You’ve Heard of Gluten Free for Autism, but What the Heck is Casein?

Many children on the Autism Spectrum have benefited greatly from a gluten free diet. Gluten and gluten-like proteins are found in wheat and other grains as well as foods made from those grains. They are also found in food starches, semolina, couscous, malt, some vinegars, soy sauce, flavorings, and artificial colors.

What is Casein?

Casein (from the Latin word for cheese) is a protein found in milk and dairy products. Four types of casein protein make up about 80% of all proteins in cow’s milk.

Casein can be broken down into casomorphin, a peptide fragment with opiate qualities, which may increase the release of histamine.

Many children with Autism may have gastrointestinal difficulties that make it hard for them to digest milk protein properly. The most common effect studied is that ingesting milk protein leads to high levels casomorphines in some Autistic children. Affecting behavior like a drug would, casomorphines reduce their desire for social interaction, block pain messages, and increase confusion and spatial issues.

Casomorphines are more commonly found in the urine of children with Autism than their neurotypical peers. Some scientists have concluded that they leak straight from the intestines into the bloodstream.  “Leaky gut” means the casomorphin is  absorbed into the general circulation in children with Autism, which then affects behavior as well as causes addiction to these very foods that are causing the issues.

What happens when it is removed?

If milk protein is taken out of the diet, the idea is that this will reduce the level of casomorphines, and behavior will improve as a result. In our house, there is instantaneous feedback when a milk product is accidentally ingested. He becomes a whirling dervish for hours – screaming, crashing into things, and usually getting into major tangles with the dogs.

Like the gluten free diet, parents who choose a casein free diet for their child must become aware of the ingredients of everything in their grocery cart. Products that contain milk or milk proteins include butter, cheese, yogurt, and ice cream. Read labels carefully, because milk or mild products can be present in surprising places, like soy yogurt or sausages. Maintaining this diet can be hard at first because casein is present in so many prepared foods.

On food ingredient labels, casein can be listed as milk protein, calcium or sodium-caseinate, often found in energy bars, drinks and processed foods. Since casein is such an excellent binding agent, it is usually also found in dressings, sauces and spreads.

What are some alternatives?

Some milk alternatives are soy milk, rice milk, almond milk, or coconut milk. Many children with gluten and casein sensitivities can have issues with soy as well, so I recommend avoiding it.

Cheese is the hardest food to substitute – most of the rice and soy cheeses we’ve tried simply get a thumbs-down from my son.

Coconut milk has been reported to be one of the best choices, since coconut milk is anti-bacterial, anti-fungal and anti-viral and has a positive effect on the gut. In our house, the So Delicious coconut milk ice cream line is a MUST HAVE!

Does your child have issues with casein? What are your favorite alternatives? Let me know by commenting below or posting them on the SOA Facebook page!

What’s So Familiar About Cheese?

Image from dvdverdict.com

I’m going to take a short break this week from the scientific philosophies, the tips and tools, the family stories, and the therapy program discussions and simply share an amusing correlation I made about Autism and a beloved, lesser-known cartoon character. Please note that by no means am I undermining, making fun of, or minimizing anything about my child or any of the brilliant angels on the Autism Spectrum. This is just something I found entertaining and a wee bit insightful about perspective.

My children used to religiously watch Cartoon Network’s “Foster’s Home for Imaginary Friends.” This cute and creative show is about imaginary friends being left to fend for themselves after the children that created them outgrew them and the elderly woman that founded a home for them to be re-adopted one day.

Somewhat mid-season, a character was introduced named Cheese. Wikipedia describes him as “a simple, pale-yellow-colored friend who debuted in “Mac Daddy”. He appears to be somewhat madcap and dim-witted, often saying incoherent or non-sequitur phrases, and breaking into sudden bouts of screaming when frightened or when he doesn’t get his way. Cheese likes goldfish crackers, cereal, juice, chocolate milk (although he is lactose-intolerant), and so on..”

Here are some other things I noted about Cheese:

  • He is never actually mischievous, he just does things in the moment that please him
  • The other characters see him as annoying to be around
  • He is unable to understand anyone else’s viewpoint or perception
  • He tries to do things himself and gets frustrated when he can’t
  • He tries to fit in with the other friends but is very socially awkward
  • He is addicted to cereal and milk, though his body can’t tolerate them (gluten and casein!)
  • He is perceived as “slow” yet he is actually quite brilliant, especially in the episode where the Headmaster punched in a random code on the new alarm system and locked everyone out of the house. Cheese actually remembered the entire (ridiculously long) sequence by tone and could repeat it verbatim; however, he would only agree to help if they made a game out of it and EVERYONE played along.
  • He repeats phrases and gets “stuck” on one or two topics of choice
  • He is a “space invader”: he often crashes into Bloo while playing or follows him around within an inch or two of him
  • He has no regard for danger and needs to be watched carefully
  • He is prone to wandering, and even took a bus through town by himself because of an innocent, unexplained thought he was compelled to follow
  • He is very loud, but he can’t tell that it’s not a normal volume
  • Some typical sensory experiences that other kids would enjoy frighten or bother him

By now, I’m sure you’re starting to see where I’m going with this :)

Maybe some viewers initially see Cheese as “that annoying kid with behavior issues who lacks discipline from his creator” (sound familiar?). I see this character as the quintessential snapshot of a high-functioning Autistic child. In fact, he’s a lot like my son. A lot.

His recurring appearances sprinkled throughout the show illustrate a journey with the other characters that really hits home for me. It’s a journey that goes from avoidance and rejection to an eventual understanding of him.  Ultimately the characters move into compassion and acceptance of Cheese into their community… and even offer their friendship.

Whether that was the creator’s intention or not, that’s my takeaway! Bravo, Craig McCracken.

Here are a couple of short videos to enjoy if you’re not familiar with the character!

Tribute to Cheese

Cheese Alarm Code