After working for six months for no pay, we
were again homeless and penniless. Nevertheless we still had the computer
and the determination to continue with our work, so when Angela dropped
us off at a cheap motel far from anywhere, we checked in. There was a Waffle
House up the street past the gas station, so Sandra got herself a job as
a waitress again. I hooked the computer up to the Internet and we got down
to work.
We were sure that somewhere in the
world there must be a journal or magazine that would be interested in Sarah’s
story of recovery, so I sent out emails around the world. A response came
back from a UK-based health magazine ‘Positive Health’ and they were interested,
so we sat down and wrote ‘Autism, a causal theory and treatment option’
It was published in Positive Health magazine in September of 2000, and is
still available on their website. We include it here because it summarizes
quite concisely our work up to that point:
At the time when autism was first described
by Dr Leo Kanner and thus given an identity, there was little debate as
to the field of medicine which would be called upon to develop expertise
and treatments for this rare psychological condition. Under the psychological
paradigm, advances have not been forthcoming.
Physicians, researchers and specialists,
often driven by personal agendas, have sometimes made ‘findings’ which are
called ‘pieces of the puzzle’ by the autism community. These pieces do not
always seem to fit together or even belong to the same puzzle.
In our theory, a single cause, these
pieces do fit together. In our theory autism is not a psychological condition
– it is a neuro-gastro-immunological disorder resulting from an immunogenetic
error during fetal development. At the time when the immune system is developing,
the first immune cells must select a non-self substance which has crossed
the placental barrier and react to this non-self substance in order for
the immune system to proliferate. In the developing fetus there is no apparent
function for a substance called lutein, a pigment which is used by the human
at birth to protect the eyes from ultraviolet light. The immune system is
developing just after neural tube closure which has been the time of reference
given by some research that corresponds to brain imaging differences that
are identified in autists. However, the slightly earlier ‘neural tube closure’
time frame would likely correlate to a population with co-occurring spina
bifida – no such correlation exists. An immune system which identifies lutein
as the non-self substance would result in a correlation to Retinopathy of
Prematurity - this correlation does exist. An immune system reaction of
this type would result in a correlation to a disturbance in pterin metabolism
- this correlation does exist, and it would result in a correlation to mitochondrial
disturbance and again this correlation does exist.
Successful Results of a Lutein-free
Diet
The theory, lutein intolerance, is simple
and as yet has not been subject to rigorous research. Since 1995 we have
worked to provide recommendations to families and physicians treating individuals
with autism. Our results include that 80% of our clients report significant
and measurable results when a nutrient balanced, lutein free, soy protein
free and casein/gluten restricted diet is implemented with an adequate and
balanced intake of essential nutrients. 10% report complete alleviation
of symptoms or declassification from autism. The complexity of the dietary
intervention results from the unique needs of each individual, their current
diet and the age at which sufficient dietary intervention is applied.
The complexity of the dietary intervention
needed results from the self-limited or restricted diets of the autists
as well as the cascade of biochemical abnormalities that are a result of
the immune system’s response to the non-self pigment pathogen, environmental
factors as well as the unique make-up of each individual’s genetic information.
This can be further complicated when a co-occurring disease, disorder or
condition is present.
Opioid Excess Theory and the GFCF Diet
In addition to trypotophan/serotonin abnormalities,
B6 and DMG reports, natural vitamin A supplementation and outcome there
is research by Paul Shattock, Autism Research Unit (Sunderland), Dr Kalle
Reichelt (Norway) and Dr Robert Cade, University of Florida which identify
abnormal opioid levels in the autistic population. The opioid excess theory
has resulted in vigorous use of gluten- and casein-restricted diets being
implemented for autists around the world. The results vary and are complicated
by factors that include that some autists are natural lutein avoiders while
others crave lutein foods. Foods used to replace gluten- and casein-containing
foods may include soy protein which contains genistein, forcing the conversion
of tryptophan to kynurenine, another biochemical marker which is often elevated
in the autist and in my research has been shown in some cases to be normal
prior to the implementation of the gluten/casein-restricted diet and elevated
after implementation of the gluten/casein-restricted diet and correlating
to soy protein foods being added to the diet.
Natural Painkillers from our Immune
System
Another biochemical marker, is the reported
discovery of dermorphin and deltorphin in the autist’s urine. These opioids,
which are said to be 2000 times more potent than pharmaceutical morphine,
provide more evidence that the human immune system is responsible for the
unique make-up of the autist. It has been established that the immune system
macrophages release hemorphins and opioid substances through cathepsin manufacture.
My personal experience as an asymptomatic individual with biochemical abnormalities
similar, if not identical, to many autists has resulted in my life’s work
– dietary intervention and autism. The release of the D-amino acid mu-opioids
is very possibly a direct result of the immune system’s error during fetal
development targeting lutein as non-self, leading to a cascade of biochemical
(and immunogenetic) responses.
So, a simple immune system error has resulted
in the need for providing a comprehensive approach to dietary intervention.
The individual’s genetic make-up and pigment metabolism reveal information
usually considered to be inconsequential and include co-occurring ‘benign’
conditions such as carotenemia and vitiligo and the occurrence of strange
bumps and/or blisters on the skin of autists. On the other hand, devastating
disorders of pigment metabolism also co-occur with an autism diagnosis,
the most well-documented being tuberous sclerosis and PKU.
