Sam’s World ~ It’s Gluten Free

Autism is a multifaceted disorder. It affects the person in a lot of ways.

Obviously autism affects the way words and situations are processed. You have to remember when having a conversation with an autistic person that odds are there is a lot more being said inside their heads that is left unsaid but the expectation is that if they think it you know it.

But it’s not just how they process the words and situations around them. It also affects how they process the world around them as a whole. Their senses are very sensitive. For a lot of children on the spectrum loud sounds and noises are particularly disturbing. The way clothing and other materials feel against their skin can also be a major issue. When Sam was little he would sit and scoop up sand and just let it run through his hands over and over again. He still does it. I’ve already shared how he would rub his head on the carpet. He was entranced by tactile exploration. You’ve no idea how far one raw egg can be smeared until a three year old autistic boy is examining it.

The sensory issues show up in a major way with food. He wouldn’t eat off a fork or spoon until he was almost three. The sensation of the metal combined with the sensation of the food in his mouth was too much. He wouldn’t ice cream until he was four or five for obvious reasons. One week he would peel all the bread off of a corn dog and only eat that part and the following week it was peeled off and pushed aside in favor of the hot dog.

I’m giving you all that back story so that you’ll understand that going gluten free was a big step for us. I’m talking huge. Like most kids on the spectrum Sam self regulated his eating to some very specific items. And for those of you out there that think you can out wait an auttie and they’ll eat when they’re hungry enough…um, no. At least not at first and not when they are toddlers. I’m convinced that an abnormally strong persistence is genetically woven into the DNA of autism and holds all the other traits together.

Of course we assumed that his eating habits where the result of the sensory issues he had until we started reading up on gluten problems connected to autism. Turns out our little fella was a junkie and literally craved the gluten.

Before I go any further I’ll put my disclaimer out there. Gluten free works for us and more importantly it works for Sam. I’ve tried to make it clear in all my posts on autism that what works for one will not necessarily work for another but I do encourage parents to at least consider the affect gluten may be having on your child. You might be surprised. I know we were.

Sam’s diet in the beginning of our autism journey consisted mainly of things like french fries, pancakes, and things like chicken nuggets and other foods that had some kind of batter on them. He also liked pretzels and cheerios. The boy loved multi grain cheerios. Are you seeing a pattern here?

Sam doesn’t have an allergic reaction to gluten. It doesn’t make him sick in the sense that it does with someone who suffers from Celiac disease. For people like Sam gluten actually becomes a drug in their system. Sam’s body does not break down gluten, which is a protein natural to wheat. Instead, it forms an opiate that will cross the blood brain barrier and essentially acts as any other opiate does in the human body. Going gluten free can and does cause the person to go through varying amounts of withdrawal the same way a drug addict does. This is why it can be so scary for parents with autistic kids to take this step. It’s not easy.

We started reading up on gluten free but knowing what a huge undertaking it was I was a little hesitant. There were tests that could be done to determine whether Sam had the unbroken gluten in his system and we were considering doing it. Instead of spending the money first though my ever so thrifty and slightly skeptical  husband decided we should just take a day and not give him any gluten and see what happened. Eight years ago gf foods were not as readily available as they are today. We spent a lot of time and a whole lot of money at a local health food store checking out anything that said gf on it.

The whole day we coaxed Sam into eating gluten free things knowing that in the evening we were going to IHOP and he’d be having pancakes. To say there was a noticeable change is an understatement. Not so much during the day as if suddenly he was making eye contact and carrying on conversations but that night when he ate dinner you could just see him come undone. It was like all the normal autistic characteristics were on steroids. The self stimulations went full speed. We were convinced and didn’t feel the need for any further testing. If we could see him spiral out of us while he was eating a pancake then we knew we should give it a go.

We also had the bright idea that the whole family should go gluten free at the same time. We figured it couldn’t hurt and according to my research might also help with some skin issues the girls had. Did I mention that usually casein free goes hand in hand with gluten free. That’s right, our entire family went wheat and dairy free.

We lasted three months. It wasn’t the disgusting mac and chreese (no, that’s not a typo…it’s what it is actually called) that tasted worse than the cardboard box that it came in that did us in. It was the oh so expensive and horribly tasting hamburger buns that even Rob couldn’t choke down that did it.

Thankfully we discovered that casein didn’t seem to affect Sam so we were able to go back to normal on that front. Which was wonderful because as one commentator on a support board stated, if evil has a taste it is casein free cheese.

Sam does really really on the gf diet and has always asked before eating anything if it was gf. Gluten free products are much easier to find as stores like Walmart and Publix sell gf items. When Rice Chex went gf Sam put about six boxes of cereal in the buggy before I even knew it.  It was a happy day for me when Betty Crocker released their line of gf products and we all did a happy dance when Bisquick  started offering a gf baking mix. It can still be tricky and there are times when we have to make special arrangements for his food but it’s normal to us now.

As he got older we’ve pushed him to try different foods. His whole world opened up when he started to eat meat. Because of the other sensory issues we’ve learned there are certain foods that he just isn’t able to eat. Like broccoli. Broccoli is a very busy food. He will eat green beans but prefers fresh ones to cooked. He also enjoys sweet potatoes especially if I’m making the casserole with roasted marshmallows on top. He eats bananas and apples and doesn’t really care for many other fruits. He doesn’t like the texture of rice or potatoes so most of his meals consist of meat and veggies.

He’s real big into tacos. In the last year he moved from just cheese and taco shell to an actual taco with meat. His record is eight at one sitting. He also loves pizza. We had a coupon for Mellow Mushroom and when we learned they had a gf pizza we had to take him. He ate the entire pizza but himself. He makes pizza at home a lot using a gf English muffin that we get at Publix. The funny story for this week you’ll just have to trust me on…sometimes when he is making the pizzas he will act as if he’s on a cooking show and tells me step by step what he’s doing. Doesn’t sound really funny does it? Here’s the thing though…he does it in this silly voice that is a cross between Julia Child and the Swedish chef off of the muppets 🙂

Here is a recipe for some delicious cookies that we can all make and enjoy.

10 thoughts on “Sam’s World ~ It’s Gluten Free

  1. Thanks so much for sharing this! It's very interesting. I've had a few students with autism and worked with the parents on maintaining a GF diet but I never knew that it can be like a drug for them. That makes so much sense. I would see a difference in behaviors when they would have gluten filled foods. I've got endometriosis and have started to eat GF. I discovered Pamela's Amazing Bread mix. I get it off Amazon. It makes some amazing stuff! And they have plenty of recipe ideas online and on the back of the package. If you haven't heard of it I highly recommend it.


  2. Isn't it amazing how much of our life is affected by gluten? I hope that being gf will help with your endometriosis! We have used the Pamela product and they are pretty tasty. Unfortunately they are not as easily accessible as some other products so I stock up on them when I can 🙂


  3. I know of so many of my friends have had amazing results when they've started a gluten free diet. Hope it continues to be good for you guys!


  4. Wow! I learned a lot. I'll tell you, I think your smart to change his diet and the whole families at the same time. It's hard to do something on your own and the support of the whole family will only help your son. My husband was diagnosed with stage 4 heart failure last year – not because he is over weight. He is skinny and he always has been. We are told this heart failure is due to a virus. My father died of lung cancer – he never smoked – never lived with smokers. He was always a health nut. My father in law died from liver cancer. He shouldn't have. . I have issues with gluten. The list goes on – I think our health crises is coming from our foods. It's sad really what we are eating when we don't even know it. I started to research different products in foods and found some surprising things about high fructose corn syrup that is in everything and in my opinion evil – I was astonished. Sadly I don't always stick to my diet and slip but that's life. . . Thanks for getting me thinking again. Good luck with his diet. I know you will all do great!


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