilities. It is not unusual for the casomorphin and gliadorphin tests to be negative, yet the child shows a significant improvement in behavior and focus when either milk casein and/or glutens are removed from the diet. It is certainly likely that there are other types of reactions occurring. For these reasons, when a child presents with an extremely limited diet and/or an addictive focus to the classical problem foods (e.g., milk products, glutens, and possibly soy), these are signs that an avoidance trial may be helpful.
Lab Tests: What They Tell Us and What They Don’t
In medical practice, where possible, we like to have information about whether certain treatments are indicated. Sometimes we can tell this simply based on examining a child. Other times, lab tests are ordered. So it seems logical that testing for food reactions (allergies, sensitivities/intolerances) would be a reasonable thing to do. However, this is actually a source of some debate among practitioners. Some believe food testing should always be done before starting an elimination diet; others believe it is not necessary or can be deferred to a later date. Regardless of when food testing is done, it is important to understand what the tests tell us and, equally important, what they do not reveal.
Like the misunderstanding of the difference between food allergies and food sensitivities, many people use the words “allergy testing” to describe testing for all types of food sensitivities or intolerances. Testing for food allergies is different from testing for food sensitivities. If you take your child to a traditional allergist, testing will be done for food allergies, the immediate, fast-acting immune response (IgE). This is done by either skin testing or blood testing. The blood testing, or radioallergosorbent testing (RAST), can be ordered through a traditional laboratory. This type of testing provides reliable information about the immediate types of allergy reactions, the types that can cause hives, wheezing, and a host of other physical symptoms. Neither the skin nor the IgE blood testing gives any information about food IgG sensitivities, which is the type of reaction related to ADHD, autism, and other behavioral symptoms. Therefore, if you want to have your child tested for food sensitivities, a referral to a traditional allergist may not provide the answers you are looking for.
There is another type of testing, for those delayed food reactions, called IgG testing. This type of blood testing is offered only through specialized laboratories and is often not covered by insurance plans. While some traditional laboratories may offer it for casein and/or gluten, traditional laboratories typically do not offer a full panel that includes a variety of foods and food groups. These tests are expensive, and cost needs to be considered as one factor in determining whether or when to test your child.
Reactions that indicate a problem with foods are called positive reactions. They are reported in various degrees, based on the strength of the reaction. There are a number of points to keep in mind when interpreting food IgG test results:
Finding a positive reaction in blood testing does not guarantee that removal of the food will result in improvement. It is revealing that molecules from that food “leaked” into the bloodstream, triggering a response from the body’s immune system, resulting in an increase in these IgG antibodies. Removal of the offending foods and/or rotation does reduce the total load and hence can potentially reduce symptoms. The IgG reaction is common in many with autism. IgG reactions contribute to overall body burden.
The absence of a food reaction does not guarantee your child is not reactive to that food in another category of reactions, sensitivities, or intolerances.
Reactions may be positive to foods your child has never eaten. This is because certain food groups can cross-react, causing false positive reactions.
Some children have positive reactions, of varying degrees, to a large number of foods. If fifteen or more reactions are present, this is thought to be more of an indicator that the intestinal lining is leaky (too permeable to large molecules) rather than each individual food being a problem. In other words, this shows that the intestinal barrier is unable to keep out a variety of food molecules and the immune system has responded by making antibodies against all of those foods. It does not necessarily mean that all fifteen foods need to be eliminated from the diet. Also, when the number is large, the foods are usually those most commonly consumed.
So what to make of these tests? How best to use them to help guide treatment? It is our opinion that food testing generally does not need to be done initially. Again, removing foods based solely on food IgG results does not guarantee improvement in symptoms.
Given these caveats, why and when should you consider food IgG testing? Food testing may be more helpful if conducted after other treatments have already been completed, such as those that help heal the “leakiness” of the intestinal lining. When the intestinal lining is a better barrier, it will be harder for food molecules to enter the bloodstream. The food molecules that do enter and still trigger immune reactions might then have more significance. Food testing may also be helpful in a situation in which the most common offending foods have been removed from the diet and other treatments (such as nutritional supplements) have been started and the child is still not showing adequate improvement. In that case, food testing may then provide guidance on which of all the foods in a child’s diet might still be causing problems. This would help guide further dietary elimination trials.
“Be not astonished at new ideas; for it is well known to you that a thing does not therefore cease to be true because it is not accepted by many.”
—Spinoza (1632–1677)
Are There Any Helpful Tests to Do Before Starting a Special Diet?
Two types of tests are helpful to have at the beginning of this process:
For children with ADHD or autism: Blood testing for celiac disease
For children with autism: Urine testing for opiate peptide residues caused by gluten, casein, and soy
Food allergy and sensitivity testing may be considered, with the caveats discussed above.
As mentioned in the introduction, the physician treating your child may expand testing to include assessments based upon previous test results and symptom presentation. Tests to consider discussing with your child’s physician include:
CBC to check for possible anemia
Vitamin A and D levels to check for deficiency
Metabolic profile
Specialty lab testing may also be considered:
Organic acid urine analysis for cellular nutrient and enzyme functions (the gold standard in nutrient function testing)
Amino acid analysis (plasma and urine)
Stool analysis may include pathogens, parasites, gut microbiota, and markers for digestion, occult blood, and inflammation.
There are many other kinds of tests that may be considered including genetic, mitochondrial, immune/autoimmune panels, and markers for toxic exposures.
CELIAC DISEASE
Celiac disease is a medical disorder in which gluten is not tolerated. In this disease, intake of gluten results in what is called an autoimmune reaction; the result is that the body recognizes the cells in the lining of the small intestine as foreign and reacts against them. This changes the anatomy of the intestinal lining and makes it “leaky.”
The traditional view of celiac disease was that it had to cause diarrhea or affect a child’s growth. However, recent studies reveal that bowel movements and growth may be normal, and a child may instead exhibit behavioral, developmental, or neurological effects from this disease. Celiac disease may also be present in a small percentage of children with ADHD or ASD. Celiac disease also occurs in 10–15% of children with Down Syndrome. The reason for testing for celiac disease before starting a gluten-free diet is that the only current treatment for celiac disease is 100 percent strict, lifelong elimination of gluten. Even 99 percent elimination of gluten will not cure the disease. In children, with 100 percent strict elimination of gluten, this disease is virtually completely reversible, and the intestinal lining will return to normal. This often results in improvement in behavioral and developmental symptoms. In addition, if celiac disease is present and not treated for years, the risk of other autoimmune disorders (such as rheumatoid arthritis or lupus) and certain cancers is increased. It is felt that treating celiac disease lowers the future risk of these disorders.
While some children with ADHD or autism require 100 percent strict elimination of gluten in order to see benefit, there is not a medical consequence to only partial elimination. With celiac disease, partial treatment may result in medical problems in the future. Testing for celiac disease includes two kinds of tests: one that identifies specific antibodies to gluten (anti-endomysial, anti-gliadin, tissue transglutaminase, reticulin) and one that identifies genetic markers (HLA DR by PCR, specifically HLA DQ2 and/or HLA DQ8). The antibody tests must be accomplished while gluten is still in the diet. For the genetic test, exposure to gluten is not required. Genetic testing is generally done if there is a family history or if the screening antibody tests are abnormal. Therefore, it may be worth asking your child’s physician to order blood testing for celiac disease before you start eliminating gluten.
According to the experts in celiac disease, there can also be gluten intolerance that is not celiac disease (i.e., specific celiac testing will be negative). As with gluten, individuals can also react in more than one way to milk products and to soy. Testing for food sensitivities or intolerances can produce a false negative result. It is our experience that avoiding suspect foods is the most reliable means of determining the culprits and their effects.
URINE OPIATE PEPTIDES
Urine testing is available to measure the opiate-like peptides made from casein, gluten, and soy. This testing is available only in specialized laboratories and is often not covered by insurance. It must be ordered by a physician or other practitioner such as a nutritionist. Testing directly measures opiate-like peptides from casein and gluten. Soy peptides cannot yet be directly measured and may be included in the measurements of casein and gluten peptides. The degree of elevation of peptides can provide helpful information regarding the amount of withdrawal symptoms to expect. When a child has high levels of opiates, it may be more difficult to remove the foods due to the intensity of the “addiction” and subsequent withdrawal symptoms. Finding opiates in the urine also provides good motivation for following the diet, as it provides evidence that the foods are creating substances that can have a negative effect on brain functioning.
The Body Doesn’t Lie: The Wisdom of Trial and Response
The best test is the child’s own body. We know the most common offending foods are casein, gluten, and soy. Removing these foods gives “the biggest bang for the buck” for the largest number of children.
The gold standard for food reactions is the child’s response to elimination of a food. It is better than any blood test. The goal of treatments is not to make the blood tests better; the goal is to make the child better. Some children will show obvious improvement when offending foods are removed from their diet. For other children, the response is less clear. The standard way of doing a food test is to do what is called an “elimination and challenge.” An offending food is removed for a period of time. If improvement is not obvious, the body is then challenged by reintroduction of that food. Often, after an offending food is removed, there will be a more obvious and stronger reaction when the food is reintroduced. This method identifies offending foods and the symptoms they cause. A complicating issue is that children may be reactive to more than one food. Even if they react to a food that is removed, other stronger food reactions may mask any improvement from removal of that single food. Sometimes, improvements are not seen until more than one food is removed from the diet. Paraphrasing Dr. Sidney Baker, if you are sitting on multiple tacks, removing only one will not make much of a difference in your comfort level.