Disclaimer: Verify this information before applying it to your situation.
Disclaimer: The following is not medical advice. All changes to your child's diet should be supervised by a physician or a qualified nutritionist. Q: I don't think my child has allergies, or that allergies could cause autism. Why should I try removing foods from his diet? A: Although parents have been reporting a connection between autism and diet for decades, there is now a growing body of research that shows that certain foods seem to be affecting the developing brains of some children and causing autistic behaviors. This is not because of allergies, but because many of these children are unable to properly break down certain proteins. Q: What happens when they get these proteins? A: Researchers in England, Norway, and at the University of Florida have found peptides (breakdown products of proteins) with opiate activity in the urine of a high percentage of autistic children. Opiates are drugs, like morphine, which affect brain function. Q: Which proteins are causing this problem? A: The two main offenders seem to be gluten (the protein in wheat, oats, rye and barley) and casein (milk protein.) Q: But milk and wheat are the only two foods my child will eat. His diet is completely comprised of milk, cheese, cereal, pasta, and bread. If I take these away, I'm afraid he'll starve. A: There may be a good reason your child "self-limits" to these foods. Opiates, like opium, are highly addictive. If this "opiate excess" explanation applies to your child, then he is actually addicted to those foods containing the offending proteins. Although it seems as if your child will starve if you take those foods away, many parents report that after an initial "withdrawal" reaction, their children become more willing to eat other foods. After a few weeks, many children surprise their parents by further broadening their diets. Q: But if I take away milk, what will my child do for calcium? A: Children between the ages of one and ten require 800-1000 mg of calcium/day. If the child drinks three 8-oz glasses of fortified rice, soy or potato milk per day, he would meet that requirement. If he drank one cup per day, the remaining 500 mg of additional calcium could be supplied with one of the many supplements available. Twin Labs makes a chewable calcium citrate wafer that contains no allergenic fillers and tastes like a "SweetTart" candy. Custom-made calcium liquids can be mixed up by compounding pharmacies (such as Pathway - 1-800-869-9160) using a maple, sucrose syrup, stevia or water base. There are some very good calcium-enriched milk substitutes on the market. Rice Dream, in the white box, is usually available at the supermarket. Because this brand of rice milk is processed with barley enzymes, there is some concern over whether it will cause a reaction in individuals highly sensitive to gluten. If your child is also on a gluten-free diet, look for other brands of rice milk at your health food store. Darifree, a pleasant-tasting potato-based milk substitute, is available by mail-order (1-800-497-4834.) Soy milk is a good option for some, although many children are allergic to soy. Q: Is this diet expensive? A: There is no denying that many of the gluten-free ingredients you will need to keep on hand are more costly than the staples you are used to buying. However, when you order by the case, the above milk substitutes cost about the same as cow's milk. Some parents report that their autistic children were drinking over a gallon of cow's milk per day (about $60/month!) but these same parents were reluctant to switch to rice milk at $1.30/quart. As with all foods, convenience products such as frozen rice waffles are expensive, but making these from scratch is easy and inexpensive. Bulk rice flour is about 45c/pound, and there are several good gluten-free cookbooks. You'll find yourself making rice and potatoes more often, instead of ordering out. You might even save money. Q: Isn't milk necessary for children's health? A: Americans have been raised to believe that this is true, largely due to the efforts of the American Dairy Association, and many parents seem to believe that it is their duty to feed their children as much cow's milk as possible. However, lots of perfectly healthy children do very well without it. Cow's milk has been called "the world's most overrated nutrient" and "fit only for baby cows." There is even evidence that the cow hormone present in dairy actually blocks the absorption of calcium in humans. Be careful. Removing dairy means ALL milk, butter, cheese, cream cheese, sour cream, etc. It also includes product ingredients such as "casein" and "whey," or even words containing the word "casein." Read labels - items like bread and tuna fish often contain milk products. Even soy cheese usually contains caseinate. For more information on dairy-free living, there's a very good book called "Raising Your Child Without Milk" by Jane Zukin. This can be ordered at Barnes & Noble and at Waldenbooks. There is also a very good little book called "Don't Drink Your Milk" by Frank Oski (the head of Pediatrics at Johns Hopkins and author of "Essential Pediatrics.") This book cites the results of several research studies which conclude that milk is an inappropriate food for human children. It is available for $4.95 from Park City Press, PO Box 25, Glenwood Landing, NY 11547, ISBN # 0671228048. Q: I might be willing to try removing dairy products from his diet, but I don't think I could handle removing gluten. It seems like a lot of work, and I'm so busy already. Is this really necessary? A: What you need to understand is that for certain children, these foods are toxic to their brains. For some, removing gluten may be far more important than removing dairy products. You would never knowingly feed your child poison, but if he fits into this category, that is exactly what you could be doing. It is possible that for this subgroup of people with autism, eating these foods is actually damaging the developing brain. Q: Removing both foods at once seems overwhelming, and I'm afraid of my child's reaction. Can I start slowly? A: Many parents strongly suggest that you try removing dairy first, and then work on planning for a completely gluten-free diet. Gluten can take more effort and some education on your part, and preparation may take a bit longer. Some physicians recommend doing this diet one step at a time to accurately record the child's response, and to reduce withdrawal reactions. The experts seem to agree that the milk and wheat proteins are so similar to each other that if one is a problem, the other should be removed as soon as possible. Q: How do I know if this applies to my child? A: Although there is some peptide testing available, the waiting time for results can be long, and widespread use of a reliable test is not yet available. The researchers agree that this is a very common problem in the autistic population, so a trial period on the diet may be your child's best bet. Although a lab result is more convincing to a doctor, the noticeable improvement many children exhibit will usually persuade even a reluctant spouse to support the diet. Many affected children who eat a great deal of dairy and/or wheat-based foods will show changes within a few days of their elimination. The diet must be strict. Many parents have found that their child did not improve until they discovered and removed a hidden source of gluten or dairy. Noticeable changes in eye contact, sociability, and language are one sign that diet is an important issue. Another thing to look for are changes in the child's bowel movements or sleep patterns. Q: When my child was taken just off dairy he improved greatly, but then he started eating a lot of wheat, perhaps to make up the opiates he was missing. Will I see the same kind of noticeable improvement when I remove gluten? A: Children who eat a lot of gluten should show an improvement when it is removed. Some parents say that their child's response was more obvious with dairy, and some with gluten. Unfortunately, gluten seems to take longer to disappear from the system than casein does. Urine tests show that casein probably leaves the system in about three days, but it can take up to eight months on a gluten-free diet for all peptide levels to drop. If this intervention is followed by a deterioration or regression (a withdrawal-type response,) stay the course! It almost certainly means that your child will benefit. This may seem like a lot of work for anuncertain payoff, but in the lifetime of your child it may be the most important step you take. Q: The only non-dairy, non-wheat foods my child will eat are french fries and chicken nuggets. Are these okay? A: Chicken nuggets are coated with wheat. Some french fries are dusted with wheat flour to keep them from sticking together. It is a very good idea to get used to checking with your supplier or the manufacturer. Keeping a stack of blank, pre-stamped postcards in the kitchen is a handy way to check. The biggest problem with french fries eaten out of the house is contamination of the frying oil with gluten from onion rings and other breaded products. Making fries homemade is a good option. If your child refuses them at first, it may be because of what they're missing! Some parents report that their kids have an uncanny ability to detect gluten in foods. Since many of the children enjoy salt, salting the fries might make them more acceptable. Q: What else contains gluten? A: Wheat, oats, rye, barley, kamut, spelt, semolina, malt, food starch, grain alcohol, and most packaged foods - even those that do not label as such. There is a lot of information on gluten intolerance because of a related disorder called Celiac Disease. Q: After I removed gluten and casein, I discovered that other foods seemed to be causing a problem, like apples, soy, corn, tomatoes, and bananas. I see irritability, red cheeks and ears, and sometimes diarrhea or a diaper rash. I thought you said that these kids don't have allergies! A: Many do have allergies, or allergy-related symptoms such as hay fever, asthma or eczema. Sometimes they have problems with foods which are not "classical" allergies, and which won't show up on skin tests. In this case, a different part of the immune system seems to be involved. Q: So if these foods are not contributing to his autism, they're okay? A: Not really. Current research indicates that in a great many cases, autism seems to be an immune system dysfunction. This not only leads to a problem breaking down casein & gluten, but it may also result in a problem breaking down foods which contain phenols (phenol sulfur transferase deficiency,) and an over-reactive response to other allergens. Often, once gluten is removed, this effect becomes more noticeable, perhaps because the allergens were "masked" by the effect of the gluten. It is also possible that a "leaky gut syndrome," caused by the gluten intolerance, is now permitting other foods to pass through the intestinal screen and into the bloodstream. For children who respond to this diet, allergens do seem to place further stress on the immune system, and have often been shown to worsen behavior and development. Q: But my child's immune system seems to be working unusually well - he is rarely sick. A: What we're describing is not an immune deficiency, but rather an immune dysfunction. Many (although not all) seem to share a history of ear infections and spitting up as babies (possibly milk-related,) or of chronic diarrhea, constipation, or loose stools (possibly wheat-related.) Other parents note that their autistic children seem to be the healthiest members of the family. In this case, it has been hypothesized that the immune system is too aggressive and ends up turning on the nervous system. This may explain the presence of anti-myelin antibodies in some children, and may also explain why some have immune issues like multiple allergies but do not respond well to dietary intervention. Q: What causes this problem? Autism seems to be so much more common than it used to be. A: Researchers are not sure, but it seems likely at this time that many cases are caused by a genetic predisposition or by environmental toxicity, combined with some kind of triggering event that stresses the immune system, such as a vaccination or virus. In several cases, prolonged use of antibiotics seems to have contributed to the onset of the disorder. Q: So, if I can't give him milk or wheat, and if he has some other food allergies, what do I feed my child? A: Most kids are okay with chicken, lamb, pork, fish, potato, rice, and egg whites. Parsnips, tapioca, arrowroot, honey, and maple syrup are usually okay too. French fries from MacDonalds are gluten free (but may contain soy or corn.) Certain white nuts, like macadamia and hazelnuts, are also usually tolerated. Others kids may be okay with white corn, bacon, fruits such as white grapes or pears, beans, sesame seeds, or grains such as amaranth and teff (available at natural foods stores.) There's always something to feed them - even the most finicky kids seem to like sticky white chinese rice or french fries. Q: How do I know which foods he's allergic to? A: Try an allergy elimination diet. For example, keep tomato out of his diet for a few days and then re-introduce it. If you see symptoms, either physical or behavioral, try again in a few days. Try to be systematic, to be certain before ruling out a food. Two excellent resources, which are probably available at your library, are Doris Rapp's book, "Is This Your Child," and William Crook's "Solving the Puzzle of Your Hard to Raise Child." Q: I'm already worried about my child's nutrition, and his "allergies" are causing me to further reduce his choices. If apple juice and bananas are the only fruits he will eat and he's reacting to them, how is he supposed to get by? A: Fruit contains water, sugar, fiber, and vitamins. He needs to get these things from other sources. Q: I thought the "five food groups" were so important! A: They are, to an individual without food intolerances. But, just as a person who eats a balanced diet might not need to take vitamins, a person with poor nutrition can make up for a lot with a good vitamin and mineral supplement. Q: So I should be giving my child a vitamin supplement? A: Absolutely. Poly-vi-sol with Iron is probably okay, or order a gluten-free multi-vitamin & mineral formula from your natural foods store. Kal Dinosaur Chewables are tolerated by many food-sensitive children, and are available with or without minerals. Because many autistic children have been reported to improve on a regimen of vitamin B6 and magnesium, you may want to order a supplement rich in these nutrients from a compounding pharmacy such as Pathway (1-800-869-9160.) For a 40 pound child, Dr. Bernard Rimland of the Autism Research Institute recommends 300 mgs. of B6 and 100 mgs. of magnesium per day. It is likely that in people with a leaky gut, absorption of B6 (which aids in nervous system function) is often greatly diminished. Q: What else does my child need? A: There are six basic things a person needs from food: water, protein (and amino acids,) carbohydrates, fats, vitamins, minerals (including iron & calcium.) In addition, food contains certain phytochemical substances which seem to help with functions like disease prevention. It is helpful to consult a nutritionist about the use of supplements such as pycnogenol for any child on a limited diet. Children who have gone for one year eating only chicken, canola oil, potato, rice, calcium-enriched beverages, and a liquid multivitamin supplement with minerals have had excellent results on nutritional blood tests. You'd be surprised to learn just how unnecessarily varied an American diet is, compared with the diets of other cultures! Q: So how do I know if my child will respond to this diet? A: The biggest clue is when a child craves certain foods or self-limits his diet - especially to milk and wheat. This is no longer seen as a "need for sameness" but as a biological addiction. Children who don't necessarily "self-limit" but who also respond are those who eat an unusually large or small amount of food. Although the former may not recognize the source of the opiates, he knows that eating makes him feel GOOD. The latter may realize that many foods make him feel ill, and tries to avoid eating whenever possible. These "failure to thrive" autistic children are very hard to put on this diet because of their parents' fears, but will usually respond when acceptable substitutes to the non-tolerated foods can be provided. Other symptoms of food intolerance or vitamin deficiency are dermatitis or extremely dry skin, migraines, bouts of screaming, red cheeks, red ears, abnormal bowel movements, abnormal sleep patterns or seizures. Q: What's all this I hear about yeast? A: Candida is a yeast that lives in our bodies in small amounts. It was speculated that in individuals with improperly-functioning immune systems, it could flourish in the gut and lead to a host of problems, including fatigue, sugar cravings, headaches, and behavioral problems. Q: How do we know if this is really true? A: Although Dr. Crook and other physicians for years have been reporting clinical improvements in patients who followed an anti-yeast regimen, we didn't have scientific proof until recently. Dr. William Shaw in Kansas found unusually high levels of "fungal metabolites" (yeast waste products) in the urine of several groups of abnormally functioning individuals (including people with autism.) His first paper describing this phenomenon was published in the Journal of Clinical Chemistry in 1995 (Vol. 41, No. 8.) He is currently conducting further studies on the effect of anti-fungal therapy on urinary organic acids from children with autism. His test is performed by the Great Plains Laboratory, at 913-341-8949. Q: So does yeast cause autism? A: This finding is likely to be just another consequence of the abnormally-functioning autistic immune system. However, it has also been hypothesized that the candida might aggravate a condition of gut permeability (the "leaky gut" syndrome) which might let the gluten and casein proteins into the bloodstream before they are broken down, so it may in part be responsible for autistic behaviors. Many parents of children with ADD/ADHD as well as those with autism report that treatment for candida does improve their children's behavior and concentration. Q: How do I treat for candida? A: One approach is to ask your pediatrician for a course of Nystatin, which is a non-systemic (not absorbed into the bloodstream) anti-fungal. Taken orally, it works locally in the gut to fight candida. This medication is considered to be quite safe, even when taken for several months. For a 25-35 lb. child, ask the doctor for a prescription for Nystatin powder (125,000 units per cc) in a stevia base, starting with 1 cc 4x/day. Your local pharmacy probably carries a commercial preparation in a sugar base - this feeds yeast! Again, try Pathway, at 1-800-869-9160. "Probiotics" such as acidophilus, the natural bacteria found in yogurt, are other candida-fighters, and are available at the natural foods store in powdered form in the refrigerated section. Some acidophilus preparations are milk-based - be sure to get one that is not! Bifidus works in the large intestine and can be of great benefit. "FOS" is desirable in these supplements, as it feeds the probiotics. Q: Aren't probiotics the "healthy flora" I've heard about? A: Yes, they compete with candida for the sugars you eat. It's the "good bacteria." You may be aware that acidophilus is eradicated from your gut when you take antibiotics. Q: That's why you're supposed to eat yogurt when you are on antibiotics! A: Exactly. As a matter of fact, in the 1950's, when oral antibiotics were first prepared for general use, scientists knew about this candida problem and coated the tablets with Nystatin. After a few years, the FDA decided that the two drugs should be prescribed separately (which they never were) and made them stop. Q: My friend's child tried Nystatin and it made him vomit. If Nystatin is so safe, why did he react to it? A: The child may have experienced a "die-off reaction" to the candida. As it dies, candida releases toxins into the bloodstream and can cause nausea, vomiting, or diarrhea. It is likely that candida was indeed a problem for this child. Your friend should discuss a dosage change (starting with a low dose and working up to a "normal dose") with the prescribing doctor. Q: My doctor has never heard of any of this and she is extremely skeptical. I'm embarrassed to tell her I'm considering this approach. A: Skepticism is a good thing in a medical doctor or scientist. However, since there is preliminary evidence to support this safe, non-invasive intervention, it is up to you to educate her, state your wishes, and ask for her support. For a doctor, it is better to wait until all of the data is published in peer-reviewed journals before advocating a treatment. For a parent, it is reasonable to want to help one's child without waiting for all of the results of the "double-blind placebo" studies. Because this approach does not include any unusual supplements, invasive drugs, or expensive treatments, your pediatrician should be supportive. Explain that you would like to try this for a few weeks, and agree that you will be objective about recording your child's progress while on the diet. Q: Where can I find support? A: It is likely that other parents in your area are already aware of this intervention. Forming a support group, or forming a local chapter of Parents of Allergic Children may be a good option. There are also several support groups for the biological treatment of autism on the Internet (search "Autism and Diet,") as well as support for a gluten free diet (search "Celiac Disease.") Good luck!
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