THE GLUTEN FREE DIET AND POSSIBLE, POSITIVE INFLUENCES … · commonly considered is the gluten free diet. This paper reviews the neurobiological disorder known as Autism, and provides

Gluten Free Diet and ASD in Elementary Students 1

THE GLUTEN FREE DIET AND POSSIBLE, POSITIVE INFLUENCES IN COMMUNICATION, SOCIALIZATION, AND ATTENTION IN ELEMENTARY SCHOOL

CHILDREN WITH AUTISM SPECTRUM DISORDER by

Laurie Rule

SUBMITTTED IN PARTIAL FULFILLMENT OF THE REQUIREMENTS FOR THE DEGREE OF MASTER OF ARTS IN EDUCATION

AT NORTHERN MICHIGAN UNIVERSITY

November 29, 2013

APPROVED BY: Matthew E. Ludwig

DATE: 12/5/13


Table of Contents

Abstract……..………..……………………………………………………………………………4

Chapter I: Introduction

Statement of Problem…………………………………………………………………….5

Research Question(s)….....................................................................................................5

Definition of Terms……………………………………………………………………....5

Chapter II: Review of Literature……..…………………………………………………………....7

Chapter III: Results and Analysis Relative to the Problem ……………………………………..22

Communication in children with ASD…………………………………………………..22

Socialization in children with ASD……………………………………………………...23

Attention in children with ASD………………………………………………………….23

Chapter IV: Recommendations and Conclusion ………………………………………………...26

Recommendation………………………………………………………………………...27

Areas for Further Research………………………………………………………………27

Summary and Conclusion………………………………………………………………..28

References.……………………………………………………………………………………….29


Abstract

The number of cases of autism continues to rise. With no known cause or cure, parents

search for therapies and interventions to help their children function with some level of

normalcy; to allow them to experience life in a way that is not considered possible. Children with

autism are often being educated with their peers in a general education setting. Research suggests

that children with ASD must increase their abilities to communicate, socialize, and maintain

attention on academic tasks to be successful in the classroom. One intervention that seems to be

commonly considered is the gluten free diet. This paper reviews the neurobiological disorder

known as Autism, and provides a general overview of the gluten free diet. This is followed by a

review of studies which involved children with autism and the gluten free diet, a number of

literature reviews, and a mix of other studies involving autism. This paper concludes with

discussion of findings, and final thoughts regarding the gluten free diet and its use as an

intervention to increase communication, socialization, and attention in children with ASD in the

elementary classroom.


Chapter I: Introduction

Statement of the Problem

Autism Spectrum Disorder (autism or ASD) is on the rise. The amount of children with

autism who are experiencing inclusion within the general education setting is also increasing.

Many methods exist that attempt to decrease the severity of the symptoms of ASD. Currently,

emphasis is placed on early identification and intervention. Early invention includes educational

intervention, behavioral treatments, and developmental therapies. The earlier a child is identified

with Autism Spectrum Disorder, the sooner interventions can begin, which in turn increases the

quality of life for the person with autism. Since there is no known cause and no known cure,

parents of children with autism try many interventions in effort to improve the characteristic

symptoms of autism. Undertaking some of these therapies can be draining on emotions and

finances. The gluten free diet is “one of the most popular, yet scientifically unproven,

interventions for Autism Spectrum Disorder” (Elder, 2008, p.584). The effectiveness of the

gluten free diet at increasing communication, socialization, and attention in children with autism

will be investigated.

Research Question

To what extent does the gluten-free diet increase communication, socialization, and

attention in children with autism to increase participation in an elementary classroom?


Definitions of Terms

Autism

Leo Kanner was the first to describe autism in 1943. Autism is most often diagnosed by

the age of three years, and is characterized by impairments in social interactions, delayed speech,

language development, and restrictive repetitive behaviors. These individuals may also have

processing delays that interfere in motor planning, visual processing, and responding to other

people. There are many similarities among people with autism, but each case is also unique and

individual. Genius (2009), stated that over the past few decades, autism had been recognized as

the most severe form of affliction in a spectrum of pervasive developmental disorders. There is

currently no known cause, and there is no known cure, which leads parents of these children on a

search to find something that will help their child. In 2008, prevalence rates were 1 in 150

children being diagnosed with autism. Current statistics prove that the prevalence rate is now 1 in

88 of children. Genius warned that the prevalence of autism was increasing significantly and this

disorder has become a serious health issue. “It is unclear whether there is an actual rise in the

number of cases, or an increase in publicity and better diagnostic measures” (Elder, 2008, p.583).

The Gluten-Free Diet

A Gluten-Free Diet is a diet that is completely free of gluten, which is a generic term for

storage proteins found in grains. This diet is a response to celiac disease, which is an intestinal

response to grain in the diet. According to the Gale Encyclopedia of Medicine, celiac disease is a


genetically inherited, chronic digestive disease that results in damage to parts of the small

intestine that are responsible for absorption of nutrients. Long-term absorption of grains into an

intestine that is affected by celiac disease prevents nutrients to be absorbed into the body.

Significant damage is done to the intestine when gluten is ingested in the diet.

Chapter II: Review of Literature

Genius (2009) conducted a case report which suggested a direct link between

symptoms of Autism Spectrum Disorder and Celiac Disease. A five year old male was brought to

a physician trained in environmental medicine. The five year old had been diagnosed with

Autism Spectrum Disorder when he was three. He had some of the classic symptoms of autism;

language disorder, scattered language development, and social communication impairment. The

physician completed nutritional assessments which revealed inadequate levels of fat-soluble

vitamins A, D and E, as well as low coenzyme Q10 and folate. The child also had low saturated

fat status which suggested that the child had difficulty with fat absorption. The parents of the

child were concerned about toxins in the environment causing troubles for their son, but the

testing showed no evidence of toxins accrued in the child.

Assessment of the child’s diet revealed wheat consumption on a frequent basis. Given the

testing proved low vitamin absorption, the child was given dietary intervention immediately.

Gluten was removed from the child’s diet in effort to replenish necessary nutrients. Within one

month, the boy’s behavior had changed drastically, and his gastrointestinal symptoms had

improved. His mom reported her son had become more communicative and had told her he loved

her for the first time. In three months’ time, his functioning had improved so much that he was


able to participate in a regular classroom with no aide. After consulting a gastrointestinal

specialist, he suggested that there was no remaining evidence of autism in the boy. He suggested

that the parents bring the boy back to the original doctor who had diagnosed him with autism, but

the family refused due to the intensity of testing.

Knivsberg (2003) and colleagues conducted a small, randomized, single blind clinical

trial on 20 school aged children. The purpose of this study was to evaluate the effects of a gluten

free diet on children with urinary peptide abnormalities. These children had all been diagnosed

with ASD by a neurologist or psychiatrist, and urine tests showed high levels of gluten and

peptides. Ten children were assigned to a control group, and ten were assigned to a gluten free

diet group. The child’s total impairment consisted of scores related to social interaction and

strange and unusual behaviors. The DIPAB was used to assess the severity of the autistic

behavior before the children were matched pair wise. The mean impairment score in the control

group was 11.5, and the variable group had a mean impairment score of 12.5. The non-verbal

cognitive level was tested using the Leiter International Performance Scale. Scores on this scale

were 84.6 for the control group, and 81.0 for the variable group. To keep the trial as objective as

possible, questions from the performance scales were thoroughly explained, and specific

examples of the behaviors were given. The actual fluency or accuracy of speech was not to be

considered, but the actual eagerness with which the child used verbal communication. Each

question was rated on a 5-point scale, which was broken down the following way: 1 point =

normal behavior, 2 = deviant behavior, 3 = clearly deviant behavior, 4 = extremely deviant

behavior and 0 = the score cannot be evaluated due to the fact that the child does not have verbal

abilities. The study continued for one full year. The parents of the children participating in this

study received monthly phone calls for support in raising a child with autism. The investigators


had no contact with the families for the duration of the experiment, and they did not know which

children belonged to which group.

After a year, the same performance scale was given to the children. Results of this study

were mixed, but the gluten free diet group experienced a greater reduction in the classic

behaviors of autism. After the course of one year, children in the control group had some higher

and lower scores after the experimental period, while nine of the children in the diet group had

higher scores after one year. An increase in this score indicated that the child’s communication

abilities increased. The gluten-free diet group’s mean scores before and after the testing period

were 3.9 and 6.2 respectively, while the control group’s mean scores were 4.3 and 4.5

respectively. The change in scores was significant for the gluten-free diet group and insignificant

for the control group. This study also looked at social interaction/isolation in children with

autism. All but one child in the study showed varying degrees of social isolation at the start of

the testing period. After a year’s time, seven children on the gluten-free diet were more social.

The nine children in the control group who struggled with social interactions, still continued to

struggled with social interactions a year later. Mean results of the scores for the gluten free diet

group before and after the experimental period were 7.6 and 3.0 respectively. For the control

group, the mean scores before and after the testing period were 7.1 and 6.2 respectively. Again,

the gluten free diet group had a significant reduction. This study demonstrated that children who

followed a gluten free diet experienced a reduction in autistic behavior and increased

communicative skills.

Whiteley (2008), conducted a single blind, randomized study that recruited seventy-two

children with autism to participate. Both females and males were included. The purpose of this

study was to investigate the gluten free diet as an effective intervention for children with ASD.


The investigator was the blind component of this study. Scales used to assess core autism

behaviors included the Autism Diagnostic Observation Schedule (ADOS), Gilliam Autism

Rating Scale (GARS), and the Vineland Adaptive Behavior Scales (VABS) were used to

determine developmental level. To determine hyperactivity or inattention, researchers used the

Attention-Deficit Hyperactivity Disorder - IV scale (ADHD-IV). Two groups were formed from

the seventy-two participants. One group was the control group and continued with their regular

diet. The other group was the variable. The variable group adopted the gluten free diet for the

duration of phase one of the study. Both groups kept with their assigned diets for duration of

eight to twelve months. After twelve months, the control group then adopted the gluten free diet,

and the variable group continued with the already instated gluten free diet. The participants were

assessed with the same scales once the study concluded. Children in the variable group displayed

improved scores on the ADOS, GARS, VABS, and the ADHD-IV. Of the variables tested, the

most gains were seen in the areas of communication, socialization, and daily living. Every

participant in the variable group continued with no change to their diet after the eight to twelve

month time period had ended. The gluten-free diet had a positive impact on the symptoms of

autism, and demonstrated improved characteristics.

Whiteley (1999) and colleagues conducted a gluten free diet trial which involved thirty

one children with ASD. Of those children twenty-three were males and eight were female. The

participants were chosen from volunteers who wanted to be a part of the study. Only twenty-two

of the children completed the regime, and were therefore considered for this trial. Nine of the

children were diagnosed with Autism, five were diagnosed as having an autism spectrum

disorder, four were diagnosed with Asperger’s Syndrome, two were diagnosed with Semantic

Pragmatic Disorder, and two were diagnosed with Dyspraxia.


Five tools for assessment were used in this study. The first was a background

questionnaire. This questionnaire was formed from parent information, and questions were

created. Pilot tests of questions were conducted to choose questions to be included in a post-

intervention tool. The second tool was the Behavior Summarized Evaluation (BSE), which is an

observation schedule, made up of a number of individual items related to various aspects of

autistic functioning and behavior. This evaluation tool is rated on a 5-point scale according to the

frequency of observed behaviors. The third tool was the Kaufmann Assessment Battery for

Children (K-ABC). This test measures a broad range of cognitive functions. Only six of the

subtests were used in this study and included; Magic Window, Gestalt Closure, Matrix

Analogies, Spatial Memory, Photo Series, and Face Recognition. Previous studies have shown

reliability in using this test in assessment of children with autism. The fourth tool was the

Parental Satisfaction Survey (PASS). This survey consisted of 30 questions that corresponded to

behaviors directly associated to autism. This survey contains a nine point scale that is used to

measure changes in the behavior of participants over the course of the study. The fifth tool for

this study was a urinary analysis. This sample was taken first thing in the morning, mid-stream,

in a 30ml tube. The urine was stored frozen.

The results of the assessments given post study were of mixed results. On the K-ABC,

there was an overall improvement with a significant increase in scores for three of the six

subtests. These subtests included face recognition, magic window, and gestalt closure. On the

PASS survey, parent responses were analyzed post-test, and the mean responses reported that all

areas examined either stayed the same or improved during the duration of the gluten-free diet.

Behaviors that improved according to the PASS survey included; increased curiosity; increase in

the number of ‘good’ days; increases in smiling, eye contact, and play behavior, increased


attempts to communicate; and an increased number of initiations/interactions. Sixty- seven

percent of the parents in the study indicated that they believed the gluten free diet lead to clear or

substantial improvements in their child’s autistic behaviors. Ninety four percent of the parents

stated that they would continue their children’s gluten free diet after the study had concluded.

The urinary analysis that was conducted pre- and post- test showed no significant correlation

between the change in IAG excreted and the changes in scores on the K-ABC, PASS, or teacher

observations. Therefore, this study did not make it possible to establish a direct relationship

between IAG levels and behavior. The study included parent observations, which is a limitation

of this study since observations are hard to keep unbiased.

Harris (2012) conducted a cross-sectional study of children recruited from the Asperger’s

Support Network in the Seattle, Washington area. The children who participated were between

the ages of 5 and 12 years old. The information collected included an online parent survey, a

food frequency questionnaire (FFQ), a study of gastrointestinal symptoms using the

Gastrointestinal Symptoms Rating Scale (GSRS), and behavioral patterns using the Childhood

Autism Rating Scale (CARS). The thirteen subjects completed each of the assessments, and the

results were compared using Kendall’s Tau Correlation. The comparisons showed correlations of

relationships between severity of GI symptoms, autistic behavior patterns, and adherence

patterns to the gluten-free diet. Responses on the questionnaires contained no statistically

significant differences dependent upon age, gender, income, race, or what area of the spectrum of

ASD the child had. More than half of the children were already on a gluten free diet, and

consumed an average of 8.7 gluten containing foods per week. In contrast, those children not on

the gluten free diet consumed 53 gluten containing foods per week. The parent questionnaire

indicated that 53.8% of children experienced GI symptoms. The mean score on the GSRS was


19.2 and on the CARS the mean score was 43.9. These two scores did not differ based on the diet

of the child. All of the parents with children on the gluten free diet reported that GI symptoms

and behavior patterns improved with a gluten free diet. The data gathered in this study fails to

reveal a significant relationship between the consumption of gluten containing foods, GI

symptoms, and behavior patterns in children with ASD. Limitations of this study include the

small sample size, and the possible inability of parents to accurately quantify the severity of their

children’s ASD symptoms.

Hyman (2010) conducted a small, but well-controlled study that involved 22 children

with ASD. These children were between the ages of 2.5 years and 5.5 years old. Each child

already received a minimum of 10 hours a week of intense behavioral intervention at the time of

the study. Children who were diagnosed with Celiac Disease were not included in this sample.

The gluten free diet was followed for 12 weeks. The parents, teachers, and researchers completed

multiple assessments at the baseline, 6 weeks, 18 weeks and 30 weeks. Each child on the gluten

free diet received weekly snack challenges that contained 20 grams of wheat flour or no gluten at

all. The snacks were identical in appearance and as similar as possible to one another. The

purpose of this was to keep the test double blind. The child, parent, nor researcher knew which

snack a child received. Assessments were conducted before each snack was given, and again at 2

and 24 hours after ingestion. Parents of the children kept daily records of food intake, sleep

habits, and bowel habits. The researchers also videotaped play session between the parent and

child. The sessions were used to analyze social interaction and language. Results were based on

14 children who actually stuck with the diet for the entire 12 months. The group of children

displayed no significant change in assessment scores from parents, teachers, or researchers in the

areas of attention, improvement of bowel habits, sleep behavior, or activity levels. The Ritvo


Freeman Real Life Rating Scale was used for the 2 hour post challenge data collection. The data

from this tool was lower after the child consumed the gluten free snack versus the gluten filled

snack. The children consuming the gluten free snack approached adults more often than those

children who had eaten the placebo. However, these differences were not evident when the 24

hour post snack data was examined. This small study did not show significant benefits from

following a gluten free diet. The limitation of this study was the small sample size.

McDermott (2008) and colleagues conducted a study to determine if an association exists

between children’s language regression and gastrointestinal symptoms. The study sample

consisted of 100 children between the ages of 1 to 18 who had been diagnosed with autism

spectrum disorder. The Albert Einstein College of Medicine Pediatric Neurology and

Developmental Pediatrics Program recruited the participants. All of the children included were

previously diagnosed with ASD by a neurologist or pediatrician at the Albert Einstein College of

Medicine. Diagnostic Criteria were according to the DSM-IV-TR. In order to be included in this

study, the child also had to have a score greater than 30 on the Childhood Autism Rating Scale

(CARS). A structured interview was completed which included the developmental history of

each child. Language Regression was defined as the presence of one word other than mama or

dada, which was then followed by the loss of other spontaneous language. Each child in this

study was diagnosed by a pediatrician with language regression. The Gastrointestinal

Questionnaire and the Family Autoimmune Questionnaire were also given to the parent of each

child. The Gastrointestinal Questionnaire inquired about special diets, the diagnosed food

allergies, food selectivity, frequent vomiting, esophageal reflux, abdominal pain, stool patterns,

and a family history of Celiac or Inflammatory Bowel Disease. The parent reported about each

symptom, including how recently it occurred, and then used a scale of 1 to 4 to rate the


frequency of symptoms with 1 being rarely, and 4 being very frequent. The Familial

Autoimmune History was completed, which identified which families had a history of these

diseases. The information that was collected was then analyzed. Of the 100 children with autism

spectrum disorder, 68% of them reported gastrointestinal symptoms such as constipation,

vomiting, and abdominal pain, and 26 of them had a history of language regression Children

with language regression experienced more gastrointestinal difficulties that children without

language regression. The occurrence was 84% to 61% respectively. After comparing family

histories, the only difference found was children with language regression had a higher rate of

rheumatoid arthritis. The information gathered in this study suggested a relationship between

language regression and gastrointestinal troubles. Children with autism experienced language

regression and had a higher frequency of gastrointestinal problems. These children also had

family histories of gastrointestinal and autoimmune diseases. All of these connections may be

considered part of the clinical phenotype of children with autism and language regression.

Limitations in this study included the criteria used to define language regression may have had

an effect on the study, and parent recall about gastrointestinal symptoms may not be as strong as

the researchers may have hoped.

Johnson (2011) and colleagues conducted a small controlled study in efforts to extend

research on the idea that the gluten free diet improves symptoms of ASD. Twenty-two preschool

children ages 3-5 years old took part in this small study. All children included in this study were

diagnosed using the Autism Diagnostic Observation Schedule (ADOS) and the DSM-IV criteria.

Eight of the children were randomly assigned to the gluten free diet group and fourteen to the

normal diet group. Measurements were taken at the beginning of the study for form a baseline,

and at the three month mark using three assessments. The first assessment was the Mullen Scales


of Early Learning AGS Edition which measured the cognitive functioning of infants and

preschool children. The areas of functioning measured on this test included visual reception,

expressive language, receptive language, fine motor skills, and gross motor skills. The second

assessment was the Child Behavior Checklist 1 1/3-5. This is a validated behavior rating tool.

This version of the checklist was appropriate for the age group in this study. There were seven

subscales in this test which included measurements of emotional regulation, anxious/depressed,

somatic complaints, withdrawn, attention problems, aggressive behaviors, and sleep troubles.

The third tool was the Direct Behavior Observation Measure. This tool included video- taping

three activities. These activities were part of the ADOS and included; bubbles, birthday party,

and a snack. The target behaviors that were focused on when coding the videos were positive

vocalizations, attending to task, and social initiations. Those people who coded the interactions

were blind to which group each child belonged to. The parents of the children in this study met

with nutritionists before the study began in order to review the child’s current eating habits. The

parents also received information regarding the assigned diet for the duration of the study. The

group of children who were on a healthy diet followed the food guide pyramid when they made

food decisions for their children. Those assigned to the gluten free diet group received

information on food that does not contain gluten. This group also offered lots of fruits and

vegetables. They received materials which provided information about which stores stocked

gluten free foods, and websites that carry gluten free items. The parents with children on the

gluten free diet also recorded all infractions of not following the diet.

Review of baseline measures and 3 month follow up measures indicated no clinically

significant findings in the improvement of behaviors among children in either diet group. The

blind raters of the recorded interactions did not notice any statistically significant group


differences. Both groups had evidence of a slight decrease in the frequency of attending and

vocalizations. Both groups were also found to initiate interactions after the three month testing

period. Overall, there was no statistically significant increase or decrease from the baseline

measurement to the 3 month follow up assessment in any of the areas in this study. The small

number of participants is one limitation of this study. The study also was not double blind, which

would have created a stronger study. The final limitation was that growth naturally happens over

a three month period for children that young. It was nearly impossible to take this growth into

consideration.

Hurwitz (2013) conducted a literature review on the gluten free diet and the research that

has been conducted. Her review concluded that there have been few studies done that include

rigorous experiments. Her review of literature discovered that most of the studies that have been

conducted include children between the ages of 1 and 16. The 5 strongest studies that were

focused on for this literature review indicated that the effect of a gluten free diet on behavior is

inconclusive. The research that was examined in this study did not support the opioid theory of

autism. Eliminating gluten from the diet did not have the positive effects that researchers had

hoped. The author of this literature review recommends that parents carefully weigh the pros and

cons of a gluten free diet.

Buie (2013) reviewed the research available on the link between autism and gluten

allergies. One study involved eleven children who were evaluated for correlations between

autism and the markers of celiac disease. When the data was examined, no strong connection

was observed. Evaluations were also conducted in one hundred twenty children documented with

diagnosed celiac disease. These children were studied for behavioral abnormalities. The

researchers attempted to determine if the children displayed any of the typical characteristic


behaviors seen in autism. None of these children displayed behaviors similar to those seen in

children with autism, and once again it was determined that the link between celiac disease and

autism is very weak. The research showed that although celiac disease may not contribute

directly to the behaviors witnessed in children with autism, there are other symptoms to take into

consideration. Some of these symptoms included; pain, constipation, diarrhea, rash, and sleep

disturbances, which could be responsible for the characteristic behaviors experienced with

autism. This research is limited by the small sample size, and the limited research available

which has attempted to establish a connection between celiac disease and autism.

Kochel (2008) conducted a review on parents’ ratings of a variety of biological and

educational/behavioral treatments commonly used for ASD. Participants in this review included

479 parents/caregivers of children with autism. These participants were recruited through various

autism support groups. The average age of the children were 8.3 years old with a standard

deviation of 4.3 years. The parents completed an online questionnaire which included various

aspects of their children’s development with ASD and parents’ experiences with having a child

with ASD. There was also a section in which parents entered their efficacy rating on individual

interventions, medications, or diets that may have been tried with their child. They rated them as

the child improved dramatically, improved somewhat, no change, or became worse. The most

frequently tried medication/diet treatments were stimulants, gluten free diet, and antidepressants.

Parents reported 50-80% of the time that children improved dramatically or somewhat by any of

the treatments attempted. The gluten free diet intervention was rated effective by half of the

people who used it. The most widely used therapies used by the families’ surveyed included

early intervention, occupational therapy, social skills training, and speech therapy. These

therapies were rated as highly effective or somewhat effective by 70% of families that used


them. This study showed that there is no one consistent therapy that can be used for all children

with ASD. Something that may work for one child may do nothing for another child. Limitations

of this study included parent opinion and the placebo effect. Parents may want to see

improvements because they are attempting a therapy, so they report an improvement. Another

limitation was that low income families are not well represented in this study due to lack of

access to computerized materials.

Whiteley (2012) conducted a review of the difficulties of conducting research about the

gluten free diet as an intervention for autism. For years there have been notions that a gluten free

diet can be used to decrease the classic symptoms of ASD. One difficulty that Whiteley

observed was the cost and difficulty of conducting the double-blind quantitative studies that

produced the best data. He also suggested that it is difficult to determine an interventions’

effectiveness in young children. He indicated that the plasticity of a young child’s brain can play

a part in the behavioral development, and that this fact makes it difficult to determine that an

intervention, like the gluten free diet, is the direct cause of improvements. Whiteley also stated

that there is not a consensus of the various symptoms that are improved when the gluten free diet

is implemented. The symptoms have been broken down into small groups that include;

communication, attention/concentration, social activity, self-injurious behavior, repetitive

behavior, motor coordination, and hyperactivity. Although the few studies that have been

conducted point to possible improvements in these symptoms, Whiteley suggests caution be used

when considering this diet as an intervention. Concerns arose when considering nutritional

deficits of limiting certain foods in a child’s diet. Supplementation of minerals can adversely

affect the absorption of iron and other necessary nutrients. The gluten-free diet will not be a


universal intervention to help all children on the spectrum of autism. This study is limited by

small sample sizes and the fact that some of the research is still ongoing.

Elder (2006) and colleagues conducted a double blind clinical trial to test the gluten free

diet as an intervention for autism. A total of 15 children ranging from 2-16 years old were

recruited for this study. They were chosen with purposeful sampling from the Center for Autism

and Related Disabilities (CARD) and the Child Psychiatry Services at the University of Florida.

To be included in this study, the child had to score above the cut-off on each symptom domain of

the Autism Diagnostic Review. Of the fifteen children recruited, only 13 actually completed the

12 week testing period. The participants were assigned randomly to either the gluten free or the

placebo diet. The dietician and data manager were not blind to the group assignments. All

children in this study were provided food from the University of Florida’s GCRC Bionutrition

staff. Twice a week parents received a supply of food. The children’s diets were recorded daily

and included all food eaten. After the twelve week period, there were no significant differences

in CARS ratings with either diet. Parent observations within groups also reported no significant

changes in specific behaviors. Individual parents and teachers did mention some improvements

language and behavior. A major limitation of this study was its small sample size.

Francis (2005) conducted a review of autism interventions that were available in 2005. In

the review the author emphasized the fact that there is no cure for autism, and that using the

word ‘treatment’ is misleading, for there really is no treatment, only interventions which help

people with ASD adjust to their environment. Francis listed the most widely used interventions

for autism to date which include; psycho-educational approaches, behavioral techniques,

alternative communication, social stories, and psycho-pharmacological interventions. The less

traditional methods listed were mega-vitamin therapy, gluten free diet, casein free diet, sensory


integration, and auditory integration. Francis concluded in this article is that there is no one

etiology-based treatment. Therefore, doctors and parents are faced with the difficult decision of

what treatment to try.

Keller (2010) reported on a study designed to test whether a gluten free diet was safe and

effective. Twenty-two children were recruited for this study. These children were between the

ages of 30 and 54 months, and were consistent in their clinical presentations, medical conditions,

and the interventions they were currently receiving. Children were placed in a very strict gluten

free diet for a minimum of 4 weeks. Only 14 of the 22 children maintained the diet. The children

were administered 3 food challenges, which included a gluten free food, or a placebo. These

challenges were presented in a random, double-blind fashion. To be sure the children were

getting enough nutrition, laboratory monitoring, growth, and weight were all recorded at 6, 8,

and 30 weeks. Over the course of the study, there were no changes in the length each child slept,

number of night waking, and no changes in the children’s stool patterns. Activity levels recorded

by researchers, parents, or teachers did not differ after the food challenges, whether it was a

gluten challenge or placebo. These observations matched the activity recorded on the actigraphs.

This study did not provide support that the gluten free diet is effective as an intervention for

autism. One limitation of this study was the very small size. Another was the fact that children

who were included also participated in an early intervention program of ten hours or more per

week.

Darvill et al. (2013) investigated the diets of children with autism. Fifty children were

recruited from pediatricians in the United Kingdom. The mean age of these children was 7 years.

Home visits were conducted where questionnaires were answered, growth measurements were

collected, and medical history was reviewed. The brief autism mealtime behavior inventory


(BAMBI), FFQ, and a 24 hour dietary recall was used to gather information. The BAMBI results

were placed into tertiles ranging from best, middle range, to worst eating behaviors. The FFQ

data was then analyzed using a one way ANOVA. This provided information about the variety

and frequency of food consumed. The 24 hour recall data provided information about the

nutritional content of the food, and divided into lowest, middle range, and highest consumption.

Cross tabular references were made to assess the linear relationships between the tertiles of

behavior and specific nutrients consumed. Data demonstrated that problematic eating behaviors

are highly prevalent. These eating behaviors affect the diets and nutritional intake of children

with autism. Darvill suggests that screenings be conducted to identify those children with the

poorest eating behaviors in order to intervene and prevent vitamin deficiencies and identify those

children who are at risk for poor nutrition and social implications of problem behaviors.

Herbert et al. (2013) examined a case involving a 4-year-old girl who experienced sudden

social, behavioral, and language deterioration that was consistent with severe regressive autism.

This change happened over a week’s time. She was the child of a full term pregnancy.

Complication of the pregnancy included weight loss, colitis leading to colonoscopies, and pre-

term labor which needed bed rest. After her 4-year well child check-up, her behavior began to

change. She would meltdown, stopped making eye contact, lacked social interest, and had

sensory hypersensitivity. Her Childhood Autism Rating Scale (CARS) score was a 49, which

represented severe autism. Fifteen months after her regression, her family initiated a gluten

free/casein free diet using organic and unprocessed foods. Language improvements were

reported almost immediately, as the girl began speaking in short phrases to get her needs met.

Her temper tantrums improved. When the girl was six, she started mainstreaming in general

education at school. Her challenging behaviors had been reduced, but she still struggled socially.


By age eleven, her CARS score had dropped to a 17, which is indicative of no autism. The

limitation of this study is, of course, the very small sample size of one individual.

Grace et.al. (1999) conducted a small study of three children with autism. Ages of these

children were 5-8 years old. Each child had participated in applied behavior analysis for 3 years

before the study began, and had been on a gluten free diet for at least one year. Rates of learning

for the target children were taken at 3, 6, 9, and 12 months. Analysis of the baseline data and the

12 month post data demonstrated a negative impact on each child’s rate of learning. There was

not a significant change in number of learning trials needed for task mastery among the 3, 6, 9,

or 12 months markers. This study concluded that a gluten-free diet may not affect the rate of

learning on children with autism, but suggested it may have an impact on other behaviors. This

study was also limited by the very small sample size.

Chapter III- Results and Analysis Relative to the Problem

As cases of autism continue to rise, so does the urgency in research to provide answers

and find empirically supported an interventions. The interventions are needed to improve the

lives of those who have autism. The most important behaviors that require improvement for

academic success include the ability to sustain attention, social skills, and communication.

The ability to communicate is impaired in a child with autism. The classroom is an

environment that requires a specific level of communication for learning to take place.

Knivesberg (2003) found communication to be one of the most improved symptoms of autism in

his study of 20 children with autism. Whiteley (2008) also experienced an increase in

communication in the 36 children he placed on the gluten free diet. A second study by

Knivesberg, also demonstrated increase communication and eye contact. This study included


much more parent input than his previous study. The parents of this study stated that they would

continue with the gluten free diet as they believed it made a world of difference for their

children. Genius (2009) discussed the case of one boy who experienced extreme improvements

after following a gluten-free diet. He eventually joined his peers in a general education

classroom and required no aide. Once again, parent input was included in the discussion, just as

Knivesberg’s study. A second study involved one girl and was reviewed by Herbert (2013). This

young girl displayed symptoms of autism at the age of four. Her parents placed her on a gluten

free diet and improvements were seen almost immediately. The conclusions of this study rely

heavily on parent input and a very small sample size. According to these studies, an increase in

communication should be experienced when the gluten free diet is following precisely.

Children with autism also lack important social skills that are necessary in elementary

school settings. Only four sources indicated an improvement in social skills in elementary ages

children. Knivesberg (2003) investigated the social isolation of the 20 children he studied, and

after one year, the children who had participated in the gluten free diet were less socially isolated

and sought out their peers more often than those who were in the control group. Whiteley (2008)

also found the children he studies to more social when they consumed a gluten free diet. Also, in

1999, Whiteley conducted a study that involved 30 children with ASD. The results of the PASS

assessment, that once again included parent observations, demonstrated an increase in

socialization such as seeking out peers and adults, and initiating interactions.

Children with ASD have difficulty sustaining attention for long periods of time. In

education, this skill is important. Only one study provided evidence that the gluten free diet can

increase the attention span of children with ASD. Whiteley (2008) found improved scores on the


ADHD-IV after children were on the gluten free diet for one year. Whiteley was the only study

which utilized the ADHD-IV in his research.

There were many studies that concluded the gluten free diet made no significant impact

on the symptoms of autism. Harris (2012), Hyman (2010), Johnson (2011), Hurwitz (2013),

Elder (2006), and Grace (1999) were five studies that did not find any effect of the diet. Hyman

(2010) and Johnson (2011) conducted similar studies on children between the ages of 3 and 5. In

Hyman’s study, all 22 children were placed on a gluten free diet, and then given snacks that

either contained gluten or did not. In Johnson’s study, 22 children were divided into two

different groups and placed on a gluten free diet or a normal healthy diet. Neither study provided

evidence that a gluten free diet reduced the behaviors of autism. The parent reports in these

studies did not lend themselves to improvements as is often seen. Assessment scores also did not

change after the testing period had concluded. Harris (2012) collected data on diets and

behaviors of children with ASD. She found no correlation between the types of food consumed

by children and severity of symptoms of autism. Hurwitz (2013) conducted a literature review

that determined the results of the main 5 studies that have been done regarding the gluten-free

diet as inconclusive at best. Elder (2006) conducted a double blind study of 15 kids. The main

focus of her study was the CARS assessment. Once the testing period had concluded, there were

no significant changes in the CARS scores for any of the participants. Grace (1999) studied 3

children with autism. These children had each participated in 3 years of applied behavior

analysis, and had been on a gluten free diet for one year. An attempt was made to determine if

the gluten free diet had an impact on a child’s rate of learning, which was tested every three

months. Grace found that the diet made no difference on the children’s rate of learning over the

course of one year.


A portion of the research provided information to parents of children with ASD who are

considering a gluten free diet for their child. Darvell (2009 ), Whiteley (2012), Buie (2013),

Francis (2005), Kochel (2008), and McDermott (2008) were examples of a few of these sources.

There was not any sort of double blind methodology completed by any of these researchers.

They either conducted a literature review of the current research, or collected data and analyzed

it for trends. Darvill (2009) examined the average diets of children with autism. He found these

children tended to avoid healthy foods and requested foods that were full of carbohydrates and

sugars. He suggested that this trend in diet should be changed. Whiteley (2012) conducted a

literature review on the gluten free diet as an intervention for autism. He cautioned those who are

considering this diet, as withholding certain foods from children may cause nutritional deficits.

Buie (2013) examined the link between Celiac disease and autism. His study suggested that the

evidence linking the two is non-existent. Francis (2005) discussed the most popular interventions

for autism. He explained that the term treatment when working with autism should be used

carefully, for there is no universally effective intervention for autism. He warned that what may

work for one child, may have no impact on another child. Kochel (2008) researched parents’

opinions about available interventions for autism. Half of the parents who have tried the gluten

free diet claimed that it was effective in reducing the symptoms of autism in their child.

McDermott (2008) reviewed gastrointestinal symptoms and language regression among 100

children. Children who experienced language regression had more gastrointestinal symptoms

such as constipation and pain than children who did not experience language regression.

Gastrointestinal symptoms may be part of the etiology of autism, which could be helped by a

gluten free diet.


Chapter IV Recommendations for Further Study

The gluten free diet is among one of the most popular interventions considered by parents

who have a child with autism. The diet itself, being difficult to administer, has limitations in

determining its impact on the behaviors that are associated with autism. Of the studies that have

been conducted, the largest limitation was the sample size and parent biased observations. The

research also suggested that parents have to strictly adhere to the diet in order for the data to be

valid, and this can cause some difficulties in conducting effective studies.

Recommendations

Most of the data is inconclusive with regard to support for the gluten free diet as an

effective intervention to reduce the symptoms of autism. As autism has no known cause and no

known cure, it is very difficult to pinpoint one intervention that can be a standard for all cases of

autism. What may work for one child, may not work for another child. Although parent input is

not considered empirical evidence, it is important to take this information into consideration

when analyzing the effectiveness of interventions used for children with autism. A parent knows

their child better than anyone else, and what they witness as working or not working should hold

some value. Some of the observations made by parents might be some of the most important data

that can be collected.

Areas for Further Research


Current research suggested difficulty pinpointing the effectiveness of the gluten free diet

as an intervention to improve the overall academic success of children with autism. Some

children in the research participated in other interventions, such as speech therapy and behavioral

therapy, while they were on the gluten free diet. The research also alluded to the fact that it is

often challenging to take normal growth into consideration during a time of intervention.

Researchers have had difficulty determining if a specific change in behavior was caused by the

gluten free diet, or average growth.

An effective study could involve video recording a child’s interactions while on a gluten

free diet. The recorded interactions would have to be conducted over the course of many

segments of time. In observing a child’s communication ability, an average would need to be

observed. As time passes, and many interactions are observed, a conclusion could then be

formed from the direct observations whether or not the child is making gains. The gluten free

diet would then have to be discontinued to determine if the diet is indeed the cause for the gains

in communication. This would need to be done for any symptom of autism that is being studied.

Observations could provide much more insight to the effectiveness of the gluten free diet than

stagnant numbers on a rating scale. Research has suggested that children with autism often

experience gastrointestinal symptoms which can include constipation, abdominal pain, and

stomach upset. If a child was experiencing these symptoms on a day that a test was administered,

the child may not score well. The possible improvements that the child might be experiencing

would not be observed.

The research suggests that it is a challenge to pinpoint if the gluten free diet is the cause

of the improvements in communication, socialization, and attention. Most often, children with

autism are participating in a large variety of interventions. Children with autism are seeing a mix


of speech, occupational, and behavioral therapists, as well as participating in a sensory diet, and

taking vitamin supplements. These can all be happening at different times, or all at once.

Research has pointed to these interventions as some of the most commonly used for children

with ASD. In order to determine if gluten free diet is truly the cause of improvements in

communication, socialization, and attention, the other interventions could be stopped. Research

suggests time is important, and families do not want to waste time using one intervention at a

time to see what works. Parents of children with autism have reported urgency that they need to

do something now to help their child improve.

Conclusion

The gluten free diet is used by parents despite the lack of evidence supporting it. More

research is necessary to determine its effectiveness. Research suggests it will be difficult to

implement partially due to the age of elementary children. It is difficult to take average growth

into consideration when conducting research on young children. Research suggests time is of

importance when working with children who have autism. Since many methods of research take

ample amounts of time, this will prove to be another difficulty in finding the answers. In the

educational setting, children benefit from skills in the areas of communication, socialization, and

attention. These areas are very difficult for children with ASD, and the research supports many

interventions as an attempt to improve these skills. Overall, a gluten free diet is not empirically

proven as an effective intervention to increase communication, socialization, or attention in

elementary children.

References


Darvill, L., McCaughey, E., Wootton, S. (2009) Quality of Diet and Eating Behaviors in Children with Autism. Proceedings of the Nutrition Society, 68.

Elder, J., Shankar, M., Shuster, J., Theriaque, D., Burns, S., Sherrill, L. (2006). The Gluten-Free, Casein-Free Diet In Autism: Results of A Preliminary Double Blind Clinical Trial. Journal of Autism and Developmental Disordersm, 36(3) 413-420.

Francis, K. (2005). Autism Interventions: A Critical Update. Developmental Medicine and Child Neurology, 47 493-499.

Genius, S., Bouchard, T. (2010). Celiac Disease Presenting as Autism . Journal of Child Neurology, 25(1) 114-119.

Grace, J., (1999). New Treatments for Autism: Effects of a Gluten-Free Diet on Rate of Learning. 2-7.

Harris, C., Card, B. (2012). A pilot study to evaluate nutritional influences on gastrointestinal symptoms and behavior patterns in children with Autism Spectrum Disorder. Complementary Therapies in Medicine, 20 437-440.

Herbert, M., Buckley, J. (2013). Autism and Dietary Therapy: Case Report and Review of the Literature. Journal of Child Neurology, 28(8) 975-982.

Herndon, A., DiGuiseppi, C., Johnson, S., Leiferman, J., Reynolds, A. (2009). Does Nutritional Intake Differ Between Children with Autism Spectrum Disorders and Children with Typical Development? Journal of Autism Development Disorders, (39) 212-222.

Hurwitz, S. (2013). The Gluten-Free, Casein Free Diet and Autism: Limited Return on Family Investment. Journal of Early Intervention.

Hyman, S., Stewart, P., Smith, T. (2010). The Gluten-Free and Casein-Free Diet in Children with Autism. www.urme.rochester.edu/news. Retrieved October 22, 2013.

Johnson, C., Handen, B., Zimmer, M., Sacco, K., Turner, K. (2011). Effects of Gluten Free/Casein Free Diet in Young Children with Autism: A Pilot Study. Journal of Developmental Physical Disabilities, 30 213-225.

Keller, D. (2010). Diet Free of Gluten and Casein Has No Effect on Autism Symptoms. http:www.medscape.com. Retrieved on October 22, 2013.

Knivesberg, A., Reichelt, K., Hoien, T., Nodland, M. (2003) Effect of a Dietary Intervention on Autistic Behavior. Focus on Autism and Other Developmental Disabilities, 18(4) 247- 256.

http://www.urme.rochester.edu/news


Kochel, R., Mackintosh, V., Myers, B. (2009) Parental Reports on the efficacy of treatments and therapies for their children with autism spectrum disorders. Research in Autism Spectrum Disorders, 3 538-537.

McDermott, M. MD, McVicar, K. MD, Cohen, H. MD, Wershil, B. MD, Shinnar, S. MD (2008). Gastrointestinal Symptoms in Children with an Autism Spectrum Disorder and Language Regression. Pediatric Neorology, 39(6) 392-398.

Mulloy, A., Lang, R., O’Reilly, M., Sigafoos, J., Lancioni, G., Rispoli, M. (2009). Gluten-Free and Casein –free diets in the treatment of autism spectrum disorders: A systematic review. doi: 10.1016/j.rasd.2009.10.008

Sims, J., Davidson, T. (2011). Gluten-Free Diet. The Gale Encyclopedia of Medicine, Detroit:Gale.

Whiteley, P., Rodgers, J., Savery, D., Shattock P. (1999). A Gluten-Free Diet as an Intervention for Autism and Associated Spectrum Disorders: Preliminary Findings. Autism, 3(1) 45- 65.

Whiteley P, Haracopos D, Knivsberg AM, Reichelt KL, Parlar S, Jacobsen J, Seim A, Pedersen L, Schondel M, Shattock P. (2010). The ScanBrit randomised, controlled, single-blind study of a gluten- and casein-free dietary intervention for children with autism spectrum disorders. Nutritional Neuroscience 13(2) 87-100.

Zhang, J., Mayton, M., Wheeler, J. (2013). Effectiveness of Gluten-Free and Casein-Free Diets for Individuals with Autism Spectrum Disorders: An Evidence-Based Research Synthesis. Education and Training in Autism and Developmental Disibilities 48(2) 276- 287.

http://www.ncbi.nlm.nih.gov/pubmed?term=Whiteley%20P%5BAuthor%5D&cauthor=true&cauthor_uid=20406576

http://www.ncbi.nlm.nih.gov/pubmed?term=Haracopos%20D%5BAuthor%5D&cauthor=true&cauthor_uid=20406576

http://www.ncbi.nlm.nih.gov/pubmed?term=Knivsberg%20AM%5BAuthor%5D&cauthor=true&cauthor_uid=20406576

http://www.ncbi.nlm.nih.gov/pubmed?term=Reichelt%20KL%5BAuthor%5D&cauthor=true&cauthor_uid=20406576

http://www.ncbi.nlm.nih.gov/pubmed?term=Parlar%20S%5BAuthor%5D&cauthor=true&cauthor_uid=20406576

http://www.ncbi.nlm.nih.gov/pubmed?term=Jacobsen%20J%5BAuthor%5D&cauthor=true&cauthor_uid=20406576

http://www.ncbi.nlm.nih.gov/pubmed?term=Seim%20A%5BAuthor%5D&cauthor=true&cauthor_uid=20406576

http://www.ncbi.nlm.nih.gov/pubmed?term=Pedersen%20L%5BAuthor%5D&cauthor=true&cauthor_uid=20406576

http://www.ncbi.nlm.nih.gov/pubmed?term=Pedersen%20L%5BAuthor%5D&cauthor=true&cauthor_uid=20406576

http://www.ncbi.nlm.nih.gov/pubmed?term=Schondel%20M%5BAuthor%5D&cauthor=true&cauthor_uid=20406576

http://www.ncbi.nlm.nih.gov/pubmed?term=Shattock%20P%5BAuthor%5D&cauthor=true&cauthor_uid=20406576

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THE GLUTEN FREE DIET AND POSSIBLE, POSITIVE INFLUENCES … · commonly considered is the gluten free diet. This paper reviews the neurobiological disorder known as Autism, and provides