Gluterra - gluten-free and healthy

Click here to get a FREE GF Substitution Guide!

Gluten-Free / Casein-Free Diet Helped My Son's Autism

It seems like a lifetime ago when my son, Andrew, was beginning to show the indicators of autism. He was three, and the reality of it all was easily the most emotionally draining experience I've experienced. Something as simple as playing outside turned into hours of obsessing over fans, pinwheels and rituals. Days revolved around Andrew's obsessions, as did my life. My child was locked in a world of rituals and routines, and I was locked in with him. If it was possible to cry yourself to death, I was certain I would have done so back then. With great pride, though, I'm delighted to share some experience I've gained. With experience came results, and I hope what I've endeavored lightens the load for someone headed down the same path.

I recall feeling particularly strong and motivated one day, telling myself I was going to have a normal day. When Andrew and I left preschool (I attended with him since none of his teachers had ever had a student with autism), we were NOT going to spend 3 hours outside touching each air conditioner unit in our complex. We wouldn't stand in the neighbor's yard staring at his pinwheel for 45 minutes. I needed to accomplish mom duties, and I was going to teach my son to adapt. Boy did he show me! What began an afternoon full of tantrums and obsessions turned into several hours... continuing into the next day. Autism had won, and I knew I had to figure a way to fight back. My son's life depended on it, as did mine.

We were new to Florida, and this was Andrew's first year of schooling. Rather than let my son stand in the the corner of his classroom, flapping and avoiding interaction, I forced him to participate. I put my career on hold so that I could attend school with him. As Andrew progressed, I found windows throughout the day (mostly lunchtime and nap time) where I felt comfortable leaving him at school so that I could research his autism and hopefully make some connections in a very new, very lonely place.

Like many do when presented with questions, I turned to the internet. Signing up for forums on autism, chatting with other moms, learning of organizations, I finally felt a glimmer of relief and comfort in knowing I was not alone. Connections led to success stories of parents who used a number of interventions for their children with autism, and I was determined to help my son. Chelation (removing heavy metals from the body), ABA (Applied Behavioral Analysis) to mold behavior, medications, facilitated communication, and dietary changes- mostly eliminated gluten and dairy from the diet, were all presented as possibilities. Always erring on the side of caution, I chose the GF/CF diet as the least threatening protocol in which to begin.

While perusing the inter webs I encountered infinite articles on autism... where it came from, how it can be cured... all so very overwhelming. I came across links for DAN! doctors (Defeat Autism Now), which began my spree of phone calls and connections I will never forget. I won't go too much into detail about what these doctors do, as that is a whole entire different and personal discussion, but I will tell you I am so abundantly grateful for the information I gathered after connecting with one here in Tampa.

One doctor in particular gave me a list of references, upon my request, to verify the success stories regarding his patients' struggles with autism amongst their children. Eagerly, I dialed each number. The very first number I dialed, a woman named Laura answered. She was so excited to share her experience with me, and I was so over the moon ecstatic to hear it. Her son, Jacob, had been suffering from autism since the age of 18 months. At the time of my phone conversation, Jacob had been dismissed from the label of autism, yet still exhibited some hyperactivity and ADHD (typical of the autism spectrum). Her son, once non-verbal and non-communicative, was now an active and social elementary schooler, barely recognizable from the child he once was.

I had already been dabbling with the gluten-free/casein free (GF/CF) diet with my son Andrew, and had seen definitive results. My conversations with Laura, then other parents with success stories, confirmed I had to dedicate as much effort as I could into keeping my son's diet under control. Laura was actually the parent who invited me to a local GF/CF support group- they met monthly to exchange stories, recipes, advice, sometimes tears... what a caring and informed group of parents they were.

By the time I attended my first meeting, my son was GF/CF for about two weeks. Already, I had so many stories to share. I'll never forget, I donned my glasses and a ponytail for the first time in over a year! One of the first symptoms of autism that lessened with my son's new diet was his extreme need for sameness. My hair had to be the same, furniture couldn't be re-arranged, if something broke it needed to go back to being fixed (I used to buy 2 or 3 of everything just in case). If I couldn't keep everything the same, my son would tantrum. Sometimes for several hours at a time — I had the bite marks and bruises to prove it. The word autism is a combination of the Greek word “autos”, meaning “self”, and the suffix “ismos” which regards one's state of being. Roughly, the translation denotes being absorbed with oneself, or isolated with one's state of being. In my son's world, there was no rationalizing, no concern for others socially. Things just had to be the way he wanted them to be, and I had to do everything in my power to keep them that way- not a realistic or healthy way to live I assure you.

This need for sameness certainly determined Andrew's taste for foods- he was living on pizza, ravioli, macaroni and cheese- surely going GF/CF wasn't going to be easy, but it had to be done. The very first day on the diet, my son was in hysterics (which later sent me into hysterics). I felt like I was punishing him. He wanted pizza, he wanted ravioli. I had mushy rice pasta for him to try. He was not impressed. We finally compromised with rice milk and fruits... I didn't realize at the time this would be the only thing Andrew agreed to consume for weeks. Bedtime that first night came without a struggle (Andrew had a history of sleep disturbances and hyperactivity). In fact, by about 6pm I couldn't keep him awake- he was exhausted. And he slept all night! The same thing happened for the next consecutive evenings. It was as if my son had been detoxing after a long drug binge.

After doing some research, with the help of Google and my new-found GF/CF friends, I learned about “leaky gut” and why certain foods affect my son the way they do. Leaky gut occurs when an injury takes place in the gut, causing holes in the intestinal tract. There are many causes of leaky gut — some being a viral infection, low sulfur levels, a yeast infection... I'm unsure as to why my son may or may not have it (I have theories), but following the leaky gut protocol seems to work for us so I'm sticking to it. Since the intestinal tract is responsible for breaking down proteins, a breech in this causes these proteins to leak into the bloodstream rather than into the GI tract. Some experts and/or parents (parents often end up being experts, right?) explain this contamination acting somewhat like a morphine or an opiate in the body. Many people, including myself, noticed a giant “fog” being lifted once the GF/CF diet was introduced. Since what isn't broken down in the intestines can cross the blood-brain barrier, it's no wonder behavior and development is affected.

Other than this so-called “fog” dissipating, there were a tremendous amount of other benefits of going GF/CF. Andrew's health improved drastically- that once pale boy, with his rib cage bulging through his skin, became a hearty and muscular, healthy boy. In fact, he's currently 11 years-old, but is very tall and strong for his age. Illnesses (knock on wood) are no where near as frequent- he used to be sick all the time, and for a long time. Sleep has become the norm- no more 4 hour spurts. Andrew sleeps all night, sometimes 10-12 hours as he should at his age. Although it's gross to discuss... stools became normal (they used to be loose, sometimes green, and tore my poor son's bottom up). Please, ask me about tantrums! My sweet, loving boy used to tantrum several times a day. Over anything. I didn't let him open the door 27 times — tantrum. The toilet flushed and made the wrong noise — tantrum. I drove a different way than he was used to — tantrum. Get the point? Once I started the diet, I charted almost 2 weeks tantrum-free. I consider that amazing for a neurotypical child, let alone one with autism!

The first month Andrew was on his new diet (I didn't tell everyone at his school- I just sent in food for him), the Speech/Language Pathologist was eager to tell me his expressive language DOUBLED in that month. Once I told her what was up, she begged me to “keep doing what you're doing." My mother noticed he could sit down at family functions (he used to dart about). I was convinced. I had changed Andrew's life for the better.

Are there children with autism who won't benefit from the diet? I'm not exactly sure. Everyone I've met (with the exception of the amazing parents from the GF/CF group), hasn't followed the guidelines of GF/CF. In other words, they “cheat”. This breaks my heart. Gluten and dairy can stay in one's system for weeks, maybe even months. I've met several parents who claim they've gone GF/CF, but let their children eat a cookie if it's a “special occasion”, or if they “run out” of the specially made products. This won't work, I assure you. I even went so far as removing soy from my son's diet, which was exactly what he needed at the time, to conquer behavioral outbursts and obsessions. If you're reading this and are considering GF/CF for your child, please don't cheat. Andrew and I, as well as other parents from the GF/CF group, are super willing to guide you through every single meal, every single recipe. In my son's case, a slight breech may cause him days of sleep disturbances and digestive issues. My attitude nowadays is “why risk it?”.

Does the GF/CF diet cure autism? Hmmm.... that's a loaded question. I have to admit, when I first began the diet I was hoping for a cure. I wanted to “fix” my son. Over the years, though, I've learned to put Andrew's health far before any “ideal” I had for my child. Do I want him to graduate high school? Of course. Do I want him to fall in love? Absolutely. But he still has autism. The GF/CF diet has certainly made his life far more comfortable, and his symptoms have lessened. Over the years, we have both learned to embrace his autism, as well as his special dietary needs. At 11 years-old, he can tell me that something will “hurt my belly”, if it's against his diet. As a mom, I'm always seeking to do what's right for my child, even if it's not exactly mainstream. I encourage anyone in this situation to do the same. I beg you to ask questions, seek guidance. I look forward to hearing from anyone in this situation, or simply seeking advice.

Where do I begin? If you are considering trying the GF/CF diet, I highly recommend seeking out support groups. If you have a child attending school, ask the teacher. My son attends private school, and EVERY class in his school has at least one student on the diet. Also, Google it! The internet has led me to so many resources, especially lately. When my son was 3 (8 years ago), it was far more challenging to find information. Contact your local health food stores (Whole Foods tends to have regularly scheduled support groups or offer GF/CF tours upon request).

With a little confidence and perseverance, you too can successfully transform your diet (or your child’s) into a GF/CF friendly one. If you have neither, but still want to give it a shot? Reach out to people like me! I can't tell you how thrilled I am with the improvements I've seen in my son since starting the GF/CF diet. It would make my day to guide someone, just as I needed years ago. It can be scary, perhaps intimidating, but it's certainly possible! Good luck to you all!