When my son, Henry, and his twin brother were 14 months old, the tantrums began. It was a little sooner than "average" but I assumed that was just due to having 3 boys ages 3 and under. Less Mommy to go around! Henry is an emotional little boy. When he was born, he cried the loudest scream that anyone had ever heard. When he was mad, everyone on the block knew it! He is also incredibly sweet and sensitive. If someone cries, he cries too. If someone is hurt, he is there to comfort. He adores cats, dogs, babies, baby dolls, and stuffed animals. He even tucks his animals in each night with a kiss and a sip of water. He was already developing empathy at the age of 2. His sweetness and kind spirit truly make him one in a million. When his tantrums began to escalate, I assumed that it was just because he was my emotional child.
However, as time went on, it was clear to me that the tantrums were abnormal. My google research had me convinced and terrified that he had psychological issues, bipolar, even schizophrenia. We were having many days with three 2-hour tantrums. It had become the norm. Nothing could stop his screaming. Nothing. It was very clear to me that he had no control over what was happening in his body. I would ask him why he was so upset. He would sob with his head in his hands and say "I don't know". I believed him. He really didn't know. I brought this up at a checkup with his pediatrician. She stared at my blankly and shrugged it off as him just being a toddler. I pushed for a vitamin deficiency test because I knew deficiencies could cause abnormal tantrums. She talked me out of it because he appeared to be healthy. I knew deep down that she was wrong. My pediatrician was useless to me in this situation.
Leaving our house became nearly impossible. Our family's quality of life was plummeting because we had to endure hours of screaming, toys flying through the air, biting, hitting and pictures getting knocked off the wall. My husband and I were both punched in the face a few times. I called these his "episodes". They were psychotic. I felt like I was dealing with a mental patient. Although impossible, he needed to be restrained for his own protection sometimes. I would cry in desperation. It wasn't really because of the insanity of our household. I knew something was wrong with my child and I couldn't fix it. He needed tests, but which tests?? I researched every possible mental disturbance that could cause this and nothing quite fit. His normal personality was very laid back. He was developing normally. He had a strong immune system and no other health issues. I was just doing my best to weather the storm and hope that it would get better. I continued to research but I had no answers. All I had was my mother's intuition telling me that something was wrong and he needed me to help.
At long last, I started to unravel the mystery. Although I don't like to medicate my children, I would give Henry ibuprofen when the tantrums were extreme. Within 10 - 15 minutes, his tantrum would always stop. He would snap out of it completely. It happened too many times to be a coincidence. This was my biggest clue. Something was causing him pain or inflammation. I had no doubt in my mind at that point.
My first thought was gluten. Around this time I read a mother's blog who had my same issue with her little girl. She removed gluten and got her child back. I started researching and found tho same story from other parents. I cleared the pantry of all gluten as an experiment. Within 48 hours, we saw a positive change in him. Within 2 weeks, things were 90% better. I will never forget when his swim teacher asked me "Who is this new child???"
While he was 90% better, that wasn't good enough. While the tantrums were much less frequent, he would still have some episodes that were not normal. Since his reaction to gluten was so strong, I suspected Celiac Disease instead of gluten intolerance. I asked his pediatrician to test and she did. It was negative. I was shocked by the result but accepted it. However, I was still in search of why we would still have fits of rage. I reintroduced gluten in small amounts and the result was always horrendous tantrums. I should have never even tried it, but I still had my doubts that gluten could cause such an extreme reaction. Its hard to believe!
A friend recommended that I see a local doctor who specialized in nutrition. He told me that the test that the pediatrician gave Henry would not be reliable since he was already gluten free. He instead recommended a genetic test because he also suspected Celiac. To have Celiac, you need specific genes. Gluten is the trigger for this autoimmune disease. The results of this test showed that he had the 2 main Celiac genes (his brothers do as well). This puts them at a 16x higher risk than the rest of the general population. That combined with his reaction to gluten landed him a Celiac diagnosis. To cover all bases, I saw a second integrative doctor who confirmed the diagnosis. We were indeed dealing with Celiac Disease.
The nutritionist also encouraged me to do an allergy blood test at Any Lab Test now through Meridian Valley Labs. This was a superior test to what an allergist would give him. It tested for multiple kinds of allergic reactions for 190 foods. I was doubtful. Food allergies? I was uneducated about food allergies. He didn't get hives. He never had breathing issues. I had no idea that allergies and intolerances could present themselves in many different ways. Finally, I took the test because I had nothing to lose. As I waited for the results, I kept a food journal and started becoming suspicious of eggs, dairy, and soy.
When the results came back in, I was shocked. 17 food allergies total including beef, eggs, casein/dairy, chili powder, garlic (his highest!) and coriander. There is a theory that when you have celiac (and the leaky gut that accompanies it), food particles enter the bloodstream and your body makes antibodies to fight these "invaders". My nutritionist told me to remove these foods for 3 months and then reintroduce them one at a time to look for reactions. While its true that we may have some false positives on the test, I have observed strong behavioral reactions to garlic and beef in particular and these reactions last for days!!!
I removed these foods about a month ago. It has certainly been a difficult lifestyle change, but Henry is 100% better. Any tantrum he has is normal and thankfully rare. He has control. Most importantly, he no longer hurts.
It has been surreal to witness food having such an impact on the brain. I can honestly say that I wouldn't believe it if I didn't see it firsthand. Friends and family didn't seem to really understand what was happening and assumed we were exaggerating the situation. There is a lot of skepticism behind eating gluten free. I can tell you that not only has it changed Henry's life completely, but my brain works better without gluten too! Although eating gluten is detrimental to a Celiac, I truly believe that it is not good for anyone.
The experience changed the way I look at food. Food is powerful. Every food that goes in your body is either helping it or hurting it. Through all of my research, I can tell you that there are many common behavioral issues and conditions that can be FIXED with dietary changes. For this reason, I am switching to a pediatrician that focuses on causes of illness and nutrition, instead of just prescribing a pill to treat the symptoms. If I wouldn't have figured out the cause of his problems, a doctor would have eventually labeled him and put him on drugs. I have no doubt in my mind. Doctors should search for the cause of symptoms, test appropriately, address diet and potential intolerances and LISTEN to the parents. The children in this country are facing terrible health problems and I can promise you that this is one of the many reasons. If your doctor doesn't take your concerns seriously and isn't educated about nutrition, move on. FYI, a year after requesting the vitamin deficiency test for Henry, I had one done for him on my own. There were 4 deficiencies that we had to address. A parent must always question their doctors. It is our ultimate responsibility to keep our children healthy. Never entrust another human to exclusively do that.
The biggest point that I wanted to drive home to parents is that there are many types of allergic reactions and they present themselves in many ways, not just hives or anaphylaxis. If your child has issues with aggression, focus, severe mood swings, hyperactivity, etc, get the right tests done and start experimenting. It could change their life and you have nothing to lose. In fact, its your duty to do so as a parent.
Although we can't really go to dinner anymore or eat whatever we want, our entire family is healthier because of this experience. And I have my sweet angel back.
