How we came to be gluten-free

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I wanted to do this blog to teach others all of the things I’ve learned in the past 6 years.  I have a lot to talk about so I guess I will start with how we came to be gluten-free. 
In January of 2007, our son, Alex, was diagnosed with PDD-NOS. (A high functioning form of Autism) As all Mom’s out there that have had a child diagnosed with autism you understand what it is like to hear those words. “Your son has a form of AUTISM.” It plays over and over in your head and it feels like it isn’t even real. Did he say that? Did he say something about autism? I knew it…I had that sinking feeling in my gut the first time he started banging his head on things. He started spinning in circles, lining up all his toys, and quit talking. His speech therapist was the first to mention it. AUTISM. No….not my child. Surely she is wrong. Then I knew. The tantrums started, I would be smacked in the face, bit and kicked all within seconds. Going anywhere with him became a struggle.  For awhile it felt like we were hermits, hiding from the world, protecting our son from stares of unaware strangers. The lack of understanding about autism and the different spectrums of it are so sad. People have one outlook on autism….They only know of the severe kind. (Think Rainman, with Dustin Hoffman, 1988) Family and friends would reassure me that it was all “normal” toddler behavior. I wanted to believe them, I did.  As a mother, my gut instinct knew that something was very wrong.
So after one diagnosis of a developmental delay from Riley, he still didn’t seem right. I had a second speech therapist say that word again…autism. We had him evaluated again in January of 2007 and sure enough he received a diagnosis of PDD-NOS (Pervasive developmental Disorder-Not Otherwise Specified). We would come to learn that this is  a form of high functioning autism.
After the diagnosis, we cried and mourned the loss of our son. That sounds horrible, but that is what it is….Everything that you plan on that child being or becoming gets thrown out the window.  You don’t know what the future holds. We didn’t know if he would ever have normal speech or be social. We felt helpless with the information. It was a tremendous load off of our shoulders to know, but now it was so real.
So, after crying and crying for days….A fire ignited in me. I became a mom on a mission.  I didn’t care what I had to do or how, but I was going to fix this!  Every book, treatment, ect. I was going to find a way!
I had randomly heard of GFCF (Gluten free, casein free) on Oprah a few years before. It had stuck with me I guess. I ordered the book, The Kid-Friendly ADHD & Autism Cookbook by Pamela J. Compart, M.D. and Dana Laake, R.D.H., M.S., L.D.N.  I read the part about Celiac Disease and it struck a nerve with me. He had all the symptoms. Diarrhea and neurological symptoms. I started the diet immediately. (I don’t recommend doing this because we should have had him tested for celiac before going on the diet.) We got the blood test, which showed up positive. He received a biopsy that was negative. The doctor said he did not have celiac.  He was however lactose intolerant to dairy, which led us to eventually cut out dairy, too. I didn’t care whether he did       or he didn’t have celiac because the diet was helping him. We would later come to the conclusion that he has a gluten sensitivity.
After starting the diet his words tripled! I’m not exaggerating because I had a speech therapist and an occupational therapist that documented the changes. He was a different child. Stemming and tantrums were cut in half. His behavior in general was completely different. He was more social, too. The diarrhea stopped, and he became potty trained 2 days after starting the diet.
Unbelievable, was the only way to describe it. Some of the doctor’s didn’t agree with me that it was necessary for him to be on the diet. Even my husband was uncertain if we were doing the right thing. Going on the diet is stressful for everyone at first. Cutting out all of his favorite foods was difficult, too.  No one had a cut and dry answer for doing it.  After about a year I took him off of the diet to see what would happen and he started doing all the same things again.  After that Chris was begging me to put him back on the diet!  Now it has been 3 years since going gluten-free and we will never go back.
I have no doubt in my mind that if I had not opened that book our life would be different now. Gluten free has saved my son’s quality of life. I hear people say all the time, “How do you do it?, “Your poor kids can’t eat anything!”, or “It’s so expensive, we could never afford it.” What they don’t realize is how hard it was before we changed his diet. We have less medical expense because of the improvement in his overall health and well-being. He is a happy little boy now. He still has PDD, but it is mild compared to what it would have or could have been.

 We still eat cookies, pizza and french fries. We aren’t perfect when it comes to our diet. They make all the same junk food in gluten-free versions, so we still have to be careful. Alex hates vegetables and I have to try to sneak them into him by hiding them in other foods. Thanks to the recent boom in the gluten-free industry being on the diet is a lot easier than it was 3 years ago. Restaurants are putting more effort into food allergies and cross contamination. General Mills has come out with gluten-free versions of cake and brownies.

 So here we are today!  Myself, Alex, our daughter Makenzie, my Mom (recently diagnosed with Celiac Disease) are all gluten-free. We are healthier and happier because of it.
From Wikipedia, the free encyclopedia
Pervasive Developmental Disorder – Not Otherwise Specified (PDD-NOS) is a pervasive developmental disorder (PDD)/autism spectrum disorder (ASD). While those with it have some characteristics of disorders on the autistic spectrum, they don’t fit the diagnostic criteria of any of the other disorders thereon. While PDD-NOS shares similarities with autism, it tends to be milder.[1]
 “Pervasive Developmental Disorder – Not Otherwise Specified (PDD-NOS)”. Yale Child Study Center. 2008-05-06. Retrieved 2008-06-17. 
 From Wikipedia, the free encyclopedia
Gluten sensitivity (GS) encompasses a collection of medical conditions in which gluten has an adverse effect. For individuals with gluten-sensitive enteropathy, removal of gluten generally results in the restoration of villus architecture or lower lymphocyte densities in the intestine. With some sensitivities, improvements may be seen in the neurological state, but a clinical finding may not be clear.  GS also can affect blood chemistry, treatability of certain autoimmune diseases, and/or an untreated improvement in autoimmune conditions.

1 Comment (+add yours?)

  1. April
    Oct 14, 2010 @ 18:52:38

    Thanks for sharing Jessica! You are an AMAZING mom. Sometimes we have to do what feels right to us, even if we aren’t supported by everyone. And look how it turned out. I can’t wait to read all your new posts and hear how Alex is doing, thanks to the braveness of his passionate and loving mother! 🙂


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