For an advanced science/technical english course I took this summer towards my nursing degree we had to write a long argumentative research paper. I chose to do mine on a topic I know is controversial, but that I didn’t honestly know much about before doing the research. I know many parents who have their children on special diets because of their autism or other issues and Jeremy and I have debated many times about if we should make the change for Deeds as well. We never did because we really wanted to see what the research said but never took the time to really look for anything other that popular opinion articles and books. Having to write a paper gave me the perfect excuse to pour HOURS and HOURS of time over peer reviewed articles, medical journals, and studies.
Some parents have asked to read the paper and I have resisted posting it until now. I am sure there are those who don’t agree with what I found, or my views on some of the research. This paper took 2 months of my every unoccupied waking hour and it was well received by the professors and doctors who graded it. It is not meant to belittle anyones opinion or attack anyones choices. I post it here for all those who have asked to read it.
Jeremy and I agreed that if we found a lot of research to back up the diet we would place Deeds on it ASAP. What I found was that there is not enough statistically significant scientific evidence after multiple studies to support a gluten- and casein-free GFCF diet in all children with ASD.
Here is the paper in its entirety including references from the articles I used. I am not claiming to be an expert, and I encourage all parents to do research and decide what is best for their children:
Is a Gluten-Free Diet Beneficial for Children with Autism?
With the growing number of children being diagnosed with Autism Spectrum Disorders (ASD) parents are looking for answers and cures. One of the most popular treatments currently is a gluten-free diet. Researchers have run a multitude of studies concerning the effectiveness of this diet. These studies show only statistically insignificant results when looking for improvements in autism symptoms and communication. The lone exception to these findings is a study where urinary peptide abnormalities were also found in the children with autism. In this case, and this case alone, there were significant improvements in the symptoms associated with the disorder, showing a benefit from the gluten-free diet. Unless a child has been tested and found to have a food allergy, a food intolerance, or a urinary peptide abnormality, my research shows that a gluten-free diet is not an effective treatment for the core symptoms of autism spectrum disorder.
Is a Gluten-Free Diet Beneficial for Children With Autism?
While Dr. Leo Kanner was Associate Professor of Psychiatry at the pediatric area of the Johns Hopkins Hospital he wrote a paper about Autistic disturbances (Kanner, 1943, p.2). Until Kanner started to study the new diagnosis he had discovered of autism in 1943, it was often thought that people with autism had schizophrenia. Kanner realized that there were distinct differences in the two disorders and he went on to be a pioneer of research of what was originally called “early infantile autism.” (Eisenberg, Kanner, 1956, p. 3)
Since the first diagnosis of autism in 1943 many treatments have come and gone, and currently there is a trend of biomedical therapy in the form of specialized diets. Dr. Susan L. Hyman, Chief of Neurodevelopmental and Behavioral Pediatrics and an associate professor of pediatrics at Goli-sano Children’s Hospital, states that dietary interventions are used in up to one-third of children with autism (Hyman, 2010, p. 3). Parents everywhere, who are often scared and desperate when looking for help and answers are turning to increasingly drastic treatments for their children who have a diagnosis of ASD (Autism Spectrum Disorder). One of the most popular dietary treatments today is a gluten-free diet. Often time’s children who are put on the gluten-free diet are also put on a restriction of casein, a protein found in milk and cheese products, making the it a gluten-free casein-free diet (GFCF).
Communication skills, developmental delays, and social cues are issues that are major struggles for families and individuals that deal with ASD. Researchers Elena Pattern and Linda R. Watson, at the University of North Carolina at Chapel Hill School of Medicine, suggests that children benefit from educational and joint attention therapy whether implemented by therapists, parents, or peers (Patten, Watson, 2011, p. 67). These hands-on therapies have become widely used and accepted. Occupational and speech therapies are common along with sensory integration techniques, and applied behavior analysis. Children often go to multiple therapists, many times a week, and that amount of therapy can add additional stress on parents who are already worn thin from raising a child with special needs, not to mention the stress it can cause the children themselves. Financially the cost of therapies can be a burden and can leave many looking for alternatives and even miracle cures. It can be devastating to families, who are often unprepared, trying to meet the challenges of caring for a child with autism (Hastings, Brown, 2002).
The universal symbol of autism has become a puzzle piece. Like a puzzle with lost pieces, autism is a hard disorder to piece together since there is no known etiology or cures. It is not hard to see why parents, who are trying to help their children in any way possible, jump on the gluten-free diet in hopes of seeing improvements. For these parents trying to sift through mounds of information, most unproven, can be confusing and can cause a roller coaster of emotion. Once a parent chooses to put their child on a gluten-free diet it is an immediate change in lifestyle. Gluten and casein are in almost every food product ranging from biscuits to ice cream. It can even be found in products that aren’t food sources, such as lotion, stamps, and toothpaste. Many children with ASD already struggle with meal times because of sensory issues or lack of communication abilities they struggle to eat what many would consider a normal range and variety of foods. These children with ASD will often only eat things that are a certain texture, shape, color, or even temperature. They may have staple items they eat almost ritualistically with very strong routines, and find it difficult to eat anything out of their comfort zone. For example, Dr. Temple Grandin (see photo opposite), Assistant Professor at Colorado State University, can only tolerate eating gelatin and yogurt because of sensory issues she deals with associated with her autism (Grandin, 2011, p. 1)
Limiting what children with ASD can eat it can cause a major disruption in the home. Researchers E. Loth and F. Happe from the Institute of Psychiatry at King’s College and J. C. Gomez from the School of Psychology at the University of St Andrews have studied the tendency that people with ASD have to adhere to strictly inflexible routines. They have found that when food limits are imposed that acting out with behavior disruptions are common (Loth, Happe, Gomez, 2010, p. 730).
Unlike the typical behavior disruptions from children, tantrums from a child with autism can escalate and last hours, sometimes the child with ASD will seek out self-injury or cause harm to others while striving to communicate during such episodes. These adverse behavioral reactions can be a main factor why parents may choose not to put their kids on the diet. There is also the question about there being scientific support for the diet having amazing effect or if it is only popular opinion. For that reason I think it is important to look for answers to help unravel this controversy and help educate parents on if the gluten-free diet benefits children with autism. For that main reason it is important to look for answers to help unravel this controversy and help educate parents on if the gluten-free diet benefits children with autism.
Autism and the Intestines
According to the prestigious Harvard Mental Health Letter (2010) “Researchers have long disagreed about whether gastrointestinal problems may underlie some symptoms of autism spectrum disorders (ASDs). This [disagreement] has not stopped some researchers and celebrities from promoting theories and special ‘autism diets’ with no scientific support” (p. 4). Since so many children with autism also show gastrointestinal issues such as constipation, impacted bowels, stomach pain, and loose bowels, it is a natural assumption that diet changes may be necessary to alleviate some of these intestinal issues. Some researchers and doctors, such as Dr. Andrew Wakefield in the United Kingdom have discussed the possibility of inflammation of the intestines being a common factor in children with autism, while parents have taken to the idea before a lot of research was available to support the discussion.
A group of researchers lead by Dr. Elisabeth Fernell with the Department of Neuropediatrics at Astrid Lindgren Children’s Hospital in Sweden ran a study in 2006 to see if there was a link between autism and intestinal inflammation of the gut. The testing was quite thorough and the use of two separate biomarkers of an inflammatory gut reaction were used and scrutinized. Fernell and her team showed that there were normal gut values shown in the children with autism in the study. While the study group had only 24 children with autism, the testing of two different biomarkers in the intestines stabilizes the biological measurements in their analysis (Fernell, Fagerberg, Hellstrom, 2007, p. 1078). Even with this current study and others like it stating that there isn’t a scientific link between autism and the gut, popular theory by many parents and therapists still suggests a strong connection between the gut and ASD.
II. URINARY PEPTIDE ABNORMALITIES
In Norway a study was conducted in 2002 by Knivsberg et al. These researchers point out that urinary peptide abnormalities from gluten and casein have been found in some children with autism (Knivsberg, Reichelt, Hoien, Nodland, 2003, p. 247). Enzymes in the digestive tract break down proteins into long chains of amino acids. If there is incomplete digestion of a protein it will leave a short chain of amino acids. These short chains are referred to as peptides. To check for peptide abnormalities researchers test urine samples. This biomedical research can check if certain biologically active peptides are derived from gluten and casein. In the Knivsberg et al. study these peptides were focal point in their findings. (Knivsberg et al., 2003, p. 254) By focusing on the peptide abnormalities these researchers are giving limited test group specific findings that may help in the future of diagnosing dietary issues in regards to autism.
Cases of Success with Dietary Changes
Knivsberg and her fellow researchers took a unique approach with the study in 2002 by testing the urine peptide levels in their participants, all of who had autism. The only children admitted were those showing already abnormal urinary peptide levels. Marked and impressive improvements in multiple areas are found in the subjects on the gluten-free, casein-free diet after one year, with limited to no improvement from those children in the control group. These researchers have written one of the few peer reviewed scholarly articles that strongly supports the improvements in behaviors and symptoms from children with autism once they are on the gluten-free diet. The most dramatic and impressive improvements Knivsberg and the researchers found occurred in the diet group who saw changes in resistance to communication and interaction. (Knivsberg et al., 2003, p. 251) The main difference between this study and others testing the link between autism and a gluten-free diet is the inclusion of only those children with autism that already had urinary peptide abnormalities into the study. Before the studies were started, all the children had their urine tested for the gluten and casein peptide abnormalities. With the focus on only those with peptide abnormalities the study went in a direction that shows why some parents and therapists might see dramatic results after switching their ASD children to a gluten-free diet. Once admitted into the Knivsberg et al. study the children were put in pairs according to the severity of autism and traits shown. One child in each pair was then placed in the control group and the other in the diet group. Children in the diet group showed vast improvements at the end of the study not only in communication and interaction as stated above, but also in areas of social isolation and appearance of bizarre or strange behavior (Knivsberg et al., 2003, p. 251).
Doctors Reichet and Knivsberg both went on to work on another study in 2010 run by Dr. P. Whiteley. This single blind randomized study was also done by Haracopos, Parlar, Jacobsen, Seim, Pedersen, Schondel, and Shattock and was funded in part by grants from the Center for Autisme in Denmark. They included “…the largest group studied to date using this type of intervention.” (Whiteley et al., 2010, p. 96). This study ran in two parts for 24 months, one of the most extensive and in depth. The researchers studied urinary peptide levels like the 2003 study did. However, it was not stated as definitively. They found that there was a positive outcome for some of the children in the study with autism but that they were unable to control outside intervention of the diets when the children were away from adult supervision. While there was improvement, the results were not as dramatic as the other study done in 2003. In the final pages of the study the researchers express concern for more studies about the safety of long term dietary changes.
Questions of Success
A review was done for the Whiteley et al. study in 2010, headed by lead researcher and doctoral student A. Mulloy at the University of Texas. In this review Mulloy and his team point out that Whiteley et al.’s findings show some major weaknesses, including four children who were dropped out of the diet group “because of no effect of intervention” (Whiteley et al., 2010, p.93). Mulloy’s group points out that with the withdrawal of these children it reduces the sample size of the diet group and that proper adjustments were not made to show correct results in the data collected (Mulloy et al., 2010, p. 86). They also cited the original study with weaknesses in “data analysis, participant attrition, discrepancy across comparable measures and potential bias in parent ratings” they go on to state that there should be “caution in interpreting the findings reported by Whiteley and colleagues.” (Mulloy et al., 2010, p.86) Errors were also found in the statistical tests; the Whiteley group applied a less stringent adjustment in the first round and then did not adjust the levels in the second round of the study. An error that is thought by Mulloy and his companions believed “would have led to largely different findings, as many results would not have been found to be statistically significant.” (Mulloy et al., 2010, p. 87)
III. TROUBLE TESTING
With an estimated one child in every 110 being classified as having ASD by the Centers for Disease Control (Rice, 2006, p. 1) answers on therapies and treatments are being sought by parents all over the world. The statistics show that prevalence of ASD is also raising (CDC, 2006). The demand for information on solving the puzzle of autism is transferred from parents to the medical community and has prompted many studies in regards to autism and diet. Stated consistently throughout the conclusions of peer reviewed articles dealing with the relationship between autism and a gluten-free diet, is that further testing is needed. Every study and test brings its own set of challenges, and ideas on improvements for future endeavors.
Limited Test Subjects
Each study has its own controls and disqualifiers for their subjects. With the popularity of the diet spreading in the autism community it can be quite hard to find children with ASD that have not been on a gluten-free diet before. In addition, all the studies with the exception of one had the parents preparing the all the food for the children. Nutrition help was sometimes, but not always given to parents for the gluten-free diet. Each study would lose some children during the testing due to parents not being able to keep the rigorous demands of the diets.
In a small study Dr. Susan L. Hyman, Chief of Neurodevelopmental and Behavioral Pediatrics and an associate professor of pediatrics at Goli- sano Children’s Hospital, and her fellow authors also found that there was no dramatic effect in young children with autism and the study also showed no significant statistical change in behavior. Hyman states that “It would have been wonderful for children with autism and their families if we found that the GFCF [gluten-free, casein-free] diet could really help, but this small study didn’t show significant benefits.” (Hyman, 2010,pg. 3) A group of 22 children ages two to five years old were used for the purposes of this study. This fairly new research also comes to the conclusion that this area needs a lot more study to see the effects the diet change may have on individuals.
Difficulty Controlling Diet
An intense commitment was often needed from parents to prepare and monitor all the food the child eats during the study. Sometimes the research would last up to two years, putting a strain on parents who are responsible for the new diet. Taking all grains out of the diets of the children who have autism often means removing the grains from the home all together to control the environment. To control such a restrictive diet also required constant monitoring so that outside sources of food cannot be introduced. While at school, or outings vigilance must be kept to make sure “sneaking” bites of foods containing gluten did not occur.
A study done by Harrison, Elder, Shankar, Shuster, Theriaque, Burns, Sherrill, researchers at the University of Florida’s College of Nursing, is the most impressive in controlling the diets of the test subjects. Parents and caregivers would pick up the meals that were prepared for the study three times a week. While they discovered no significant findings in the success of a gluten-free diet in autism, research did show that a double blind clinical trial was possible. Even with the double blind trial the researchers felt the restriction of their results based on the small test group.
These researchers started the study with 20 children, 13 of which completed the 12-week protocol (Harrison et al., 2006, p. 416). Eight of the parents could not distinguish the placebo and experimental diets. This inability for parents to distinguish between the diet and control groups was quite impressive and showed that meals can be made to hide the appearance of a gluten- and casein-free food.
Harrison and her research team’s double blind study laid good groundwork for future studies on the subject by pointing out very specific limitations they came across, and by proving that it is possible to do a double blind trial where the food source is controlled. In the conclusion of their article in the Journal of Autism and Developmental Disorders the researchers claimed that “results from our work are preliminary and indicate the need for future research to address some of the limitations we encountered.” (Harrison et al., 2006, pg. 419)
IV. PLACEBO EFFECT
It is intriguing that research often mentions high placebo effects with the parents and teachers who report back to them. A placebo effect is when the treatment, even if known to be ineffective, show results just because the recipient or those involved in the treatment believe it will work. Some parents of the double blind study by Harrison and her team even chose to continue the diet after the inconclusive results of the study showed no statistical improvements with their children’s autism. Improvements that were reported from parents and teachers were at times not empirically supported by the work done by the researchers (Harrison et al., 2006, p. 419). Turning their back on science and research, many parents claim to see dramatic results which Harrison and her group is because of the wish they have that it will succeed.
The review to Whiteley et al.’s study in 2010 by Mulloy et al., points out the parents of the children in the support group as being a major weakness of Whiteley et al.’s study.
Mulloy and his team state that:
Bias potentially present in parent-report measures…may explain the lack of agreement and occasional representation of positive effects. Because parents were not blind to diet conditions…any expectations they had of the GFCF diet’s effect could have influenced the scores they provided. Such bias is highly plausible given that other researchers have found that parents often overestimate the effects of the diets when compared to blinded ratings using instruments with good psychometric properties (Harrison et al., 2007; Hyman, 2010; Mulloy, 2010, p.88)
Dr. H. Seung, from California State University in Fullerton, led a research team in 2007 to try and find a link between improved communications after implementing a gluten- and casein-free diet. Seung and her team found that parents would sometimes give feedback with improved communication with their children on the diet but it was contrary to what they as researchers were able to discern in the test (Seung, Rogalski, Shankar, Elder, 2007, p. 418). This group of researchers states that some treatments and interventions for autism, including a gluten-free diet, are receiving so much attention due to high frequency of parent testimonies, even if there are lack of scientific findings to back up such attention (Seung et al., 2007, p.).
The study by Seung and her colleagues follows up on the Elder et al. double blind study stating that “Parents of nine children decided to continue using the GFCF diet after being informed of the negative outcome of the study.” (Seung et al., 2007, p.338) Seung reiterates that the parents reported marked improvements in their children’s language and behavior in the Elder et al. study and it was one reason she was motivated to complete the communication study with other researchers.
Questions have been raised if a child eating a restrictive diet without food allergies is nutritionally sound. Eliminating major food groups from anyone’s diet can cause nutritional deficiencies that can lead to lasting health consequences.
E. Cornish, the senior community dietitian for the community nutrition service in South Derbyshire Tanzania England, ran a study in 2002 that showed the effects on food choice and nutrition in autism. This study was done to see if there was significant nutritional difference between the children eating GFCF diets and those not. ”This small study suggests that the exclusion of gluten and/or casein did not adversely affect their nutrient intake, but did not significantly improve it either” (Cornish, 2002, pg. 265).
Cornish emphasizes that parents need to take necessary precautions with their children’s nutritional balance when they implement special diets. So many children have deficiencies in nutrients without changes in diet, and they should be closely monitored when anything is removed. For example casein, a milk protein, is a major source of calcium and protein in most children, these nutrients should be replaced with other food options or nutritional supplements.
It is pointed out in this study that in the United Kingdom many medical practitioners remain unconvinced by studies examining the diets due to the absence of a large random controlled trial (Cornish, 2002, p. 266) She approached this study with a different angle than most of the gluten research, that focuses on behaviors and communication, and looks at the nutritional implications of the diet.
Growing popularity in a therapy does not prove that it is a working and successful treatment of ASD. It is understandable for parents who are seeking answers and help for their children to grasp onto testimonies from fellow parents about a gluten-free diet being a “magic bullet.” However, at some point the parents need to step back and look at the research available on the subject. More testing can be done and maybe there will be increased breakthroughs in the future, but currently a gluten-free diet is not a scientifically supported therapy for most children with ASD.
Time devoted to implementing this therapy can be put too much better use on therapies that have been proven to work such as applied behavioral analysis, social-developmental, peer-mediated, behavioral interventions and sensory integration (Patten, Watson, 2011, p. 64). There is currently so much time, funding, and research being focused on the gluten-free diet debate that could be directed into another, possibly more fruitful, direction. All of these children with ASD will soon grow up to be adults with ASD and instead of wasting time on studies for things that have been done repeatedly we need to look for other options. Studies for a gluten-free diet have been executed again and again, using various models, and with the exception of Knivsberg and her colleagues there is no up to date scholarly support without bias that shows the diet as beneficial for those with ASD (Knivsberg et al., 2003; Mulloy et al., 2010; Harrison et al., 2006; Seung et al., 2007).
Parents are flocking to dietary treatments for their children with autism without first doing their own research for scientific credibility. Many parents don’t have access, or know how to search for information regarding treatments on a scholarly level. Websites and search engines can often lead to confusion and information that is actually contradictory to research findings. Word of mouth testimonials keep parents hopeful that restricting their child’s diet of gluten and casein will cause miraculous changes to occur, it is rarely the case. Struggling with eating habits, food preparation, disruption in routine and cost of special ingredients can lead to more stress than these parents already live with. Unless the child has known food allergies these diets are giving too many families false hope with insignificant results.
The autism community needs to take a stand on this dietary issue and demand that money stop being focused toward further studies linking gluten and autism. Money should be spent on better care, improved education, and special programs for those living with ASD and their families. So much mystery surrounds autism, so let’s stop focusing on questions that already have answers, and solve another piece of this puzzle.
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