“My stomach does not hurt anymore. Now, I can go places. I love to go places. I made honor roll twice this year. I love to read and I can now do math easier. School is much easier. I am no longer in speech therapy. My teachers are proud of me and say I am a role model. I feel GREAT!”
—Ashley Stilson
“Right now my life is just one learning experience after another. By the end of the week, I should be a genius.”
—Jeannette Osias
A common problem in children with autism is picky eating. This can show itself in a variety of ways. Children may limit themselves to only dairy and wheat foods. They may decide what to eat not based on taste, but by the smell or the look of foods. They may become brand-specific.
They may limit themselves to unusual categories of food, such as eating only food that is white or brown. Some like only crunchy foods, while others like only soft or mushy foods. Some like both types but cannot stand having them mixed together or even on the same plate together. They may be sensitive to any change in food or to hiding supplements in food. Children with autism can often detect even the subtlest difference in foods. All of these factors combine to make adequately nourishing these children a challenging task.
There are many reasons why children develop these picky appetites. Many children, not just children with autism, are deficient in zinc, which is a critically important nutrient in the body. One important consequence of zinc deficiency is a change in taste and smell. The taste of a food is what makes eating pleasurable. If you are unable to taste or smell a food, or if the food has an unpleasant odor and taste, the main sensation you would be aware of when eating the food is its texture. You can well imagine that this can be unpleasant or intolerable. Many of us have experienced a negative response to a food, such as developing food poisoning. These types of “sense memories” can be strong, resulting in a complete lack of desire for that food for a long time, even if you can convince yourself that the reaction was temporary. Even when zinc deficiencies are corrected and taste normalizes, there may be a strong behavioral component to avoidance of specific foods that may need to be addressed. Often, the best treatment is time and patience, though in severe situations, specific feeding therapy interventions may be needed. Monosodium glutamate (MSG), which is found in processed foods, also affects the brain’s perception of taste. Routine exposure can result in craving food sources that tend to be low in nutrient content and restricting unprocessed foods.
As previously described, opiate-like reactions from food can also lead to picky appetites. Children may not know why they are choosing particular foods; they may simply be responding to an awareness that certain foods make their brain feel good. They may then want to eat only those foods, due to a physically based craving for those foods or to an “addiction” to the pleasurable feelings they get from them. Once this addiction is broken—either by eliminating those foods from the diet or by digesting them more efficiently (through the use of digestive enzymes)—children’s dietary choices may broaden.
Another possible side effect of zinc functional deficiency is sensory integration dysfunction or sensory processing disorder, which occurs in a large number of children with autism and a subset of children with ADHD. This refers to problems handling the variety of sensations that bombard our bodies every day. Zinc is critical in sensory development. We sense the environment through touch, sound, smell, taste, and movement. In some children with sensory disorders, these senses are heightened, so that sounds that don’t typically bother people are too loud or smells are too strong. If severe enough, this can be painful for children. Related to eating, if a child does not process taste or smell or touch normally, certain foods may be unpleasant. Mild tastes may seem strong, mild smells may be overwhelming, or particular textures may be intolerable. In these cases, occupational therapy can be helpful to normalize a child’s ability to process sensory feelings in a more normal and tolerable way. Zinc supplementation may be helpful, as described above, and can be discussed with a nutritional professional.
Remember Odysseus from seventh-grade mythology? Seeking to gain entrance into Troy, he cleverly ordered a hollow wooden horse so large that the Greek army could hide inside. What looked like a huge horse was really a disguise to conquer the city. We have used this concept for decades to hide nutritious food to nourish picky eaters.
In the recipe sections, we provide clever ways to introduce and hide new foods, especially vegetables. Mix, blend, or purée a very small amount (1 tablespoon [15 g]) of the new food with a well-liked food. As the child accepts the taste, more can be included. The key is to start small. Blended foods may also be better tolerated by those children who have oral sensory issues regarding food textures. Their sensory development may be younger than their age. It is better to adapt to the sensory level and return to purées until the sensory issues have improved. It is important to have the child eat rather than encourage progression to foods that are not tolerated because they are “lumpy” or unpleasant to chew.
Vegetables must be cooked and puréed well with a food where it will not change the overall color, texture, or taste. If there is nothing but white food in the diet, then start with very light-colored vegetables (squash, cauliflower, and corn). If the child likes ketchup or tomato sauce, then you can introduce deeper-colored vegetables (beets, greens, peas, and beans). First, the vegetable must be well cooked and puréed completely with the child’s favorite food. You can also use baby food purées. Puréed vegetables can be included in batter for pancakes, muffins, brownies, and cookies or in sauces such as tomato sauce, pizza sauce, and ketchup. Blend puréed vegetables into fruit sauces, meatballs, and even peanut butter.
Many of our patients’ families have developed what we call “muffin casseroles.” One child would eat only breads and muffins. His resourceful mother developed a GFCF muffin he liked and then gradually started adding fruit purée to the batter. As that was tolerated, she added vegetable purée and finally added puréed meat. Until he was able to transition to eating foods more traditionally, he had these muffins at every meal and snack—and loved them.
You can also add a vegetable juice to a fruit juice. The color change will not matter if you serve it in a sippy cup. Try carrot juice with orange juice and then add a small amount of another vegetable juice. Again, start with only 1 teaspoon (5 ml) or less. Expand as tolerance improves.
There are dried vegetable powders that can be added easily to various foods and dishes. And if none of the above works, consider natural gummy bears made of vegetables and fruits. As your child expands to eating vegetables, try vegetables dipped in honey or GFCF mayo/ketchup mix or hummus. It’s a start. But remember to carry out the Trojan Horse technique out of sight of your child!
If more protein is needed, there are many clever ways to increase it. If eggs are tolerated, add more eggs, especially the high-protein whites, to foods. This works for batters, breads, and meatballs. Heat-stable rice protein powders can be added to batters, breads, and smoothies made of rice milk and fruit. Do not add raw eggs to smoothies. Taste and texture determine acceptance.
Keep trying this sneaky manner of introducing new foods. Eventually, he or she will accept the food alone—we promise! All it takes is patience, and a lesson from Greek mythology. There is more advice on this technique in the next chapter.
Some children, especially those who are making opiate-like peptides from their foods, are physically addicted to those foods. When the foods are removed from the diet, they can experience symptoms similar to drug withdrawal. The most common symptoms are irritability, anger, or rage. Children may also temporarily regress in their behavior or in their developmental skills. Withdrawal symptoms can be viewed as a good sign, as this indicates the foods were having some effect on the child. Anytime there are negative symptoms from removing a food from the diet, the food is a problem. Not having withdrawal symptoms does not necessarily mean the food is not a problem. Some children have resilient personalities and bodies and can tolerate withdrawal symptoms well, without obvious side effects.
Some children can tolerate abrupt removal of the offending foods. However, most do best with gradual removal of the foods, as this allows their body to adjust with fewer side effects. From a practical standpoint, gradual withdrawal is usually a necessity if your child is a picky eater, as you need to find substitute foods your child is willing to eat.
The best treatment for withdrawal symptoms is time. Food-withdrawal symptoms often subside within a few days and usually not longer than a week. In some cases, they may last longer, again depending on the particular child. As the body becomes clear of the offending foods, there will be a period of time when the child is more sensitive to those foods. If there are unknown dietary infractions during that time, the child’s behavior may worsen. If withdrawal symptoms seem prolonged, they may not be withdrawal but rather reaction to intake of problem foods.
It is worth then carefully reviewing possible sources of exposure to the eliminated foods in case unknown infractions are occurring. One commonly overlooked source of gluten is play dough at school. Play dough is often made out of flour. One of our patients had prolonged behavioral regression without any obvious cause. The cause of his regression became clear only when he came home from school with flour all over his clothes from the play dough.
Time may seem to pass slowly as you try to survive your child’s withdrawal symptoms, but try to remember that there is a light at the end of the withdrawal tunnel.
The best test for determining response to the diet is the change in the child’s physical and behavioral symptoms. For some children, this is easy: Within days or weeks, there is an obvious and dramatic improvement noticed by a variety of people in the child’s life. In other children, the response to an elimination diet is slow and subtle, especially if there are other complicating factors (significant nutritional deficiencies, untreated food allergies/sensitivities, or toxic metals). When the total load is great, it takes longer and more effort to overcome it.
Parents often ask if they should keep data in order to tell whether the diet is working. As a general point, it is our opinion that if the only way to tell the diet is working is by minute inspection of data, then it is probably not worth doing the diet long-term. The goal of the diet is noticeable change that results in an improved quality of life for the child.
Elimination diets result in increased expense and effort, and the benefit needs to be worth that effort. Parents are usually the best people to determine whether the improvements seen are worth the challenge of the diet. Most children with ASD have multiple adults involved in their care who can provide helpful feedback. Feedback from those who are not aware there has been any change in diet is the most valuable. Their observations are less influenced, consciously or unconsciously, by awareness that something has been changed. This type of feedback may come from relatives or friends who have not seen the child since the elimination diet was started and who spontaneously comment on positive changes. Teachers and therapists often need to be informed about the dietary changes because food is often part of the school day or the therapy sessions. However, they can also provide good feedback on apparent changes.
Another way to tell if the diet is helping is through dietary infractions. These may be planned but are often unplanned. Children are exposed to foods that are not on their diets. This can occur at home, school, restaurants, and therapy offices. You can guarantee that if a classmate leaves a gluten-containing snack unattended, your child will be the first one to grab it. This will result in an unplanned “challenge” to your child’s system. Often, in the initial months on an elimination diet, these challenges will result in obvious worsening of symptoms. This is evidence that the food is a problem. It often gives parents motivation to continue the diet, as these infractions often occur around the time parents are tiring of these diets, especially if there has not been convincing improvement by that point. When the child is further along in the healing process, these accidental dietary infractions also provide information. If digestion has improved and/or the intestine has healed enough and is no longer leaky, the same infractions that caused significant symptoms in the past may no longer cause the same degree of symptoms. This is evidence that less of the bothersome food peptides are reaching the brain and causing it problems.
In general, the timing of planned food challenges is best discussed with the practitioner who is guiding your child’s care. Some individuals believe that it is best to challenge the body with a large amount of the offending food so that any reactions will be obvious. We would not recommend that approach because some children are exquisitely sensitive and may be miserable for a significant period of time after a large challenge. Rather, we would suggest an initial challenge with a single serving of one type of offending food (such as casein). For example, we would suggest a challenge with a single slice of cheese rather than an unlimited amount. In addition, we would not recommend a combination food such as pizza, since this contains both casein and gluten. The single serving should be given and no further offending foods given over the next three days. The child’s behavior should then be monitored over these three days, remembering that food sensitivity reactions can occur anytime within 72 hours of eating the food. Reactions most commonly appear the next day or two days after eating the offending food. If no reaction is obvious, a second challenge can be done with a larger serving of the food, again with monitoring of behavior for three days. If still no reaction, servings can be given every two days, then every day, until you are sure there is no negative reaction. The most common negative reactions are irritability or regression in behavior or development (such as reappearance of ADHD or autism symptoms, decrease in language, etc.). There are many fine points to food challenges and interpretation of reactions, and these challenges are best done under the guidance of a knowledgeable practitioner (functional medicine physician, nutritionist).
There is also debate about how long of an elimination period is necessary to determine whether particular foods are a problem. There seems to be general agreement that casein clears out of the system more rapidly than gluten. Recommendations regarding casein elimination have ranged from five days to three weeks; however, in children with autism, longer elimination trials are usually necessary because of the combinations of offending foods and the complexity of the other nutritional and medical factors affecting the brain. Some say that gluten can take six to twelve months to completely clear the system and that one cannot say a gluten elimination trial has failed until it has been done for that period of time. Again, a knowledgeable practitioner can discuss this with you as part of your child’s overall treatment plan. In general, we recommend elimination of casein and gluten for at least three months.
Concern: My child’s doctor is concerned that the GFCF diet is not healthy.
Your physician’s goal is to make sure your child is healthy. Your doctor is right to raise the question of whether your child is being adequately nourished. The concern is usually that two “essential food groups” are being removed from the diet. What is factual, but not well known, is that milk products and grains are not mandatory food groups for human survival.
What most physicians do not realize is that children on the GFCF diet often eat much healthier diets than those who eat “regular” diets. Children on the GFCF diet eat much less fast food and processed food, which often contain casein or gluten. Not much attention is paid to what typical children are getting in their diets, other than ensuring they get enough calcium for bone health. Given the pace of today’s lifestyle, many children eat too much in the way of processed food or fast food and often eat in ways that do not support healthy digestion.
When removing milk products from the diet, there is always the concern that calcium, vitamin D, and protein will be inadequate. As described in chapter 4, there are other sources of protein, calcium, and vitamin D in addition to dietary supplements, which can be used as needed. There is also a concern that gluten-free breads and cereals may not be fortified with nutrients. It is important to note that appropriate use of nutritional supplements is one of the support strategies in achieving successful elimination diets. See chapter 2 for details. In addition, refer to The ADHD and Autism Nutritional Supplement Handbook.
A testimony to the resilience of the human body is its miraculous ability to afford adequate brain function for most children and adults despite poor nourishment. For children on elimination diets, it is just as important to pay attention to what is being put back into the diet as it is to what is being taken out. When this is done, children’s diets are healthy, and often more healthy, than those of their typically developing peers.
Concern: My child’s doctor feels the elimination diet is a waste of time.
Physicians are also concerned that parents of children with special needs do not get taken advantage of in their desire to help their children. They are concerned that parents may have false hope or undertake treatments that are harmful or expensive. These can be positive qualities in a physician. However, most physicians do not receive much education about nutrition during their formal training. They may only hear that you are removing foods from your child’s diet and may not be aware of the potential health benefits. An elimination diet, done correctly, will not be harmful to your child and will hopefully be helpful. All physicians take the Hippocratic Oath, which states, “First do no harm.” It may help to tell your physician that you are aware of this and that you will be pursuing the diet in a way that “does no harm.” Even if your physician feels the diet may not help, at least you can make him or her aware that it will not harm your child if done thoughtfully.
Concern: What can we do to get more support from family and the school?
It is important that all caregivers involved in the child’s life be aware of the diet and be committed to supporting it. Especially when starting the diet, it is important to be as strict as is reasonably possible so that you can feel you’ve given the diet an adequate trial. Again, some children improve simply with a decrease in the amount of offending foods. However, other children need to be taken completely and strictly off the offending foods before improvement is seen. If other adults involved with a child give nonpermitted foods, this may sabotage the elimination trial.
Some people, such as grandparents, teachers, or other family members, may think a small amount of a prohibited food couldn’t hurt. In this case, it may help to compare the GFCF diet to a diet for a child with diabetes or a life-threatening peanut allergy. In those situations, no adult would contemplate giving just a little bit of an impermissible food. Similarly, while food infractions on the GFCF diet are not life-threatening, they can have serious negative effects on brain functioning. The adults in your child’s life who know and love your child and want the best for him or her may be better able to support the diet if they understand what problems the foods can cause in the brain.
One additional challenge in convincing other caregivers about the consequences of cheating on the diet is that the effects of the cheat often do not occur immediately. Effects of infractions often occur the next day or two days later, when the adult who gave your child the food is no longer present. Some parents have jokingly told their child’s grandparents that they were welcome to give the child an offending food but then they would have to keep the child for the weekend. Many a grandparent has probably become aware of the reactions to food when babysitting a grandchild for the weekend.