Interview # 1: No Success With GFCF (unedited)
Due to technical difficulties, we were only able to post our audio interviews by uploading them onto YouTube. Though this interview is posted as a video, it is strictly an audio recording.
This is an interview with a mother who discusses her experience after placing her daughter, Paige, on the GFCF diet. After Jennifer's daughter was diagnosed with Pervasive Development Disorder (PDD) in 2006, her daughter's developmental pediatrician recommended that Jennifer try placing her on a GFCF diet for a minimum of six months, to see if the diet would help to improve some of her symptoms. In this interview, you will hear Jennifer talk about the experiences she has had with the diet as well as the various ways that gluten and casein have be known to affect patients suffering from autism spectrum disorders as well as gastrointestinal disorders.
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Interview #1: Transcription
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.
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.
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.
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.
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.
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.
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.
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.
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.
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 may not have been done properly since it only takes one small mistake to throw off the entire diet.
Interview #2: Medical Professional: Developmental Psychologist's View on GFCF Diet
Coleen is a developmental Psychologist who specializes in autism spectrum disorders. She currently works with outpatients at the Division of Mental Health Services in Hudson County. Coleen is able to diagnose individuals as well as treat patients who have developmental, emotional, and behavioral disorders. She also helps her patient’s parents cope with the adjustments that have altered their lives. Coleen has sixty clients; therefore, she is constantly working. When she does not work, she conducts group meetings that autistic adults/adolescents can attend. Some of the treatments Coleen provides for her patients are applied behavior analysis (ABA), play therapy, functional behavioral assessments, and parent child interactive therapy (PCIT).
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Interview # 3: Medical Professional: Pharmacist View on GFCF Diet
Chris is a licensed pharmacist who received his doctorate (Pharm D) degree at the University of the Sciences in Philadelphia. He worked in retail at CVS pharmacy and recently switched jobs. Currently, he works for a drug company called Enclara Health. The purpose of this interview was to find out (from a medical perspective) whether or not Chris believes that the gluten and casein free diet helps to improve the symptoms of autism spectrum disorder. Chris stated throughout the interview that there is no evidence in literature that proves this diet to be effective. He also discusses how there is no medication to treat autism. The most effective treatment for this disorder is behavioral therapy.
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After Our Interviews
Once we figured out our research topic, we had to choose who would be the most appropriate participants to interview. We decided that a parent of a child who has autism and professionals from the medical field, such as a developmental psychologist, pediatrician, and pharmacist would give us the answers that we were seeking. Even though we found various individuals to interview, it was difficult to contact medical professionals, especially the developmental psychologist.
Before starting our research, we thought the topic of diet and autism would be widely known and would show significant improvements in a child with this specific disorder. As a result of our findings, we discovered that a gluten and casein free diet is beneficial (just like any diet), but does not show a substantial alteration in an autistic child’s behavior. There has been numerous studies on the GFCF diet and autism; however, many researchers say that there is no correlation between both. Eventually, scientist will develop medications specifically for autism. As for now, autistic children should maintain consistent behavioral therapy and diet (depending on the individual) to better control their behavior.
