Jumping on the Gluten-free Bandwagon for our Son with Sensory Processing Disorder
I have to be honest, as the buzz increased about gluten-sensitivity, I felt pretty positive it was just the latest bandwagon to jump on. Don’t get me wrong, I understand the reality of Celiac Disease, but the “sensitivity” thing seemed like a fad to me.
Easy to say when it doesn’t involve you, right?!
Well that all changed when my second son Asher, 18 months at the time, was diagnosed with Sensory Processing Disorder. SPD is a neurological condition in which the person has difficulties organizing the sensations coming from the body and the environment. One of the first things I read about SPD recommended removing both Gluten (protein found in wheat) and Casein (protein found in dairy) from his diet. I decided I’d give it 3 weeks, and then go back to life as usual, because it surely wasn’t going to change anything.
Well I’m here to shout from the rooftops, because it’s turned out to be life-changing for us!
Making Sense of the Writing on the Wall
Before I go there, I should probably start at the beginning. For many months before Asher’s official SPD diagnosis, I knew something was not quite right. Having never heard of SPD, I couldn’t put my finger on it. I knew that life with him had been far from easy-breezy, as it was with my first son, Kyan.
I could go on about how much Asher cried and how sensitive he seemed to every little thing, but I think a lot of mom’s can relate, so I tried to believe it was just his more sensitive personality. Asher had horrible reflux that required medication, much to my holistic-minded dismay. I’d eliminated everything I knew to be possible triggers, but honestly, gluten wasn’t even on my radar at the time. I know I can’t turn back time, but I sure do wonder if I’d removed gluten if we might have found the culprit. Maybe, maybe not. But I wish I’d known to try.
From the time Asher was a newborn, it was clear to me that he didn’t like loud noises. He would get hysterical every time I used the vacuum, blender, hair dryer, etc., so I had to be conscious of the distance between us whenever I used loud appliances. He would cry when we were out in busy, loud places, and even when Kyan got too loud and rambunctious. Once he could, he would often put his hands over his ears. I felt horrible, but figured everyone was probably right….he would adapt as he got older.
So how do you know when it’s an issue that needs to be addressed, or when it’s something that “he’ll grow out of”, as I often heard?
For me it was part mother’s intuition and part detective work. I believe that many people have sensory issues to a greater or lesser degree. Kyan definitely has been on the OCD side of cleanliness and order, and well, the apple doesn’t fall far from the tree….the mommy or the daddy tree in this case! But it has always been manageable.
Around Asher’s first birthday, when he started communicating more clearly, his stress and anxiety in certain situations became increasingly clear. As time went on, things got more intense, not less.
When Asher became mobile, he suddenly had a choice. Loud noise turns on….he could now move as far away from it as possible! I would always give him enough warning, and he would literally bolt to the other side of the house. And his first 3 word sentence was “What’s that noise?”, which he asked obsessively about every little noise. I realized how easily I tune things out, and had to really work to pay attention to sounds so that I could hopefully provide an answer and avoid a meltdown.
I think the hardest part was when it became increasingly evident to me that whatever was going on was affecting him socially as well. We all want our children to feel comfortable in the world, and seeing that he didn’t was really hard on me. He would play in the same room with kids his age, in fact we’d been getting together with the same 8 kids in our playgroup since they were newborns. But if they came near him, he would scream at them. Once he learned the word “No”, he would scream that in their face if they got too close. On the playground, he’d scream at the kids coming up behind him on the slide. They were just waiting their turn, but he clearly felt they were crossing the boundary into his personal space.
It broke my heart when our playgroup reached the age where all the kids were hugging each other good-bye, and Asher couldn’t get closer than waving bye while I held him.
And then there were the tags. Or the light unexpected touch of soemething. I could see him constantly tensing up in fear of certain things touching him. And if it did touch him, or anything else happened that frustrated/ overwhelmed him, he could throw a tantrum like the best of ‘em. It is so intense to have your infant scream for 30 minutes straight….multiple times a day. It was heartbreaking. And exhausting.
He also took Kyan’s mess-phobia to a whole new level! He couldn’t handle things being “out of place”, like leaves that got inside the house, or teeny-tiny pieces of fuzz that clearly shouldn’t be on the carpet. He needed his hands wiped constantly while he ate, and truly couldn’t continue unless they got cleaned. I kept hearing “just stop doing it and he’ll eventually realize it’s no big deal and he’ll eat.” Ummm, I don’t know how to explain to someone who hasn’t experienced it….and I can relate, I was one of those parents that didn’t get it when I just had Kyan. Suffice to say, that really wasn’t an option here.
And then there was the “moditating”. Moditating is a word made up by 5 year old Kyan, when he was trying to explain Asher’s behavior as “meditating” and couldn’t remember the word. And the word just stuck!
Whenever Asher is overwhelmed, over-stimulated or tired, he moditates. He rubs his lovey, Blue, usually across his lips (to the point that it regularly blisters), but often he’ll pull up his shirt or pant leg to rub Blue on his belly or legs.
He NEVER wanted his socks off, but would take them off for a few minutes here and there to rub blue on his feet. But very quickly they needed to go right back on. And then he constantly needed them “fixed”.
And when he’s moditating, he makes this moaning noise, and pretty much checks out. We can all be running around doing whatever we’re doing around him, and he will just sit there, rubbing Blue and making his moditating noise.
Then one day in music class (which was always a struggle but I kept going hoping it would get better), I had a very quick conversation that changed my life. A mom who was there for a make-up came up to me after class and said Asher reminded her of her daughter. Of course I asked in what way. We chatted for a few minutes, and then she asked if I’d heard of Sensory Processing Disorder, which at that time I hadn’t. She said I might want to look in to it, and that I should read The Out-of-Sync Child, by Carol Stock Kranowitz.
I wish I’d gotten her information so I could thank her. While it sometimes feels intrusive when other parents offer unsolicited advice or point out our children’s flaws, I am so grateful she did!
I read the book in the following 48 hours, and it became crystal clear to me that this would be the beginning of my answers. There are many variations of SPD, and of course varying degrees, and Asher’s particular challenges were with Touch & Auditory senses, and Social-Emotional sensory skills. Specifically, Sensory Modulation Disorder with Over-responsivity (really great resources available here).
The Impact of Gluten-Free, Casein Free Living
I was about to dive in to Occupational Therapy after Asher was assessed, but I decided to try this GFCF (Gluten-Free/ Casein-Free) diet for 3 weeks “just to rule it out.” Ha!
The GFCF lifestyle has been a Godsend! And still to this day, 5 months in to this journey, I am blown away by what we’ve witnessed. Our estimation is that 75% of Asher’s symptoms were COMPLETELY GONE within 1-2 weeks of going GFCF.
Our experience has me fully on the bandwagon.
So why both Gluten and Casein?
From what I understand, not to get too scientific on you, but basically the villi of the small intestine are not functioning properly in people with gluten intolerance. In fact, they’re often completely destroyed. This is a problem because these villi are necessary for the absorption of nutrients as well as certain enzymatic activity that aids in digestion. Glutein and casein leak in to the gut, undigested, and wreak havoc. The issue seems to be different than an allergy, and more about the inability of certain people to break down these proteins. Most people find their symptoms improving within 2 weeks of going GFCF, but it can take several months to several years for the villi to return to normal, and for the body to fully be absorbing nutrients properly.
For us, I was already dairy free, so shifting Asher to my dairy-free choices was easy. I was worried he wouldn’t take to them, but he’s been happily drinking Almond Milk and eating Daiya Cheese (the BEST dairy free substitute, hands down!).
And for those of you who read my last post about my detox experience, you know that I was already wondering if the reason I was feeling so much better was simple the massive increase in greens I was consuming from green smoothies, or if it could possible be from gluten. As I said, I was sure it wasn’t the gluten, but I decided to remain gluten free with Asher. The timing of his diagnosis happening right in the midst of my detox is quite serendipitous!
I’ve since tested both of us. While my “sensitivity” is clearly nothing like Asher’s, it was still clear as day. I ate gluten one night when we were out for dinner, and the following 2 days I was d-r-a-g-g-i-n-g big time. My afternoon slump returned, but more like an all-day slump, probably because I’d had it out of my system for almost 2 months at the time, so my symptoms were exacerbated.
I was a bit fearful to test Asher, but felt I should just to know for sure. For the following 3 DAYS, he woke crying through the night, had regular diarrhea and tantrumed like crazy all day. His misery was undeniable.
I quickly realized that the easiest thing would be to have a GFCF house, rather than making separate meals. My husband, Kevin, and Kyan, can both still have gluten when we go out, but I’ve cleared it all out of our home. And I have no idea if this is related, but it’s hard to think it’s not so I thought I’d share in case it helps anyone else. Kyan will be 6 in November, and has been potty trained since right when he turned 3. However, he’s had a VERY full pull-up every morning, and we’ve wondered how we’re ever going to get past this. All of his friends seemed to be sleeping through the night, sans accidents.
Well, 4 days after Kyan went gluten-free, he had his first ever dry pull-up. And EVERY SINGLE NIGHT since then he’s been dry as well. He’s had a couple of accidents, and I can link them both to times he ate a lot of gluten outside the house. Coincidence…or not?!
As for Asher, while he definitely still struggles with some things, particularly tactile things (like the fake grass at soccer!), he is a completely different kid. I do plan to start Occupational Therapy, because clearly he still struggles and I’d love to learn the tools to best support him. But honestly, we feel like the veil was lifted and we are seeing our sweet Asher for the first time! When I turn on the hair dryer, he now says “mama that’s loud.” I ask him if he wants to go to the playroom, and he says no. He definitely doesn’t want to be right next to me, but he sits on the bed and watches attentively.
And the very best news….he now LOVES to hug (and even kiss!) his friends. It absolutely melts my heart.
He still moditates quite a lot, but I take that as his internal guidance system telling him that he needs to re-charge. We all honor it, and when he’s finished, he’s ready to be present and engaged. It’s pretty amazing.
Because Asher’s results with removing gluten were so dramatic, I do wonder if he is actually Celiac. But to get the test done, he would need to be “on gluten” for 2 months. Yikes! After 1 meal on gluten, I saw more than I ever need to see again! I don’t need an official diagnosis to know beyond a shadow of a doubt that gluten and my son are like oil and water. I wouldn’t be surprised if chooses to try it sometime down the road in his desire to be “more like his friends”. We’ll cross that bridge when the time comes.
Raising Awareness of Sensory Processing Disorder
At the end of the day, all that really matters as a mama is the health and happiness of our children. I hope this post brings some awareness to an issue that I think should be at the forefront and is unfortunately barely acknowledged or even understood in the medical community….and that is the power of diet in reducing/ resolving not just SPD, but issues such as ADHD, Austism, depression, anxiety, bipolar, etc. The first answer should not be to try drugs that mask the symptoms, but in getting to the root cause and eliminating it. It may not be the easy route, but it’s the route that can heal our children, our families and I truly believe our world.
Unfortunately, SPD is still a controversial diagnosis. It is being studied more and more, and I actually just read a promising post in Huffington Post’s Healthy Living section citing the first study to show abnormalities in a different region of the brain specific to sensory processing, which would mean that SPD is in fact neurologically distinct. But in the meantime, if you go to a doctor to discuss your child’s irritability, lack of focus, intense fears and sensitivities, they tend to want to treat the symptoms individually, and often with medication! It infuriates me. So until the medical community wakes up to the power of real food, we, the passionate mamas, have to work together as advocates for our children.
So how about you? Have you had a life-changing experience from going gluten-free? Do you have a child with a neurological condition that has been helped with dietary changes? I’d love for you to share any stories or thoughts you have in the comments!
I also want to be sure to say, that while eliminating gluten and casein have been life-changing for us, I know that this is not a one-size-fits-all solution. That being said, good, clean nutrition will certainly only help to heal our children so they can thrive to their full potential.
I will be writing more about this and the things we learn and discover along the journey. Another great book I highly recommend is Cure Your Child With Food: The Hidden Connection Between Nutrition and Childhood Ailments by Kelly Dorfman.
I look forward to sharing my GFCF recipes with you, because I am turning in to quite the little chef as a result of this!