I feel compelled today to share our story of how gluten intolerance affected our family, and how the gluten free diet has helped us enjoy better health and a happier home. I also want to share hope for parents who may be dealing with unpleasant behavioral side affects in their young children, like rage for no apparent reason, lack of body control, and a mental haze that inhibits social development. More and more people are aware of gluten intolerance, thanks to major manufacturers displaying the “gluten free” stamp on their products. But most people still don’t know how to recognize the symptoms associated with gluten intolerance.
Gluten intolerance (also known as Celiac disease, which is a severe form of gluten intolerance) is an autoimmune disorder, which simply means that your immune system recognizes the gluten protein – which is in wheat, barley, and rye – as a foreign invader, and the lining of the intestine ends up being destroyed as the body attacks itself. Because of the destruction in the intestine which affects the body’s ability to absorb nutrients, many sufferers experience problems with cramping, diarrhea, constipation, weight loss, anemia, fatigue, depression, migraines, infertility, or stunted growth in children. These are some of the obvious symptoms that cause people to seek treatment and discover their gluten intolerance, but there are a whole host of neurological side effects that can be less obvious, and some people with gluten intolerance have no obvious symptoms at all. (This article is not intended to provide an in-depth medical explanation, but rather a summary of our experience. If you need more information, please seek out a medical site like celiac.org.)
When my son was a toddler, he was the sweetest, most good-natured child. He woke up in a pleasant mood, and was a delight to be around. As he approached the age of 3, the “terrible twos” set in, which we knew was normal. What’s not normal, however, is for tantrums and rage to extend to “freaky fours” and “frightening fives.” What frightened us was that my son would fly into a rage over something for no apparent reason. It was as if someone just flipped a switch, and once the switch was on, it was almost impossible to calm him down. He also had body control issues. His arms or legs would invade your personal space, and even if you brought it to his attention, it was obvious that he couldn’t help it. He also seemed to be in a fog most of the time. You could call his name and he wouldn’t answer – and I’m not talking about ignoring mom and dad, or tuning others out when deep in thought. Kids at school would say hi to him, and he wouldn’t notice. He was perpetually distracted and often disruptive in groups of kids.
As you can imagine, this led to much anxiety and questions of where to cast the blame. My parents thought it was a discipline issue, and gave us Dobson’s “Dare to Discipline.” His preschool teacher thought he had ADD, but he could concentrate for hours on some projects, and did not behave consistently from day to day (and ADD or ADHD sufferers are supposed to display the same behaviors consistently at home and school). Others threw out Aspergers as a possible explanation, but our son did not match enough of the criteria for that syndrome either. What really drove us – and his teachers – crazy was his inconsistency. He would have good days and bad days. Some days he could listen, control his body, participate in school and family life without any problems. Other days, he was destructive, angry, or just spacey. We even wondered, at one point, if he could be bi-polar because of his ups and downs.
When my son was in first grade, my husband’s sister was diagnosed as gluten intolerant. Because this is a genetic disorder, my husband’s family was encouraged to get tested. I began doing research on the internet to understand both the symptoms and treatment of gluten intolerance. In the course of my investigation, I came across a medical site that was outlining the behavioral effects caused by a child’s neurological system essentially going haywire from the autoimmune response to gluten. In this article, the doctor described how the brain in gluten sensitive kids can get overloaded and cause them to act out for no obvious reason (other than that they had a waffle for breakfast), as if someone just flipped a switch. These kids can seem moody and cranky because they just don’t feel good, even though they can’t tell you why. The symptoms can be misdiagnosed as ADD and mimic those of autism because the same neurological problem that makes them cranky, also makes it difficult to concentrate. The symptoms often come and go, and the neurological symptoms can be present even if no gastrointestinal symptoms are present.
As you can imagine, I nearly cried as I read that article. The doctor was describing my son. Could it be that my sweet little boy was struggling against his own body that was sabotaging him? We had our son tested immediately, and got his diagnosis one week before Christmas (which is not the best time to think about giving up your favorite breads, cookies, and desserts – but more on that later). We decided to wait until the day after Christmas to eliminate gluten from his diet, which gave me time to undergo a crash course on how to completely overhaul our diet, and took some of the holiday pressure off. I cried a lot of tears during that time. Some were from sadness, as I grieved the loss of a “normal” childhood filled with pizza parties and birthday cupcakes. Some were tears of relief that there was something we could finally do to help him. And some were tears of joy, as I thanked God for his providence that brought me together with a dear friend 16 years earlier, whose family was also in their first year of dealing with gluten intolerance, and who helped me get through those first few difficult months.
Almost immediately after eliminating gluten from his diet, we noticed behavior changes in my son. I used to dread sitting by him on the couch during a family movie because he would rock back and put his legs in the air, and flop all over the place no matter how many times we told him to sit still. Two days after eliminating gluten, we started watching the 3 1/2 – 4-hr. movies in the “Lord of the Rings” trilogy. To our amazement, my son sat still and in control of his body the whole time. The rage episodes disappeared. I asked his teacher a few months later if he was doing any better at school, and she said the biggest change she’d observed is that he suddenly seemed to notice the kids around him, and was becoming more social. We noticed, too, that what we now refer to as the “gluten fog” had lifted. We could give him two or three-step instructions, and he could now follow through without us needing to check up on him.
Fast forward two years later to today, and I’m pleased to tell you that I have my sweet, good-natured little boy back. Yes, he has some quirks like all of us do, but the extremes are gone. He is a delight to be with, and I believe that the sacrifices we make to be gluten free are a small price to pay for helping my little boy become the wonderful person God created him to be. My husband and daughter also tested positive for gluten intolerance, and even though the results aren’t quite as dramatic, we’ve still noticed a difference. My husband used to often complain that he just couldn’t seem to concentrate, which we now attribute to the “gluten fog.” He hasn’t made that complaint since going off of gluten. He also was finally able to lose weight, after trying without success for years, and you can read more about his story here.
Life Without Gluten
The gluten free lifestyle is not easy, but it’s also not the end of the world. In fact, if you have a child with behavioral issues caused by an autoimmune response to gluten, it can be an opportunity to uncover a wonderful treasure that’s been trapped inside a destructive host. If you’re new to the gluten free lifestyle, I’ve posted my Gluten Free Survival Guide on the tab above just for you. Every recipe on this site is gluten free, including muffins and desserts! I’ve also posted my gluten free flour blend that has allowed me to make those favorite Christmas goodies we thought we’d never have again (and they taste exactly the same). There’s a reason why this article is categorized as “joyful family” and my gluten free recipes are under “joyful food.” Being gluten free has brought more joy to my family than any pizza or cookie ever could.
2013 Update: I’m so moved by the responses I’ve received from so many of you. This post receives more views daily than any other, and I believe it’s because there’s so little information out there to guide parents who suspect there’s something wrong with their child’s diet. I’ve recently had to hunt down information on the internet and diagnose yet another health issue related to diet for my son (which was eventually confirmed by his doctor), and the experience has given me fresh motivation to reach out to my readers who are on this difficult journey. I’ve also added a series of recipes called, “Gluten Free Kid Favorites,” that I hope will encourage you as you try to find a “new normal’ for your family.
Check out these yummy recipes:
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