Guts, Bugs & Treatment
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Transcript of Guts, Bugs & Treatment
Contents
Introduction 1
Chapter 1 A son is born and causes an unimaginable amount of trouble 2
Chapter 2 What’s gone wrong? 7
Chapter 3 What can be done? 11
Chapter 4 What’s next? 17
Key research resources 19
Useful organisations and websites 20
Eric’s test results 21
�
Introduction
Having a child diagnosed with autism is becoming an
increasingly common experience. The latest figures
suggest that around one in every 100 children in
the United Kingdom is now classified as autistic. As
a parent of one of these children you are told that
the condition is the result of some sort of genetic
malfunction and your child will be autistic for life.
This pamphlet tells the story of our journey into the
world of autism. We have written it to give heart,
hope and courage to other parents who are in a
similar position. Despite what you are told by the
professionals you meet at the school, council and
hospital, there are things that can be done to make
things better for you and your child.
Our son regressed into autism between the ages of
2 and 4. During that time he became increasingly
allergic and developed terrible eczema; his
behaviour and communication deteriorated; he
stopped sleeping; and his bowel gradually stopped
functioning. At times, we thought he was going to
die.
Something caused him to become so desperately ill
and to lose the skills he’d once had. Since diagnosis,
we have been on a mission to find out what is behind
the condition. The knowledge we’ve gained has
then helped us to improve his health, happiness and
development. Although he is still autistic, our son is
now free from eczema and he sleeps, eats, defecates,
communicates, engages with other children, and is
starting to learn. We still have hard times but things
have really improved.
Remarkably, the medical profession don’t regard
a child like ours to be ill. Once you have a label of
‘autism’ doctors and consultants appear to be blind
to the symptoms that would normally provoke a
response. Thousands of children are left in a state
which means they don’t eat or poo without pain,
hardly sleep and struggle to go out in public. This is
part of their autism and it is not benign. We argue
that it reflects a problem in the immune system and
it manifests in a range of symptoms and behaviours
that are responsive to treatment.
There is now a developing stream of academic
research that backs up our experience. There are
also a growing numbers of parents sharing their
experiences of helping their kids to recover. A recent
research paper by Deborah Fein and colleagues from
the University of Connecticut, USA, published in the
prestigious Journal of Child Psychology and Psychiatry,
documents the amazing progress made by a group
of children who lost their diagnosis of autism.�
This challenges the dominant view that autism is
a lifelong disability. We are standing on the brink
of new revolutions in science that will have major
implications for our understanding and treatment of
many chronic conditions, including autism. We have
written this pamphlet to help make it happen.
� Fein et al (2013) Optimal outcome in individuals with a history of autism. Journal of Child Psychology and Psychiatry, 54, 2, 195-205.
�
Eric Trevelyan Chapman Wills arrived in a hurry on
13th October 2003 and he’s caused an unimaginable
amount of trouble ever since. Even his birth was
spectacular. We crashed over the speed bumps
between Forest Gate and Homerton Hospital in east
London just in time to push him out in the pool.
Eric was a tiny baby weighing just over 5lbs. There in
the ward he seemed so frail next to the babies that
were twice his size. Yet where he was lacking in size,
Eric more than compensated with noise. He cried loud
and hard for almost the whole of his second night on
the planet. Other mothers and even the staff looked
askance as feeding, winding and cuddling fell on deaf
ears. Although things improved when we took him
home the next day, Eric was a restless baby. He cried a
lot during those first weeks of life and this was likely a
reflection of the underlying problems that later came
to the fore.
We loved our new boy. He started to grow and did
all the things he was expected to do. When he was
just eight months old he joined a group of children
being cared for by an experienced child-minder and
he stayed with her for well over a year. Angeline
produced some wonderful film and you can see Eric
pointing, talking, painting, kicking a ball and playing
just like a normal boy would do. In a sobering clip that
would later come back to haunt us, you can see him
cuddling a doll, sitting her in a chair and pretending to
give her some food. We later found out that handing
a child a doll and the tools needed to care for them
is a classic test of dysfunction in children. While Eric
did what he should when he was 12 months old, he
would later have absolutely no interest in dolls and
show no sign of doing anything appropriate with
dishes and spoons.
The regression into autism
It was some time before his second birthday that
Eric started to regress into what we later came to
know as autism. He began to display a series of
symptoms that we now associate with the developing
dysfunction behind the condition. Our wonderful
boy started to suffer from diarrhoea that later turned
into constipation, faddy eating, worsening eczema,
insomnia, hyperactivity, terrible tantrums and acute
anxiety. Eric started to develop some odd behaviour
that we never associated with autism. In fact, we
used to think that these oddities were endearing
signs of a would-be genius. We would laugh about
him giving Nureyev a run for his money as he could
jump and land on the tip of his toes. We would
revel in what looked like unalloyed joy as he sat in
the buggy and flapped his hands like a bird. But we
would also wonder at his extreme paranoia about the
strangest of things. Eric became so frightened of his
grandparents’ weather-vane that he could not walk
past it or even look out of the window in its general
direction. When we took him on holiday to Wales in
the summer of 2006, we discovered that he had an
absolute terror of sheep. The sight of a furry lamb
would trigger panic and screaming until we retreated
to safety. Imagine going on holiday to rural Wales only
to find it impossible to encounter a sheep!
Shortly after Eric’s second birthday, we moved house.
By then his bowel was the most obvious sign of a
problem. When he started with Carina, his new child-
minder, we would often pick him up and find his
clothes in a bag. Even his nappies couldn’t contain the
runny, foul-smelling poo, that would pour out of him
during the day. Carina would wash him off in the bath,
rinse his clothes, put on new ones, and treat it as a
regular part of the job. She did everything he needed
and more, cooking him food that he would not eat,
buying him the treats that he craved and trying to
reduce his anxiety. Looking back, it is hard to imagine
why we were not panicking by then. But even if we
had asked the doctors and health visitors they would
have told us that things like this are common in kids.
Bowel problems and allergies are usually considered
normal these days.
We were also thinking about our experiences of
caring for our daughter. Agnes is five years older than
Chapter 1: A son is born and causes an unimaginable amount of trouble
3
Eric. She had been born with eczema on her eye-lids
which dramatically worsened during her first years
of life. By the time she was two, we would find her
scratching her skin until it bled. We used to come
home from the doctors with buckets of cream but
the problem just got worse. Eventually, a chance
encounter with a woman at a Tesco’s checkout in
Leytonstone helped. She told us that her son had
been exactly the same. When they took wheat
and dairy out of his diet he got better and while it
seemed radical at the time – although not a patch
on what we have been through since – we cut out
all dairy, wheat, eggs and sugar from Agnes’ diet. It
was an absolute revelation to find that her skin was
starting to heal just a day or two later. Wheat was
causing the problem and, without it, the eczema
disappeared.
When Eric started to have his problems we thought
that it must be a repeat of the same issue. When
he was about two and a half, and the eczema and
the diarrhoea were getting worse, we thought again
about diet. At that time, Eric’s eye lids were very
swollen and sore. He would sit and scratch for much
of the day. Just as with Agnes, we eliminated the
obvious foods. But this time, the problem was milk.
Without milk, butter, yoghurt and cheese, Eric’s eyes
calmed down and some of the eczema disappeared.
Even better, and unexpectedly, he also stopped
screaming when he woke up at night. Whereas he had
regularly woken up in a state of inconsolable anguish
which took us hours to calm, without milk in his diet
he was much calmer when he woke up at night. His
sleep patterns were deteriorating but at least when
he woke, the screaming was markedly less.
By Eric’s third birthday, we were expecting a gradual
improvement from the allergies and bowel problems
after the removal of milk, but this was the year he got
worse. By the time he was three and a half, Eric was
suffering from extreme constipation. Our little scrap
of a boy would stand with his hip pushed to one side
as he turned puce trying to deposit tiny little scraps
of poo in his nappy. In what looked like an odd mating
ritual, he also used to rub against the nearest piece
of appropriate furniture for hours on end. Moreover,
given that next to nothing came out of his bowel, it
became very difficult to get him to eat. By this time,
Eric looked malnourished. He had a swollen abdomen,
tiny arms and stalks for his legs. He ate next to
nothing, slept very little, cried a lot of the time and
was covered in eczema.
We were beginning to panic and our visits to the
doctor and our requests for referrals started to grow.
We tried liquid paraffin, Lactulose, Senna and Movicol
but none improved his chronic constipation. At the
same time, it was becoming clear that Eric had very
serious challenges with behaviour, socialisation and
learning. Although we were blind to the scale of the
problem, the workers at his new nursery were quick
to call us in with ‘concerns’. By the time that we were
in the queue for an official assessment, we already
knew the result. Diagnosis by Google took just a few
short minutes – type in hand-flapping, toe walking
and lining up your toys – and you get the answer as
clear as day. Our son was autistic.
In common with others, we had always thought
autism was about failure to make social and
emotional contact with other people, but Eric has
always been incredibly affectionate towards us, his
sister and grandparents. We thought we had an
allergic, sensitive child, not a permanently disabled
one. We were in a state of shock akin to bereavement.
Other people mainly think about autism through the
lens of the film Rain Man; they believe your child
will just be a bit odd and become a bit of a boffin.
They have no idea that autism can mean you have a
child who screams a lot, struggles to communicate
and looks like having permanent learning difficulties.
Autism comes in a lot of different shapes and sizes,
and for understandable reasons, those at the most
able end of the spectrum have been demanding to
be treated as ‘different.’ However, when you are
the parent of a child at the more severe end of the
spectrum, you want more than a respect for their
‘difference’; you want their obvious health concerns
to be taken seriously and acted upon.
4
Diagnosis, doom and gloom
After what seemed like an interminable wait
(actually about ten weeks) for what was called the
preliminary non-diagnostic assessment, a community
paediatrician gave us the official confirmation that
Eric had severe autism. He was almost four and a half
years old. He had failed (or passed) just about all of
the tests and ended the assessment by tantruming
the doctor’s books and toys all over the room. Even
the kindly doctor seemed shocked at the volume
and ferocity of Eric’s screaming and took sufficient
pity on us to give us a diagnosis before she was
really supposed to. She told us Eric had severe
autism, the kind that you were going to suffer for
life. She took no account of the bowel, sleep and
allergy problems and told us there were no further
medical assessments or treatments. We were to
be invited back in a year or two’s time for a routine
appointment but there was nothing else to be done.
It was as simple as that: we had had a normal baby
who had regressed into autism and he was going to
be like this for life.
We were bewildered. The health professionals had done
their work. We were left with the diagnosis and then
faced a battle to get educational assistance in school.
When we left St Ann’s Hospital in Haringey on that
D-day in February 2008, we were told to claim
Disability Living Allowance, make sure that the
Education Services provided help at school and try
to get Social Services to provide us with respite care.
The official position was – and remains – that autism
should be treated as a matter of communication and
learning impairments. In 2011, the cost of autism
services in the UK was an estimated £28 billion, and
this immense sum mainly comes from the collective
budget for welfare rather than the one funding
health. Even though our experience of allergies,
bowel problems and insomnia are shared by many of
the other parents of autistic children we have met,
and particularly those at the severest end of the
spectrum, the condition is still officially understood as
being a disability affecting the mind.
Beyond the official view, however, as soon as you
put a foot outside the hospital and away from the
professionals, you enter an alternative universe where
people link autism to the environment. Some parents
draw parallels with the canaries that were taken down
the mines to detect dangerous gases during the early
years of the industrial revolution: when the yellow bird
died you knew there was trouble. Today, many see our
kids as the canaries in the mine of a society that has
invented new chemicals, new drugs and new vaccines
without knowing the side effects. Autistic children can
be viewed as sirens of an existential threat that has yet
to be noticed, let alone acted upon; nature’s revenge
for upsetting the natural order of things.
While reassuring to the extent that it leaves your
genes off the hook and implies there might be
something you can do to improve the situation, this
analysis can be almost as overwhelming as the official
position. While you are struggling to come to terms
with the fact that your beloved child has a life-long
disability and will likely never be able to look after
themselves, you are also getting increasingly paranoid
about everything you put in their mouth. Even a
glass of water looks suspect due to the possibility
of chemicals and heavy metals lurking within. In
addition, the environmental theory means that you
are confronted by a cacophony of possible causes
and treatments. For some, autism is caused by the
heavy use of antibiotics, and the poor-quality bowel
microbiota passed on from the mother. For others,
vaccinations are at the heart of the problem, either
due to the viral pressure they put on the immune
system or the toxic stabilisers used to preserve them.
Others blame environmental toxins and heavy metal
poisoning, and there is yet another group who blame
some undiagnosed infectious agent as when scientists
found HIV as the causative agent of AIDS. Such a
multitude of conflicting ideas means that there is
no clarity about the causes of autism, nor the best
way to treat it. Every possible cause has a different
possible treatment. We have been to a good number
of conferences that are designed to bring parents,
practitioners and researchers into dialogue about the
condition and what we might do, and each ascent to
5
the podium provides a different world view and very
divergent proposals for treatment.
Thus some of the prominent people in the alternative
autism universe advocate diet, others go for anti-viral
and anti-bacterial therapy, others focus on the immune
system, and yet others advocate special therapy
to remove heavy metals. While these conferences
are a wonderful source of solidarity for us parents
struggling with children who don’t sleep, poo, eat, talk,
play or learn, we are also left in a fog. Without any
clarity about the processes that lead to our children
developing autism, we can’t embark on a proper plan
for their treatment. Of course, some of the existing
treatments do help, and a few children improve so
much that they lose their diagnosis completely, but
the overall numbers who fully recover are small. The
kids who get better are a drop in the ever larger pond
of children being affected by the condition; the latest
figures collated in New Jersey, USA, suggest that autism
now affects one in every 38 of their boys.
Facing the future together
Even though our children are clearly unwell – and
when you meet other parents it is shocking to find
the extent to which our experiences are typical of the
condition – autism is still not even seen as a matter of
physical health. Although there has been an explosion
of new medical research that provides glimpses into
the roots of the condition (that we discuss in the next
chapter), the challenge is to combine these accounts
into a story that captures enough of the picture to
develop treatments that work.
Over the past four years, we have been part of the
international parent-led networks that have come
together online and in person to try and get to the
root of this problem. We have met some amazing
parents who try to keep abreast of the latest research,
publish their findings and ideas online, and look for
places to meet and discuss. There has been a dramatic
democratization of science – largely unrecognised by
the scientists who get the grants to do the research.
And although most of them don’t realise this, these
scientists could benefit from working more closely
with us; we are observing, researching and living with
autism every minute of every day, and as a result, we
have a rich experience and knowledge base that could
be tapped to help find solutions.
In the next chapter we draw on this experience to tell
you a different story about autism. We have pieced
together some of the most recent research and have
read it through the lens of our own knowledge and
experiences to develop a more coherent narrative
about the processes that lie behind the condition.
Drawing on published research as well as Eric’s story,
we argue that autism is a condition that reflects the
breakdown of the symbiotic relationship between
the human body and the flora that live in the bowel.�
We now believe that autism is the culmination of a
process that starts in the small intestine, where the
bacteria that should live in happy symbiosis with
their host are no longer able to do so. In our children,
some species grow more than they should and others
are forced into decline. It looks likely that some of
these organisms are able to penetrate the wall of the
intestine and transgress the body’s defences. Particles
of broken-down food and toxins from the bacteria
reach the blood supply. In response, the immune
system triggers inflammation in the gut and the rest
of the body, including the brain. On top of this, the
changed bowel flora struggle to produce the vital
enzymes needed to break down foods, and many
children with autism have undigested food in their
stool. The bacterial changes and inflammation are
also able to limit the absorption of vitamin B12 and
iron – as well as other essential nutrients – on which
the body depends. As a result, and as we outline in
relation to Eric’s profile in Chapter 3, autistic children
become malnourished and nutritionally deficient and
start to develop biochemical abnormalities.
� While we haven’t cited them in the text, some of the most important research papers are listed in the ‘key research resources’ section at the end of this pamphlet, and a more comprehensive list has been produced by the parent-led charity Treating Autism in their publication Medical Co-morbidities in Autism Spectrum Disorders: A primer for health care professionals and policy makers.
6
What started as a fault in the intestinal immune
system can cause a vicious cycle that leads to
the range of problems that we have seen in our
son: diarrhoea and constipation; food allergies;
inadequate growth; and damage to the brain
and neurological system (including sleep, mental
capacity, mental health and socialisation). Thus,
what is seen as a disability and classified as a
communication and learning disorder or ‘difference’,
is actually the symptom of a process of immune-
bacterial-biochemical dysregulation and dysfunction.
Our analysis explains how a range of apparently
diverse symptoms ranging from eczema to anxiety,
constipation to hand-flapping, insomnia to learning
difficulties, are constituent parts of this underlying
disease that has its origins in an impaired immune
system.
This immune damage is likely to have been caused
in-utero or in the early months of life by some kind
of viral assault. Given that each child with autism
suffers this impairment at a different time, and the
impact on the body’s bowel flora will depend upon
the severity of this impairment, the nature of the
existing ecosystem, the diet, the use of antibiotics and
the way in which the child’s immune system is able
to mount a defence, the severity of the condition will
vary in each and every case. This said, however, the
degree to which parents report, and children display,
common symptoms is striking.
We know this sounds far-fetched but in the following
chapter we flesh out the story in more detail. In
Chapter 3, we describe what we decided to do and in
the final chapter, we explore the wider implications
of this argument. If our children are the canaries in
the mine of society they may be telling us something
about the chronic diseases that are now topping the
lists of ill-health. Similar processes are likely to affect
the development of diseases that obviously affect
the bowel (crohn’s disease, coeliac disease), as well
as those that are a product of the imbalance of bio-
chemistry (arthritis, diabetes), and those that depend
on a well-functioning immune system (most obviously,
cancer but also allergies and chronic fatigue). We
explore all of this in the final part of the text.
�
Chapter 2: What’s gone wrong?
In 2001, there was great excitement when scientists
completed their map of the human genome. Many
people expected this to provide new understandings
of the human condition and to stimulate a revolution
in new health treatments. As it unravelled, however,
the project exposed the remarkably low number
of genes involved in a human being. Scientists
identified just 23,000 genes, which is less than the
number found in a grape. It is now clear that the size
of our genome is not enough to drive our complex
biochemistry and for this, increasing numbers of
scientists are arguing that we depend upon the micro-
flora that live in our intestinal tract. Recent research
has identified thousands of different species of
organism, comprising millions of genes, living in the
human microbiota. These organisms play a vital role
in maintaining our health and once they get out of
balance, they can result in all the problems associated
with autism, but it is also likely to explain many other
forms of chronic ill-health. Having a son with autism
has taken us on an amazing journey to rethink what it
means to be human (and we have come to recognise
that we are fundamentally dependent upon the
micro-flora that live in and with our bodies) and to
rethink the theory of evolution that we all learnt at
school.
Symbiosis and the perils of microbial destruction
In his book The Origin of Species, Charles Darwin
argued that evolution comes from the twin processes
of genetic inheritance and competition for life in a
changing environment. Those species that best fitted
the environment had the greatest opportunity for
reproduction, ensuring their survival and subsequent
population expansion. Those genetic variations (think
of height, build or colour) that brought significant
advantage were reproduced and Darwin thought
that additional genetic mutation would allow new
species to form. Yet we now know that genetic
mutations tend to lead to disease or ill-health (for
example, sickle cell anaemia, cystic fibrosis and
Downs Syndrome) rather than new species of life. In
this context, some scientists are arguing that new life
actually emerges from species associating ever more
closely together. As the environment changes, there
are advantages for organisms that are able to acquire
the adaptive characteristics of other members of their
community, so that bacteria, fungi, plants and animals
may become ever-more integrated with the organisms
that can give them biological advantage such as
additional nutrition, light, shade or camouflage. As an
example, Margulis and Sagan cite the case of lichen
that is a fusion of fungi and algae and can revert to
its constituent parts when put in the appropriate
environment. If you put lichen under water, the fungi
drown and the algae grow and if you put the lichen
in darkness, the fungi grow and the algae die. Lichen
is a product of two species associating together
and through time, and changing conditions, such
associations can become truly embedded in each
other, such that new life comes to exist.
This process of symbiogenesis is very significant in
relation to human evolution because we depend
upon microbes to help us digest our food, extract and
create precious nutrients, and dispose of toxins and
waste. Despite our current fixation on understanding
the genetic make-up of the human being and its
implications for health, our well-being also depends
upon our relationships with these other organisms.
Our bowel flora has always played a critical role in
allowing humans to change environment and diet.
This may include the breakdown of food-stuffs that
would otherwise be indigestible, allowing us to
tap previously unavailable nutrient sources and to
colonise previously inhospitable territory. It may also
include the development of our brains and associated
cognitive development.
Despite this co-dependence on the micro-organisms
living within us, however, we have been cavalier
in our development of ever more anti-microbial
chemicals and anti-bacterial drugs. During the
twentieth century, our approach to illness sought
to eliminate the threat of viruses and bacteria by
either killing these agents (through medication and
8
disinfection) or by manipulating the immune system
(through vaccination) to curtail and manage the
natural response to disease. The dominant narrative
has been that we can triumph over disease through
the elimination or control of its causative agents and
by clever manipulation of our bodily immunity. Yet we
have neglected the fact that our bodies have evolved
complex mechanisms for life that depend upon our
interactions and symbiosis with the viral and bacterial
agents that we are now trying to avoid or destroy.
Human immunity and respect for our neighbours
It is important to remember that the immune system
develops through its interaction with and control
of the body’s symbionts as well as with invading
microbes from outside the body. Our immune cells
are our relationship builders, key to sustaining our
reciprocal associations and the longterm viability
of our symbiotic condition. The prime locus for this
activity is in the intestinal tract. This long tube is
designed to remain firmly ‘outside’ while being inside
the body. The intestinal tract is open only at the top,
where food is ingested and the bottom where waste
is excreted. As such, it is designed to keep food and
harmful agents away from the rest of the body while
also making sure that we extract the substances
needed to develop and grow. As the new-born baby
ingests organisms in its milk, the developing immune
system has to manage the relationships with the
flora that come to live in the gut. The baby and the
immune system grow together; there is a constant
interplay between the bacteria and the immune cells,
and the former stimulate the immune cells, shaping
the way in which they recognise and respond to
forms of life, filtering the hostile from the benign and
beneficial.
Yet while we depend on the micro-organisms that
live inside us, the immune system is actually devoted
to ensuring that they stay inside the tube of the gut
without being able to penetrate the intestinal wall.
As a result, the lining of the intestine is covered in
a carefully maintained layer of mucosal protection.
Without it, the wall of the gut becomes vulnerable
to bacterial colonisation and the penetration of
chemicals and particles that should not be allowed
through to the rest of the body. Recent research
has highlighted the way in which immune cells in
the small intestine produce anti-microbial proteins
that keep the flora away from the surface of the
gut lining. When scientists have disrupted this
process in specially-bred mice, the gut bacteria
come into contact with the immune cells, causing an
inflammatory response. These anti-microbial proteins
are only just being explored, but they are also likely
to be playing a key role in modulating the flora that
come to be domiciled within the intestinal tract.
The political controversy that still surrounds the
work of Andrew Wakefield (the British medical
researcher who led the team who published a
research paper in 1998 that raised a potential link
between the Measles Mumps and Rubella (MMR)
vaccine and the development of autism) has stymied
the proper development of research into immune
inflammation in the small intestines of autistic
children. Wakefield and colleagues called this autistic
enterocolitis, and whether this is the correct label or
not, such processes are causing pain, gastrointestinal
disturbance and nutritional deficiencies in thousands
of children like Eric. Certainly, recent research that
looks at the particular species of bowel flora as well as
their by-products or metabolites (such as high levels
of propionic acid) finds that autistic children have a
different balance of flora in their microbiota to those
found in controls. There is speculation that this could
be due to the heavy use of antibiotics or a failure to
breast-feed, but Eric did not have antibiotics before
he regressed into autism and he was breast fed for
over a year.
As we outlined in the previous chapter, Eric suffered
with terrible bowel problems as he regressed into
autism, and this is common in children with the
condition. There are a growing number of studies that
look at the incidence of gastrointestinal problems in
children with autism. Although almost all of them
measure symptoms rather than the actual flora in the
gastrointestinal tract, and they each have different
criteria for recruitment into the study and different
9
methods for data capture and analysis, they all report
significantly higher levels of bowel problems than are
found amongst non-autistic controls. A recent review
of 11 different studies found that the incidence of
gastrointestinal problems varied, affecting between
17% and 91% of children with autism, but all of the
studies identified a higher incidence of problem than
was found in controls.3 While there is a desperate
need for more research, it is clear that many children
with autism suffer with bowel problems. This, in turn,
will be a reflection of the inability of the immune
system to regulate the flora found in the gut.
It now seems that particular forms of bacteria appear
in much larger numbers in the bowels of children
with autism than in those without the condition.
In the early 2000s, Sidney Finegold and colleagues
found an elevated presence of some species of
clostridia in children with autism. More recently,
others have identified the bacterium Sutterella and
Desulphofibrio as being present in the intestinal walls
of autistic children and as such, these organisms
will be triggering the body’s immune system and
causing inflammation at the site of the damage. In
addition, it now seems that this immune activation
is not confined to the original site and that the
immune messengers, or inflammatory cytokines,
can cause inflammation in the brain as well as the
bowel. Researchers have also found that these
elevated cytokines are particularly associated with
the children who develop normally and then regress
into autism and that the severity of the symptoms
positively correlates with cytokine levels. When they
have looked at the brains of deceased people who
had autism during their lifetime, other researchers
have found signs of neuro-inflammation in the cells in
particular parts of the brain.
Immune dysfunction and Autistic Syndrome Disorder
The reasons for the underlying immune problems that
trigger this condition are likely to include exposure to
pathogens in the womb or after birth. It has long been
known that viral infection can have a devastating
impact on immunity. Once infected with viruses like
influenza, HIV and measles, mammals are known to
be more vulnerable to secondary infection. Measles
– in both its wild and attenuated vaccine strains - has
been known to cause diseases of the gastrointestinal
tract, including inflammatory bowel disease, as well
as having profound immunosuppressive effects.
The fact that many – but by no means all – of the
parents of children with autism report that their
child regressed after their vaccination for Measles
Mumps and Rubella (MMR) is likely to reflect this
immune-reactive and suppressive effect. Our son
had a vaccination for Meningitis C on the same day
as his first MMR shot. Sometime later he developed
a high fever and a measles-like rash all over his body.
We assumed this was just a viral illness, and he slept
it off in a couple of days. However, he was never the
same again. The introduction of four viruses at once
could well be a contributing factor to explain why his
immune system was compromised such that it could
no longer regulate his microbiota.
Similarly, there are documented cases of children
born with physical and mental disorders after their
mothers had rubella during pregnancy. If a child
has a compromised immune system due to a viral
infection that is passed on by the mother in-utero,
encountered in the environment or injected via a
vaccine, this is likely to make it very much harder for
their immune systems to protect the integrity and
function of the body. While this is clearly visible in
relation to secondary infections that trigger some
form of immune response, it is also significant, albeit
less obvious, in relation to the regulation of the
bowel’s microbiota. It seems plausible that autism is a
product of a breakdown in our symbiotic relationships
in the gut, caused by changes in the immune system
once already impacted by a primary viral assault.
Administered in order to protect the body from
infectious assault, vaccinations could be eroding
the ability of the body to maintain the symbiotic
3 Buie, T. et al. (2010) Evaluation, diagnosis and treatment of gastrointestinal disorders in individuals with ASDs: A consensus report. Pediatrics, 125, S1-S18.
10
relationships needed for good long-term health.
Certainly our son deteriorated slowly after he had
the four viral vaccinations at once, and he completely
regressed after his MMR booster shot in the spring
of 2007 (when he was three and a half). In what
may be the greatest irony of the twentieth century,
vaccinations to protect us from the bugs outside our
bodies may well be deleterious to the balance and
management of the ones already inside us, thereby
undermining our longer-term health and well-being.
If someone has a compromised immune system,
likely due to exposure to pathogens and inherited or
acquired weaknesses in the bowel microbiota, they
could be vulnerable to the bowel flora disturbances
that can ultimately lead to something as serious
as autism. As such, we think that autism results
from a process whereby the victim might already
be vulnerable before their immune system suffers
viral assault and then becomes unable to regulate
the bowel flora in the gastrointestinal tract. When
this happens, some of the bacteria may be able to
penetrate the wall of the gut while the dysbiosis or
imbalances of the bowel flora will also impact on
the body’s nutritional status, further deepening the
damage being done to both body and mind.
As we outline in relation to our experience of treating
Eric in the following chapter, the breakdown of
complex carbohydrates, the absorption of B12 and
iron are all disrupted in a vicious cycle of decline,
further impacting on the core bio-chemical processes
on which the body depends. Once the immune system
is damaged, and the symbiosis with our microbiota is
disrupted, it impacts on the body’s nutritional status
and well-being such that it may be unable to recover
again. We now believe that autism is the product of an
immune dysfunction that cumulatively disrupts all the
major bio-chemical systems that facilitate growth and
cognition in the developing child. As we know only too
well, the end result is a child who hardly eats, rarely
excretes, barely sleeps, can’t concentrate, struggles to
communicate and is in absolutely no shape to learn.
While we call this autism, we are still at the frontier
of really understanding the processes behind the
condition. As parents, we can’t afford to wait until
we fully understand all the links in the chain and we
think that we now know enough to make a dramatic
difference to the health, well-being and mental
capacity of our children. We might not be able to undo
all the damage but there is a lot that can be achieved
as we outline in more detail in the following chapter.
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Chapter 3: What can be done?
At the time of writing this pamphlet – winter 2012/3
– we are four years into our journey with autism. At
the start, we knew nothing about it, and even less
about the processes that we outlined in the previous
chapter. Like many parents in the autism universe,
we were given the diagnosis and left to find things
out for ourselves. While we knew that Eric was
sick, we had no idea what to do. What’s more, we
spent a fair bit of time trying to get help from the
National Health Service before we realised that it had
absolutely nothing to offer. There are few things more
frustrating than getting an appointment to see an
allergist, a gastroenterologist or neurologist, spending
hours outside their office while your autistic child
demolishes the toys and drives you and the other
patients to despair with their wailing, only to be met
by ignorance and what feels like a lack of concern.
Even before Eric was officially described as autistic,
we saw a leading allergist at St Thomas’ Hospital who
told us that the parents of children with behavioural
problems often hide behind ‘so-called food allergies’
as an excuse for the problem. We had gone expecting
the specialist to recognise the problem Eric had with
the digestion of milk and give us some explanation
for his eczema, only to find that our parenting skills
were in question. This doctor organised a skin test
whereby different substances were applied to Eric’s
arm with a little prick in the centre of each to see if
the body responded, but Eric’s immune system made
no response. He was not instantly sensitive to any
of the common substances applied to his arm. In his
letter to our GP, the consultant reported that Eric did
not have “the type of profile of a child whose eczema
is sensitive to food.”
When we later found out that Eric had autism, and
were reading parents’ stories about the particular
significance of wheat and dairy for the health of their
children, we decided to write this consultant a letter.
As we put it, we were concerned that there would be
“many other parents who notice the development
of bowel problems and reactions to particular foods
affecting their child’s well-being, skin and behaviour
well before realising that they are dealing with
autism. They may present at your clinic … Children
like Eric need intensive analysis of their digestive and
immunological systems to explore why they react to
particular foods … Eric now has more eczema than
ever and he regularly erupts in skin rashes with no
obvious cause. We feel that he is in need of just the
immunological panel tests and exploration of other
metabolic function that might have been triggered
by our visit to you.” He wrote back saying that he
was “aware of the rather controversial association
between delayed food allergies, GI [gastro-intestinal]
problems, and behavioural problems” but he was not
convinced there was sufficient evidence for making
this case.
Remarkably, our experiences with two teams of
gastroenterologists were no better than this. We
took Eric to a paediatric gastroenterology clinic at the
Chelsea and Westminster Hospital in February 2008
and were initially very excited to be offered an X-ray.
Eric had to swallow some tiny plastic markers four
days before the X-ray was taken. The resulting picture
showed these fragments to be distributed throughout
his gut, which was swollen with faeces from his ribs
to his rectum. The doctor confirmed constipation and
mega-rectum, and then prescribed yet more laxatives.
Over several visits to this clinic, and encounters with
several specialists (because you rarely see the same
person twice), no one explained why a four-year old
child could be so chronically constipated that nothing
came out of his bowel, and no further tests were
performed. When we reported that the laxatives
weren’t working and we had started doing nightly
enemas to get the bowel moving, we were advised
that when Eric got to an age when this would no
longer be feasible, it would be possible to do a small
operation to add a tap under the rib cage to flush
the gut from the top rather than go in at the bottom.
Incredibly, the only potential treatment was to inject
botox into the bowel muscle to help it relax or to
remove a part of the bowel. Eric was under-weight,
��
he wasn’t eating, sleeping or defecating, he was
suffering from eczema and neurological problems,
and the doctors seemed barely concerned. They
treated it as completely normal. To this day, we find
this extraordinary. What’s more, our own experience
of treating Eric, and the success we have had in
getting his bowel to work, in eradicating his eczema,
in helping him to grow, and most recently, in seeing
him learn, could be the basis of new treatments, and
yet us parents are generally patronised or blithely
ignored.
Over the past four years we have moved away from
the darkest part of the tunnel of autism. Through
reading and hearing about other people’s ideas and
experiences, and taking our own small steps into
different treatment possibilities, Eric is now healthier
and happier than he has been for years. At our last
parents’ meeting at his mainstream school, Eric’s
teacher and his two teaching assistants were thrilled
to report that Eric is now starting to write, that he is
moving on with his reading and counting (which is still
at pre-school level but had been static for years), and
perhaps most importantly, that he has been playing
with his classmates. While Eric is years behind his
peers, and regressed and/or failed to develop during
the years between his second and his eighth birthdays
(over two-thirds of his lifetime), he is now starting to
learn. This means that his brain is not permanently
damaged and it gives us great hope for the future.
Treatment phase one: Getting the bowel to budge
Since we started this journey we have had four
different phases of treatment. In the first phase (early
2008-late 2009) we tried to get Eric’s bowel moving
and given the failure of laxatives, we decided to try
using enemas. The results were amazing and we
saw an immediate improvement in Eric’s well-being.
His distended stomach started to shrink, he became
more interested in food and he stopped crying and
tantruming as much as he had. Most importantly,
we were relieving him of the impacted faecal matter
that had been stuck inside him for months. Over the
weeks, and despite our expectations, this nightly
ritual revealed that Eric’s poo was remarkably soft.
While we expected to find his bowel full of the hard
lumps that he had occasionally managed to produce
in the past – what we called his rabbit poos – we
found that his stool was soft but it still wouldn’t come
out on its own.
At the same time, we discovered the work of the
acclaimed Australian gastroenterologist, Professor
Tom Borody, who argues that soft-stool constipation
is common in people with bacterial change in
their gut. Borody has successfully treated patients
using antibiotics and probiotics to rebalance their
bowel and this chimes with the experience of other
doctors in the USA and more recently, in France. The
biochemist William Shaw has shown that children
like Eric tend to have high levels of a compound
called propionic acid in their urine and that this is
produced by some species of clostridia that live in
the gut. Armed with this knowledge, doctors in the
USA have been treating the clostridia with antibiotics
such as flagyl and vancomycin, while also advocating
probiotics to repopulate the ecosystem found in the
gut. When treated this way, the levels of propionic
acid fall while the presence of lactobacillus increases.
At the same time, many children experience a
subsidence in their autistic symptoms, and in a few
cases, they have lost their diagnosis altogether.
Mirroring this experience, when scientists have
injected rats with significant amounts of propionic
acid they display autistic symptoms: backward-
walking, paw-padding, wet-dog shakes and become
socially isolated, hyperactive and hyper-reactive. Once
the acid wears off, however, the rats return to their
normal sociable rat-like state, showing no signs of
lasting effect.
Treatment phase two: Antibiotics and change in the
bowel
After reading about this work and getting increasingly
frustrated that nightly enemas were not triggering
the self-generated bowel mobility that we had
expected, we started the second phase of Eric’s
treatment (late 2009-late 2010). We decided to test
Eric’s stool to measure his cultured bowel flora (via
a comprehensive stool analysis) and to analyse his
13
urine to identify any propionic acid (via a metabolic
analysis test). His stool and urine were Fedexed to
the USA and a few weeks later, we knew the worst:
Eric had very high levels of propionic acid (well above
the reference range) and no sign of any lactobacillus
growing in the stool that was cultured. Armed with
these results, we were able to find a private doctor
who was willing to take these test results seriously
and he advised using a very low dose of an antibiotic
to treat Eric’s bowel.
Just six days after starting on antibiotics, Eric sat on
the toilet and did a poo as if it was the most natural
thing in the world. We were over the moon. We
had waited more than a year for this moment. We
had almost stopped believing that Eric would ever
be able to poo on his own. In addition, he started
to change. Before, he had been constantly running
round in circles, flapping and clapping, making noises
and barely registering anything around him. After the
antibiotic, he sat down at the table and focused on
his food. His sleeping, eating and communication all
started to improve and he was a much calmer and
happier child. A big cloud was lifted from over our
heads. We could think about going away on holiday
without having to manage an enema every night and
we had a child who was no longer wasting away or
running us ragged all night.
During that time, we hoped and prayed that the
antibiotic treatment would trigger some permanent
change in the bowel. Given that the bowel was
working with treatment, we thought that this might
mean it could work without it in future. Yet every time
we stopped using the antibiotics, the constipation
and behavioural problems returned. Disappointed,
we had to look again at what we could do – not least
because we knew that antibiotics could never solve
the problem long-term.
Treatment phase three: Getting rid of the lead
Soon after the autism diagnosis, we had read about
the therapies that some parents were using to treat
their children for heavy metal toxicity. In late 2010,
we decided to explore whether this might be an issue
for us. We sent some of Eric’s hair away for analysis
in America and got the results just a few weeks later:
Eric had levels of antimony and lead that were off the
scale. A normal level of lead – if such a thing exists –
should be something less than 0.7 ug/gram and Eric’s
measured 4.960. (and the test results are included
at the end of this pamphlet). We had had our home
water supply checked as soon as we knew Eric had
autism and the water board had found that the levels
of lead were too high. While we’d changed the pipes
in early 2008, that was two years too late. At a crucial
stage of his life, Eric had been drinking, bathing and
eating food cooked in water that was full of lead and
two years later, the hair test showed this exposure.
We were back to blaming ourselves. Maybe Eric
had lead poisoning as a result of our moving to an
old house with lead water pipes and old lead paint.
If you look up the symptoms of lead poisoning on
Wikipedia you certainly find that it describes the
symptoms of autism. When we last looked it told us
that: “The classic signs and symptoms in children are
loss of appetite, abdominal pain, vomiting, weight
loss, constipation, anaemia, kidney failure, irritability,
lethargy, learning disabilities, and behavioural
problems. Slow development of normal childhood
behaviours, such as talking and use of words, and
permanent mental retardation are both commonly
seen.”
We had to do something and in December 2010
we completed two urine tests which recorded the
presence of toxic metals in Eric’s urine before and
after using a small dose of a chelating agent called
Dimercaptosuccinic acid (DMSA). This agent binds to
heavy metals in the body, allowing them to be excreted
via the urine. Before using the DMSA, Eric’s urine
metals test again showed elevated levels of lead (at 7.1
ug/g creatinine when the reference range peaked at
5) but after taking the DMSA, he was found to have as
much as 22 ug/g creatinine of lead in his urine (more
than four times the top of the reference level). All other
metals, including antimony and mercury, were within
the reference ranges used in these tests.
14
Thus in the third phase of treatment (late 2010-late
2011) we worked with a private doctor to use a very
low dose of DMSA to remove some of this lead over
a number of months. Every weekend we gave Eric a
small amount of the DMSA every four hours during
the day, giving him a rest during the week. We re-
tested his urine after a few months (in April 2011),
again in September 2011, and again in February
2012. Over this time the lead excreted after DMSA
was as high as 42 ug/g creatinine (more than 8 times
the reference range limit), coming down to 16 ug/g
in September 2011 and 9.4 ug/g in February 2012.
Remarkably, as soon as we started getting rid of the
lead, we stopped having to use the antibiotic and Eric
was happily emptying his bowel every day. For the
first time in years, he also started to sleep all the way
through the night. The fact that the DMSA seemed to
work, that the lead levels were falling, and Eric was
getting better, meant that we felt confident enough to
stop using the DMSA.
Yet just when we thought things were going to keep
getting better, we had another bleak mid-winter
between 2011 and 2012. For no obvious reason, Eric
started to lose his ability to communicate and started
talking in an odd and unintelligible way. He re-started
the toe-walking that he had done years earlier
and no longer focused on the computer or books.
To our dismay, Eric became afflicted with terrible
constipation and it looked like we were going back to
where we had started, with a very sick child.
Treatment phase four: A more holistic approach
From early 2012, and faced with another regression,
we had to rethink. We reflected on everything
that had gone before and tried to develop a more
comprehensive approach. In the past, each phase of
treatment was helpful in tackling certain aspects of
the condition: controlling the bowel flora through
enemas, antibiotics and/or diet and probiotics; and
helping the body to get rid of heavy metals. But we
were doing these things separately and not together.
While one thing was helping, other systems were not
being supported. In addition, we had added basic
support like vitamins and cod liver oil, and always
used probiotics, but we were not very systematic
about it. We knew that nutritional support was
important, but we were rather ad-hoc. In hindsight,
we really under-estimated its importance. We
assumed that because Eric was eating a good diet, he
had to be getting a good balance of nutrition out of
that food. This was a very serious mistake.
In our fourth and current phase of treatment (early
2012 to present) we have focused much more on
the nutritional aspects of treatment. Given that the
human body is a composite of tiny cells that each
depend upon a complex of chemicals – and bio-
chemical processes – to function, it is absolutely
essential that the body ingests, produces and
processes the chemicals it requires. We have done
some testing that looks at Eric’s biochemical status
– measuring some of the chemical building blocks
that the body needs to function – such as amino
acids – as well as the products of some of the body’s
essential processes such as digestion, the cellular
energy (or Krebs) cycle and detoxification. As outlined
below, these test results have identified major
imbalances in Eric’s biochemistry and when we have
added nutritional supplements, the results have been
amazing. In the early stage of this phase of treatment,
we also went back to look at his gut and we have
been using some herbs that act as natural anti-
microbials and gone on to a much stricter diet that
avoids the ingestion of all complex carbohydrates. In
combination, the herbs, diet and nutritional support
have made a dramatic difference. Eric’s overall health
and mental capacity are now much improved.
To try to reduce the impact of bowel dysbiosis, we
have used the herbal combination recommended
by the American biochemist Dr Amy Yasko. This
comprises a daily treatment of a few drops of oregon
grape, myrrh, golden seal, oregano oil and uva ursi.
When we first used these in early 2012, they produced
a terrifying and yet miraculous effect. Within a few
hours, Eric started screaming and trantruming, but
he also started to regain his language. Within a few
days he was much calmer, started to go to the toilet
again and his language came back. For us, this was
15
like a light bulb going on and off, demanding we sit up
and take notice. Given that these simple herbs were
designed to target the bowel flora, we now felt more
confident that the bowel flora really were central to
his condition. We had been off down the toxic metal
track and important though it was, we needed to get
back to the bowel. Since then we have also tried other
herbs that are historically associated with treating the
gut, such as black walnut and artemisia.
This experience also prompted us to go back and
revisit Eric’s diet as a natural way to try to reconfigure
the flora at home in his gut. When Eric was first
diagnosed we had spoken to the nutritionist Natasha
Campbell McBride and read her book Gut and
Psychology Syndrome. Campbell McBride makes
the case for the Specific Carbohydrate Diet (SCD) to
restore the balance of flora in the intestinal tract.
This diet was developed to treat coeliac and crohn’s
diseases and involves removing all complex sugars
from the diet for a number of years and allowing only
fruit and honey (simple sugars) as sweeteners. The
SCD means stopping the consumption of all grains
and starches (wheat, oats, corn, rice, soya and potato)
and focusing on meat, fish, eggs, vegetables, nuts
and fruit. While you can eat home-made yoghurt and
cheese once the bowel has started to heal, we have
never managed to get Eric to tolerate dairy products,
and his diet has had to remain completely free of
these foods.
We know that this diet sounds like mission
impossible. It means that you remove the staple foods
of the modern Western diet and Eric – like the rest of
us – used to love his Rice Krispies, Frosties, crisps, rice
cakes, pasta and toast. In fact, given half a chance,
that is all Eric ever wanted to eat! He would stand
at the pantry door for much of the day, asking and
crying for the food we were required to drop and we
thought it would be impossible to do it for more than
a day or two at the most.
We were prepared for the return of screaming and
trauma and began the SCD diet over the Easter holiday
in 2012. We hid the forbidden boxes and packets in
the attic and went cold turkey on food. In the event,
however, it was remarkably – and unbelievably – easy.
Within a few days, Eric was tucking into large bowls
of organic meat and vegetable stew as though it was
the most normal thing in the world. It took just a
day or two for him to lose his cravings for complex
carbohydrates or starchy foods.
For the past twelve months, Eric has been eating a
diet fit for a king. He has ground almond and egg
pancakes, organic bacon, tomato, and a fruit and
vegetable juice for breakfast. He eats salad, ham,
chicken or tuna with a banana for lunch at his school.
In the evening, he tucks into meat, vegetables, fruit
and nuts. For treats we give him simple biscuits and
muffins made from ground nuts or coconut with fruit
and honey to sweeten them, or fruit on its own. Even
though we cannot eat out and have to take a camping
stove and a pile of organic meat and vegetables with
us whenever we go away for more than a day, this
diet is worth it. Eric’s improved health and well-being
are the reward.
So, in this fourth and current phase of his treatment,
Eric has had daily bowel movements (something
that we once thought would be impossible); he
eats more – and more healthily – than he ever has
done before; he sleeps for 10 hours a night without
interruption and is able to drop off on his own when
put in to bed; and most amazingly, he is making
progress in communication and learning at school. In
what seems like relatively simple steps, which don’t
require mainstream medicine, this formula has had
dramatic effects. But as well as the gut herbs and diet,
the additional ingredient has been a more careful
approach to nutrition.
In April 2102 we sent off another vial of urine to
the labs in America to look at Eric’s amino acids
– something that we hadn’t done since 2008. These
results brought us down to earth with a bump.
We found that most of these essential chemical
compounds were incredibly low. Eric’s levels of
methionine, cysteine, aspartate, glutamine, cysteine
and glycine (6 of the 20 amino acids required in
16
the body) were at or below the bottom of the
reference range. In addition, the levels of serine
and cystathionine, which are important precursors
to glutathione, the molecule that is critical for
detoxification, were also well below the reference
range. In contrast, the levels of 1-Methylhistadine and
3-Methylhistadine were way off the scale at the top
indicating muscle depletion in the body’s search for
nutrition. The analysis provided by the laboratory put
many of these findings down to a low dietary intake
and/or poor assimilation of folic acid and vitamin
B12, and the absence of sufficient vitamin B6 and
magnesium. We had been giving Eric vitamin B12
orally for years – since first testing his amino acids
in 2008 – but it was clear it had not been absorbed.
The test results exposed the extent to which Eric’s
basic biochemical pathways were not functioning
at an adequate level. Eric’s body and brain were
being starved of the essential nutrition critical to the
body’s energy, neurology and detoxification. Most
obviously, Eric was going to have very limited levels of
glutathione in his system, helping to explain why his
lead was so high. The test was a sobering reminder of
the importance of getting this right.
Since we got those test results in April 2012, we
have been using methyl-B12 and added the core
vitamins and minerals that his body was missing.
In August 2012, we tested again (and both sets of
results are reproduced at the end of this pamphlet).
It was found that Eric now had normal levels of
Methionine, Cysteine and 1-Methylhistidine in his
urine. The change was dramatic. Whereas the April
test had put his level of Methionine well under the
bottom of the reference range, the August figure
showed it to be right in the middle of the range. His
cysteine level had done the same. Eric’s biochemistry
was changing, and this was reflected in his better
functioning too. This matches the findings of
researchers lead by Professor Jill James in the USA.
She and her colleagues found that autistic children
had higher levels of oxidative stress than controls,
but when treated with folinic acid, trimethyl-glycine
(TMG) and subcutaneous injections of methyl-B12,
their glutathione levels returned to normal.
Our experience has inspired us to carry on trying to
improve Eric’s nutritional status and on that basis,
his biochemical functions and health. It has proved
to us that autism has an underlying physiological
explanation. We now know that improving the
function of the body can help to bring the autistic
brain back to life.
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Chapter 4: What’s next?
Over the past four years there have been times when
autism felt like bereavement. The child you longed
for has been born and then mysteriously regressed
into a world of its own. The professionals tell you that
this is ‘just one of those things’ and your child will
simply be ‘different’. Yet living with a child who hardly
eats, sleeps or poos, is one of the hardest things you
could do. The acute anxiety and long-term sleep-
deprivation have taken us both to the brink of nervous
breakdowns, not to mention divorce. We have had
some really dark times and felt terrible rage at the
incomprehension, ignorance and apparent lack of care
displayed by the so-called professionals. Autism can
be a very lonely experience. As a parent you become
too exhausted for a social life and even if you do,
people look askance as your child screams incessantly,
destroys the toys and fails to make any friends. At best
you get sympathy and at worse, you’re condemned.
The only way out seems to be to stay hidden at home.
Although we have not discussed it here, we have
had difficult battles to get a suitable statement to
support Eric in school. We have had some remarkably
confrontational meetings with the Head Teacher
and Special Needs Coordinator at Eric’s first primary
school. They clearly didn’t want us there but were
unwilling to say so. The Head Teacher used the money
provided in Eric’s statement to employ teaching
assistants who could be moved or sacked without
consulting us. Eric would get to know a lovely new
assistant only to find that he – and we – had to build
a new relationship with a new person the following
year. It was dreadful going back to school after
the long summer holiday to find that Eric’s former
assistant had gone and we had to start from scratch
with a new one and a new class teacher as well. The
school were trying to manage us rather than focusing
on the needs of our son.
Learning to walk away from services that don’t
provide anything resembling adequate provision
in both education and health has been one of the
greatest lessons for us. What’s more, it’s allowed us
to find people who do want to help. More recently
we have been blessed to find a new school where
Eric is truly supported. The contrast is extraordinary.
Eric’s former teaching assistant – due to be sacked
at the old school – was employed by the new school
and would not be moved without consulting us. The
teachers are open to learning about autism and they
are always willing to try new ideas and techniques for
getting Eric to learn. Going to school is now a much
more positive experience. We have also been able
to increase the more specialist Applied Behavioural
Analysis (ABA) support that he’s having at home.
We have worked with a consultant and tutors to
develop an evolving programme that breaks down
tasks into their smallest parts and reinforces learning
by praise and incentives. The team bring a wind of
positive energy into the house and have been getting
him to work on his reading, writing, numbers and
communication skills. They bring out the best in us all.
So as well as the pain, autism has brought us great
rewards. Not only do we have a loving and much
treasured son, who brings us great joy, but we have
met a new group of positive people. More than that,
however, autism has also taught us to re-learn and re-
examine many of the most important things about life.
As we outlined in chapter 2, autism has made us
rethink what it means to be human. We can’t neglect
the flora that live in our bowels; they are essential to
our immunology and biochemistry, and on that basis,
they are part of what we all refer to as ‘human’. We
are a product of our symbiosis with the microbiota
that lives in our gut and we depend upon those
relationships. The twentieth-century model of health
and medicine that tries to contain and kill potential
pathogens is clearly outdated as it fails to recognise the
extent to which we are dependent upon them. It is also
outdated in splitting up the body into its constituent
parts. Autism shows that we need to treat the body
as a whole, including recognition of the symbionts
that live in our gut. It is also essential to look at the
underlying biochemical functions that might explain
18
particular problems we have. The range of difficulties
facing a child with autism are considerable and, as we
have described, these can include the gut, the immune,
neurological and detoxification systems. Contemporary
medicine might, at best, see a series of problems,
rather than the bigger picture that explains all the
parts. Bogged down in the different trees of their
specialisms, doctors can be unaware of the connections
that make up the wood as a whole.
In addition, doctors and many researchers are often
overwhelmed by the drive to find a drug-based
remedy for each separate disease. Looking at the
underlying systems of the body is rarely included in
their approach. The future must be to see if a disease
or dysfunction can be treated through nutritional
interventions based on biochemical analysis in a more
functional approach to health that seeks to help the
body to heal itself.
Our experience with autism exposes the need for a
new paradigm of health and disease. In a country
like the UK, people are living in better conditions
than ever before and we rarely fall victim to acute
infections as we did in the past, but at the same time,
we are plagued by chronic disease. Every classroom
has several children who have asthma, eczema and
allergies – not to mention the more serious problems
of ADHD, dyslexia, dyspraxia and autism. While these
conditions are treated as separate problems, unrelated
to each other, to us, they signal the underlying
pressure on the immune system. The increasing
incidence of bowel problems like crohn’s and coeliac
diseases, auto-immune conditions like arthritis,
diabetes and lupus, and cancers, are all signs of a
similar kind of dysfunction in the immune-biochemical
balance that we have described for autism.
Mainstream debate has yet to recognise autism as
being a matter of physical health. This has forced
parents like us to draw upon our own communities to
try and understand the condition and to share ideas
about what we can do. DIY health has forced us to
recognise the importance of functional medicine:
helping our bodies to heal themselves. Our hope
is that the parents of children with autism will take
heart from our story. We know that we can nurture
our children to much better health.
19
Key research resources
Ashwood, P. Krakowiak, P. Hertz-Picciotto, I. Hansen,
R. Pessah, I. and van de Water, J. (2011) Elevated
plasma cytokines in autism spectrum disorders
provide evidence of immune dysfunction and are
associated with impaired behavioural outcome.
Brain Behaviour and Immunology, 25, 1, 4045.
Buie, T. et al. (2010) Evaluation, diagnosis and
treatment of gastrointestinal disorders in
individuals with ASDs: A consensus report.
Pediatrics, 125, S1-S18.
Finegold, S.M. et al (2002) Gastrointestinal microflora
studies in late-onset autism. Clinical Infectious
Diseases, 35 (Supplement 1), S6-S16.
Finegold, S.M. et al (2011) Desulfovibrio species are
potentially important in regressive autism. Medical
Hypotheses, 77, 2, 270-4.
James, S.L. et al (2004) Metabolic biomarkers of
increased oxidative stress and impaired methylation
capacity in children with autism. American Journal
of Clinical Nutrition, 80, 6, 1611-7.
Maynard, C.L. Elson, C.O. Hatton, R.D. and Weaver,
C.T. (2012) Reciprocal interactions of the intestinal
microbiota and immune system. Nature, 489, 13
September, 231-241.
Margulis, L. and Sagan, D. (2002) Acquiring genomes:
A theory of the origin of species. New York: Basic
Books.
The Economist (2012) The Human microbiome: me,
myself, us. 18 August, available from:
http://www.economist.com/node/21560523
(last accessed on 20.08.12)
Vaishnava, S. Yamamoto, M. Sverson, K.M. Ruhn,
K.A. Yu, X. Kroen, O. Ley, R. Wakeland, E.K. and
Hooper, L.V. (2011) The anti-bacterial lectin RegIIIy
promotes the spatial segregation of microbiota
and host in the intestine. Science, 334, 14 October,
255-258.
Vargas, D.L. Nascimbene, C. Krishnan, C. Zimmerman,
A.W. and Pardo, C.A. (2005) Neuroglial activation
and neuroinflammation in the brain of patients
with autism. Annals of Neurology, 57, 1, 67-81.
Rouse, B.T. and Horohov, D.W. (1986)
Immunosuppression in viral infections. Reviews of
Infectious Diseases, 8, 6, 850-873.
Slifka, M.K. Homaa, D. Tishon, A. Pagarigan, R. and
Oldstone, M.B.A. (2003) Measles virus infection
results in suppression of both innate and adaptive
immune responses to secondary bacterial
infection. The Journal of Clinical Investigation, 111,
6, 805-810.
Treating Autism and Autism Treatment Trust (2013)
Medical Co-morbidities in Autism Spectrum
Disorders: A primer for health care professionals
and policy makers. Available from internet, address
given below.
Williams B.L. Hornig, M. Parekh, T. and Lipkin, W.I.
(2012) Application of novel PCR-based methods
for detection, quantitation, and phylogenetic
characterization of Sutterella species in intestinal
biopsy samples from children with autism and
gastrointestinal disturbances. mBio, 3, 1, e00261-11.
Yap, I.K.S. Angley, M. Veselkov, K.A. Holmes, E. Lindon,
J.C. and Nicholson, J.K. (2010) Urinary metabolic
phenotyping differentiates children with autism
from their unaffected siblings and age-matched
controls. Journal of Proteome Research, 9, 2996-
3004.
20
Useful organisations and websites
Treating Autism is a parent-led charity devoted to
finding and promoting biomedical treatments for
children with autism. The organisation runs local
groups for parents and regular conferences to bring
parents, practitioners and researchers together. They
have an information-packed website:
http://www.treatingautism.co.uk/
Equivalent organisations based in the USA are:
Talk about Curing Autism:
http://www.tacanow.org/about-taca/
Generation Rescue:
http://www.generationrescue.org/
In relation to research into the origins and treatment
for the condition, the Autism Research Institute was
set up by Dr Bernard Rimland in 1967 in California and
it has been devoted to research and advocacy ever
since, http://www.autism.com/
More information about the Specific Carbohydrate
Diet can be found here:
http://gapsdiet.com/Home_Page.html
As it says on this webpage, Natasha Campbell
McBride developed what she has called ‘The Gut
and Psychology Syndrome Diet’ on the foundation
of the Specific Carbohydrate Diet (SCD) created by
Dr. Sidney Valentine Haas to heal digestive disorders.
SCD gained great popularity after a mother, Elaine
Gottschall, healed her own child and became an
advocate for SCD. Elaine Gottschall wrote the popular
book Breaking the Vicious Cycle. Intestinal Health
Through Diet but Campbell McBride’s book, Gut and
Pyschology Syndrome, is a very good introduction for
the parents of children with autism.
More information about the use of MethylB12 for
children with autism is available from one of the
earliest exponents of this treatment, a doctor called
James Neubrander based in New Jersey USA:
http://www.drneubrander.com/index.php
The Small Intestine Bacterial Overgrowth website
established by one-time IBD-sufferer, Dr Allison
Siebecker (from Portland, Oregon), has a wealth of
information about this problem and covers the use of
natural herbs to treat it:
http://www.siboinfo.com/
We have had excellent support to deliver a home
programme – with additional support in school using
Applied Behavioural Analysis (ABA) from the parent-
led charity, Peach:
http://www.peach.org.uk/
��
Eric’s test results
1 Elemental analysis of hair sample Date: October 2010 20
2 Urine toxic metals (before provocation with DMSA) (1) Date: November 2010 21
3 Urine toxic metals (post provocation) (2) Date: November 2010 22
4 Urine toxic metals (post provocation) (3) Date: April 2011 23
5 Urine toxic metals (post provocation) (4) Date: January 2012 24
6 Urine amino acids Date: March 2012 25
7 Metabolic analysis and amino acids Date: August 2012 28
MRN: 0001291380Sex: MDOB: October 13, 2003
CHAPMAN WILLSERICPatient: Order Number: D0130659
Completed: October 18, 2010
Received: October 13, 2010
Collected: October 09, 2010
Route Number: A0124680
Breakspear HospitalJean MonroHertfordshire HouseWood LaneHemel Hempstead, Herts HP2 4FDGreat Britain and Northern Ireland
<= 17.3 Aluminum 4.3
<= 0.016 Antimony 0.065
<= 0.080 Arsenic 0.076
<= 1.70 Barium 0.05
<= 0.022 Cadmium 0.015
<= 0.0005 Gadolinium <dl
<= 0.700 Lead 4.960
<= 1.32 Mercury 0.32
<= 0.55 Nickel 0.06
<= 0.0005 Rhodium <dl
<= 0.040 Rubidium <dl
<= 0.0004 Thallium <dl
<= 0.149 Tin 0.090
<= 0.0057 Uranium 0.0023
<= 0.178 Bismuth 0.039
8 5-29
0 1-9
© Genova Diagnostics · A. L. Peace-Brewer, PhD, D(ABMLI), Lab Director · CLIA Lic. #34D0655571 · Medicare Lic. #34-8475
8-136 Copper 9
0.01-1.58 Chromium 0.19
0.001-0.129 Cobalt 0.004
5.2-24.4 Iron 8.9
192-1,588 Calcium 66
<= 0.302 Lithium <dl
<= 174 Potassium <dl
11-122 Magnesium 8
0.04-1.93 Manganese 0.08
0.01-1.24 Molybdenum 0.03
104-206 Phosphorous 135
0.58-1.13 Selenium 0.50
14-426 Sodium <dl
0.01-4.40 Strontium 0.05
41,781-60,894 Sulfur 53,763
0.003-0.108 Vanadium 0.038
119-245 Zinc 166
1 Elemental analysis of hair sample Date: October 2010
��
2 Urine toxic metals (before provocation with DMSA) (1) Date: November 2010
URINE TOXIC METALS LAB #: U101201-2164-1PATIENT: Eric Trevelyan Chapmanwills ID: CHAPMANWILLS-E-00001SEX: Male AGE: 7
CLIENT#: 24146
POTENTIALLY TOXIC METALS
METALS
AluminumAntimony ArsenicBariumBeryllium BismuthCadmiumCesiumGadoliniumLeadMercuryNickelPalladiumPlatinumTelluriumThalliumThoriumTinTitaniumTungstenUranium
RESULT ∝g/g creat
1.7 0.3 323.1 < dl < dl < dl11< dl7.1 0.63.9 < dl < dl < dl0.1 < dl0.5 N/A 0.1 < dl
RESULT
<
<
<
<
<
<
<
<
<
<
<
<
<
<
<
<
<
<
<
<
<
REFERENCE RANGE 60
0.5
117
7
0.6
20
0.5
12
0.4
5
5
15
0.3
1
0.3
0.8
0.05
15
15
0.6
0.04
REFERENCE
WITHIN REFERENCE RANGE
URINE CREATININE
ELEVATED VERY ELEVATED
Creatinine
Comments:
mg/dL
82.3
RANGE
25- 180
2SD LOW 1SD LOW
SPECIMEN DATA
MEAN 1SD HIGH 2SD HIGH
Date Collected: 11/28/2010 pH upon receipt: Acceptable Collection Period: RandomDate Received: 12/1/2010 <dl: less than detection limit Volume: 40 ml Date Completed: 12/2/2010 Provoking Agent: Provocation: PRE PROVOCATIVE Method: ICP-MS
Toxic metals are reported as ∝g/g creatinine to account for urine dilution variations. Reference ranges are representative of a healthy population under non-challenge or non-provoked conditions. No safe reference levels for toxic metals have been established. V12
©DOCTOR'S DATA, INC. ! ADDRESS: 3755 Illinois Avenue, St. Charles, IL 60174-2420 ! CLIA ID NO: 14D0646470 ! MEDICARE PROVIDER NO: 148453 0001395
23
3 Urine toxic metals (post provocation) (2) Date: November 2010
URINE TOXIC METALS LAB #: U101201-2167-1PATIENT: Eric Trevelyan Chapman Wills ID: CHAPMAN WILL-E-00001SEX: Male AGE: 7
CLIENT#: 24146
POTENTIALLY TOXIC METALS
METALS
AluminumAntimony ArsenicBariumBeryllium BismuthCadmiumCesiumGadoliniumLeadMercuryNickelPalladiumPlatinumTelluriumThalliumThoriumTinTitaniumTungstenUranium
RESULT ∝g/g creat
< dl 0.1 243< dl < dl 0.29.7 < dl222.32.6 < dl < dl < dl0.3 < dl1.5 N/A 0.04 < dl
RESULT
<
<
<
<
<
<
<
<
<
<
<
<
<
<
<
<
<
<
<
<
<
REFERENCE RANGE 60
0.5
117
7
0.6
20
0.5
12
0.4
5
5
15
0.3
1
0.3
0.8
0.05
15
15
0.6
0.04
REFERENCE
WITHIN REFERENCE RANGE
URINE CREATININE
ELEVATED VERY ELEVATED
Creatinine
Comments:
mg/dL
105
RANGE
25- 180
2SD LOW 1SD LOW
SPECIMEN DATA
MEAN 1SD HIGH 2SD HIGH
Date Collected: 11/29/2010 pH upon receipt: Acceptable Collection Period: RandomDate Received: 12/1/2010 <dl: less than detection limit Volume: 40 ml Date Completed: 12/2/2010 Provoking Agent: DMSA Provocation: POST PROVOCATIVE Method: ICP-MS
Toxic metals are reported as ∝g/g creatinine to account for urine dilution variations. Reference ranges are representative of a healthy population under non-challenge or non-provoked conditions. No safe reference levels for toxic metals have been established. V12
©DOCTOR'S DATA, INC. ! ADDRESS: 3755 Illinois Avenue, St. Charles, IL 60174-2420 ! CLIA ID NO: 14D0646470 ! MEDICARE PROVIDER NO: 148453 0001395
24
URINE TOXIC METALSLAB #: U110503-2283-1PATIENT: Eric Trevelyan Chapman WillsID: CHAPMAN WILL-E-00001SEX: MaleAGE: 7
CLIENT#: 24146DOCTOR: Jean Monro, MDBreakspear HospitalHertfordshire HouseHemel Hempstead, HP2 4FD ENGLAND
POTENTIALLY TOXIC METALS
RESULT REFERENCE WITHIN VERY
METALS µµµµg/g creat RANGE REFERENCE RANGE ELEVATED ELEVATED
Aluminum 220 < 60
Antimony 0.5 < 0.5
Arsenic 230 < 117
Barium 11 < 7
Beryllium < dl < 1
Bismuth < dl < 20
Cadmium 0.3 < 0.5
Cesium 9 < 12
Gadolinium < dl < 0.4
Lead 42 < 5
Mercury 2 < 5
Nickel 13 < 15
Palladium < dl < 0.3
Platinum < dl < 1
Tellurium < dl < 0.8
Thallium 0.4 < 0.8
Thorium < dl < 0.05
Tin 1.6 < 15
Titanium N/A < 15
Tungsten 0.2 < 0.6
Uranium 0.08 < 0.04
URINE CREATININE
RESULT REFERENCEmg/dL RANGE 2SD LOW 1SD LOW MEAN 1SD HIGH 2SD HIGH
Creatinine 131 25- 180
SPECIMEN DATA
Comments: Results checked.Date Collected: 4/23/2011 pH upon receipt: Acceptable Collection Period: RandomDate Received: 5/3/2011 <dl: less than detection limit Volume: Date Completed: 5/7/2011 Provoking Agent: DMSA Provocation: POST PROVOCATIVEMethod: ICP-MS
Toxic metals are reported as µg/g creatinine to account for urine dilution variations. Reference ranges are representativeof a healthy population under non-challenge or non-provoked conditions. No safe reference levels for toxic metalshave been established. V12
©DOCTOR’S DATA, INC. ADDRESS: 3755 Illinois Avenue, St. Charles, IL 60174-2420 CLIA ID NO: 14D0646470 MEDICARE PROVIDER NO: 1484530001395
4 Urine toxic metals (post provocation) (3) Date: April 2011
25
5 Urine toxic metals (post provocation) (4) Date: January 2012
LAB #: U120201-2363-1PATIENT: Eric Trevelyan Chapman WillsID: CHAPMAN WILL-E-00001SEX: MaleAGE: 8
CLIENT #: 24146DOCTOR: Jean Monro, MDBreakspear HospitalHertfordshire HouseHemel Hempstead, HP2 4FD ENGLAND
TOXIC METALSRESULT REFERENCE WITHIN
µµµµg/g creat INTERVAL REFERENCE OUTSIDE REFERENCE
Aluminum (Al) 5.3 < 60
Antimony (Sb) < dl < 0.5
Arsenic (As) 27 < 117
Barium (Ba) 6.6 < 7
Beryllium (Be) < dl < 1
Bismuth (Bi) < dl < 20
Cadmium (Cd) 0.4 < 0.5
Cesium (Cs) 12 < 12
Gadolinium (Gd) < dl < 0.4
Lead (Pb) 9.4 < 5
Mercury (Hg) 1.6 < 5
Nickel (Ni) 9.2 < 15
Palladium (Pd) < dl < 0.3
Platinum (Pt) < dl < 1
Tellurium (Te) < dl < 0.8
Thallium (Tl) 0.3 < 0.8
Thorium (Th) < dl < 0.05
Tin (Sn) 0.9 < 15
Tungsten (W) 0.4 < 0.6
Uranium (U) < dl < 0.04
URINE CREATININERESULT REFERENCE
mg/dL INTERVAL -2SD -1SD MEAN +1SD +2SD
Creatinine 46.3 25- 180
SPECIMEN DATA
Comments:
Date Collected: 1/29/2012 pH upon receipt: Acceptable Collection Period: timed: 9 hoursDate Received: 2/1/2012 <dl: less than detection limit Volume: Date Completed: 2/2/2012 Provoking Agent: DMSA Provocation: POST PROVOCATIVEMethod: ICP-MS Creatinine by Jaffe Method
Results are creatinine corrected to account for urine dilution variations. Reference intervals and corresponding graphsare representative of a healthy population under non-provoked conditions. Chelation (provocation) agents canincrease urinary excretion of metals/elements. V13
©DOCTOR’S DATA, INC. ADDRESS: 3755 Illinois Avenue, St. Charles, IL 60174-2420 CLIA ID NO: 14D0646470 MEDICARE PROVIDER NO: 1484530001523
26
6 Urine amino acids Date: March 2012
LAB #: U120328-2269-1PATIENT: Eric Trevelyan Chapman WillsID: CHAPMAN WILL-E-00001SEX: MaleDOB: 10/13/2003
CLIENT #: 24146DOCTOR: Jean Monro, MDBreakspear HospitalHertfordshire HouseHemel Hempstead, HP2 4FD ENGLAND
SPECIMEN VALIDITYRESULT REFERENCE PERCENTILE
per creatinine INTERVAL 2.5th 16th 50th 84th 97.5th
Creatinine 68 mg/dL 25- 180
Glutamine/Glutamate 7.7 5- 160
Ammonia Level (NH4) 46400 µµµµM/g 16000- 75000
Specimen Validity Index
ESSENTIAL / CONDIIONALLY INDISPENSABLE AMINO ACIDSRESULT REFERENCE PERCENTILE
µµµµM/g creatinine INTERVAL 2.5th 16th 50th 84th 97.5th
Methionine 5.4 12- 46
Lysine 100 55- 550
Threonine 110 80- 400
Leucine 44 20- 100
Isoleucine 11 8- 45
Valine 63 20- 94
Phenylalanine 59 40- 180
Tryptophan 80 35- 145
Taurine 750 200- 1600
Cysteine 20 25- 93
Arginine 19 12- 70
Histidine 810 520- 2100
NONESSENTIAL AMINO ACIDSRESULT REFERENCE PERCENTILE
µµµµM/g creatinine INTERVAL 2.5th 16th 50th 84th 97.5th
Alanine 200 170- 800
Aspartate 5.6 12- 33
Asparagine 61 60- 360
Glutamine 300 300- 1200
Glutamate 39 10- 80
Cystine 25 28- 91
Glycine 730 800- 3400
Tyrosine 100 60- 225
Serine 200 200- 880
Proline 4.8 2- 90
©DOCTOR’S DATA, INC. ADDRESS: 3755 Illinois Avenue, St. Charles, IL 60174-2420 CLIA ID NO: 14D0646470 MEDICARE PROVIDER NO: 1484530001676
��
PATIENT: Eric Trevelyan Chapman WillsDOCTOR: Jean Monro, MDLAB#: U120328-2269-1PAGE: 3
DETOXIFICATION MARKERSRESULT REFERENCE PERCENTILE
µµµµM/g creatinine INTERVAL 2.5th 16th 50th 84th 97.5th
Methionine 5.4 12- 46
Cysteine 20 25- 93
Taurine 750 200- 1600
Glutamine 300 300- 1200
Glycine 730 800- 3400
Aspartate 5.6 12- 33
NEUROLOGICAL MARKERSRESULT REFERENCE PERCENTILE
µµµµM/g creatinine INTERVAL 2.5th 16th 50th 84th 97.5th
Ammonia (NH4) 46400 16000- 75000
Glutamine 300 300- 1200
Phenylalanine 59 40- 180
Tyrosine 100 60- 225
Tryptophan 80 35- 145
Taurine 750 200- 1600
Cystathionine 6.4 10- 43
68th 95th
Beta-alanine 2.2 < 22
UREA CYCLE METABOLITESRESULT REFERENCE PERCENTILE
per creatinine INTERVAL 2.5th 16th 50th 84th 97.5th
Arginine 19 µµµµM/g 12- 70
Aspartate 5.6 µµµµM/g 12- 33
Citrulline 1.3 µµµµM/g 1- 47
Ornithine 10 µµµµM/g 5- 55
Urea 730 mM/g 210- 750
Ammonia (NH4) 46400 µµµµM/g 16000- 75000
Glutamine 300 µµµµM/g 300- 1200 68th
Asparagine 61 µµµµM/g 60- 360
SPECIMEN DATA
Comments:
Date Collected: 3/25/2012 Collection Period: Random Methodology: LC MS/MSDate Received: 3/28/2012 Volume: NH4, Urea, Creatinine by AutomatedDate Completed: 4/3/2012 Chem Analyzer v3
©DOCTOR’S DATA, INC. ADDRESS: 3755 Illinois Avenue, St. Charles, IL 60174-2420 CLIA ID NO: 14D0646470 MEDICARE PROVIDER NO: 1484530001676
28
PATIENT: Eric Trevelyan Chapman WillsDOCTOR: Jean Monro, MDLAB#: U120328-2269-1PAGE: 2
GASTROINTESTINAL MARKERSRESULT REFERENCE PERCENTILE
µµµµM/g creatinine INTERVAL 2.5th 16th 50th 84th 97.5th
Ammonia (NH4) 46400 16000- 75000
Ethanolamine 300 150- 580
Alpha-Aminoadipitate 96 8- 100
Threonine 110 80- 400
Tryptophan 80 35- 145
Taurine 750 200- 1600
68th 95th
Beta-alanine 2.2 < 22
Beta-aminoisobutyrate 90 < 470
Anserine 51 < 200
Carnosine 71 < 200
Gamma-aminobutyrate 1.5 < 50
Hydroxyproline 6.5 < 60
MAGNESIUM DEPENDANT MARKERSRESULT REFERENCE PERCENTILE
µµµµM/g creatinine INTERVAL 2.5th 16th 50th 84th 97.5th
Citrulline 1.3 1- 47
Ethanolamine 300 150- 580
Phosphoethanolamine 73 46- 140
Phosphoserine 0.41 0.07- 1.2
Serine 200 200- 880
Taurine 750 200- 1600
68th 95th
Methionine Sulfoxide 2 < 15
B6, B12, & FOLATE DEPENDANT MARKERSRESULT REFERENCE PERCENTILE
µµµµM/g creatinine INTERVAL 2.5th 16th 50th 84th 97.5th
Serine 200 200- 880
Alpha-aminoadipate 96 8- 100
Cysteine 20 25- 93
Cystathionine 6.4 10- 43
1-Methylhistidine 480 130- 430
3-Methylhistidine 1070 55- 900
Alpha-amino-N-butyrate 26 8- 65
68th 95th
Beta-aminoisobutyrate 90 < 470
Beta-alanine 2.2 < 22
Homocystine 0.029 < 10
Sarcosine 6 < 50
©DOCTOR’S DATA, INC. ADDRESS: 3755 Illinois Avenue, St. Charles, IL 60174-2420 CLIA ID NO: 14D0646470 MEDICARE PROVIDER NO: 1484530001676
29
7 Metabolic analysis and amino acids Date: August 2012
© Genova Diagnostics · A. L. Peace-Brewer, PhD, D(ABMLI), Lab Director · CLIA Lic. #34D0655571 · Medicare Lic. #34-8475
Malabsorption and Dysbiosis Markers
Cellular Energy & Mitochondrial Metabolites
Creatinine Concentration
Neurotransmitter Metabolites
Vitamin Markers
Toxin & Detoxification Markers
Metabolic Analysis Markers
Tyrosine Metabolism
30
© Genova Diagnostics · A. L. Peace-Brewer, PhD, D(ABMLI), Lab Director · CLIA Lic. #34D0655571 · Medicare Lic. #34-8475
Nutritionally Essential Amino Acids
Amino Acids (FMV)
Nonessential Protein Amino Acids
Creatinine Concentration
Intermediary Metabolites
Dietary Peptide Related Markers
Markers for Urine Representativeness
Oxidative Stress Markers Oxidative Stress Markers