After the story, I hosted a “web chat” at the station about gluten and dairy free cooking. It was a lot of fun for me, but I know I couldn’t keep up with all the questions (not having bionic fingers, and all). WCCO was kind enough to provide me with a transcript of the web chat, so I will post the questions with the answers (including links I may have), and also answer the questions I may not have gotten to. I will probably not get that posted until Monday or Tuesday, however. We have the “cousin invasion” this weekend and will need to work on organizing the web chat between all the fun.
I want to thank WCCO for doing this story and getting information out for others. They have a great Autism resource page connected to the pieces they are running this week. Also, on their site is the week menu plan and shopping list I provided – all gluten and dairy free. I hope it helps!
Watch the video of the news story here: WCCO News Story on Autism and Diet – July 2008
Transcript: Experts Recommend Gluten-, Dairy-Free Autism Diet
Reporting Amelia Santaniello
MINNEAPOLIS (WCCO) ―
Like most young boys, Will Johnson is all about dinosaurs, not necessarily dairy. In fact, he’s allergic to milk and eats gluten- and dairy-free.
But the lack of dairy in his diet might actually be helping him grow in new ways. He is on what has become known as the autism diet, which he said does everything.
“He was diagnosed with high-functioning autism about a little over a year ago,” said Will’s mother Janette Johnson. She added he was very hyper and energetic at the time.
Swings and ball pits weren’t enough to get the meltdowns and sensory needs associated with Will’s autism under control.
“Even a few months ago, he wouldn’t be able to be around here at all,” Janette Johnson said.
She decided to start her son on a gluten-free, casein-free diet after hearing from other parents it could work miracles. But, to fully understand the science behind the diet, it’s important to note what gluten and casein actually are.
Gluten is a protein found in foods like wheat, rye, oats and barley. It helps hold things like breads together and makes them soft. Casein is a protein found in dairy products, and one of the things that makes cheese melt.
Some doctors say these two proteins act like the drug opium in children with autism, impairing both the immune system and the brain.
“We’re not 100 percent sure, but what’s happening is that the body may not be completely breaking down those proteins,” said Dr. Paul Nash, a nutritional wellness practitioner.
Nash, who is what’s known as a “DAN” (defeat autism now) doctor, said the partially digested proteins are getting absorbed, which can have effects. DAN doctors believe gluten and casein can change how some kids on the autism spectrum think and act.
“They’ve done studies where they’ve injected lab animals with these compounds and they’ve seen behaviors similar to autism and schizophrenia,” Nash said.
On the contrary, medical doctors have been slow to embrace the idea that the diet could change a child’s behavior.
“I think a lot of it is just the history of what autism used to be thought of, as a behavior disorder and that there was no medical link,” said Dr. Bryan Jepson, a biomedical expert on autism who is considered an expert in the biomedical field and practices at an autism-focused clinic called the Thoughtful House Center for Children in Texas.
Jepson is one doctor who said the diet does work, but that those in his profession are often skeptical. He said with some children, you can see an immediate response, but it will often take about a month or sometimes even a few months.
“I think a lot of the argument from the doctors would say well, it’s expensive, it’s hard, you’re wasting money, it’s a false hope,” he said.
At the same time, Jepson said that, in reality, 60 to 70 percent of his patients who have tried it have in fact had a response.
Janette Johnson is cognizant of the controversy. When reporter Amelia Santaniello asked her what the traditional allergist said, she said he told her she was wasting her time, money, and socially impairing her child further than he was.
But like so many parents with kids on the spectrum, she was willing to try anything to help her son.
“His behavior has changed quite a bit,” she said.
She said some parents say it is drastic, like if a child starts talking, but she thinks for Will it’s more subtle. He now has better eye contact and talks to more people. During their interview, he told Santaniello he likes the food his mother makes for him.
“It’s a lot of work on the parent to make sure that the child is getting what he needs,” Johnson said.
At the same time, shopping, label reading and learning to cook a whole new way are getting easier. Penni Ruben, director of store operations at Lakewinds Natural Foods, said they do what their customers ask for. At Lakewinds, every item in the store is coded with colored dots.
“The green is wheat-free, the red is gluten-free, the yellow is yeast-free and the blue is dairy-free,” Ruben said.
The store also hosts cooking classes for parents who are just starting out, taught by those who have experienced the same thing.
Cooking instructor Angela Litzinger, whose daughter is gluten-intolerant, said she does it because she doesn’t want anybody to start from scratch.
“I think everybody deserves a cookie,” she said.
Litzinger added that sometimes it is hard being a mother, and that having a kid with special needs can sometimes puts an extra layer of pressure on your time.
“I don’t want anybody to start from scratch like I had to,” she said.
Janette Johnson said the classes are a huge help and she is now experimenting with everything from brownies to rolls. She admits the diet is a lot of work and very expensive, upwards of $100 or more per month, but she doesn’t think of it as a diet. She thinks of it as another therapy — a food therapy.
“It’s something that he needs to help his body so he can think and he can be better,” she said.
So now that I have no job…can I be your publicist?
It was so great seeing you yesterday at WHC – I needed that – I am such a dancing porcupine!
See you soon!
Cari, sure, works for me, but not much to publicize, cutie… My family keeps teasing me!! Except my kid – they think I am a SUPER STAR!
Jen, it was so great to see you too! Yeah, it would be great to get some cooking classes going on the north end of the Cities, to help people out up this way, too. Now that the summer has lightened up we need to get together, quills and all….