PREFACE

This article is a synthesis of what I have experienced and learned during the past three years, and which has helped our family. I have not invented or discovered any of these nutritional measures; indeed I am deeply indebted to the past and present scientists and physicians who have researched nutritional interventions for mental illness. Nothing in this article should be taken as medical advice; it should be taken as an indication of paths that may be fruitful for you to follow up, in consultation with your physician. I hope sincerely that some of this information may lead you and your child to a better life.

INTRODUCTION

A little over six years ago, my husband and I adopted three children from Russia. All were affected by prenatal alcohol exposure, and showed a range of health problems and learning and behavioral difficulties. Three years post-adoption, we were exhausted from the stress of supervising our older hyperactive, destructive, dangerous son, trying to reach the younger one who was becoming increasingly autistic, and at the same time help our daughter who was sweet but spacey. Then a trusted friend told us about how nutritional approaches had helped her son, and we began to research the medical literature to learn more. As biochemists, we were quite surprised to learn that much is known about nutrition with respect to learning and behavioral problems, and we read much that might apply to our children with FASD. To make a long story short, we found some surprisingly simple nutritional measures that have made an enormous difference in our lives. In this brief article, I would like to summarize approaches that we and a few other FASD parents have found useful. These include the gluten-free casein-free diet, other measures to improve digestion and intestinal health, identifying food allergies or intolerances, vitamins and high-dose vitamin therapy, and essential fatty acids. I encourage you to read this article carefully, and if any of these ideas sound like they might work for you, to discuss a trial with your doctor.

BACKGROUND--OUR STORY

We adopted our three children, siblings, six years ago in Russia. Misha was three years old; the twins, Nata and Vova, were sixteen months. The first day we met, Misha was running back and forth screaming nonsense words and spit on the floor in front of my feet. This was pretty much Misha for several years. He was hyperactive, destructive, oppositional and dangerous to himself and others. He would impulsively pick up a stick and strike somebody in the eyes, me or his grandmother or the babysitter. He didn't seem to care about his family, though he was charming to strangers. He didn't learn from experience, repeatedly doing the same things that had frightened or hurt him. He had a high pain tolerance, and was always covered with cuts and bruises. Family and friends unofficially diagnosed him as "crazy." As he grew older, Misha began to have nose-twitching and shoulder-jerking tics, and to walk on his toes. He would jump up and down, flapping his arms, screaming, "Jump, jump, jump!" He started to run away from people and hide in cupboards and under the furniture.

At adoption, Nata made not a sound, she didn't even cry. She was very serious, but caring about people and she quickly bonded to me. Her twin, Vova, was volatile, either crying or giggling manically with his eyes rolled up to the ceiling. His social interactions were strange; he never made eye contact, and would kick or bite people and seem astonished at the yells of pain elicited. If he wanted a toy, he would sometimes take my hand and place it on the toy, as if my hand were a tool for getting toys. As time went by, he would sit and spin the wheels of a car rather than driving it. He was very sensitive to noise and would cover his ears if I turned on some music. When stressed, he crawled around in small circles meowing like a cat.

When we first saw them, the children were small, with swollen bellies and hair that pulled out in clumps. They threw up frequently and had liquid stools after each meal. Their breath was terribly foul in the mornings. In the ensuing months, they developed a rash on the cheeks and around the mouth. Ear infections and bronchitis were constant. They all slept poorly. Misha "slept" with open glassy eyes four or five hours a night. Nata awakened screaming up to seven times a night. When she learned to talk, she would cry, "My feeties hurt," but there was no sign of muscle tension or cramps.

Naturally we consulted dozens of doctors, generalists, psychologists, psychiatrists, neurologists, etc. They told us everything was fine, and the children just needed love. As we began to learn about FAS, and the frequent co-occurence of hyperactivity and autism, we knew our children had big problems and the future was not bright[1].

Then I heard from a friend about dietary measures that had helped her child and began to research the internet and the scientific literature. I read everything I could find on nutrition as related to hyperactivity, autism, schizophrenia, bi-polar disorder: the whole range of disorders which overlap the usual FAS symptoms. As a scientist, I wanted rational, reasonable ideas - and I found them. We began with some blood, hair, and urine testing, and over time, began to attack some of our problems from a biochemical angle. To make a long story short, we are now seeing the slowly unfolding miracle of watching our children develop into happy succesful human beings.

Misha, at nine, is now in a normal second grade class. We changed country and language (again!) last summer (to the Netherlands), so we expected to lose some academic time. But by Christmas Misha was speaking Dutch well. His first report card gave him low marks on behavior, but this has improved to "good" on his most recent report. He is doing well academically, though his spelling in Dutch is rather sketchy. He has lots of friends, and even a girlfriend, a lovely young lady in his class. He is (mostly!) thoughtful and helpful around the house. He is developing into a fine soccer player, and enjoys playing chess with friends and siblings. He is reading well in English, and is currently devouring the "Famous Five" adventure series by Enid Blyton.

Nata is a beautiful happy little girl with lots of friends. She plays soccer and baby-dolls and Barbies after school. After some early help with sensory-motor issues, her coordination is now alright for her age. She loves to ride her bike, roller-blade, ice-skate, and is currently learning to walk on stilts. She has a bit of a problem with speech, and needs extra help with her schoolwork.

Vova is our miracle boy, who has gone from being a cat to a seven-year-old boy in two years. He is finishing first grade with his sister, and has also many friends. He is in love with somebody, but he won't tell me who! He is becoming a soccer maniac, and plays whenever he isn't riding his new bike or playing hockey with the big boys on rollerblades. He is not very good at arithmetic, and requires extra help at home with this. He still requires Pull-Ups at night, and is sometimes a bit of a crybaby, but we hope he will grow up with a little more time.

Below I will explain the nutritional measures which have helped us and other children with FAS, ADHD, and autism.

THE GLUTEN-FREE CASEIN-FREE DIET

What is the GFCF diet?

GFCF stands for Gluten-Free Casein-Free. Gluten is a protein found in wheat, rye, oats, and barley. Casein is a protein found in milk; not to be confused with lactose, which is a sugar found in milk and causes problems for some people. In the GFCF diet, all products containing gluten and casein must be strictly avoided. This diet has been used for many years now with people who have schizophrenia[2] and children with autism[3]. Those who need this diet show big improvements in eye contact and social awareness, as well as reductions in repetitive behaviors, aggression and self-injurious behavior. Recently there is an upsurge of interest, as recent scientific research shows how and why it works.

Why are gluten and casein a problem?

There are at least two clear problems. First of all, in some children, gluten is toxic to the intestine, similar to classic celiac disease, causing cramps, nausea, diarrhea or constipation, and poor absorption of nutrients from food. These children may show signs of malnutrition, such as swollen belly, thin arms and legs, skin rash, mouth sores, etc.

Second, and most shocking is that in some people, the proteins gluten and casein are not completely digested, leaving small protein fragments called peptides. Certain of the peptides derived from gluten and casein get through the intestinal wall into the blood stream, and are carried to the brain, where they have opioid activity--that is, they act like morphine! People with this problem are actually addicted to the gluten-derived opioid peptides (called gluten exorphins) and casein-derived opioid peptides (known as casein exorphins or casomorphins). While under the influence of the opioids, the child may not feel pain, and may seem spacey. As the dose of the opioid peptides wears off, the child goes into a withdrawal state, just like a drug addict, and may behave in an agitated or aggressive manner.

Is this gluten problem like celiac disease?

It is probably somewhere on the spectrum between classical "celiac sprue" and the less clear manifestions which are currently being called "atypical celiac disease." People with the atypical form of the disease may show no gastro-intestinal symptoms at all, only malabsorption of nutrients[4] or neurological symptoms such as ataxia (lack of coordination in walking)[5]. Many children who have the opioid peptide problem show up positive on tests for celiac disease, but not all do. My children's blood tests were negative for celiac disease. Note that celiac patients who do not follow a gluten-free diet have a high rate of mental illness and epilepsy[6], suggesting again that gluten or gluten-derived peptides can have mental effects.

What is the scientific evidence that opioid peptides from gluten and casein can have mental effects?

It would be difficult to design a study that would show incontrovertible "proof" that psychosis can be caused by opioid peptides. We simply do not know enough of about the biochemical causes of psychosis, which certainly vary from one person to another. But the lines of evidence are strongly suggestive that in some cases, there may be opioid involvement. (Recently reviewed in [7]). Let us examine these lines of evidence.

Opioids have long been suspected as a cause of psychotic behavior. Opioid involvement in schizophrenia and autism has long been suspected, based on behavioral observations and on the fact that naloxone, an opioid receptor blocker, is often effective in reducing psychotic symptoms[8]. Both endogenous (made within the body) and exogenous (coming from outside, such as food) opioids have been investigated as possible causes of psychosis.

Casomorphins and gluten exorphins are strong opioids. For many years it has been recognized that small peptides derived from partial digestion of gluten and casein have strong opioid activity[9][10]. Analogs of casomorphins have been intensively studied with a view to improving analgesic and other possible therapeutic effects[11][12]. The opioid-related activies of milk-derived proteins have recently been reviewed[13].

Opioid peptides arise during normal digestion of milk and wheat. Casomorphins have been identified in the small intestine of young men who ingested milk[14]. In vitro studies (test tube studies) have shown that digestive enzymes can release opioid peptides from casein and gluten[15][16].

Opioid peptides cross the intestinal barrier. Proteins are not always completely digested, even in normal persons. There are mechanisms which transport large peptides or intact proteins into the bloodstream in small amounts in normal people[17]. These small quantities may nevertheless be biologically significant in the case of potent peptides. In addition, large peptides or proteins "leak" between the epithelial cells in the case of intestinal damage, such as celiac disease[18]. Developmental stage also plays a role in presence of proteins in the blood, as infant animals have a more permeable intestinal wall than adults do[19].

Many physiological processes are regulated by opioids. Opioid receptors are found in the intestinal wall, as well as in the nervous, immune, and endocrine systems. These receptors may be activated by endogenous opioids such as endorphins or exogenous opioids such as the casomorphins and gluten exorphins. These dietary exorphins have been shown to exert both opioid-related and non-opioid related activities in the digestive tract as well as other bodily systems[20][21][22][23][24]. Newborn mammals have relatively permeable intestines, which permits casomorphins to pass into the blood stream. Animal studies have identified casomorphins in the blood of newborn calves after nursing[25], and in the blood of young puppies but not in in adults after milk ingestion[26]. Relative to non-pregnant normal women, normal pregnant and nursing women have higher levels of casomorphins in the blood plasma and in cerebrospinal fluid, where they may act as hormones[27][28]. It is therefore commonly supposed that casomorphins play a normal role during pregnancy, lactation, and early infancy[27].

Casomorphins are transported across the blood-brain barrier (reviewed in[29]). Rat studies have shown an effect of casomorphin on reducing pain sensation[30]. Another study showed the presence of casomorphins in the brain stems of eight human infants[31].

Peptiduria in psychosis. We know that psychotic persons excrete large amounts of peptide opioids in the urine, which arise from gluten, casein, and perhaps other sources, and that remission of psychotic symptoms corresponds with reduction of peptiduria and reduction of opioid peptides in the urine[32][33]. Very high levels of human casomorphins have been identified in the blood and spinal fluid of women with post-partum psychosis, suggesting psychiatric effects from the opioids[34]. High levels of human casomorphin were proven by sequence analysis to be present in the milk of women with post-partum psychosis[35].

Proteolytic enzymes such as dipeptidyl peptidase IV (DPP IV) degrade casomorphins as well as other peptide hormones. Changes in DPP IV activity are believed to play a role in psychiatric illness[36]. Studies showed that one strain of rats, with normal renal (kidney) DPP IV activity, excreted no casomorphins in the urine. But another strain, with no renal DPP IV activity, excreted large amounts of casomorphins[37], showing that DPP IV is necessary to prevent high levels of casomorphins. Children with celiac disease have low levels of DPP IV in the intestines[38]; this may contribute to an increased load of casomorphins. DPP IV activity has apparently not been studied in children who have FASD, but abstinent alcoholics had significantly lower DPP IV activity than normal controls[39], which might not allow normal degradation of exorphins.

Another factor in high urinary peptide loads may be abnormally high intestinal permeability, which allows more than normal quantities of peptide material into the bloodstream - perhaps more than the normal breakdown pathways can handle. High intestinal permeability has been demonstrated in children with autism[40].

Thus faulty degradation of peptides in digestion or during cellular metabolism may permit higher levels of opioid peptides in the human body than are normal. If opioid levels in the brain are also high, they may cause behavioral changes. This was shown in a study with mice who were fed gluten exorphin; they showed various behavioral effects[41].

High rates of mental illness in untreated celiac patients. People with celiac disease require a gluten-free diet, and some must also avoid milk, in order to avoid symptoms[6]. Celiac patients who do not follow a diet have higher than normal rates of epilepsy, depression, and psychiatric symptoms6. Children with celiac disease may have brain lesions[42]. Some studies have shown a high rate of undiagnosed celiac disease in elderly patients with dementia[43]. This would seem to indicate a role for intestinal damage and/or gluten-derived peptides in mental disorders.

Positive results of GFCF diet in schizophrenia and autism. Studies have shown a reduction of psychotic behaviors in schizophrenic[2] and autistic[3] persons following a strict gluten-free casein-free diet[44]. Many parents of children with autism also have documented a clear improvement in their child's behavior on a gluten-free casein-free diet.

The full story is not in yet. Few good dietary studies have been performed due to the difficulty of maintaining large groups of people on such a strict diet, and the problems of deciding what constitutes improvement. This has led to the criticism that "the diet has not been proven," especially for children with FASD, as there are no published studies on this group. But we can easily measure the presence of opioid peptides in the urine with a laboratory test[45], and a trial of the diet is neither dangerous nor expensive. You can prove for yourself if this diet helps your child or not.

Several studies would seem to counter the concept of a dietary contribution to psychosis. One study failed to show that casomorphins could be addictive in rats; but perhaps normal adult rats degrade the casomorphins rapidly[46]. Probably only persons with defective peptide degradation would build up enough opioid peptides to have mental effects. Another study failed to show any effect of gluten challenge in children with autism maintained on a gluten-free diet[47]. However, these children were still using milk, so were getting opioid peptides from the diet, and a higher dose of exorphins showed no increased effect. Experience has shown that people who have an opioid peptide problem need to be free of both gluten and milk.

How do I know if my child needs this diet?

You can either just try it or get a urine test done. Signs that your child may need the diet include mood swings from calm to hyperactive or aggressive, reduced or absent sensation to pain (though they may be hypersensitive to light touch), self-injurious behavior, not noticing that they are cut or hurt, poor eye contact, sometimes doesn't seem to listen or hear you, eyes sometimes very dilated and sometimes pinpoint pupils, glassy-eyed, frequent stomach pains, nausea, diarrhea or constipation, sticky unformed stools or fatty fluffy stools that float and are not easy to flush away, swollen belly after meals, night sweats, bright red ears and nose. Some children eat very little - but that little consists solely of foods containing gluten and milk. My children ate everything, but that everything included over a quart of yogurt every day. Some people have unconsciously fallen into the habit of giving their child a glass of milk or a piece of cheese whenever the child gets fussy or difficult; these children are being calmed by potent opioids! If you would rather have a urine test to see if your child has an opioid peptide problem, you can order a test kit from Great Plains Laboratory, one of the few labs that performs this test[45].

What kind of results can I expect from the GFCF diet? How long does it take to see results?

This is not the overnight miracle cure, but rather the diet will help your child feel better and experience the world more normally. Realize that your child has actually been on drugs, and has been experiencing the drug high followed by the lows of withdrawal. Your child may go through a few difficult days when you begin gfcf as withdrawal from the opioids sets in. Usually the first improvement is to lose the glassy-eyed look, and begin to make eye contact. The child becomes more aware of other people, and more in control of his/her emotions. The child has fewer stomach aches and stools firm up. The child becomes happier, calmer, and sleeps better. Some people notice an improvement in their child's behavior within a few days or weeks, sometimes it takes some months. According to Dr. Reichelt, one of the pioneers in this research, it can take seven months for the body to get rid of all the stored opioid peptides. Naturally the diet must be kept very strictly to see results; this means reading food labels and avoiding all products that contain wheat, rye, oats, barley, but also wheat starch, food starch (which may contain wheat starch), and all products containing milk, such as ice cream, cheese, butter, and anything that says it has milk protein or casein, such as many sausages.

What must we avoid?

You must avoid wheat, rye, oats, barley, and milk products. Triticale and spelt are also forms of wheat. Beware of wheat starch or other unidentified starch. Watch out for malt, which is usually made from barley. Soy sauce may contain wheat. Dried fruits are sometimes dusted with flour to facilitate packing by machinery, and this is not mentioned on the label; thus check with the manufacturer or buy fruits that are oiled to prevent sticking. Beware of "hydrolyzed vegetable protein" which may mean gluten. Beware of anything with "milk solids" or casein or whey. Many children are also sensitive to soy. My Misha gets nauseated with soy milk or ice cream or soy-containing pasta, but he can use soy sauce.

What can we eat?

As for grains, you can use rice, millet, buckwheat, corn, sorghum, amaranth, and quinoa. You can buy or mix up your own gluten-free flours made from bean flours and the gluten-free grains. You may be able to buy gluten-free bread in a health-food store if you do not wish to make your own. Rice cakes make a good bread substitute. Gluten-free pastas are widely available. Check out your local health-food store and celiac mail-order sites.

You will need a source of calcium when removing dairy from the diet. Check the recommended daily allowance in your country. There are milk substitutes available made from soy, rice, or potato, some of which are calcium enriched. Use a dairy-free margarine and cooking oils or lard in baking. Many grocery stores have soy milk ice cream, pudding, and yogurt, and you may find delicious dairy-free sorbets. We make the most marvelous ice cream with coconut cream and rice milk.

Beyond avoiding gluten and milk, your child can eat anything else that doesn't cause allergic or other reactions (see section below on food allergies and intolerances).

Celiac websites are great sources of recipes and information. There are many mail-order sites for buying gluten-free flour mixes or ready made breads, cookies, and pastries. The cookbooks by Bette Hagman are wonderful. We rely very heavily on her "Four Flour Bean Bread" in her newest book, The Gluten-Free Gourmet Bakes Bread. The dough is like a cake batter, and is mixed in three minutes with a hand-held electric mixer. You may wish to consult a nutritionist familiar with celiac disease for recipe ideas and local resources.

How strictly must we keep the diet? What if my child gets some gluten or milk?

You must keep this diet absolutely 100% - and you will soon see why. After a few weeks, when life is beginning to calm down but you are not quite sure yet if the diet is helping, your child will get a normal cooky or some cheese at the neighbor's house, and within a few hours will go wild. Reactions tend to range from wailing, difficult, hyperactivity to aggressive biting or hitting. It will take several days to several weeks for the reaction to gradually subside, depending on the child and how much gluten or milk he/she got. Some children go wild for weeks with one crumb of normal bread.

We have now been on diet for over two years, and our digestive tracts seem less sensitive than they used to be. Actually, the last gluten infraction in our family was over a year ago, and involved no more than a few days of diarrhea. We now use soy sauce which has "wheat" listed as an ingredient, and seem to suffer no ill effects from it. We even occasionally use a little bit of fresh cheese, which allows us a pizza once in a while, but hard aged cheese results in a psychotic outbreak. But recently we exaggerated; I gave the kids some normal dairy ice cream - all the kids lost their pain sensation, and Misha cut his finger badly with a saw without realizing it. It took over a week for normal pain sensation to return.

Some people find they can cheat occasionally on the diet by using a digestive enzyme supplement which helps digest the opioid peptides. One study reported improvement with Enzymaid[48]. SerenAid has been widely used and is available from Klaire Labs[49]. Enzyme supplementation can help you survive the occasional social event but is not meant to replace the diet for daily use.

Is the gfcf diet healthy?

You will need a source of calcium when removing dairy from the diet. There are many ways of getting calcium, such as chewable or swallowable tablets and calcium-enriched soy milk or orange juice. You may wish to give a multi-vitamin supplement to ensure adequate B vitamins if you formerly relied on enriched cereals or whole wheat for the B's. Otherwise, the diet has no risk of being unbalanced. Indeed, your child is likely to become healthier than ever before, as the state of intestinal health improves.

What if we see no improvement after a few weeks?

Some people take longer than others to show improvement. In general younger children respond faster. We found no improvement until diarrhea went away, which was two weeks for Misha and six weeks for Vova. However, take a second look at what your child is eating. Is there wheat starch in the baking powder? in the ketchup? Casein or milk solids in the margarine? Have those raisins been dusted with flour to facilitate packaging? (Raisins that look a little dry may have been packed with wheat flour, which is not listed as an ingredient. Use raisins that have been oiled; these appear shiny). Does that bouillon cube contain hydrolyzed vegetable protein, which may be gluten? Do those cornflakes contain malt (usually made from barley)? Is your child getting gluten-containing cookies or sandwiches at the neighbor's house? Do your vitamins or medications contain wheat starch (or colorants which may make your child wild--see section on Food Allergies and Intolerances below)? Does your hand cream have "oat milk" which your child may ingest while sucking his/her thumb? Is there "wheat protein" in your shampoo? What is in your brand of play dough?

My neighbor's child was on gfcf (or Feingold or other), and the child was no better.

Some children, like mine, have serious problems with more foods than gluten and dairy. So a child who is off one or two problem foods may still be having such serious problems elsewhere that he/she still acts hyperactive/autistic/FASy. It does take some time, serious observation, and devotion to identify all problem foods. There may also be other problem exposures. My Vova recently went psychotic again (scarey!) after a long wait at the hairdresser, where it smelled strongly of chemicals. At first he was whining and sitting on my lap; by the time we got home, he was giggling manically while he crawled around on all fours. It took almost a week for this to wear off.

What about medications?

You should of course continue with all normal medications as you begin gfcf. Just be sure they contain no gluten or milk, and watch out for colorants if they pose a problem for your child. After a few months, you may find it possible to reduce doses of psycho-active medications, always in consultation with your doctor. Note that naloxone blocks the effects of opioids, and that clonidine is used to ease opioid withdrawal in the treatment of drug addiction. If your child uses these medications, it may be a clue that he/she would profit from a gfcf diet. Do not stop or reduce medications without your doctor's advice.

What about social events and vacation?

My children have a very active social life. All the neighbors know they can give my children fruit or certain brands of acceptable candy. The teachers at school know about our diet, and they have a supply of goodies (which I furnish) in case of impromptu parties. For birthdays or school festivals, I ask what kind of food will be served, and supply gfcf substitutes as necessary. For example, if they are having spaghetti, I take along some gluten-free spaghetti. One of our trickiest occasions was a restaurant dinner party for the grandparents' golden wedding anniversary. The restaurant agreed to give us meat and vegetables without gravies and sauces, but forgot to leave the custard sauce off the dessert for us. Luckily, I had gluten-free cookies in the back of the car, which my darling children arranged on an ashtray and shared with all the guests and even the cook before I realized what they were doing! They told everybody sweetly that "These are gluten-free."

As for eating out, in the US it should be easy to find Mexican, Indian, or Chinese restaurants with a range of acceptable food available. Even in other restaurants, it is possible to get meat without gravy, a baked potato or rice, and plain steamed vegetables or a salad, and a fruit salad for dessert. Take along some gfcf bread or cookies; restaurant personnel understand if you explain that your child cannot eat wheat. After all, many celiac patients are adults with social lives and business lunches, and they manage to eat out!

Many children tolerate the occasional "cheat" if they take SerenAid, a digestive enzyme supplement designed to digest opioid peptides. This is available from Klaire Laboratories[49].

Our personal experience is that if we go away for a weekend, I take along a loaf or two of gfcf bread and a few packages of rice cakes. As for vacation, we just came back from two weeks in Greece. I took along gfcf sandwiches for the train trip to the airport. We had specified a "celiac" meal when reserving our flight, so we had a hot meal onboard. We had an apartment with kitchen in a vacation village, so I took along my gf flour mix and a bread pan and baked my bread as needed. The hotel kitchen was not very busy, so one day I asked the cook to fry some fish with some of our gluten-free flour. It was delicious! On other days, we ate plain grilled fish or chicken, with baked potatoes or French fries, and vegetables cooked with olive oil.

In the first months of the diet, my children did try to steal gluten bread or cookies, and would whine if they couldn't have ice cream like the other kids. But after a few dietary infractions which resulted in cramps, diarrhea, nausea, and/or psychotic behavior, they learned that the momentary pleasure of the gluten or milk is not worth it. Besides, they know if the other kids are getting candy or cookies or popsicles, they can come home and get some that will not make them sick.

Having three children on the diet helps, too. They don't feel alone or different. And they each remember how crazy the other ones used to be, so they won't allow their siblings to eat any gluten or milk.

Can the diet be more flexible later on?

Some people say yes, some say no. Dr. Reichelt, an expert on the gfcf diet, counsels waiting until puberty and re-introducing gluten or milk very gradually if you wish to try it. Most people will need gfcf for life, but may become a bit less sensitive. We now occasionally use cooked fresh milk products, such as a cooked pudding or yogurt made from boiled milk or a fresh cheese. This allows us a monthly real pizza or dairy dessert. However, hard cheese such as cheddar will result in wild psychotic episodes within a few hours.

Has this diet been proven to help children with FASD?

To my knowledge, there has been no research specifically applied to children with FASD with this diet. But I know of several who have been helped.

My husband/doctor/mother-in-law thinks this diet is nonsense.

Well, I will admit I did too, when I first heard something about a milk-free and gluten-free diet helping children with autism. But when I looked into the scientific research literature, I was convinced that there is something to it, and, as it is neither dangerous nor expensive, we decided to give it a try. Some people are convinced by the scientific literature, some are willing to try it and see. You will need family solidarity to begin this diet, but even the skeptical may agree to give it a serious three-month trial.

IMPROVING DIGESTION AND INTESTINAL HEALTH

FASD is more than "just" brain damage. We sometimes forget that prenatal alcohol exposure has damaged not only our children's brains, but their digestive tracts as well[50][51][52]. They often show serious signs of disordered digestion, such as gastric reflux, stomach pains, abdominal distention after meals, diarrhea, steatorrhea (fatty floating stools due to poor absorption of fat from food), foul-smelling stools, vitamin deficiency due to poor absorption of nutrients. They may have problems with sucking, chewing, and swallowing. We have found it worthwhile to make food easily digestible and to take measures to improve digestion and boost the "good" bacteria in the intestines.

Cooked foods. In cases of malabsorption of nutrients, my nutrition textbook[53] advises measures to improve digestion and avoid gas. Meat should be well-cooked and minced to ensure adequate digestion. Consumption of fiber should be minimized to avoid gas formation. White bread and rice are recommended. We use only cooked foods, which are easier for the body to digest (think baby food). In order to avoid gas formation, we do not use beans and onions, but use split peeled lentils and mung beans from Indian and Asian stores to make purees and soups which are low in roughage and easy to digest. We use applesauce and cooked pears and cooked carrots rather than the raw forms. White rice and basmati are easier for delicate digestive systems to handle than brown rice (again think of what you would feed a young baby). We are often told that raw vegetables and brown rice contain more vitamins, yet if the child's damaged digestive tract cannot process these foods, he/she will derive no benefit from them.

Light evening meal. If possible, eat the biggest meal of the day at noon, when digestion is at its best, and have a lighter evening meal. We eat meat and vegetables at noon, and soups and gfcf bread in the evening. We find the digestive tract handles this better, we all sleep better and have pleasant dreams.

Digestive spices. Ethnic cuisines use many spices in their cooking, which not only taste good but stimulate the secretion of digestive enzymes. You want to minimize or eliminate cayenne pepper for babies and irritated intestines, but ginger, cumin, turmeric, etc. improve digestion by stimulating the action of intestinal and pancreatic enzymes[54][55]. For gas, chew a pinch of fennel seeds and swallow, or brew a cup of tea from a teaspoon of fennel seeds per cup of boiling water, and let steep for five minutes. For heavy feeling of indigestion, chew a piece of candied ginger. Check out Indian and Middle Eastern cookbooks for recipe ideas.

The old sugar problem. We find a problem with sugar beyond a minimum of a teaspoonful in a cup of herbal tea daily. We now have a real dessert (pie or cookies or cake or candy) only about once a week! That is, the kids do; I must admit to sneaking some after they are in bed. So what do I mean, a sugar problem? (That means honey and dried fruits and an excess of fresh fruit and all the other sugars we have convinced ourselves are "healthy.") The most evident problem with my daughter was a permanent state of vaginal infection and fungal infections of the nails. Yes, we used anti-fungal creams and medications, but could never really get rid of the problem. As soon as we stopped the medication, it all came back. The problem is that yeast is opportunistic, and will happily spring back given half a chance, like a bunch of sugar in the gut! The boys and my daughter also had itchy behinds at night, apparently due to the acid environment from yeast. Now that the kids are on the strict minimum of sugar, these problems are much, much better. We are used to eating applesauce made from cooked, sieved apples with no sugar added, or delicious compotes made of cooked apples and raspberries, pears, cranberries - whatever I have on hand. When I do make a pie, I use only about 1/3 of the amount of sugar called for in the recipe.

Intestinal flora. Many of the "good" bacteria do not form permanent colonies in the intestine; they need to be regularly replenished. Since we can't eat yogurt with all those healthy lactobacilli, we now use supplements of intestinal flora. Other sources of "good" bacteria are fresh naturally fermented sauerkraut or pickles.

FOOD ALLERGIES AND INTOLERANCES

After you have got the GFCF diet under control for a few months, you should begin to see improvement in behavior and emotional stability. But you may begin to notice, as we did, isolated instances of problems, such as crying episodes, red ears, big circles under the eyes, red nose, upset stomach, nausea, etc. At this time, you may want to start keeping a food diary, to try to identify the cause. Over time, we have found several problems: Misha gets nauseated with soy milk, and diarrhea from red beets or even red beet coloring used in some vitamin pills or candies. Artificial colorings make Nata throw up or lose bladder control. Beet sugar sends Vova into an afternoon of wailing. You may eventually, as we have done, get back to your basic healthy diet that everybody knows we ought to eat, but don't: only fresh foods, no colorants, additives, preservatives, extremely little sugar.

Are all food additives bad?

No, but many people find a problem with certain colorants and preservatives. The Feingold Association[56] is a marvelous resource on information concerning which food additives may be a problem. They also provide information on foods containing natural salicylates, which can provoke hyperactivity in certain children.

Why not just get allergy tests?

Typical allergy tests, such as skin prick tests and various blood tests, are often not very helpful regarding foods. There are several reasons for this: First, the reaction may not be a true allergy; that is, maybe it does not involve antibodies. So an allergy test would show nothing, yet the food actually makes your child feel sick in some way. Second, the skin may not show a reaction, but the gut may. Third, the body may react to a form of the food that is not being tested. For example, you may have a reaction to the raw food, but no reaction when it is cooked. The whole question of allergy, intolerance, and testing has been recently reviewed in a scholarly readable article available on-line[57].

How can we identify food allergies or intolerances?

The medically recognized "gold standard" of food allergy testing is the "elimination/challenge"[58]. If you suspect a food of causing a reaction, eliminate the food from the diet for a week or ten days, then give a "challenge meal" consisting only of this food. Observe for reactions such as red nose or ears, sniffly nose, hyperactivity, increased pulse, uncontrollable giggling or crying, etc. This sort of testing should not be done with foods known to cause a life-threatening reaction. The book Is This Your Child? Discovering and Treating Unrecognized Allergies in Children and Adults, by Doris Rapp, M.D. explains in detail how to identify food and environmental allergies/intolerances.

VITAMINS AND HIGH-DOSE VITAMIN THERAPY

Vitamin recommended allowances were set as a minimum daily dose for normal healthy people, but many of us are not even getting the minimum. Numerous studies have shown deficient blood levels of vitamins in various segments of the population[59]. Studies have shown an improvement in cognitive function in children with mental retardation who were given something so simple as a normal daily multi-vitamin tablet[60]. Thus there are several reasons to take a good hard look at your child's vitamin status. First of all, due to digestive problems and malabsorption of nutrients, your child may not derive even a minimum daily allowance of vitamins from a "normal" healthy diet. Second, many children with FASD are picky about their food and are not eating even a "normal" healthy diet. Third, stress, illness, sleep deprivation, and certain medications deplete vitamin stores rapidly. Finally, for genetic reasons, some people do require more than the recommended daily allowance of a particular vitamin (more on this below). High doses of vitamin B6, for example, have been shown to be frequently beneficial in mental illness.

Signs of vitamin deficiencies. The earliest signs of vitamin deficiency for many vitamins include feeling fatigued and depressed. With moderate deficiencies, clinical signs appear which are more or less specific for each vitamin or group of vitamins. You can find descriptions of vitamin deficiency symptoms in many nutrition books or in the Merck Manual, a highly respected medical reference which is available on-line.

My children showed several signs of nutritional deficiency: bright red tongue and rash around the mouth (vit B3 deficiency), hard pimply spots on outside of upper arms and thighs (vit A), tingling hands and feet (typical of lack any of the soluble B vitamins), no dream recall (B6), aphthous ulcers (irregularly shaped blisters on the gums, typical of general malnutrition), white spots on the fingernails (zinc), they bruised easily and had frequent copious nosebleeds (vit K). Blood tests showed them to be seriously deficient in almost everything, including calcium, though they ate over a quart of yogurt daily and took a children's multi-vitamin tablet. They were deficient in vit K, which is normally impossible, as intestinal bacteria provide vit K in normal healthy people. In retrospect, I see that their malnutrition was due to the constant diarrhea resulting from gluten intolerance. The intestinal flora was certainly also disbalanced, as shown by the serious deficiency of vit K. Elimination of gluten and giving at least recommended daily allowances of all vitamins and minerals has eliminated signs of deficiency for us.

Blood tests may be useful for indicating serious deficiencies, but a "normal" blood level of a given vitamin does not necessarily mean that the vitamin is provided at adequate levels in the cells where it is needed and to the enzymes which require it. For more information on this issue, see the section below on High Dose Vitamin Therapy.

Malabsorption of nutrients. Intestines damaged by prenatal alcohol exposure may not be able to absorb nutrients efficiently. This is a problem also encountered in adult alcoholics, who need extra vitamins, notably B1 to avoid brain damage (Wernicke-Korsakoff syndrome). In addition, if the intestine is sensitive to gluten as in celiac disease, the tiny little finger-like projections on the surface of the small intestine (microvilli) are flattened, so that the effective surface for absorption of nutrients is greatly diminished.

Poor diet. Many children who have FASD will eat only one or two foods, or perhaps eat practically nothing.

Stress, illness, sleep deprivation, medications. The body may transiently require more vitamins during periods of unusual stress. Also certain medications can cause peripheral neuropathy (tingling and numbness in hands and feet), apparently by depletion of vitamin B6. Thus with these medications, modestly high doses of B6 (pyridoxine) may be given preventively[62]. In addition, neuroleptics, especially the older ones, can cause tardive dyskinesia, which in some cases responds to treatment with vitamin B6[63].

High dose vitamin therapy. Some people, for genetic reasons, may require very high doses of certain vitamins. This does not mean that everybody should take large doses of any or all vitamins; this is not only unnecessary, but dangerous. However, there are many studies showing that certain people do need one or another vitamin in high doses to boost the activity of a deficient enzyme[64]. Research has shown that these enzymes are defective in binding the vitamin co-factor, but that radically increasing the vitamin concentration in the body may force the enzyme to bind some of the vitamin and allow some recovery of enzyme activity.

Vitamin B6 (Pyridoxine) and the B6-B3-Tryptophan connection. High dose treatment with vitamin B6 (pyridoxine) has been used for many years in drug-free psychiatric therapy. Studies have shown benefits in certain patients with mental retardation, seizures, autism, and in schizophrenia (reviewed in ref[64]). In a survey of approximately 4000 parents of children with autism, treatment with B6 and magnesium received high ratings for behavioral improvement[65].

The specific mechanism(s) of action have not been studied in most patients who respond to B6 therapy, but we know that B6 plays a central role in many of the pathways for the metabolism of tryptophan, an amino acid derived from protein in the diet. Tryptophan is the precursor for serotonin and melatonin, and is also used to make vitamin B3. Our bodies cannot make enough B3, so it is also an essential vitamin in the diet. In fact, if we eat enough B3, we can preserve the supply of tryptophan for making serotonin and melatonin[66]. The tryptophan metabolic pathways are quite complex, and well-studied. It has been shown that deficient enzymes can result in a build-up of neurotoxic intermediate products in the brain (reviewed in ref [67]), which suggests again that adequate B6 supply to the brain is important.

Our personal experience with high doses of vit B6 began when a blood test showed the children to be seriously deficient. At that point, Misha had verbal and bodily tics (snorting uncontrollably, repeating idiotic phrases endlessly, nose twitches and shoulder jerks). Both boys flapped their hands and walk on the tops of their folded-under toes; when Misha had learned to speak well, he told me his hands felt like needles were in them. This is medically known as "peripheral neuropathy," a feeling of numbness and tingling in extremities, and can be due to lack of any of the soluble B vitamins. Within 48 hours of the first dose of B6, tics, hand-flapping and toe-walking disappeared. Currently my children require 500 mg per day of vit B6 to prevent these symptoms, and to prevent Misha's tics. If I run out of B6, tics begin coming back within four to five days. I know another child who needed high doses of vit B1 rather than B6; his tics also went away within two days. Thus my feeling is that these therapies will show very rapid results, within a week, if they will help at all. One physician describes systematically testing hyperactive children with various B vitamins and minerals to see which will help[68].

Toxicity issues. Vitamin B6 has been reported to cause peripheral neuropathy in high doses given over long periods. The on-line Merck Manual (ref[61]) describes neurological damage from doses of 2 to 6 grams per day, which is much more than the doses commonly used to treat children with autism. In the autism literature, it is usually advised that high-dose B6 be given in conjunction with B complex, magnesium, and zinc in order to prevent neuropathy from depletion of magnesium or other B vitamins (see the website of the Autism Research Institute[69]), but in many reports of B6-induced neuropathy these nutrients were not given.

This subject has alas been inadequately studied, despite the fact that high doses of B6 are used by many schizophrenic, autistic, and epileptic patients for long periods of time. Professor Ames reviews the use of high dose vitamin B6 in his article, which is available on-line (ref[64]). He states: "Provided safe dosages are used (Table 2) [of his article], there is potentially much benefit and possibly little harm in trying high-dose nutrient therapy because of the nominal cost, ease of application, and low level of risk." You are strongly encouraged to discuss any trial of high-dose vitamin therapy with your doctor, especially if your child is on medications or has severe health issues. If your family doctor is unfamiliar with malnutrition and vitamin deficiency, he/she may prefer to refer you to a GI specialist or clinical nutritionist.

ESSENTIAL FATTY ACIDS

We need both omega-6 and omega-3 fatty acids in our diet. The most common omega-6 fatty acid in our diet, linoleic acid (LA), is found in our common cooking oils. We get the omega-3 fatty acid alpha-linolenic acid (ALA) from green leafy plants as well as other vegetable sources, and the longer, more highly unsaturated, eicosapentaenoic acid (EPA) and docosahexaenoic acid (DHA) from fatty fish. The longer chain fatty acids, both omega-6 and omega-3, are very important for brain, eye, and neurological development.

"Normal" adults can make their own long chain fatty acids, such as arachidonic acid (AA), EPA, and DHA, from the shorter fatty acids found in plants. However, babies, who need much more AA and DHA for brain and neurological development, are unable to make enough of their own, so they must have more from the diet. Human breast milk is rich in DHA, but many of our alcohol-affected babies were not breast-fed. Recently DHA been approved as an additive to baby formulas in the US, though it has been used for some years in Europe.

Only recently have omega-3 fatty acids been recognized as essential in the diet, because up until recently, people got enough from the diet, and deficiency had never been seen. So is eating more spinach the answer? It is not quite so simple. In our modern diet, we get LA and ALA, which can both be lengthened by enzymes in our bodies. However, the omega-6 and omega-3 fatty acids compete for the same enzymes. Long ago, people consumed a ratio of about 1:1 omega-6 to omega-3 fatty acids, and so both sorts had about an even chance to be elongated and desaturated into the longer chain fatty acids. However, nowadays, we eat far more omega-6 than omega-3 fatty acids, so the ALA we get from the diet has little chance of finding a free enzyme and getting elongated and desaturated. In fact, Americans eat a ratio of about 10.6:1, while current dietary recommendations are 2.3:1 [70]. Therefore, dietarily speaking, we ought to reduce the amount of omega-6 and increase the amount of omega-3. In addition, we can get around some of the problems by eating fatty fish and taking fish oils, which contain pre-formed longer chain fatty acids.

And what about our alcohol-affected children specifically? It is believed that central nervous system dysfunctions in FAS may be related partially to alterations in essential fatty acid metabolism[71]. The effects of prenatal alcohol exposure can be partially compensated by including a supplement of Evening Primrose Oil, rich in gamma linolenic acid, an omega 6 fatty acid, along with alcohol in the diet of pregnant rats[72]. Absorption of fats may be very poor in children with damaged intestines, and should not be neglected in the case of a child who has fluffy greasy floating stools, almost certainly due to fat malabsorption. These children may need a gfcf diet as mine do. While no specific research seems to have been applied to alcohol-affected children with fatty acid supplements, research has shown that some children who have ADHD improve on fish oil supplements[73]. If intestinal health is very poor, you can simply apply the fish oil to the skin. We do this at bedtime, so the fishy smell is gone by morning.

Note also that if fat absorption is poor, the absorption of the fat-soluble vitamins A, D, E, and K, is also likely to be deficient. You may in this case need to give extra supplementation. There is evidence that some children with autism use the pre-formed vit A found in cod liver oil more efficiently than the retinyl palmitate form often found in vitamin pills[74].

GETTING STARTED (Personal Advice)

If your child needs a gfcf diet, or you think he/she may need it, then I think this is the best place to start. It is cheap, safe, and the results can be both rapid and amazing. You will need the cooperation of all family members, school or day-care teachers, and neighbors or friends whom your child visits. Even the youngest children should understand that they are being given special food to see if it helps them feel better. Older children may be eager to try a diet which will help them feel more in control of themselves, but it may be impossible to impose a special diet on an older child who is unwilling.

Initially, the diet does take extra work and planning. But within a few weeks, you will form new habits of shopping and cooking. Take the diet as an adventure, not as a burden. It may be the best gift you ever give your child! Do not try to change your whole diet at once; adapt your normal recipes to gfcf so that you continue eating familiar comforting foods. Begin gradually in order to minimize the withdrawal from opioids, but try to be completely gfcf within a month.

You may find the diet to be very simple in the beginning, before you have found foods and recipes that your family enjoys. But simple does not have to be boring! Add a sprig of parsley or a radish rose to brighten up a plate! Use a colorful tablecloth or candles on the table! Send the kids out to pick a beautiful bouquet of dandelions! Invent new names for the food: add some chopped gfcf chocolate to your muffins and call them "petits pains au chocolat"; we don't have potato salad and tuna, we eat "Mama's super salad plate for super kids." We don't eat ravioli: Misha gets mishioli, Nata gets natioli, and Vova gets vovioli. We love to remember who gave us our recipes, so we eat "Assunta soup" (from a dear friend) and "Waffles-from-the-papa-with-all-the-kids" (from a friend who has six kids on gfcf).

At the same time that you begin gfcf, consider giving your child a vitamin and mineral supplement to at least the recommended daily allowance of all vitamins and minerals. Begin to think about EFA's as soon as possible. After six months to a year, life will be much calmer, and your child's body will be essentially free of opioid peptides. At this point, you will be able to sort out other food reactions and allergies, if any.

For most people who need a gfcf diet, the results are quite dramatic; for those who need B vitamins, the effects are both rapid and remarkable. We actually began high-dose vitamin therapy before the gfcf diet; tics, hand-flapping and toe-walking disappeared rapidly, but we still had hyperactive crazy children. It took gfcf to get rid of wild and dangerous behavior, and to get rid of the autistic spaciness. Thus I do not believe vitamins or any other measure can over-ride the necessity for a gfcf diet.

CONCLUSION

In this article, I have tried to summarize several of the nutritional interventions we have found to be useful in our family. Other fine books and websites describe useful pharmaceutical interventions, and other nutritional or biological approaches to schizophrenia, autism, and ADHD. Educational measures, massage therapy, Sensory Integration Therapy, and so forth, are well described in the literature for FASD, autism, and ADHD, and other learning or behavioral disorders.

......................................

Misha told me today that when he first heard about our gfcf diet, he thought we wouldn't be able to eat anything. "But," he says, "now we eat lots of things!" Vova tells me every day at noon (and nobody trained him to do this) "I am glad we have a good Mama who makes us gluten-free lunches." They remember "the old days" when "we were crazy" and honestly do not regret exchanging store-bought cakes and cookies for sanity.

USEFUL BOOKS AND WEBSITES

Cookbooks

My favorite Indian cookbooks are Classic Indian Vegetarian and Grain Cooking by Julie Sahni and Heaven's Banquet, Vegetarian Cooking for Lifelong Health the Ayurveda Way, by Miriam Kasin Hospodar. The latter book's recipes are planned according to traditional Indian medicine in order to be easy to digest. We find these recipes to be ideally adapted to our kids' sensitive digestive tracts, making substitutions as necessary to keep the recipes gfcf. My favorite gfcf recipes come from Bette Hagman's cookbooks, especially The Gluten-Free Gourmet Bakes Bread. Ms. Hagman uses milk in some recipes, but this can be subsituted with rice, soy, or potato milk.

Nutritional or Mixed Approaches to Mental Health

Biological Treatments for Autism and PDD, by William Shaw, Ph.D.

Seven Weeks to Sobriety: The Proven Program to Fight Alcoholism Through Nutrition, by Joan Mathews Larson, Ph.D.

Is This Your Child? Discovering and Treating Unrecognized Allergies in Children and Adults, by Doris Rapp, M.D.

Unraveling the Mystery of Autism and Pervasive Developmental Disorder: A Mother's Story of Research and Recovery, by Karyn Seroussi.

Special Diets for Special Kids, by Lisa Lewis, Ph.D.

Why Can't My Child Behave? Why Can't She Cope? Why Can't She Learn?, by Jane Hersey.

The Bipolar Child, by Demetri Papolos, M.D. and Janice Papolos.

Various books on chronic yeast infection by William G. Crook, M.D.

Nutrition and Mental Illness: An Orthomolecular Approach to Balancing Body Chemistry, by Carl C. Pfeiffer, Ph.D., M.D.

Healing ADD: The Breakthrough Program That Allows You to See and Heal the Six Types of ADD, by Daniel G. Amen, M.D. One of his six types runs in alcoholic families, and sounds a lot like FASD.

Websites

The Feingold Association has information on foods and food additives which can cause hyperactivity in some children. www.feingold.org/

The Autism Research Institute has information sheets on nutritional approaches to autism, and a fine newsletter. www.autism.com/ari

The Autism Network for Dietary Intervention has information on the gfcf diet and a worldwide list of support parents to help you get started with gfcf. www.autismndi.com

The website of Dr. Mary Megson, a physician specialized in ADHD, autism, etc. www.megson.com

Jodee Kulp's site www.betterendings.org gives information on the nutritional measures that have helped her alcohol-affected daughter.

The on-line Merck Manual is a respected concise medical reference work. www.merck.com/pubs/mmanual Section 1, Chapter 1 gives general nutrition information. Section 1, Chapter 3 goes into the details of Vitamin Deficiency, Dependency [requirements for vitamin mega-doses], and Toxicity. Section 3, Chapter 30 covers celiac disease.

PubMed is the free public access to scientific research. You can quickly find articles by keyword, and usually you can view the abstract of the article by selecting it and then selecting View Abstract. You often get links to the publisher's website, with free or paid access to full-length journal articles. www.ncbi.nlm.nih.gov/entrez/query.fcgi

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