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 gluten free(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!

http://www.dreamstime.com/-image22808594The 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!

17 people like this post.
Related Posts with Thumbnails
Twitter Digg Delicious Stumbleupon Technorati Facebook

19 Responses to “Jumping on the Gluten-free Bandwagon for our Son with Sensory Processing Disorder”

  1. Really loved this post and story about going gluten free! Very inspiring to me in many ways. As far as I know my kids do not have any of these symptoms to need to go gluten free but it reminds me to stay in tune. I love how you are so in tune with your kids. It inspires me to try to do the same instead of being so demanding that they just fix what frustrations and issues they have. Also reminds me how powerful and important a real food diet is! Thanks for sharing your story!

    [Reply]

    bethallen Reply:

    Thanks so much, Lauren! Even without having this particular experience with your kids, you are so right, there is a universal theme about helping our children heal and thrive by tuning in. I can relate to getting frustrating and sometimes having unrealistic expectations, but I always try to put myself in their shoes, and imagine how it would feel to hear whatever I’m saying. When I operate from that place, I can see how loved and supported my boys feel! A lifelong practice, indeed. :) Thanks for stopping by, and I’m glad to hear you were inspired!

    [Reply]

  2. Beth,
    Thank you for such a wonderful post. It made me realize that our diet may be affecting our son in a negative way. Your post literally made me start researching myself and I’m going to try the GF/CF diet as well. I am so excited and can’t wait to share with you his progress!

    [Reply]

    bethallen Reply:

    You’re welcome, Kara. I look forward to hearing about your progress with your son, and really hope that it helps! Stop back and let us know in a month or so. As I said, it’s not always easy, especially in the beginning, but if it helps, it is obviously worth it!

    [Reply]

  3. A mother’s intuition is such a powerful thing. I’m so glad you are finding success with Asher on this diet, and that you feel that you can now see Asher’s full personality. It’s such a difficult diet for toddlers, but even more so as they grow up and are around friends. My son is also gluten free, and I’m glad to hear stories from other families who are dealing with the same issues. With more and more people discovering the effect gluten can have on the brain, I hope it becomes easier and more culturally acceptable to eat gluten free.

    [Reply]

    bethallen Reply:

    Thanks so much, Ashley. Yes, I know there will come a day where he says “i want that _____ (pizza, birthday cake, etc.)” and I’ll feel he’s old enough to try it and see for himself. I’ll prepare him that it will make him feel bad, but I know that doesn’t always register with a 5/6 year old! I’ll hold off as long as possible, but I know that day will likely come. I have heard that unlike other childhood food allergies, gluten is not something that anyone is likely to grow out of. I am still learning a lot, but 5 months in, it really has gotten SO much easier. And yes, it is becoming more culturally acceptable. Slowly but surely. I have learned a lot about gluten’s effect on the body, but am just beginning to learn about the effects on the brain. Really heartbreaking what’s happened to our food industry. Yuck. Thanks for sharing your thoughts!

    [Reply]

  4. It’s really a powerful thing that you write.It reminds me how powerful and important a real food diet is! Thanks for sharing your story! Thank you for the post.

    [Reply]

    bethallen Reply:

    Thank you very much. Real food is indeed powerful…it never ceases to amaze me how complex we make things when the answer is often the most simplest and basic idea! Thanks for visiting.

    [Reply]

  5. I love what you wrote, so THANK YOU! I have been debating removing gluten from our diet to test my daughter’s reactions and temperament. She also has SPD. Here is my concern: she is orally defensive so a HUGE part of her struggles are eating related. She eats just about nothing and I’m concerned that if I remove gluten, there will be nothing left that she will consume. Any suggestions?

    [Reply]

    bethallen Reply:

    You are so welcome, Courtney! This is why I shared my story. I would definitely suggest trying it for 30 days at least. We saw a dramatic difference very quickly, but I have heard others say it was a slower transition over a month or 2. And continuing for much longer than that. I’m curious, what types of food DOES your daughter eat? I can’t say much without know that, but if it’s bread-y products, there are GF options (though pricey), and of course baking yourself, which we found to be the best option. And I don’t know if this is related, but Asher is way more willing to try new things since we removed the gluten.

    Knowing what gluten does to people who have intolerances provides a compelling reason to try it. If you can begin her journey of healing her gut, regardless of what she’s eating, wouldn’t it be worth it if her symptoms lessened, or possibly got much better? I wish you the best of luck, and if you’d like to chat more, you can send a message on my facebook page. It’s always great to connect with others who can relate.

    [Reply]

  6. My daughter is 2 and not diagnosed with SPD YET, but we are seeing more seeking in the vestibular areas and oral defensiveness. She also had major gross motor delays (didn’t walk until 21 months) and fine motor (isn’t chewing still). Also, we have thrown around the idea of dyspraxia and apraxia since she isn’t talking yet. While waiting for answers , I think I would like to give Gluten Free and Dairy Free a try. My questions follows the above comment. With her oral defensiveness, she only eats the following foods:

    Apple sauce, pudding, toast, Mac and cheese, spaghetti, mashed potatoes, avacado, and milk.

    Are there reasonable GFDF options for those foods?

    Thanks for your post! I’m happy for the success you have seen!

    [Reply]

    bethallen Reply:

    Hi Brittaney, I am so sorry your daughter is struggling, but sounds like she has a great mama working to find the best solutions so she can thrive. :) As for GFCF options to what she’s willing to eat…YES! GF breads are getting better…we like Udi’s Millet Chia and Omega Flax, and also Canyon Bakehouse. There are many GF pastas available, my favorite brand is Tinkyada. They make all the different shapes, and we feel they have the best texture/ taste and hold up the best. The only Casein-free cheese brand is called Daiya. They sell it in blocks (although the texture is soft) and also shredded. You could melt it with noodles for mac n cheese, or you could google vegan cheese sauce and she if she likes that. We make one with cashews, olive oil, nutritional yeast, ACV, GF tamari and then whatever spices you’d like (garlic, onion, paprika). Or sometimes instead of cashews I use either almond or coconut milk, and tahini as the base and the nutritional yeast and spices.

    What I’ve discovered is, pretty much anything you’re looking to turn GF or CF, you can google it and find tons of options! Seeing that your daughter likes avocado and pudding, you should check out my post – Chocolate Chia Avocado Pudding. My kids LOVE it! Lastly I’ll say, while there are lots of GF goods out there now, I have increasingly shifted to making everything from scratch. GF does NOT mean healthy…processed still means processed and there is often lots of sugar added to GF foods. Reading labels is always important. I should really write a post about all of this! ;) Good luck with this transition, Brittaney, and feel free to contact me here on my blog or on FB if I can help in any way!

    [Reply]

    Brittaney Reply:

    Thanks so much! I appreciate your help!!! I think that because her diet is limited it might be an advantage because I can just figure out those few things and then work our way up from there :) I will check out the recipie for sure!

    [Reply]

  7. Your story give away a light of hope. Thank you.

    [Reply]

    bethallen Reply:

    You’re welcome, I’m happy to hear that!

    [Reply]

  8. I had no idea! I have a friend who has a 7 yo with SPD similar to Asher, she introduced me to SPD. I have suspected for quite some time that Annika is on the hypo-side for several months now. I have a feeling that a percentage of it come from a combination of bad hearing (ear tubes since 1yo) and bad vision (I finally figured that out at 3yo)- so she extremely craves the sensory processing that she WAS getting sufficiently. At almost 4 years old, she still stuffs her mouth full of things that a toddler would, llicks all kinds of things at home and in public, watches TV and plays on her ipad while hanging upside down off the couch, loves to jump (in fact, she would rather jump to get somewhere than walk, or even run). So far I’m thankful that the hypo-ness hasn’t really affected her socially- other than just being a bit “weird”- but I do worry that the “excitement” that she craves could magnify into more as she gets older.

    [Reply]

    bethallen Reply:

    Wow Staci, I had no idea either! I guess it’s been a while since we caught up! ;) Sounds like Annika is definitely a sensory craver (the opposite of Asher). Have you read the Out of Sync Child? I highly recommend it. It really made things make so much sense, as well as giving ideas on how to support him. Glad to hear it’s not affecting her socially. We’ll have to talk more!

    [Reply]

Trackbacks/Pingbacks

  1. Gluten Free Recipes and Dinner Menu || Sensory Processing Disorder - 13. Aug, 2013

    […] Beth Allen says this in her post, Jumping on the Gluten-Free Bandwagon for Our Son with Sensory Processing Disorder: […]

  2. Are You Ready to Nourish Your Life, Inside & Out? - 14. Sep, 2013

    […] found so many amazing, delicious and deeply nourishing recipes on blogs, especially since starting my Gluten-free journey for my son 7 months ago. I am so grateful for the hours of research and experimentation that […]

Leave a Reply

CommentLuv badge

css.phpDisclosure of Material Connection: Some of the links in the post above are “affiliate links.” This means if you click on the link and purchase the item, I will receive an affiliate commission. Regardless, I only recommend products or services I use personally and believe will add value to my readers. I am disclosing this in accordance with the Federal Trade Commission’s 16 CFR, Part 255: “Guides Concerning the Use of Endorsements and Testimonials in Advertising.”