THE GFCF DIET DEBATE
ABSTRACT
The prevalence of today’s children being diagnosed with autism spectrum disorders appears to be more common than ever. As this epidemic continues to grow, so has the desperate search for a cure. As both medical professionals and families have experimented with various therapies in an effort to reduce children’s symptoms of autism and autism spectrum disorders, many of them have become convinced that diet may play a crucial role in these children’s development. Though it has yet to be scientifically proven, there are many people who believe that children with these disorders may benefit greatly from drastic dietary intervention, specifically a gluten and casein free (GFCF) diet. This study includes interviews with a mother of a child with Pervasive Development Disorder (PDD), who discusses her experience with the GFCF diet, as well as interviews with other medical professionals such as a developmental psychologist and pharmacist, who discuss their views on the affects of a GFCF diet on children with autism and autism spectrum disorders. This study also provides an overview of current research findings, personal opinions of others who had either great success or no success with the GFCF diet, the opinions of various medical professionals, as well as video footage that documents the success stories of children who are believed to have made tremendous progress in their development as a result of the GFCF diet.
INTRODUCTION
After watching the documentary Food Inc. and learning the unsettling truth behind the many ways in which we are unknowingly being affected by the foods we eat each day, we were immediately inspired to begin our research and uncover more information on this issue. As we considered the long list of health problems that are commonly associated with many of today’s foods, we couldn’t help but wonder if the increase in today’s children being diagnosed with various physical and/or neurological impairments is in direct correlation to the consumption of genetically altered and processed foods.
Since we are both majoring in elementary education, much of what we learn is related to teaching children with special needs, and this has grown increasingly popular due to the fact that so many more of today’s children are being diagnosed with autism spectrum disorders, especially in New Jersey. It was the information we’ve learned in these classes, along with the fact that April is autism awareness month that sparked our interest in learning more about the possible effects that diet can have on a child’s development.
As we began our research on this, we discovered that it is a popular belief that eliminating gluten and/or casein from a child’s diet may possibly help to improve the symptoms of autism spectrum disorders, which led us to base our research around the question “Can a gluten and casein-free (GFCF) diet really help to improve the symptoms of autism spectrum disorders?” Throughout our research, we quickly discovered that while many people believe this to be a completely false claim that has not been based on any scientific evidence, there are also many people who claim to have had much success with the diet.
The purpose of our research was to explore both sides of this debate in an attempt to better understand the reasons why some people believe it to be true and others do not. In order to do this, we have interviewed a mother who discusses her experience after placing her daughter, a child with Pervasive Development Disorder (PDD), on a GFCF diet, as well as interviews with professionals such as a behavioral therapist and a pharmacist. We have also collected a wealth of information from various internet articles and videos that discuss the following topics: current research findings, personal opinions of mothers who have had either great success or no success with the GFCF diet, opinions of various medical professionals, and video footage that documents children who are believed to have experienced success with the diet.
PSYCHOLOGICAL AND PHYSICAL AFFECTS THAT GLUTEN AND CASEIN ARE BELIEVED TO HAVE ON CHILDREN WITH AUTISM
Though many people argue that there is no connection between diet and autism, information suggests that many children who are diagnosed with autism or under the autism spectrum have been known to suffer from various gastrointestinal problems, and this may be the reason that certain foods are thought to be linked to their development and behavior. One of these gastrointestinal problems is called Leaky gut, which is a condition that affects the lining of the intestines. Research suggests that leaky gut syndrome is caused by damage of the intestinal lining, which makes it very difficult for the body to properly digest certain foods. The result of this damage causes bacteria and toxins to leak into the bloodstream, triggering an “autoimmune reaction, which can lead to gastrointestinal problems such as abdominal bloating, excessive gas and cramps, fatigue, food sensitivities, joint pain, skin rashes, and autoimmunity” (What is Leaky Gut?).
Though it was once said that many professionals did not consider the term “leaky gut” as a real condition, an accumulation of evidence has now established that it is in fact a real condition, and “a significant percentage of children with autism have increased intestinal permeability, but it isn’t known whether this is the cause of an affect of food sensitivities and an underlying metabolic problem”(What is Leaky Gut?). While there has been no scientific evidence that supports the common belief that a GFCF diet can help to improve the symptoms of autism, it is understandable how some may believe that there is a link between the two. Since so many children under the autism spectrum have been noted as having gastrointestinal problems such as leaky gut, Celiac disease, and allergies to foods containing gluten and casein, it is easy to see why many parents and professionals believe that eliminating gluten and casein from a child’s diet has helped to improve their symptoms. This is because the autistic children who suffer from conditions such as these often experience physical and psychological problems as a result of their inability to digest foods containing gluten and casein.
It has been said that when an autistic child is also noted as having one of these conditions, the feeling they experience after consumption of gluten and casein, is said to feel very similar to the “mix of euphoria, lethargy and clouded brain function” and “hallucinogenic thoughts” that many people may experience after taking an opiod (HNWellness). This is due to the fact that their bodies are unable to properly break down wheat and/or dairy products. When this occurs, the partially digested food then turns into peptides which act as opiates after they are combined with stomach enzymes. After these peptides travel to the brain, they attach to its opoid receptors, “mimicking a hallucinogenic drug” (HNWellness), and can also affect both the nervous and immune systems as well.
Though it was once said that many professionals did not consider the term “leaky gut” as a real condition, an accumulation of evidence has now established that it is in fact a real condition, and “a significant percentage of children with autism have increased intestinal permeability, but it isn’t known whether this is the cause of an affect of food sensitivities and an underlying metabolic problem”(What is Leaky Gut?). While there has been no scientific evidence that supports the common belief that a GFCF diet can help to improve the symptoms of autism, it is understandable how some may believe that there is a link between the two. Since so many children under the autism spectrum have been noted as having gastrointestinal problems such as leaky gut, Celiac disease, and allergies to foods containing gluten and casein, it is easy to see why many parents and professionals believe that eliminating gluten and casein from a child’s diet has helped to improve their symptoms. This is because the autistic children who suffer from conditions such as these often experience physical and psychological problems as a result of their inability to digest foods containing gluten and casein.
It has been said that when an autistic child is also noted as having one of these conditions, the feeling they experience after consumption of gluten and casein, is said to feel very similar to the “mix of euphoria, lethargy and clouded brain function” and “hallucinogenic thoughts” that many people may experience after taking an opiod (HNWellness). This is due to the fact that their bodies are unable to properly break down wheat and/or dairy products. When this occurs, the partially digested food then turns into peptides which act as opiates after they are combined with stomach enzymes. After these peptides travel to the brain, they attach to its opoid receptors, “mimicking a hallucinogenic drug” (HNWellness), and can also affect both the nervous and immune systems as well.
POSITIVE AND NEGATIVE AFFECTS OF A GFCF DIET
The gluten and casein free diet (also known as the GFCF diet) consists of eliminating wheat, grains, and diary products from the daily food intake. There are a great amount of foods that contain gluten and casein. It is very challenging to avoid gluten in supermarkets; however, a natural food store displays gluten free products. Casein is a protein that is found in dairy or lactose. Many soy products contain casein; therefore, it is important to carefully read the labels when following a strict gluten and casein free diet.
Positive effects of diet: If a gluten and casein free diet is done the proper way, many families who have an autistic child believe that it can help their child’s sleep, activity, and habitual behaviors. Some researches state that it has shown to enhance an autistic child’s progress. Just like any diet, it takes several months to recognize a difference in the individual child. Other findings have shown that this diet can help cleanse the colon of harmful buildup, which restores the body’s immunity and ability to absorb nutrition. Even if a child does not have autism spectrum disorder, it provides the child with more energy and a better physical and mental well-being.
Negative effects of diet: This diet requires parents to follow strict guidelines that should be received from medical professionals (pediatrician, behavioral therapist/developmental psychologist, or dietitian). Many of the parents concern regarding this diet is whether their child will get adequate nutrition. If the gluten and casein free diet is not done the proper way, a child could have a deficiency in calcium and copper. Also, when beginning this diet, children or adults may feel worse before feeling better. It is important to be under the care of a physician or nutritionist when using this diet. The GFCF diet must be used with proper supplements for the child. With additional supplements, autistic children can receive whatever nutrients they may lack by obtaining this diet.
Positive effects of diet: If a gluten and casein free diet is done the proper way, many families who have an autistic child believe that it can help their child’s sleep, activity, and habitual behaviors. Some researches state that it has shown to enhance an autistic child’s progress. Just like any diet, it takes several months to recognize a difference in the individual child. Other findings have shown that this diet can help cleanse the colon of harmful buildup, which restores the body’s immunity and ability to absorb nutrition. Even if a child does not have autism spectrum disorder, it provides the child with more energy and a better physical and mental well-being.
Negative effects of diet: This diet requires parents to follow strict guidelines that should be received from medical professionals (pediatrician, behavioral therapist/developmental psychologist, or dietitian). Many of the parents concern regarding this diet is whether their child will get adequate nutrition. If the gluten and casein free diet is not done the proper way, a child could have a deficiency in calcium and copper. Also, when beginning this diet, children or adults may feel worse before feeling better. It is important to be under the care of a physician or nutritionist when using this diet. The GFCF diet must be used with proper supplements for the child. With additional supplements, autistic children can receive whatever nutrients they may lack by obtaining this diet.
Medical Professional's View on the GFCF Diet
Researches say that many autistic children who have gastrointestinal problems have a hard time digesting certain grains properly. As a result of autistic children not being able to digest properly, their bowel movements are irregular. The inability for autistic children to digest can become even more severe than just having irregular bowel movements. These substances (gluten and casein proteins) can be extremely dangerous and can cause more damage to the child’s brain.
The developmental psychologist provided a great amount of insight regarding the gluten and casein free diet in autism. Coleen explained that children with autism tend to be highly comorbid with gastrointestinal problems and have many food sensitivities. Once parents find out what their child is specifically sensitive to, the child’s pain will go away as a result of removing that product from their diet. By making adjustments to the child’s food sensitivities, they will be able to focus better because they got rid of the barrier that caused pain. She stated that if an autistic child has an allergic reaction to gluten or casein, then this diet is most certainly worth experimenting with. However, there is no way to get 100% off gluten and casein products in the world that we live in today. Gluten and casein are in things such as shaving cream, shampoo, clothing, and even play doh. In order for a child to obtain a gluten and casein free diet, the entire family has to sacrifice these products as well. Researchers say that this diet must be adapted into a lifestyle for everyone in the family. During the interview, Coleen discussed that the GFCF alone does not cure autism. Services such as academic, therapeutic, ABA, and speech are the things that benefit a child greatly. Incorporating this diet with the child’s related services could be beneficial, but trying this diet alone will not make any difference behavior wise.
When speaking with the pharmacist named Chris, It was evident to see that he had a strong belief on the link between the GFCF diet and autism. He states, “There is no evidence in literature that indicates a correlation between the both.” While he firmly believes that this diet does not work, Chris does think this diet could be helpful when used with the correct herbal supplements. When asking Chris about the possible medications (over the counter) that autistic children could take. He stated that there is no precise medication that is specifically for autism; however, many autistic children do take medication for their behavior and trouble focusing. An example of these medications is concerta or stratterra. When experimenting with this diet, it is important that parents do not completely stop their child of eating gluten and casein products, but rather make the transition gradually over a two-month time period. Below is a video clip of Chris’s opinions on the various questions that we asked him about autism and the GFCF diet:
GFCF DIET SUCCESS STORIES
Mother's Success Story
A mother (she remained nameless through out the video) who has an 8-year-old son with autism discusses his symptoms of autism when he was little. At birth he had physical symptoms such as vomiting and constipation. When he was formally diagnosed with this autism, the mother went to several pediatricians to find some answers as to why he was always sick and had mood fluctuations. In this video, the mother explained that when dairy and gluten was removed from her son’s diet, his mood and behavior changed dramatically. The sons behavior therapist also makes an appearance on the video and speaks about how the child’s mood improved with the diet change.
The video took place at a DAN (defeat autism now) conference. When we interviewed the developmental psychologist, she stated, “The DAN foundation promotes the gluten and casein free diet as a cure for autism. When parents find this out, they automatically jump on the opportunity.” The mother in this video appears to be an advocate of the DAN foundation. She worked with a DAN doctor for a couple years while conducting this diet on her son. As a result of this diet, the mother believes that her son lives a much happier and healthy lifestyle.
Daniel's Success Story
After being evaluated in 2000, Daniel was noted as having significant receptive and expressive language delays, as well as significant delays in his play skills. Cadey Gorman, a speech and language pathologist who had been working with Daniel since July of 2000, explained that when Daniel would play, he would repeat the same thing over and over and if anyone tried to enter his world while he was playing he would have a severe meltdown, throw tantrums, and become extremely possessive over his toys. He was also unable to follow any directions without receiving a lot of visual cues from others (Gorman).
After Daniel’s initial diagnoses, Gorman began an intervention twice a week with one-hour sessions at his home, along with occupational therapy and special instruction, and within a few months Daniel’s family began “drastic dietary intervention.” Gorman claims that within one month they began to see excellent improvements in Daniel. She states that Daniel began to expand his word length and utterances and follow direction without any visual cues. She also says that Daniel’s progress with his play skills and comprehension became so rapid after one month on the diet that they had to change his goals on a weekly basis in order to keep up with his progress. It was also noted that Daniel began to gain language very quickly, greet people spontaneously, respond to and comment on his environment, engage with others, and make eye contact. Gorman says that she believes “whole heartily that he made progress not only because he really benefited from one-on-one intervention, and some strong sensory integration input, but also the dietary intervention” (Gorman).
Following the interview with Gorman, there is another interview with Daniel’s third grade teacher, who speaks about what a wonderful and intelligent student he is. She explains that although she has a background in special education and knows exactly what to look for, she would have never known of his autism if his mother had not told her. Daniel is in a regular education classroom and is considered to be one of the better students in her class. She also notes that not only does he do well in school and earn good grades, but he also does very well working and playing with his classmates.
Daniel's Success Story: Video
NO SUCCESS WITH GFCF DIET
Mother Reports No Improvement in Child's Development While on GFCF Diet
Throughout our research on the affects of a GFCF diet in children with autism and autism spectrum disorders, it appears that for every parent who has claimed to have noticed significant improvements in their child’s development and behavior, there are an equal number of parents who have not recognized any improvements in their child’s development as a result of the diet. In order to gain a better understanding of what some parents have experienced after placing their child on the GFCF diet, we met with a woman by the name of Jennifer, who shared with us her knowledge and experience with the diet after trying it out on her two-year-old daughter Paige.
Jennifer first learned about the diet in 2006, which was at the time of her daughter’s diagnoses of an autism spectrum disorder called Pervasive Developmental Disorder (PDD). Following Paige’s diagnose, Jennifer met with an early intervention therapist who suggested she try starting her daughter on the GFCF diet as a form of therapy, which was sometimes noted as improving children’s development. Jennifer, like most parents, was willing to try anything to help her daughter’s symptoms, and after seeking out other parents and professionals with knowledge of the diet, she was very inspired to try it.
Not only did Jennifer meet parents who truly believed in the diets effectiveness, but her daughter’s developmental pediatrician also recommended she try it, not just because of her PDD, but also because her daughter had sometimes experienced gastrointestinal issues, which may have been related to gluten and casein. Jennifer explained that the most common reason for a doctor to recommend the diet is not only because a child has been diagnosed under the spectrum, but because there are many instances in which autistic children have also been noted to suffer from more serious gastrointestinal issues, such as Celiac disease. Celiac is a disease that is known to affect the lining of the intestines, causing the improper absorption of nutrients and the body to have difficulty breaking down certain foods, specifically those containing gluten and casein.
Although her daughter’s developmental pediatrician was very supportive of the GFCF diet, he, and all of the other medical professionals Jennifer spoke with, noted that there was no guarantee it would work, but that it also could not hurt to try it for at least six months, which is the approximate amount of time it may take for the body to fully eliminate all traces of gluten. He explained that the diet had the potential to be healthy as long as Jennifer was sure to compensate for the vitamins and nutrients Paige would no longer be getting due to the elimination of foods containing gluten and casein, such as whole grains and dairy products. Paige’s developmental pediatrician also stressed to Jennifer the importance of remaining fully dedicated to following the exact guidelines of the diet, which can be extremely difficult for some. He explained that one small mistake can be a huge factor in determining its level of effectiveness.
The GFCF diet is extremely difficult to maintain because of how easy it is to accidentally transfer gluten to a child, which may be a big reason why some people have not had any success with it. The only way to be sure to prevent gluten from getting into the body, aside from food elimination, is to use separate kitchen appliances and utensils, such as toasters, dishes, pots and pans, silverware, servers, etc. Though Jennifer was aware of the diets implications and costly expenses, she was desperate to try anything if it meant helping her daughter, so she did everything she could to properly follow the diet and ensure
its effectiveness, but even after months on the diet she did not see any significant changes or improvements in her daughters development.
How did parents learn about the GFCF diet?
Throughout our research, we found that this diet was very popular with parents who tried to seek possible treatments to help their autistic child. We were curious as to how various parents learned about this diet. The IAN (Interactive Autism Network) Community created a chart of their findings:
RESEARCH RESULTS ON GFCF DIET
Small Group Study Shows No Link Between the GFCF Diet and Autism
In a new small group study, researches tested the effects of wheat and diary products. Their findings showed that gluten and casein free diet has shown no significant improvements in the symptoms of autism spectrum disorders. Susan Hyman, a pediatrician, who led a study of diet and autism states, “subsequent studies have not confirmed this to be true”(Rubin 1). Even though there are still many parents and teachers who are convinced that there has been an improvement in autistic children when they stopped eating these foods, it has not been declared. Hyman believes that “behavioral therapy, not their diets, deserve credit” (Rubin 1).
This study was done over an eighteen-month period and consisted of fourteen children, ages 2 ½ to 5 ½. The family members of these children were committed to a strict diet that was free of gluten and diary products. Once the children had been on the diet for four weeks, they were “challenged” once a week with a snack that contains wheat-flour or non-fat dried milk. Professional dietitians created a snack that looked and tasted the same whether or not they had gluten and casein in it. Parents and teachers observed the children’s behavior and completed a survey concerning their behavior. This survey was completed before and after the snack. The findings showed that there were no negative changes in the children’s behavior after they ate the snacks that contained gluten and casein. This study, like many others, proves that there is not correlation between autism and the GFCF diet.
Survey of Success Rates with GFCF Diet
The GFCF Kids Diet Survey is an Internet based survey used to gather information about dietary intervention such as a GFCF diet for patients on the autistic spectrum. Many researchers are working to find the possible link between “incomplete breakdown of proteins (identified by the abnormal presence of opiate peptides found in urine samples), and several kinds of health problems hitherto classified as "mental." Among these problems are Autism, Pervasive Development Disorder (PDD) and Asperger’s Syndrome.”
The survey was designed so that researchers could collect as much information as possible on the diet, and then analyze the data in an effort to shed more light on the possible connections. The survey consisted of two questionnaires, called the "Main Survey" form and the "Infringements Experience" form. The three basic questions asked in the survey are: “What percentage of respondents get better on the diet, how much improvement can there be, and how fast does this happen?” In addition, the survey also asks questions such as, “Why do some patients get better results than others? What are the similarities and differences between those who do well on the diet, and those who don't?”
The conclusion of this survey suggests that although the results are from an informal survey, they indeed support the belief that dietary intervention “can be a valuable treatment option for some people with autism spectrum disorders, and in some cases, may lead to the complete reversal of autistic behaviors.” The results also suggest that “time” is one of the most crucial factors in this diet; meaning that a patents success has a lot to do with the patients age at the time the diet was implemented.
OUR CONCLUSION
As a result of our findings, we were able to get diverse views on the gluten and casein free diet and the possible benefits it has on autism spectrum disorders. From the medical perspective, we noticed that both the developmental psychologist and the pharmacist stated that there has not been enough evidence to prove that the gluten and casein free diet benefits an autistic child. However, this diet is most certainly worth trying. Anything that could possibly enhance an autistic child performance is worth the experiment. Researchers do not know enough of about autism, what causes it, and the sub-types of this disorder. If parents have a child who has a gluten allergy type of autism, it could be at their advantage to try this diet. Generally, parents do not know if this diet works unless they attempt it. Even though this diet cannot hurt autistic children, the most efficient way for a child’s behavior to improve is through the various services that are provided. There have been numerous studies on the GFCF diet and autism, but many researchers say there is no correlation between both. There has been no empirical evidence that proves this diet is shown to work. Eventually, scientist will develop further advancements to help improve autism spectrum disorders. As for now, autistic children should maintain consistent behavioral therapy and a healthy diet (that fits the individual) to better control their behavior.
