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Isaac's Story 1: Isaac’s Special Diet "We are what we eat." This old saying has special meaning for people who are allergic to or intolerant of particular foods. Many people with autism have been observed to be hyper-reactive to various foods and to have chronic gastrointestinal problems. For nearly a year, our son Isaac has followed a diet that is completely gluten-free and casein-free. For some years before that, his diet used alternatives to wheat and cow’s milk in any form or trace, and also avoided any sugar, potatoes, tomatoes, yeast, coffee, alcohol, or chemical additives. Why? What have been the benefits? And what are the challenges of keeping a special diet? WHY CHANGE THE DIET OF AN ADULT WITH AUTISM? Isaac has had gastrointestinal problems throughout his life. From infancy, he had alternating bouts of constipation and diarrhea—with resulting discomfort, shame and sleeplessness. Many features of "best practice" when he was a baby may have hurt rather than helped, including the early introduction of solid foods. Some autistic children of the same age in the late 1960s were diagnosed with celiac disease and the use of substitutes for gluten in their diets may have helped them. We restricted Isaac’s sugar intake when we could see a link with hyperactive behaviour. But through the 1970s and 1980s professionals did not see that gastrointestinal problems might be relevant to autism and parents’ observations were not taken seriously. By his twenties, Isaac’s life seemed to have a 6-8 week cycle of moods and behaviour including gastrointestinal symptoms. When he was in the most distressed, sleepless and hyperactive phases of this cycle, some of his caregivers felt they had to administer anti-psychotic drugs so they could control him. The drugs always had contrary or paradoxical effects, winding him up to even more extreme distress, perpetual motion, and noisiness that could last several weeks. Isaac said that the drugs "scrambled his brains." When medicated, he would also binge on foods that contained casein or gluten. After one prolonged period of distress, we decided we had to act on our observations. We refused permission for any more drugs. Through a series of tests by allergists, naturopaths, and dieticians, we found that Isaac was intolerant of wheat, cow’s milk, sugar, potatoes and coffee—in any trace or form. His diet was immediately modified to use substitutes for all these, with menus and recipes that were appealing as well as nutritious. Tomatoes and yeast were later added to the list of forbidden substances. Isaac responded very well to the changes--in his health, physique, behaviour, and approving comments. His need for a special diet has been proved by what happens when it is occasionally "challenged." Suspect foodstuffs have been deliberately re-introduced in "blind trials" to see the effects on moods, behaviour and sleep patterns. Isaac reacts sharply to these trials—in hyperactive and anxious behaviour, insomnia, food raiding and bingeing--as he does also after mistakes are sometimes made by his caregivers and companions. Early in 2000, we read in PARENTS magazine about Karyn Seroussi’s new book Unraveling the Mystery of Autism and Developmental Disorder: A mother’s search of research and recovery and we joined the Autism Network for Dietary Intervention. We learned of new research findings and experiments that are making sense of how people with autism can benefit from special diets. The theory is a bit more complicated, but goes something like this. Some children may be born with a genetic predisposition to some dysfunction in their immune systems. If triggered by trauma, viral infection, multiple vaccines, or environmental toxins, the dysfunction may damage the metabolism and neurodevelopmental processes. A child so affected may not be able to digest certain foods properly, especially those containing gluten (the protein in common grains including wheat, oats, rye, barley and spelt) or casein (the protein in all forms of dairy products). Peptides (breakdown products of proteins that are not properly digested) may enter the bloodstream and cross the blood-brain barrier; they are called opiates because they affect the nervous and sensory systems, moods and behaviour in ways that are like the effect of drugs. Prolonged exposure to such substances may mean that these effects seem to become ingrained. In addition to gluten and casein, a child may not tolerate or may react to other foodstuffs, such as sugar, yeast, potatoes, tomatoes, citrus, eggs, corn or soy. We know that almost all the research and support around diet and autism is for young children. We dare not hope that Isaac’s autism can be cured when he has lived with it for so long. But all the efforts to support his special diet has been well worthwhile, to make him feel more comfortable and regular in his digestive system and sleep patterns, and for him to achieve a calmer balance in his moods and sensory system. We are encouraged to read of professional support for what we began on our own for our adult son. Stella Waterhouse, in A Positive Approach to Autism, for example, recommends that every child and adult with autism should be assessed professionally so that digestive problems, intestinal/bowel disease and/or food intolerances can either be eliminated or the necessary treatment implemented. We can’t help wondering and worrying about what other damage Isaac might have suffered (to his gut, for example) by living so long with food substances he could not tolerate. WHAT ARE THE CHALLENGES OF A SPECIAL DIET? There are some practical problems. Shopping and food preparation require much more time and concentration than they used to. Practically everything has to be made from basic ingredients which have to be searched for in a greater variety of places than in the nearest supermarket. Even in health food stores, it’s a real challenge to find packaged breakfast cereals or baked goods that are free of all gluten, casein, sugar and yeast. It can be hard to find dairy substitutes, such as milk, margerine or "cheese" that are nutritious and do not contain gluten or sugar. We get a lot of practice reading lists of ingredients and are glad that these now have to be more detailed and accurate in Canada. We occasionally make mistakes and buy things that contain forbidden substances. We may (almost) run out of Isaac’s milk or bread. I have to keep part of my mind always active and alert for his diet. Keeping to a special diet can also be more expensive. Substitutes for dairy, gluten and sugar can cost at least three times as much. Cooking with basic ingredients can be cheaper but involves more time and creative thought. A special diet may seem to limit Isaac’s and his companions’ experiences. A typical adult consumes a significant part of his food in restaurants and fast food places. Isaac used to like snacks at Tim Hortons coffee shops while travelling, but none of the fare there is free of the substances he cannot tolerate. Restaurants that offer Isaac-friendly dishes are rare. Friends may feel inhibited in inviting Isaac to their homes for meals. But he is very happy to take his own snacks along and to join others in social gatherings. Families contemplating a special diet for a child or adult with autism may also have to convince their health and other professionals. For laboratories that can detect peptides in urine, we have to go to the US. And once a diet has been followed for more than a couple of months, the tests may not be valid. It’s possible to get a dietician’s help in "challenging" a special diet once it has begun—systematically introducing the forbidden substances, one by one, and recording the effects. Like other parents that have tried a GFCF diet, we would say that it has been completely validated by the improvements in Isaac’s health, sleep patterns, digestive processes, and his more balanced moods and happier general outlook. Isaac’s doctor was very supportive about his special diet; she liked the freedom from invasive drugs and expensive treatments. The diet has been checked by community dieticians who found that Isaac gets all the essential nutrients. They also said they found our information and experience helpful in their work with children who have autism. Other families report that it can be very hard to implement a special diet because the child with autism may have a narrow range of preferred foods already and other family members may resist changes. Fortunately, we did not find this with Isaac and our family accepted the changes with a very good grace. Our dinner meals are almost always made of ingredients that Isaac can eat. Breakfast and lunch may be more individually planned. We make meal times warm and welcoming. And we have been adventurous in trying out new ingredients and creating new recipes. Isaac’s dad says he was quickly converted to the special diet by our delectable homemade ice cream that uses cashew nut milk and honey among the ingredients. We imagine we are in other parts of the world where the staple diets do not include gluten or casein. And there is help in books with encouraging titles such as The Complete Food Allergy Cookbook: the foods you’ve always loved without the ingredients you can’t have and Guilt-Free Indulgence, an art worth mastering: A Cookbook with a Conscience.
Great Smokies
Diagnostic Laboratory or The Great
Plains Laboratory, Inc.
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