After my conducting my interview with Jennifer, I was very interested to find out more information on one of the terms that  she had mentioned she came across very often in her own research of the affects of gluten and casein in autistic children.  The term she referred to was called “leaky gut,” which both she and my research have described as a condition that affects the lining of the intestines and is commonly found in autistic children. 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?).

 After reviewing an article written by a medical doctor, I learned that in the past, Leaky gut syndrome was  not considered to be a real condition, but the author of the article, Dr. Weil explains that that “evidence is accumulating that it is a real condition that affects the lining of the intestines” (What is Leaky Gut?).  He also explains that a colleague of his who deals with this condition in children has “established that 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?).  If the information of leaky gut syndrome is in fact true, then I can certainly understand how a condition such as this can cause autistic children to experience developmental delays.

In our research on the popular debate as to whether or not a GFCF diet may help to improve the symptoms of autism and autism spectrum disorders, I came across an article I found on the Autism Spot website.  This article discuss the physical and psychological affects that gluten and casein are believed to have on children with autism, which is a disorder commonly associated with other gastrointestinal problems and food allergies.

To help others have a better understanding of what children with autism and autism spectrum disorders (who have also tested positive for a gluten and/or casein allergy) experience as a result of the consumption of gluten and casein, the author compares the effects that they have on the brain with that of an opiate. He explains that the feelings these children experience are 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).  They are also noted to affect both the nervous and immune systems as well. 

Though the author of this article states that not all autistic children have food allergies, he explains that based on his experience, it is very common for them to test positive for gluten and casein allergies.  He also concludes that based on his experiences in counseling parents of autistic children, he has found that many children have greatly benefited from the GFCF diet.

Questions to ask a behavioral therapist:

1. Do you believe that a gluten and casein free diet is shown to benefit children with autism?
2. What are the pros and cons of a gluten/casein free diet?
3.  What does a behavioral therapist do for individuals with autism?
4. If a parent wants to put their autistic child on the GFCF diet, is it harder for the child to adapt than it is for a child who starts it at a young age?
5. Do parents often ask you about this diet? If so, do you recommend it?
6. Do children with autism show a change in their behavior when they first start this diet?
7. Do many of your patient’s parents believe this diet is effective?
8. Is it hard for parents to be consistent with this diet?
9. How does behavioral therapy help an autistic child?
10. Would it be more beneficial to the child if this diet were started at a young age?
11. What are some of the ways that autism is caused?
12. Why type of symptoms can improve in autism by maintain this type of diet?
13. Have a lot of your patients tried the GFCF diet? If so, were they on it for a long period of time?
14. What types of tests are given to diagnose a child with autism?
15. What are some steps to start a gluten and casein free diet for an autistic child?
16. Is this a popular diet?
17. Why do so many parents/teachers believe that this diet shows a significant improvement on an autistic child’s behavior?
18. Do you think the foods we eat have anything to do with the reason for so many of today’s children being born with autism spectrum disorders?
19. Do you think that there is a possibility that researchers will ever declare the GFCF diet to be effective?
20. It is possible that autistic children will not respond to this diet?
21. What is the link between celiac disease and autism?

This article was presented in the newspaper called USA Today. It discusses how the diet of dairy and wheat products in autism has shown no significant improvements in the symptoms of autism. 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 are teacher who are convinced that there has been improvements in autistic children when they stop eating these foods, it has not been declared. Hyman believes that “behavioral therapy, not their diets, deserve credit” (Rubin 1).

The study that was examined in this article was done over an eighteen-month period and consisted of fourteen children, ages 2 ½ to 5 ½. The family members of these children stuck 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 regarding the their behavior. This survey was completed before the snack and afterwards. The findings showed that there were no negative changes in the children’s behavior after they ate the snacks that contained gluten and casein.

A YouTube video that I found deals with a parent whose child was diagnosed with autism at fifteen months old.  I wanted to find a parent who used a gluten and casein free diet on their child and found changes in their behavior and moods. The mother discusses her eight-year-old child’s symptoms from when he was little.  At birth he had physical symptoms of vomiting and constipation. When he was formally diagnosed with this disorder, the mother went to several pediatricians to find some answers as to why he was always sick and had mood fluctuations. The mother stated that one of the doctors said, “he has autism, he is supposed to throw up.” When I heard that comment, I was very curious as to why the mother made such a remark. Was one of the symptoms to autism spectrum vomiting?  I am very interested to know if there is a link between vomiting and autism. The comment that this mother made has sparked my attention. Since I watched this video, I have added this to my list of questions for the interviewers.

During this week, I am going to interview the pharmacist again and ask him this question as well. In the YouTube video, the mother explains how the child reacts when dairy and gluten is removed from his diet. The child’s behavioral therapist discusses how the child’s moods improved with the diet change. The video is very interesting, especially hearing it from the mother perspective

These answers are very straight forward and short. The pharmacist went into greater detail during the video that will soon be posted on my oral history page. 

Questions and answers from my first interview with Chris

1.Do you believe that a gluten and casein free diet shows a difference in an autistic child?
- No, there have been no studies that indicate this diet has been showing positive results in children with autism. Also, there is no evidence that there are any preservatives in the diet.  

 2.What are some the beneficial symptoms of this diet?
- Parents have stated in the past that it improves eye contact, attention span as well as the general mood of the child. 

3. Can this diet be appropriate for other children with disabilities, such as Asperger’s, Down syndrome, and mental retardation?
-Yes, anytime you improve a child’s diet and give them more healthy foods. Cutting out the chemicals and synthetic substances can improve a child’s behavior, thought process and overall performance by giving them more natural and healthier foods.

4.Are there any negative effects of not having gluten and casein in a diet?
 - A lack of calcium deficiency. Also there are always certain foods that children are missing out on that are healthy for us, such as wheat and calcium. 

5. Can you give any examples of a food that contains gluten in it? 
 -Wheat, rye, barely and oats

6.Can you give any examples of a food that contain casein in it?
 - Dairy products, such as milk, cheese, yogurt, cream cheese, and butter. 

7. Do you think the foods we eat have anything to do with the reason for so many of today’s children being born with autism spectrum disorders?
- No definite evidence that foods are linked to the disability of autism or other behavior problems. 

8. For anyone, can gluten and casein be harmful if it is eaten in large quantities? 
- Just like every other food, you must do everything in moderation to remain healthy. Also, if you do not have intolerance to these chemicals then they will not be harmful to someone.

9. Is there any type of medication (over the counter or prescribed) that is shown to benefit children with autism?
 -As far as herbal supplements the pharmacist does not think there is any medication that is shown to benefit children with autism. There are certain medicines that are over the counter, which can improve a child’s concentration and behavior, but there is nothing into literature that shows there is evidence of medicine that can benefit a child with autism spectrum disorder. 
10. Are there any pharmaceutical drugs that are gluten free and casein free?
-The only way to tell is to look into every inner ingredient in every capsule, tablet, or pill that is out there. Different pharmaceutical companies use different fillers for their tablets and capsules. Without looking at the inactive ingredient it is really hard to tell which specific medicine contains and doesn’t contain gluten and casein.

11. What is casomorphin?
-Casomorphin are peptides, such as protein fragments that are derived from the digestion of milk proteins.

12. Should parents be concerned about the calcium deficiency if they remove dairy products?     
 -Absolutely, calcium is an essential supplement that we need in our diets. As our society indicates now we are not doing well with getting the proper nutrients and vitamins into our bodies.  If parents are going to remove calcium from a child’s diet, they need to use calcium supplements because children need them while their bones and skeletal systems are developing. They need the calcium to support their growth

This video was posted in 2009 after tracking the progress of a child named Daniel, who was diagnosed with autism back in 2000.This video shows “before” and “after’ footage of Daniel, beginning when he was about two or three years of age and ending when he was about nine years old.  The “before” footage is of Daniel before beginning a GFCF diet .and  the “after” footage shows Daniel with absolutely no signs of autism. 

The video starts with home video footage of Daniel during a speech therapy session (pre GFCF diet) with a woman by the name of Cadey Gorman, a speech and language pathologist who has been working with Daniel since July of 2000. In this footage, Daniel shows great difficulty with listening to and following directions, as well as mirroring other’s actions as they try to teach him how to play.  The video then cuts to an interview from 2003 with his speech and language therapist, Cadey Groman, who offers background information on Daniel’s case. 

Groman explains that she met Daniel in July of 2007 (around the time of his diagnosis).  Daniel’s initial evaluation was that he showed significant receptive and expressive language delays in what he understood and what he was saying, as well as significant delays in his play skills.  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.  Also, Daniel was unable to follow any directions without receiving a lot of visual cues from others. 

After meeting Daniel, Gorman began intervention twice weekly for one hour sessions at his home, along with occupational therapy and special instruction.  In September of 2000 Daniel’s family began “drastic dietary intervention” and within one month they began to see excellent improvements in Daniel.  He began to expand his word length and utterances and follow direction without any visual cues.  Gorman claims 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.  She also says that he began to gain language very quickly, greet people spontaneously, respond to and comment on his environment, engage with others, and make eye contact.  Groman 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.”

Following the interview with Groamn, 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 she had not been told by his mother.  Daniel is in a regular education classroom and is considered to be one of the better students in her class.  Not only does he do well in school and earn good grades, but he also does very well working and playing with his classmates. The final part of this video is footage of Daniel in his classroom working with others and having fun with his classmates at a holiday party. Lastly, we see Daniel practicing his Tas Kwon Do, which he seems to be quite good at, and a final shot of Daniel talking to his father who is holding the camera.  If Daniel does still show slight symptoms, one would never know it from looking at this video

1.   When did you first learn of the possible link between autism spectrum disorders and foods containing gluten and casein?
    
    I found out in 2006, when my daughter was two.  This was when she was first diagnosed on the autism spectrum.

2.  Who was it that told you about the GFCF diet?  What did they say?

    I would say therapists and developmental pediatricians. We had early intervention therapists, who came to the house and asked if I’ve ever considered the GFCF diet.  But, before I tried it, I first went to check with a developmental pediatrician because I really didn’t want to just go off what therapists were saying though; I wanted a doctor to tell me, and  they  also recommended it.

    All the professionals I spoke with were very cautious and not one of them could guarantee it would definitely work. They told me to try it and to make sure that I was doing it 100% correctly.  It seems like a lot of people, even those who recommended it, didn’t say it would definitely work.  They said that some people absolutely swore by it, but they still couldn’t tell me that it was a sure thing.  They also said it couldn’t hurt her as long as I made sure she was getting the adequate amount of nutrition required. 

3.   Have the people that you spoke with about the diet experienced any personal success with it? What did they say?

    I did have parents tell me that it really works and that I have to do it.  Some of them absolutely swore by the diet, but a lot of their children had more physical symptoms, like problems with their stomachs.  So, of course, if your child is feeling sick all the time I would think it would hinder their development, and I think that’s why they had better results.

    My daughter did have some G.I. issues, which was another reason why it was recommended to me.  She couldn’t drink milk or hold any liquids down. She would vomit 8-12 times a day until the age of one. Because it is such an extreme diet, many of the doctors who suggested it said they usually only recommend it when they see something other than just a developmental delay, such as G.I. problems.  

    The thing that I really wonder is if it’s a possibility that the reason people had success with the diet was because their child was just late a bloomer.  If you do something for six months, obviously they’re going to mature within that time.  So I question whether it was the diet or just the fact that they caught up developmentally.  I think a lot of people tend to believe what they want to believe, especially after doing all that work. 

4.  Is it common for children on the autism spectrum to have G.I. issues, such as Celiac disease?

    I don’t really know since I’m just a parent and not a doctor, but it does seem to come up quite often.  I’ve heard of quite a few cases in which there is a link between the two.

5.  Do you know how gluten and casein affects children on the autism spectrum?

    I really did a lot of research on this, but the way it was explained to me was that it affects their “guts.”  It affects the way that they absorb nutrients, so not only could they be malnourished, but the biggest thing I heard about was something called “leaky gut.”  It’s believed that their guts are leaky, which causes them to feel lethargic or irritated.  If children are low on energy, it can be very hard for them to focus. Again, I’m not too sure how much to buy into all this, but I did read about it and my understanding is that it affects the way that they physically feel.  If a child’s malnourished because they’re not absorbing nutrients properly, their brain’s probably not going to develop properly. It’s very complicated because so many kids with autism have other issues as well, like autoimmune problems.

6.  Do you know the affects of gluten and casein in children on the autism spectrum?
    It usually affects people with Celiac disease, but there are also some people who, though they don’t have celiac disease, are still gluten and lactose (casein) intolerant. 

7.  What kinds of things were you required to do to be sure that you were fully eliminating gluten and casein from your child’s diet?
    I had to be sure to use completely separate utensils, servers (spatula, spoons, etc.), pots and pans, colanders, toaster, and of course, food elimination. You also have to look out for things that most people would probably never even think about, like vitamins.    

8.  Was it difficult to maintain the diet?
    Yes, probably the biggest and most difficult thing to keep in mind when trying this diet is contamination.  It’s very easy to accidentally mess the diet up because of this.  Food doesn’t have to be eaten in order for gluten to get into your system.  All it takes is to come in contact with foods containing gluten for it to get into the body.  For instance, if someone touches food containing gluten and then touches their face or food with that same hand, it contaminates the food.  It’s hard to always be aware of what your child is touching or eating when you’re not there.  Also, a lot of restaurants advertise a gluten-free menu, but none of it means anything if they are using the same appliances to cook and serve the gluten-free food.  In order for gluten to be fully eliminated, all trace amounts of it must be fully eliminated.

9.  Can you give some examples of foods that contain casein?

    Any products containing dairy.

10. Can you give some examples of foods that contain gluten?

Anything that contains wheat (also called enriched flour), barley, and rye, which are usually foods , like pasta and bread.  Basically, gluten can be found in most foods that contain complex carbohydrates, except for things like rice and potatoes, corn.  Some people say that oats are okay, while others say they aren’t.  The only way for me to truly determine that the diet was beneficial, was to not take any chances and fully eliminate everything, including oats.

11.  Does the diet require special foods or are there a lot of regular foods available that do not contain gluten or casein?

The easiest way to avoid foods containing gluten is to eat fresh produce and unprocessed foods.  Stick with shopping in the perimeter of the store to avoid processed foods.  They also sell plenty of pastas, cookies, and foods like that, which are gluten-free.

12. Do stores offer a wide selection of gluten-free and casein-free products?

    Yes, stores like Whole Foods, Genuardis, and Shoprite even have an entire isle dedicated to gluten-free foods.  The good thing is that there are a lot of products (mostly big companies) that advertise as being gluten-free, and are all throughout the supermarkets. Wegmans store brand always says if a product is gluten-free, by putting a large “G” on the package, and the good thing is it’s also a lot cheaper.  Wegmans and Whole Foods are the most comprehensive when it comes to food allergens, but Whole Foods is also very expensive.It wasn’t always like this though because back in 2006 I used to have to order my daughters foods online and also go to Whole Foods, which was extremely expensive.  I was paying $80 a week just for my daughter’s snacks and special soy milk.

13. Was it difficult to find restaurants that offered gluten-free foods? Which restaurants offer these foods?

    When my daughter was first diagnosed in 2006, it was very difficult to find restaurants that supported the diet, but nowadays I see a huge difference in the amount of restaurants.  All the big chains, like Bertucci’s, PF Chang’s, On the Border.  A lot of places have gluten-free menus that you can print before going.  It has become so popular that the staff and cooks at restaurants are known for being extremely accommodating and knowledgeable  when it comes to this diet. There are also a lot of smaller restaurants that are accommodating, but the big chains are the safest way to go.

14. Is it expensive to maintain the diet?

    Yes, for instance, I buy loaves of bread that are much smaller in size, about 2/3 the size, but are around $5, compared to $3 for a regular loaf of bread.

15. How long does it take to fully rid the body of all traces of gluten?

    I’m not sure because everyone is different, but that’s why they say to do it for six months. They say there’s no use in trying the diet for less than six months.  Though, there are some people that say they’ve noticed a difference in their child within a few days, but then again that might also be related to the fact that a lot of kids on the spectrum also have Celiac disease and G.I. problems.

16. Did you notice any significant changes in your child’s behaviors while she was on the diet?

    No, I noticed no changes in my daughter.  There were no changes in either her PDD symptoms or her regular behavior patterns.  We even kept both a food journal and a behavior journal to track her progress.  We also had three therapists (speech, occupational, and developmental) come to the house five times a week, and neither the professionals nor myself noted any differences.   But the professionals also said it could be because the diet. It doesn’t take much to mess the diet up, even so much as one goldfish cracker can completely throw everything off, and again, you don’t always know what your child is eating when you’re not there.  Though I didn’t notice any differences when she was on the diet, she has still made a tremendous amount of progress in the past few years, which I feel is largely due to the fact that she eats very healthy foods.  Even though I didn’t have any difference in my daughter while on the diet, I certainly wouldn’t tell others not to try it.  It just didn’t work for me. 

 This week, I was able to interview a close friend of the family in an attempt to answer the research question “Can a gluten and casein-free (GFCF) diet really help to improve the symptoms of autism spectrum disorders?”  Jenny, a mother of two, has had a lot of experience with the gluten-free diet, since both she and her daughter have tried it.  Her daughter, who was diagnosed with an autism spectrum disorder called PDD (Pervasive Developmental Disorder), was placed on the diet back in 2006 for six month period.  While Jenny’s reasoning for being on the diet (which is related toCeliac disease ) is not totally relevant to my research question, I do feel that her own experience with it has also been helpful in answering some of my questions because she was able to give me information about the diet that her daughter (who was only about 2 years old at the time) was, of course, unable to disclose.
     Though this was a rather lengthy interview which consisted of a great deal of information (explaining both the positives and negatives of a GFCF diet, which will be posted very soon), the outcome, in short, was that she did not see any significant improvements in her daughter’s symptoms of PDD.  Jenny was not all that surprised by this, since she had previously been warned (by others who have tried the diet, as well as medical professionals) of the strong possibility that the diet would make no difference in her daughter’s symptoms.  Though she had already been told that the diet was not a guarantee, she had also heard many success stories from other mothers who swore by it, as well as a few doctors, who had heard of quite a few people who had success with the diet.
    I was extremely pleased with the information I was able to obtain from this interview, but I am also hoping to interview someone who has experienced success with this diet, in order to get both perspectives on it.  As I have mentioned, Jenny has come across quite a few people who have had a great amount of success with it, so she is currently in the process of helping me get an interview with one of these mothers.  I am only hoping that this will happen within the next few days