Lutein - the missing piece of the puzzle
In autism, we can now clearly state that recovery is possible. There are many stories of recovery, many using diet as a central platform. But to aim for recovery in every autist, we first have to identify the cause. In our understanding, the underlying root cause of autism is an immune system 'choice' or 'immune error' during development in the womb which marks a dietary pigment - lutein - to be targeted by the immune system. We believe this is happening because vaccination practices over the last century are leading to an evolution of the immune system as the human genome attempts to adjust to this medical onslaught in successive generations and includes the development of immune-compromised conditions such as autism, diabetes and asthma. We go into more detail in our other literature.

This immune choice leads to a cascade of changes and reactions in the body and mind. These start during pregnancy and can be seen in brain differences that can only have happened in the womb. Behavioral changes are first seen in early childhood, but the major deteriorations are most often witnessed by parents as catastrophic reactions to vaccination. These changes and reactions differ from person to person depending on genetics, immunogenetics, environment, family history, diet, and the inherent strength of the individual, leading to the complex and wide-ranging presentation within the Autism Spectrum Disorders. The immune system takes control of the bodies vital functions - digestion, metabolism, heart rate, blood pressure. Social development is stalled as the limbic system concentrates on the systems vital for survival and is replaced with defensive and coping strategies.

Gluten and casein-free diets - a partial success story
One of the most common defence strategies of the immune system in autism is to convert wheat and dairy proteins (gluten and casein) into powerful morphine-like opiates. This does not happen by the chance 'incomplete breakdown' of proteins as the proponents of GFCF diets believe. It happens because the immune system has deliberately taken control of the metabolism and is creating these opiates to protect the body and mind from the stress and suffering caused by the immune response to dietary lutein.

Removing gluten and casein is generally a good idea, not least because it leads unintentionally to the removal of many lutein sources and food dyes which come with packaged wheat and dairy-based snacks. Many then follow advice and additionally remove soy, egg and corn, which takes out more processed problem foods. But the problem with these diets is that they do not remove lutein and they do not address the essential nutrient needs of the individual. Without every essential nutrient, people grow sick eventually, and this is even more true of autists whose altered metabolism and selective diets mean that even more attention has to be paid to nutrient needs. The sugar-free 'anti-yeast' diets as promoted by some popular books has caused some of the most severe nutrient deficient diets that we have encountered in our work. Powerful chelation protocols and anti-yeast regimens put even more stress on the vulnerable child, and supplementing with megadoses of vitamins leads to more metabolic imbalance.

The evidence from GFCF mailing lists shows that removing gluten and casein without removing lutein might lead to a temporary 'waking up' as the opiate level recedes but is followed by more obvious reactions to lutein-containing and other allergenic foods. These are wrongly described on the lists as 'phenol reactions' and 'yeast die-off'. (Although phenol reactions can occur as phenol sensitivity increases on a GFCF diet, it is the lutein reaction that keeps the body in a state of metabolic chaos.) Yeast die-off may happen at some point later in the healing process, but the symptoms are very different to a lutein reaction.

Sara's Diet - simple, cheap and effective
Our program is basically very simple, cheap and easy to acheive. We recommend the removal of all lutein-containing foods and begin a new diet based on specific health-giving nutrient-rich foods that are tolerated and accepted. We also remove all artificial food colorings including annato and beta-carotene, and the artificial sweetener 'Aspartame'. The new diet leads to the immune system calming down and eventually letting go of it's stranglehold on the digestive, metabolic, enzymatic and detoxification pathways of the body. Use of natural antifungals and healing foods such as coconut and aloe assist the process. Enzymes will come from the foods provided in the diet, and heavy metals will be released and removed naturally and safely. We believe that nutrition should come from nutrient-rich foods, not from supplements. These healing and nutritious high quality foods are high in the micronutrients that are key to healing. When we give a consultation, we look at which foods your child is already eating that are supplying high quality nutrition and build on these. Only when there are serious deficiencies in the diet that can't be addressed by food do we recommend supplements. Cod-liver oil and other fish oils and essential oils are considered as foods. All of the foods we mention are there because they are sources of high quality nutrition.

Treating the individual requires assessing and taking into account all of these factors, designing an individual diet with supplementation if needed, and recommending additional interventions and supports based on how the individual is responding. The metabolism of the autist is often fragile, enzymes and neurotransmitters are disrupted, the digestive system in chaos. Lab testing can help us to understand what is going on, although it is often clear from the child's symptoms, appearance and behavior where the problems lie. Some do have immunogenetic differences which affect the metabolism and require additional adaptations to diet, supplements and other supports. Our experience with autism over 15 years gives us an enormous database of knowledge with which to assess the needs of every individual. The very nature of Sara's Diet requires that the recommendations are individually determined. There are many factors that we consider. These factors might include the medical history of the child, physical signs and symptoms, behavioral presentation, family medical history to assess inherited problems, diet, supplements and medications used, the child's response to food and feeding, testing for food allergies and sensitivities and other testing as available.

The progress of the child
As the diet progresses, the individual goes through a healing process. After about twelve days, the first crisis often occurs as the immune system realizes that it's 'enemy' is no longer entering the body and it can begin to shed stored toxins. The mind often experiences a 'panic' as the first major shift in consciousness occurs. Toxins that have been stored in the body, including heavy metals, begin to be released as the immune system begins to release its control. Cold- and flu-like symptoms including 'strep throat' are common during the first four months. Serotonin that has been stored is released and the altered serotonin metabolism begins to normalize. The immune system loses its control of the digestive system, and enzymes begin to function in a more normal way. This process is not always easy. Damage done to the digestive system might require use of Aloe Vera juice and/or Manuka Honey for healing. Enzyme supplements might be used to help the digestion in the early stages of the diet. Yeast (Candida Albicans) overgrowth might heal by itself, or it might require some attention from remedies such as MCT or coconut oil and yogurt cultures. Behaviors and emotions might fluctuate wildly in the first four months as the body and mind readjust to this transformation in health and well-being. An increase in B-Vitamin intake, honey, DMG, CoQ10, Cod-liver oil, a change to organic and natural foods and a decrease in unnatural and processed foods are some of the common strategies employed. Food choices might change dramatically as we find nutrient-rich alternatives in health food stores and oriental markets, such as white yam flour, brown rice and sesame crackers, tamari and oriental fruits and vegetables.

Lutein
The lutein or carotenoid content of the food depends on many factors including exposure to light, season, soil and type. Some foods such as tomato, cucumber and melon do not contain lutein or beta-carotene but contain other pigments which can be converted to lutein or beta-carotene in the body, such as lycopene and zeaxanthine. The immune system does not react to these foods and the pigments can reach the body systems which benefit from lutein. The conversion will occur away from the immune system interference resulting in bio-available lutein. Our research suggests that lutein is not essential to the human diet generally and that people probably cannot utilize dietary lutein, rather that we convert these other bio-available pigments to lutein in the body. Some foods have not been adequately studied for their pigment content such as many grains, nuts and legumes.
Further reading: What is lutein?

More books and articles on Sara's Diet

The Power of Exile - Autism, A Journey to Recovery
The story of one girl's recovery that led to a medical breakthrough

Diet results
Results of a large consecutive group of diagnosed autists, ages 2-24 years using dietary intervention (lutein-free).

What is lutein?

Myths about Sara's Diet
Common misunderstandings are discussed

Background
Background - lutein intolerance

Malaysia 2003
Continued success of lutein-free diet program in Malaysia

True_Potentials_Tour,_Malaysia_2003
 

The Limbic System in Autism - how an immune response to lutein leads to the development of autism

Autopsy and MRI studies have revealed an ímmature development of many structures of the limbic system, including amygdala, gyrate nucleus, and hippocampus, but no damage or loss of neurons. The limbic system represents the mammalian development of emotional attachment, parenting and social behaviors, as well as learning and language development. As warm-blooded mammals, we are dependant on the development of emotional attachment to the parents. We feel good when we are safe, well fed and we know where our parents are. In that state of well being, we learn and develop language and social skills. Conversely, when we are lost, hungry and in danger, we experience panic. That panic involves the immune system and begins with an adrenalin release. The immune system takes over from the emotional system, and we revert to a more primitive state of fight-or-flight, survival instinct. In that state, learning, language development and social skills are not important to survival. We believe that in autism, the immune system is reacting to lutein as if it were a life-threatening pathogen. The particular type of immune response involves the 'alternative pathway activation pathway' (APAP) and is the type of reaction we would see to a cobra venom - it is a life or death situation. The immune system takes charge of the body's vital functions - digestion, metabolism, breathing, heart rate, temperature - and all superfluous activity, including social activity, stops until the reaction ceases. But for the autist, the reaction doesn't cease because lutein is coming into the body too often. In the infant, there are generally few exposures to lutein, but during the second and third years lutein-containing foods begin to enter the diet frequently. The response to the first exposures might be fever, and many parents report fevers during early childhood. The child often begins to refuse some foods. The altered immune system often over-reacts to immune challenges as is seen in the frequent reports of adverse reactions to vaccinations. Then, as the lutein exposure becomes continual, the immune system has to adapt, as continual high fever is dangerous to the brain. The response changes from acute to chronic - control of the digestion, metabolism, hormone and enzyme production. Serotonin transport to the brain is controlled to reduce arousal of the pituatary system to a minimum. The primary focus of the immune system becomes systematic removal of the pigment pathogen and it's breakdown products. This is seen in increased excretion of neopterin and biopterin, prurigo-type eruptions on the skin, and recurrent ear inflamation. Lab reports show unusual patterns of fatty acid and amino acid excretion, Vitamin C metabolism, signs of gut flora imbalance and production of unusual opioid chemicals which the immune system is manufacturing as endogenous stress and pain-reducers. With an ongoing immune system activity, the limbic system switches over to a state of defensiveness and survival. Development of social behavior is arrested in favor of survival, defensive and coping strategies to minimise arousal and social expectactions. Depending on the innate strength of the individual, mental and intellectual functioning may develop, despite the social handicap, in idiosyncratic ways. For some high functioning autists, the strategy of avoidance takes the form of developing unique skills, or intensive reading and studying, or focus on a particular branch of math or science or music.

Removal of lutein from the diet is the first step towards recovery and healing, but there is often a long way to go. After approximately 4 months, the parents report that the child is calmer, happier, more social, more interested. It takes a while longer for language development to move forward, especially for those who were always non-verbal. Our experience after many years into recovery is that the immune system never fully relinquishes control, but coping skills and obsessive behaviors slowly diminish, and focus on normal enjoyment and pleasure increases. Body language becomes more normal and easier to interpret in others. All the senses improve, from a state of confusion and conflict to clarity and sharpness and emotional significance. Our lives take on real meaning and we become less fearful and reclusive and more social and positive in our outlook. Having worked with many thousands of people, we have seen how emotional development increases year on year, so that after 5 years on the diet, a 15 year old may exhibit the typical emotional and social development of a 5 year old, the sexual interests of a 15 year old and the intellectual level of a college student. Although we do not intend to become 'normal', we see the potential of all autists to find meaning and fulfillment, joy and happiness in their lives.

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