Download Nutrition for ASD Nutrition for ASD Introduction and Background

Nutrition for ASD
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Introduction and Background
According to the DSM-IV, symptoms of autism spectrum disorders (ASD) are social and
communication impairment; restrictive, repetitive, stereotyped patterns of behaviors, interests
and activities; and abnormal functioning (APA 2000). Autism spectrum disorders include
“classic” autism disorder, Asperger’s disorder, and pervasive developmental disorders, not
otherwise specified (PDD-NOS). In addition to the primary diagnosis of ASD - intellectual
disability, Down’s syndrome, anxiety disorder, Tourette’s syndrome, learning disability, or
seizure might also be present (Feucht & Ogata 2010). Atypical dietary habits are not included in
the criteria, but in an earlier edition these were included since it is estimated that close to 90% of
children with ASD have problem behaviors associated with mealtimes (Johnson, Handen,
Mayer-Costa, Sacco 2008). Feeding behaviors in children with ASD bring significant
difficulties to meals, as it is not unusual for a child to display neophobia, adhere to rigid routines,
hyper- or hypo-sensitive oral and olfactory senses, a short attention span, be a “slow feeder”, and
limit acceptable foods to less than five or ten items (Emond, Emmett, Steer, Golding 2010,
Bandini et al. 2010). Due to idiosyncratic texture and taste aversions, it is sometimes extremely
difficult, if not impossible, to administer a form of multivitamin and/or mineral supplement, or a
liquid nutritional shake. In light of these struggles, it is not surprising that many parents turn to
complementary and alternative medicine (CAM) options, with an estimated 15-27% of children
placed on the popular gluten-free, casein-free diet (GFCF) (Johnson el al. 2008). While the
GFCF diet is the most common and well known alternative, some other unorthodox therapies
include: Dr. Haas’ Specific Carbohydrate Diet, a variety of elimination diets, the Feingold diet,
megadoses of vitamins and/or minerals, an anti-fungal approach with prescribed vancomycin,
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and omega-3 fatty acid supplementation (Geraghty, Bates-Wall, Ratliff-Schaub, Lane 2010,
Feucht & Ogata 2010).
Origin of the Gluten-Free, Casein-Free Diet
The GFCF diet originated from Reichelt’s Opioid Excess Theory, which states that
people with ASD metabolize gluten and casein incompletely to the peptides, gliadinomorphin
and casomorphin (Korn 2010). Approximately 43-76% of children with ASD have increased
intestinal permeability – “leaky gut” syndrome – and 30-80% have gastrointestinal distress of
some kind (Feucht & Ogata 2010, Geraghty, Depasquale, Lane 2010, Korn 2010). Due to the
more porous nature of their gut, it is postulated that the peptides move from the intestine to the
blood stream, pass through the blood-brain barrier, and attach to the opioid receptors. Korn
describes the resulting effect as a “high” characterized by monotonous body movements,
withdrawn demeanor, fascination with parts of objects, and distress over changes in routine – all
typical autistic behaviors (2010). Knivsberg insisted that gluten and casein’s peptides negatively
impact a child’s attention, brain maturation, social interactions, and ability to learn efficiently
(Mantos, Ha, Caine-Bish, Burzminski 2011). In addition to the hypothesized opioid theory,
abnormally high levels of tumor necrosis factor (TNF) and inflammatory cytokines are recorded,
suggesting that ASD increase the likelihood of a non-IgE-mediated food allergy’s presence
(Geraghty, Depasquale, et al.2010). Unfortunately, the foods that are favored the most by
children with ASD are: dry cereal, crackers and chips, processed chicken nuggets, bread, and
plain pasta – obviously creating a conundrum for parents wishing to attempt the GFCF diet
(Feucht & Ogata 2010). For the purposes of this paper, the primary focus is on the evidence, both

Reichelt proposed that inadequate metabolism of gluten and casein would not only exacerbate
ASD, but also a variety of other disorders which include but are not limited to - postpartum
psychosis and schizophrenia (Millward, Ferriter, Calver, Connell-Jones 2009). Unfortunately,
these other disorders are beyond the scope of this paper.
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for and against, that the GFCF diet improves behaviors and physiological symptoms of children
with autism spectrum disorders.
Reichelt and Knivsberg state that autism has a strong genetic component that manifests
itself as chemical changes, but is also influenced by environmental stimuli (2009). One example
is that neurotransmitters are made of amino acids, so what is ingested and how it is metabolized
has a definite impact on the chemical balance (Korn 2010). Nutrient deficiencies impact mood
and behaviors, often increasing anxiety and stress hormones as the body fights chronic
inflammation and the demands of a young growing body. Both parents and researchers point out
how many of the conduct issues that children with ASD struggle with are remarkably similar to
behavioral manifestations of gluten sensitivity and celiac disease. The most commonly cited are:
inability to focus, ADHD and autistic behaviors, depression, mood disorders, irritability, and
lack of motivation (Korn 2010). The situation is further complicated by a wide array of
gastrointestinal disturbances that range from constipation to GERD to intestinal lymphoid
hyperplasia (Santhanam and Kendler 2012).
Tentative Benefits of GFCF Diet
The gluten-free, casein-free diet’s effect on a child with autistic spectrum disorder can
take anywhere from two months to four years for improvements to emerge, and then progress is
still not guaranteed (Santhanam and Kendler 2012). In a recent two-year long study, Whiteley
and his colleagues noted a plateau effect in behavioral improvement after eight months (2012).
Notable developments are most likely to be found in the ADHD and aggression categories,
although the levels are not statistically significant or consistent (Mantos et al. 2011, Whiteley et
al. 2010). Mulloy and colleagues recommend continuing the GFCF diet only if acute behavioral
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changes are noticed relatively soon after starting the diet - so records of the child’s diet and
behavior are imperative (Mulloy, Lang, O’Reilly, Sigafoos, Lancioni, Rispoli 2011).
The GFCF Diet to Treat Physiological Symptoms
Autism spectrum disorders are multi-faceted because in addition to the behavioral
component, a variety of physiological disturbances can occur. While constipation and diarrhea
are the most common, children often have other non-IgE-mediated food allergy symptoms (a.k.a.
delayed hypersensitivities or T-cell-mediated hypersensitivity) (Feucht & Ogata 2010, Geraghty,
Bates-Wall, et al. 2010). Findings suggest that children with ASD are at an increased risk for
developing allergies to certain proteins in commonly consumed foods, with signs of reaction
emerging throughout the GI tract and on the skin (Geraghty, Depasquale, et al. 2010). Pennesi
and Cousino found the most common complaints to be “skin problems, red cheeks, red ears,
rash, red ring around the mouth and/or anus, hives, dark circles under eyes, sneezing, stuffed
nose, and itchy, watery, red eyes (2012, p.4). This exhibition of inflammation, if chronic in
nature, supports the idea that cytokine and TNF activity would increase and the intestinal barrier
would tend to be more permeable. Reichelt and Knivsberg claim that many studies have found
damage in the intestines, which alters the microflora, and negatively impacts the individual’s
nutritional status (2009).
One can imagine that parents would be reasonably alarmed at this development, and it is
not surprising that Geraghty and colleagues found, in the first part of their investigation, that
parents of children with ASD were more likely to believe diet impacts physiological and
behavioral conditions (2010). Elder described parents as desperately looking for answers, and
with little patience for the paucity of well-conducted studies that always point out the need for
more research to be done (2008). If by implementing the GFCF diet, the majority of symptoms
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clear up, then the parents and/or guardians have a valid reason for staying on the plan. Ideally,
after the hypersensitivity is confirmed, then omission of gluten and/or casein would be logical,
but parents seldom consult with a healthcare professional before starting a CAM treatment. It
should be noted that most children outgrow non-IgE-mediated allergies by the time they turn sixyears-old, so reassessment after several years would be wise (Geraghty, Depasquale, et al. 2010).
Gluten and Casein as Substrates
Unfortunately, the decrease in physical symptoms after starting the GFCF diet is easier to
show than an improvement of social-communication or behavioral issues. Korn postulates that
because of the intestinal pathology linked with ASD, there must be malabsorption and/or an
opiate effect, which leads to a deficiency of nutrients to the brain and autistic behaviors (2010).
Reichelt and Knivsberg go as far as to say that the lack of socially meaningful relationships and
epileptic seizures found in some, but not all, cases of ASD are very similar to symptoms of
opium and heroin addicts (2009). They also draw on the example of phenylketonuria (PKU) to
illustrate that removal of the substrate - phenylalanine for PKU, or gluten and casein for autism –
will eliminate the predicament. If negative behaviors improve dramatically after eliminating
gluten and casein, then either the child was never autistic or the diet actually improves the
demeanor of children with ASD (Korn 2010). So, while there are many anecdotal reports to
substantiate the GFCF diet’s claim to fame, there are few consistencies to be found in legitimate
research to back up its rather fantastic claims (Elder 2008, Millward et al. 2009).
Complications of Alternative Diets and the GFCF Route
Many of the alternative therapies and elimination diets used to treat ASD are potentially
harmful, and also exacerbate social separation from peers. To name a few possible
complications: large doses of EPA/DHA inhibit platelet aggregation, and megadoses of vitamin
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B6 and magnesium cause peripheral neuropathy. The Specific Carbohydrate Diet eliminates
grains, dairy, sucrose, and complex carbohydrates -which are valuable sources of vitamins,
minerals, and fiber. Last, but not least, the gluten-free, casein-free diet compromises a growing
child’s source of calcium, vitamin D, iron, and protein. Gluten-free and casein-free foods are
generally not fortified with the B vitamins and iron, and tend be less acceptable to the average
person’s palate. Children with ASD already tend to avoid fruits and vegetables, have late
acceptance of solid foods, might avoid animal sources of protein, and some exhibit pica
tendencies (Feucht & Ogata 2010, Emond et al. 2010, Geraghty, Bates-Wall 2010). Although the
child initiates the majority of food selectivity, parents of children with ASD have also been
found to offer less variety of foods to the affected child (Bandini et al. 2010). When combining
the fact that the majority of ASD patients prefer starchy foods and tend to be neophobic - the
transition to the GFCF diet has the potential to disrupt the entire family system and substantially
stress out the child.
Since most of the children with ASD who are put on the GFCF diet are young and still
have many years to grow, eliminating cow’s milk unnecessarily compromises their bone health.
Medication-nutrient interactions also complicate the picture, especially anti-convulsants which
adversely impact the metabolism of calcium and vitamin D (Crowe 2012, p. 1105). Both males
and females with ASD are at risk for weak bone development and diminished bone cortical
thickness. In addition to the exclusion of cow’s milk products, other negative factors are lack of
exercise and weight-bearing activities, overall reluctance to eat a varied diet with adequate
protein, and digestive problems (Geraghty, Depasquale, et al. 2010, Marcason 2009, Mulloy et
al. 2010). Probiotics, which are also naturally found in dairy products, have been suggested in
the past to help ASD patients with GI complications. But when food with casein is restricted and
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the child is unwilling or unable to swallow a pill, it becomes almost impossible for the intestine’s
microflora to be revitalized.
ASD Cases with Severe Nutrient Deficiencies
Surprisingly, the majority of children with ASD have gross growth parameters that
are within the normal limits (Feucht & Ogata 2010). Upon further investigation, researchers
found that many children ate enough of the few foods they preferred to make up for any nutrient
deficiencies that would have otherwise occurred (Geraghty, Depasquale 2010). While most of
the children slip by, there are several noteworthy case studies illustrating a diet restrictive
enough to cause a deficiency disease. The cases were not confined to undeveloped countries, but
ranged across the United States, Wales, and Japan. Pineles reported three cases of autistic
children with vitamin B12 and vitamin A deficiencies, which resulted in optic neuropathy
(Pineles, Avery, & Liu, 2010). An adolescent boy with severe learning disabilities and autism
spectrum disorder presented to Stewart and Latif with bilateral leg pain, significantly stunted
bone growth, and near undetectable vitamin D levels. Upon further investigation, the patient was
diagnosed with symptomatic nutritional rickets due to poor diet and possible parental negligence
(Stewart & Latif 2008). A 17-year-old male with ASD measured 50% height for age and 1025% weight for age, and suffered permanent vision loss because of a severe vitamin A deficiency
(McAbee, Prieto, Kirby, Santilli, Setty 2009). Two additional case studies report vision
problems in two young boys with ASD, who also had severe vitamin A deficiencies – but with
massive doses of intramuscular or oral vitamin A the damage proved to be reversible
(Steinemann & Christiansen 1998, Tanoue, Matsui, Takamasu 2012). The characteristic that the
seven patients with ASD have in common is a critically limited diet that lacks dairy, fruits,
vegetables, and adequate fiber. Usually for several years, the subjects severely self-restricted to
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simple, processed carbohydrates such as fried potatoes, cookies, bagels, rice balls, and chicken
nuggets. These cases serve to demonstrate the measures children with ASD are capable of taking
in terms of their diet, which have long-term consequences. To consider implementing a more
restrictive diet, like the GFCF model, without due cause is simply inviting more nutrition-related
problems down on the situation.
Role of the Parents
In response to several recent studies on ASD and the GFCF diet, Elder states that, “many
of the newer, well-publicized interventions have little literature-based support, and may actually
produce hardships for families while creating false hope of miraculous cures”(2008, p. 584). But
parents often feel that trying a diet is better than doing nothing at all. Although Mantos noted that
it is not clear what benefits the increased attention to structure, meals, and the child might have
on pathological symptoms (2011). Not only do they hope for improvement of ASD behaviors,
but Akins observed that parents also choose CAM treatments for two other reasons: (1) as an
attempt to create an alternative identity for both the parents and the child, and (2) to gain some
measure of control in a situation they feel is out of their hands (Akins, Angkustsiri, Hansen
2010). But reality is that by taking this route, treatment resources are diverted down a path with
no guarantee of success, and may only serve to increase a child’s social stigmatization. As
Millward and her colleagues aptly pointed out, “a child with autism is already restricted in
lifestyle by his/her disorder but undergoes a further lifestyle restriction in terms of diet” (2009,
p.3).
Gaps and Dissonance in Past Research
The most recent data records that 1 in 110 children in the United States have an autism
spectrum disorder, yet dietetics research in this field is far behind the rapid rise in cases (Akins et
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al. 2010, Pennessi & Cousino 2012). There is a desperate need for healthcare professionals in
this area, and for evidence-based dietary advice to be offered to combat the abundance of fad
solutions offered on the Internet. CAM products and practitioners are filling the voids in
treatment that are not addressed in the conventional method – with 52-95% of parents of patients
with ASD admitting to using it in the past or currently (Akins et al. 2010). But upon further
investigation, the Cochrane Review only approved two out of thirty-five GFCF diet studies in
their most recently published document – one conducted by Knivsberg in 2002, and another by
Elder in 2006 (Millward et al. 2009). A few key shortfalls of the studies are the very small
number of subjects, lack of control groups, lack of definition of food selectivity, skewed data,
numerous flaws, and bias of the researchers and/or parents (Feucht & Ogata 2010). For the
present moment, the research merely demonstrates the possibility of a correlation between
improvement of ASD behaviors and the GFCF diet (Mulloy et al. 2010).
Caution Required When Making Drastic Dietary Changes
To assume that simply eliminating gluten and casein will clear up a myriad of
maladaptive behaviors, rituals and routines, social interaction barriers, and physiological
symptoms is an alarming display of ignorance on the complexities of a developmental disorder.
Autism spectrum disorders impact every aspect of an individual, and so every part must be
addressed when searching for a solution. It is also important to take into account that, due to
impaired communication skills, some children may not be able to clearly convey discomfort or
pain they feel in their gastrointestinal tract or if their sensory routes are overwhelmed. The best
strategy is to take note of what had been effective in the past and design an intervention along the
same lines – such as starting with foods in the same form that the child already eats, and slowly
incorporating new items. Children with ASD operate best when there are consistent, familiar
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rules, so change will be slow but it is possible (Feucht & Ogata 2010). But Wood and colleagues
caution parents and healthcare practitioners to avoid unnecessarily restricting the diet, because it
can inhibit the success of a therapeutic feeding treatment (Wood, Wolery, Kaiser 2009). A team
consisting of a primary physician, therapist, registered dietitian, and/or speech pathologist may
be required to work with a child to assess their stage of development and then help increase the
variety of their diet.
The research that has been conducted in the past decade and a half shows both enormous
potential for discovery or error in future studies, depending on the chosen method of
investigation. Anecdotal evidence from parents of improvement in their child’s physiological
symptoms is encouraging, but consistency is needed in randomized controlled studies before
professional statements of efficacy can be given. While understanding must be extended to
parents searching for answers to behavioral issues, it would behoove them to heed the Cochrane
Review’s statement that does not support the use of the gluten-free, casein-free diet for the
treatment of autism spectrum disorders. There is a glimmer of a correlation between the
variables, but in light of the dearth of legitimate research an absolute decision cannot be made as
of yet.
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