A Story Worth Sharing: Gluten, Apraxia, and Beyond


This face is reason enough for our family to follow both a gluten free and dairy free lifestyle. Sure, after my extensive and exhaustive research on the effects of gluten and dairy on the body I have numerous other reasons why we follow this diet. However, only one reason really matters. My son, Cooper. 

This journey began when Cooper was an infant. He was labeled a "colicky" baby with GERD (gastroesophageal reflux disease) or acid reflux. Now don't get me wrong. Cooper was an extremely fussy baby all day long, but I was not convinced that "colic" was a real thing. SOMETHING was causing it, and I was determined to find out what it was. I came across literature on eliminating dairy from a baby's diet, and the improvement in "colic" that soon followed.  Some babies just can't process the cow milk protein which causes them to have bowel issues as well as acid reflux. Since I was breastfeeding at the time, I eliminated both dairy and soy (which could also be bothersome) from my diet. Well, what do you know! I had a whole new, happier baby. Since a lot of babies seem to outgrow the dairy sensitivity, we successfully reintroduced dairy into his diet before his first birthday.

Fast forward to when Cooper was 18 months old. While he has always been growing physically at a very impressive rate, I began to notice he was behind in his speech. A few months later, after a lot of debating, I decided to get him evaluated by a speech pathologist. Sure enough he was testing way behind his age group. While his receptive language was very advanced, his expressive language was significantly lacking. Receptive language is the ability to understand or comprehend language heard or read. Expressive language means being able to put thoughts into words and sentences, in a way that makes sense and is grammatically accurate. At this point, I mentioned the possibility of Cooper having a disorder called Apraxia. A child with the diagnosis of apraxia of speech has difficulty programming and planning speech movements. Apraxic children often have a huge gap between their receptive and expressive language just as Cooper did.   However, it was too early in his development for anyone to truly consider diagnosing him with this speech disorder.

He was entered into the Early Intervention Program in North Carolina where we lived at the time, and was placed with a speech therapist. We also began him in preschool a few times a week to get him socialized, and to see if being around other children might help with his speech development. After more than 7 months of speech therapy and preschool, he was still very behind. During this crucial  developmental time, kids his age are making huge strides in their speech, however, he was making none. I was repeatedly told, "He's just a late talker!". "One day you're going to wake up to him chatting up a storm!"  I'm still waiting for this to happen as we approach his 3rd birthday.

Besides the speech delay, we have also been dealing with behavioral issues. I always related it to environmental changes in his life.  Does he feel my frustration and stress, and is he reacting to it? Is he reacting to the birth of his little brother, Cody? Is he frustrated that he cannot communicate with his  peers? Or simply, is he just being two? None of it added up. I have been around other kids going through their own set of challenges. He seemed more active and much more physical. No sense of fear, and very little remorse. It's just didn't make sense. How could the sweetest, happiest toddler with a smile and laugh that would melt your heart also have such an opposite personality?!

Our family made the decision to move to Tampa to get more family support because it truly takes a village. Two little boys under three was more than I could handle without support. We had Cooper reevaluated by the Florida Early Steps Program in which he tested in the 6th percentile in his expressive language. Heartbreaking news for a mother to hear again.  Even worse was that the state program only excepts children who fall below the 2nd percentile. We rediscussed his apraxia diagnosis, and while they were definitely convinced he had it, they still couldn't perform the test until he is at least three. It felt like we were back to square one with no preschool and no speech therapy.

Much to his dismay, we began "mommy speech therapy" at home. In the mean time, I began researching what was helping those families with apraxic children. I read all about intensive speech therapy, verbal cues for speech sounds, and so on. One day I came across nutrition. Wait, what? I feed my kids so incredibly healthy. I have an obsession with good nutrition, and I know the important role it has on people's lives in particular a growing child. I began reading research on children with not only apraxia, but autism, ADHD, asthma, and allergies. The common denominator was malnutrition or a nutrient deficiency. More importantly, this nutrient deficiency seemed to be linked to gluten sensitivities and gluten allergies. These kids, who were facing so many challenges both physically and mentally, were placed on a gluten and casein free diet. Casein is a phosphoprotein found in almost all dairy products, and in many other products including deli meats and sausage casings. Many people who have gluten allergies also have a similar immunoglobulin response to dairy products as well.  Once these children were placed on this diet, significant improvements were made. Behavior, speech, focus, and appetite all improved. Could something as simple as a gluten allergy really be causing all of these problems? It sounded too easy. Too good to be true. Too crazy if I'm honest. There is a lot more to this research then the few sentences I posted here. Of course, these children were born with the genes that make them susceptible to these different physical and developmental issues, but gluten seemed to be the culprit. 

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After ALL of the research I have read on a variety of topics relating to Cooper's speech delay, this one was sticking for some reason. I couldn't get it out of my mind. Especially since Cooper had a history of food sensitivities it didn't seem too far fetched. However, he didn't seem to have any apparent signs of a food allergy. No obvious bowel issues or discomfort. He occasionally had a small amount of eczema appear out of no where, but it didn't bother him and was very infrequent. Still, the idea of him having some sort of food sensitivity remained looming over my head. In order to get peace of mind and some sleep, I decided to get him tested for food allergies. I wanted to get it off my mind and rule it out as a culprit. I told myself there was no way he had an allergy. I had to be sure though. 

Off we go to the pediatric allergist. She asked what concerns we were having for Cooper. Hives? No. Rashes? No. Bowel issues? No. Nausea or vomiting? No. Nasal congestion? No. Okay, she thinks I'm crazy. To appease me, she did the test anyways. A panel of tiny pricks in his back, twenty minutes trying to keep my wild child still, and we had the results right before our eyes. Cooper had a full on allergy to gluten and oats. I felt overwhelmed in that moment. Validated, scared, guilty, relieved. Validated that I knew something was behind all this madness. Something was causing my brilliant, happy son to fall behind. Scared of the changes that were to come for such a little guy. Guilty that I should have known sooner. Relieved that we found out as soon as we did given there were no apparent signs. 

Am I convinced the struggles Cooper has are because of his gluten allergy? Right now, yes. In the very short amount of time since his diagnosis and new diet, we have already seen improvement. He has shown more improvement in such a short span then we have ever seen in him. Cooper is stringing words together which is something he has never been able to do. Granted, they are "his" words that only we understand at the moment, but we are working to get those words clearer everyday. No, I don't think that just going gluten free and casein free will solve everything. He still needs speech therapy to assist him in developing his speech since he is so behind. The fact is that he still has apraxia. Cutting gluten out is a first step to him healing. His gut lining, which has been damaged due to his allergy, needs to heal to allow the correct nutrients to get to his brain. I am already seeing the cloud lift from his head slowly, and I feel as though he is being able to see things a bit clearer. It's going to be a long road, but we are headed in the right direction. We are no longer stuck on a roundabout. 

My intention in sharing our personal battle is not to convince anyone that a gluten free lifestyle will solve all issues. I share this story to give parents more options when they feel like they have exhausted their efforts. It's to bring hope to what sometimes feels like an endless battle. To share the improvement Cooper has made in such a short time period.

As I said before, it's a long road but we are headed in the right direction.


2 comments:

  1. Amazing! Great job,Elise; and great journey ahead for Coop and family. Aunt Pauline

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  2. Doing an extensive research for Coop’s development is a good step in the right direction. There are instances that the food people eat can affect their chance for improvement. That’s why it’s always best to consume food that have the proper nutrition in their recommended amounts. And I admire you for educating yourself about this matter. Cheers!

    Terry Robberson @ MedCare Pediatric

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