My Personal experience with The Gluten Free, Casein Free Diet

5 years ago

Our journey with the gluten-free, dairy- free diet came to life when Xavier started Kindergarten. At the time, Xavier was five years old. We received a phone call early in the school year from his teacher. She wanted to meet with us to discuss Xavier’s peculiar behaviors that he was exhibiting in the classroom and on the playground.

As responsible parents, we set up a meeting to discuss the situation with Xavier’s teacher. His behaviors were: frequent arm flapping, isolating himself from his peers, appearing “zoned out”, difficulty with routines and transitions, and general discomfort in the classroom. Honestly, that information did not concern us all that much at the time. We had also observed these behaviors in the home but at first we were not alarmed. In our eyes, Xavier was a normal little boy with “quirky” behaviors.

Throughout the school year, Xavier’s behaviors were becoming more problematic. The school was complaining that they were getting considerably worse. At the same time, we noticed this at home also. During family outings at restaurants, Xavier would frequently slide under the table, or zone out, and hide under the table for most of the meals. He did not like the noise and lights in restaurants. We also started noticing that Xavier did not like the noise and lights at Walmart, or grocery stores. At Walmart, Xavier would “zone out”, flap his arms, and lie down on the floor. These same types of behaviors were also apparent in the grocery stores. What was going on?

Half way through the school year, the school approached us to authorize psychological evaluations for Xavier. They told us he was exhibiting “autistic like behaviors”. As you can imagine, we were stunned, and heartbroken at the same time. My husband and I agreed, and we signed all the paper work at the school to have Xavier tested for autism.

Once the testing was completed, the conclusion was that Xavier had Sensory Integration Dysfunction. It is a neurological disorder that was discovered forty years ago by A. Jean Ayres, Ph.D., OTR.

Symptoms of Sensory Integration Dysfunction may include:

  • An acute awareness of background noises
  • Fascination with lights, fans, water
  • Hand flapping/repetitive movements
  • Spinning items, taking things apart
  • Walking on tip-toe
  • Little awareness of pain or temperature
  • Coordination problems
  • Unusually high or low activity level
  • Difficulty with transitions (doesn’t “go with the flow”)
  • Self-Injury or aggression
  • Extremes of activity level (either hyperactive or under active).
  • Fearful in space (on the swings, seesaw or heights).
  • Striking out at someone who accidentally brushes by them.
  • Avoidance of physical contact with people and with certain “textures,” such as sand, paste and finger paints.
  • The child may react strongly to stimuli on face, hands and feet.
  • A child may have a very short attention span and become easily distracted.
  • A strong dislike of certain grooming activities, such as brushing the teeth, washing the face, having the hair brushed or cut.
  • An unusual sensitivity to sounds and smells.
  • A child may refuse to wear certain clothes or insist on wearing long sleeves/pants so that the skin is not exposed.
  • Frequently adjusts clothing, pushing up sleeves and/or pant legs.

 

After the diagnosis, we started some research on how to lessen the severity of Xavier’s symptoms naturally. We discovered the gluten-free, casein-free diet. What is the gluten-free-free, casein-free diet?

The Wikpedia Dictionary defines this diet as: A gluten-free casein-free diet (or GFCF diet) eliminates dietary intake of the naturally occurring proteins gluten (found most often in wheat, barley, rye, and commercially available oats) and casein (found most often in milk).

Once we gathered all of our information, we put Xavier on the gluten-free, casein free diet. We slowly replaced conventional foods with this unique diet. It requires much organization, but it is well worth the effort. With time, we have all adapted as a family. His behaviors have subsided significantly. Today, Xavier is in grade three, and he is still thriving on this diet.

How does Xavier feel about being on this special diet? He is old enough now to understand that it makes him feel good. He is focusing better in school, and he is getting good grades. He no longer flaps his arms. He “zones out” occasionally, but nowhere near  the extent that he did when he was eating conventional foods. Sometimes he feels angry towards the diet, but that is a completely normal reaction for an eight year old boy.

We have provided Xavier’s school with gluten-free, casein-free food in the event of a birthday party in the classroom. Considering Xavier can not eat the conventional party food, we have provided his teachers with his own party food that they keep stored in the freezer..

When we go out as a family, we always travel with our home made snacks that are gluten-free, casein free. This avoids the temptations to stop at a drive through when someone gets hungry.

We have cheated a few times over the years with conventional food. The “autistic like behaviors” immediately come back. It takes a few days for those foods to leave his system. As the “bad” food leaves his body, the symptoms subside.

Are we convinced that this diet works? Yes, we are. We have seen it with our own two eyes. Today, Xavier is a thriving, eight year old boy.

Our middle son, Liam,  age five, has recently been diagnosed with Sensory Integration Disorder. We have just started the gluten-free, casein-free diet with him also. We are hopeful that we will see the same positive results in Liam that we have witnessed with Xavier.

For now, I am working hard on transitioning Liam to his new diet. We are having our ups and downs. It is a journey that can have many challenges but I am convinced that with hard work and determination, we will see the same success with Liam as we did with Xavier.

This is an article written by a member of the SheKnows Community. The SheKnows editorial team has not edited, vetted or endorsed the content of this post. Want to join our amazing community and share your own story? Sign up here.
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