Jake's Journey with Apraxia

And the Friends We Met Along the Way

Before writing this post, I sat down and went through our 26 page NutrEval report that we received in August of 2012. I hadn’t looked at it since that first week when we received the news that Jake had a long list of nutritional deficiencies. Even though most of the results were bad, I remember feeling victorious that 4 out of the 5 omega-3 levels were within normal range. This is a biggie for us because Jake cannot take fish oil. I was also pleased that out of 40 line items on amino acid levels, only 10 were abnormal.

nutreval

Before I talk about the supplements that Jake is currently taking, I wanted to explain the logic behind it. After all, it’s not just about being deficient in key vitamins, minerals, fatty acids, and amino acids. And it’s not as simple as taking a few supplements to get a worn-out body back up to speed. The science behind the biomedical approach is fascinating to me and one I think will end up being much more common and popular in the years to come.

Most people know what gluten and casein are: proteins found in wheat and dairy. Jake tested positive to having an intolerance to both of these things, even though he had no GI problems. Fortunately, he tested negative for celiac disease.

While the cause and effect of celiac disease and gluten intolerance are essentially the same, if someone is only intolerant, there is a solution … remove gluten and the symptoms will be reduced or eliminated all together.

According to Celiac.com …

Celiac disease is an autoimmune disease that affects the small intestine causing it to become inflamed when gluten is digested. The immune system then generates an abnormal response to gluten and attacks its own intestinal tissue.  This leads to the wasting away of the villi that line the small intestine, malabsorption of nutrients and thus malnutrition.

What’s so important about having nutritional levels that are in sync with each other? According to the book “Prescription for Nutritional Healing,” The body needs all nutrients in balance because they work in concert. If there is a deficiency in even a single nutrient, the body can no longer function as it should, and all kinds of things can go awry.”

How does the brain fit into all of this?

When the lining of the intestinal wall is weak, it cannot do it’s job properly and undigested food particles and toxins can pass directly into the bloodstream. In the book “Healing Our Autistic Children,” Dr. Julie A. Buckley states, “In turn, these newer, larger invaders once again trigger a now very alarmed immune system to release its heavy artillery. This escalating battle can irritate and inflame the entire body.”

When you factor in Jake’s regular food allergies and other food intolerances, you’ve got a four-year-old body that is working overtime behind the scenes … trying to fight things that are not really enemies.

Dr. Perlmutter, a neurologist, stated in the Huffington Post …

The link between gluten sensitivity and problems with brain function, including learning disabilities, difficulty staying on task and even memory dysfunction, is actually not that difficult to understand. Gluten sensitivity is caused by elevated levels of antibodies against a component of gluten, gliadin. This antibody (anti-gliadin antibody) combines with gliadin when a person is exposed to any gluten containing food. When the antibody combines with this protein, specific genes are turned on.

When these genes are turned on, inflammatory chemicals are created called cytokines, which are directly detrimental to brain function. Basically, the brain does not like inflammation and responds quite negatively to the presence of cytokines.

So, is there any truth to the gut-brain connection?

I believe so. In very basic terms, I’m a big believer in following my “gut instinct” and when I get scared or nervous, I get that terrible feeling in the pit of my stomach. Additionally, I liked this analogy that Dr. Buckley used in her book …

How is it possible that anyone who has ever walked into a bar could deny the intimate relationship between the gut and the brain? Depending on how much you have to drink, and on your body’s tolerance for alcohol, you might begin to talk more freely, slur your words, or dare we say, stumble when you attempt to walk.

But, isn’t biomedical treatment just for autism?

Absolutely not. In the 2009 Morris-Agin apraxia research study, only 10 of the 187 kids were tested for gluten sensitivity, but all 10 tested positive. Yes, the sample size is small, but the results are unanimous. And studies are popping up all over the place about diet and supplements changing the lives of children who not only have autism, but also apraxia, ADHD, dyslexia, and other disorders.

For these reasons, Jake’s healing and repair treatment is composed of three equally important parts. 1.) Eliminate the triggers that are causing the gut to become inflamed in the first place. 2.) Heal the gut lining with supplements so that it will function properly. 3.) Replenish the body with vitamins and minerals that it is lacking via a healthy diet.

Sources:

  • “Prescription for Nutritional Healing” – Fourth Edition, by Phyllis A. Balch, CNC.
  • “Healing Our Autistic Children,” by Dr. Julie A. Buckley.
  • “Gluten Sensitivity and the Impact on the Brain,” Huffington Post, by Dr. David Perlmutter, 11/21/10.
  • “Celiac Disease vs. Gluten Sensitivity or Gluten Intolerance,” by Celiac.com, 11/13/12.
  • “Syndrome of Allergy, Apraxia, & Malabsorption,” by Dr. Claudia Morris & Dr. Marilyn Agin, Alternative Therapies, July/Aug. 2009, vol. 15, no.4.

Disclaimer: All data and information on this site are for informational purposes only. Always consult with a doctor before beginning any diet or supplement program.

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14 thoughts on “The Gut-Brain Connection

  1. Curvin & Mary Ann Martin family says:

    Hi, My daughter is apraxic (labeled “severe”) and so we initially did fish oil supplements for 6 months faithfully and didn’t notice any major changes. It’s just been a slow steady progress. She has about 8 different sounds she can say now and will be 4 in March. Diet wise, she eats just about everything. Other than that, we’ve done no other testing for deficiencies. Appreciate getting your updates.

    1. tstarmom says:

      Mary Ann – Thank you for your feedback. I’ve heard you have to get omega levels “just right” to see changes and sometimes that can be really difficult. That’s one reason I stopped stressing about not being able to get 2 teaspoons of flax in Jake each day. I’m about to start him on a plant-based omega product or flax oil, so hopefully I can get at least a little bit into him though.

  2. watsonva says:

    I have often wondered how many people that get tested for a gluten allergy have come out the other side as with no allergy to gluten. How many people would say, “Nope, that’s not me! I can absorb and eat gluten products.”

    The population here is just getting started at learning about food allergies and gluten free dieting. The supplement dieting in my opinion will thrive in my opinion as it is introduced to families like ours. I for one is very interested in this and Jake’s journey through this.

    1. tstarmom says:

      watsonva- I would love to know that same thing. My previous SLP said that she had heard of children with autism doing nutritional intervention, but had never heard of a child with apraxia doing it. Maybe there’s just not that many folks who have this type of testing done? Thanks so much for your comments.

  3. Rowan says:

    Hi Tori,
    We had full Bio-medical work up done on Piper at 2, by Dr Leila Masson here in New Zealand who works with Autistic children when she was non-verbal and it showed that she was low in copper of all things! but fine for everything else. The allergy tests came back as a slight inflammation to wheat…but not gluten so I’m really not sure how that works, or what that means to be honest!?
    She is back on all foods now as a trial run but it’s so hard to tell if there is any difference at all. I keep food colouring out and as much refined sugar as possible. I give her speak nutrients every second day as I have noticed that if I give it every day I cant tell any improvement at all but if I leave it a day and then double the dose she starts to babble within hours. (and not sleep) but I guess that’s the trade off right?
    She is still getting breast milk at 2.5 yrs (whew!) but I think it’s just so good for her I dont want to wean her just yet, and it’s got to help her immune system right?
    I would love to hear Jake speak now, do you have recent video?
    We don’t do hand que’s as such but she has learnt a little sign for each sound and as we combine the sounds to make words she does the signs to match – and we que her in for ones she is stuck on. She is getting really good at all her sounds but like all Apraxic kids she cant yet get from one articulatory position to another for form most words.
    Just curious if Jake has shown any other language or communication issues or behaviour problems/ sensory issues along your journey?
    I am super jealous of all the workshops and camps that are available for CAS kids in the US! We really have nothing like that here in New Zealand at all. I feel a overseas holiday coming on….
    Thanks – and lovely reading as always.
    Rowan

    1. tstarmom says:

      Hi Rowan,
      Thanks so much for sharing your story. You can view Jake’s progress in 2012 in the blog post http://www.jakes-journey-apraxia.com/2013/01/03/beating-apraxia/ I compiled one video from video clips of the entire year. The last set of videos was done at the end of December 2012. Jake doesn’t have any behavior problems and he may have a few sensory issues, but has never been officially diagnosed. It has not been such that any of his past SLPs have been concerned. I will probably know more on that front once we do our intensive session with Lynn Carahaly in May. Ditto about Jake having difficulty moving from one articulatory position to another. And he is now having trouble on about word 4 or 5 in a sentence; that’s when it starts getting jumbled. So sorry your resources aren’t as good in New Zealand – that must be so frustrating. Sounds like your daughter’s progressing though, which is always a plus! 🙂

  4. Amber says:

    Thank you so much for this blog! I am just starting to try to change our family’s diet to GFCF. Man, it is overwhelming! But reading through your blog has been helpful. And I especially love this post about the connection between the gut and the brain. Our chiropractor was trying to explain it to me the other day, but I had my three kids running circles around me so I didn’t really catch what she was saying. HA! What you wrote out helps me make that connection.
    I started changing our diet mainly for my older daughter that was diagnosed with ADHD. But I’m hoping it will also help Cason with his apraxia. My only problem with changing his diet is that his oral apraxia and his SPD has really put a huge limit on what he will even try to eat right now. 😦 I was able to switch him to coconut milk instead of cow’s milk and immediately saw results with him no longer being constipated (even though the doctors have told me for years that milk doesn’t cause constipation HA!). And I’ve been giving him a probiotic, multivitamin, fish oil, and Ultracare. Now I just need to get his actual food intake fixed. UGH We are starting with a new OT at the Children’s Hospital soon to work specifically on the Oral apraxia so he can figure out how to move the food around and chew it, and then a feeding team to work more on the sensory part, so I hope all that works. And I hope they will work with me on getting him to eat the types of food I want him to eat (healthier).
    Anyways, sorry to go on. Thank you for your blog. I also follow you on pinterest and it has really helped with trying to change our diet. 🙂

  5. Cate says:

    Hi! I just found your post while searching for gluten and apraxia. My son is 2 1/2 and apraxic (he also has developmental delays and ataxia…). We have been to a million doctors and few are particularly interested in nutrition but my gut is telling me something is going on in his gut that isn’t helping his situation. Where did you find your MD? I have found some DAN doctors and homeopathic physicians but very few holistic MDs/ or biomedical MDs who might take my nutrition concerns to heart. I’m feeling lost in a sea of quackery! Thanks for your help!

  6. tstarmom says:

    Cate – Sorry for the delay in responding! How great that your son is so young and you are already exploring this method of treatment. At the advice of a naturopath I saw when Jake was 2, I googled “Holistic MD” plus my state. I decided against a DAN doctor b/c the couple in my state were chiropractors & I didn’t feel comfortable b/c Jake has so many severe food allergies. He’s a little bit of a complicated case. 😉 My doctor’s name is Dr. Tasneem Bhatia if you’d like to google her & look at her credentials & try find someone similar in your area. I have been overly pleased with the services I have received from her. She is a physician who is also certified by the American Board of Integrative & Holistic Medicine – Here’s the Board’s link where you enter in your state name & what type of services you want (I selected “nutrition”) & it should pull up a few doctors in your area. Best of luck & keep me posted! 🙂

    1. Cate says:

      Thank you so much!! This is a huge help!!!

  7. tania says:

    so is it common for children with apraxia to have gluten intolerances? Anything else? Should I just omit gluten from his diet?

    1. Tania, This is more talked about in the autism and ADHD community, but I think Jake benefitted from going GFCF. Not all children respond, but many do. I also feel like supplementing what he was deficient in was also key to his progress. Even though he is great now, I still haven’t added gluten or dairy back. I’m scared to go back to where we were before. His speech regresses when he is sick or tired, so I know the apraxia beast in still in there lurking behind the scenes. Search within my blog for Genetics and Apraxia.

  8. And it isn’t only just gluten, it’s grains and the sugar of complex carbs. And so I was curious to know if you have heard of the Specific Carbohydrate Diet, and how it has helped thousands of children with autism. The gut brain connection is definitely accurate, and the SCDiet is the best overall in helping. GAPs is another one similar. Going gluten free is only 1/3 of the issue, grains and complex carbs are huge factors. Just a note to suggest this, if anyone feels like research these diets for gut dysbiosis, etc.

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