by Max Domi
About a year after I was diagnosed, my dad’s habit of constantly checking up on me paid off in a big way.
I was home with my sisters one night, and my mom was out. My older sister, Carlin, was fourteen years old at the time, but Mom still had our babysitter Stacey come over just for some peace of mind.
I had been training at a park all day with a close friend of mine, John Doyle, and just after I came home, my mom gave me a big plate of pasta and a glass of chocolate milk. Before I ate anything, we counted the carbs to make sure we had it right.
Knowing I had all the food I needed and that I was all set up, my mom headed out. But after she left, I decided I wasn’t hungry, so I only ate half the food she’d put out for me. The problem was that I still gave myself the same amount of insulin as if I had eaten all of it. I didn’t realize it, but I’d just given myself way too much insulin, which would cause my blood sugar levels to go low.
After dinner, I went to go lie on the couch. Carlin, Avery, and Stacey assumed I was resting because I had been training all day.
Not long afterward, my dad called to talk to me. Stacey told him that I was sleeping.
My dad got nervous and told Stacey and my sisters to check on me right away.
They didn’t know what the big deal was, but when Carlin tried to shake me awake, I didn’t budge. They tried calling my name, clapping, and tugging my shoulders, but nothing worked—I just lay there semi-conscious.
My younger sister, Avery, started crying and Stacey, realizing that something was very wrong, called 911 and asked for an ambulance to come over immediately.
Meanwhile, Carlin understood that I was low and that I needed something to get my blood sugar up, so she ran to the fridge and got some juice, which she tried to get me to sip.
My dad was on the phone the whole time, asking what was happening. I slowly started to come to, and when I did, the first thing I saw was Carlin trying to give me a juice box. I was still kind of out of it, so I grabbed the juice box and whipped it across the room.
Carlin didn’t give up, though. She tried to make me test my blood. I could barely hear anything—my brain was fuzzy and everything sounded like I was underwater—but I saw my test kit was on the table next to me. I grabbed it and threw it across the room, too, where it broke into pieces.
At that point, Carlin went to our neighbors across the street, Larry and Suzanne Ross, the couple with the two young boys who had diabetes. They ran across and took over the situation.
By the time the ambulance arrived, I was a little more with it and was feeling more like myself. I had been so low that I didn’t remember anything that had happened. When Carlin told me about how I had thrown the juice and the glucose meter across the room, I was shocked.
The paramedics checked me out to make sure I was okay. Luckily, my blood sugar levels were stable and it was safe for me to stay at home. But if my dad hadn’t called to see how I was feeling, my blood sugar would have kept dropping. It was a really scary incident, but we were grateful, because it could have been worse. My sister Carlin was a real hero to me that day.
That was the first time it hit home to everyone in our family that my diabetes was a potentially life-threatening disease. We had heard about scenarios exactly like this in our training at SickKids. But, as with everything else about this disease, we were learning that until you experience what it is really like, you don’t understand how bad it can be.
* * *
After my diagnosis, I had to return to the diabetes clinic at the hospital every three months for blood tests and talks with my doctor and nurses. It was routine procedure. They just wanted to see how things were going and make sure I was staying healthy. They would do blood work and review my blood sugar readings to evaluate a number of things, one of which was my A1C, or a three-month average of my glucose levels. The finger-stick tests I did multiple times each day let me know how my blood sugar levels are in real time, but the A1C gave the doctors an overall picture of my diabetes management.
The first few times, the appointments were nerve-racking. I would walk in hoping that nothing else would be wrong. After the first few meetings went by without a problem, the check-ins started to feel like a formality. Normally, I was in and out of them pretty quickly.
“Your blood sugar levels are a bit all over the place, Max,” the doctor said.
“I know.”
“Have you been testing your blood and counting carbs, like we talked about?’
“I have,” I said. “It’s just hard to manage it with all of the hockey I’m playing.”
“I know it’s hard. But it’s also important.”
Everyone at SickKids was great, but I was still young, and there were days when I wished that my appointments felt like less of a lecture. The meetings were starting to look as though they’d just be another one of those things I had to get used to, like testing my blood or counting the carbohydrates in my meals. Of course, it was then, just as I was starting to relax, that I was hit with another bombshell.
It was two years after I was initially diagnosed, and I was having trouble stabilizing my blood sugar. That wasn’t always my fault, but it seemed to be an ongoing problem, even when I was doing everything right. My mom had read that it can be common for people with type 1 diabetes to also have celiac disease, another autoimmune condition. When we were at the clinic for one of my regular checkups, she discussed that possibility with the doctor, and he agreed that it could be the issue causing my unstable blood sugar levels. He ordered some special blood work to determine if there might be evidence of celiac. Great, I thought, when I heard the news, more blood work.
That was just the first step, though. When the initial blood work came back, it showed that there was a likelihood of celiac disease. When he saw that, the doctor ordered a scope test to confirm the diagnosis.
I didn’t like the sound of that. The doctor assured me that it was a short procedure—called an endoscopy—that would allow him to see what was going on inside my gastrointestinal tract. He’d remove a small piece of tissue from the tract, which they would test to confirm whether or not I had celiac disease.
When I arrived in the examination room on the day of the procedure, the first thing I saw was a thin tube attached to what looked like a trigger.
“Don’t worry, Max,” the doctor told me. “This tube has a camera at the end of it. I’m going to use it to take a look down your throat, all the way to your stomach and intestines. It won’t hurt. I will be putting you to sleep for a short time, and you won’t feel a thing.”
After the procedure, the doctor shared the results with us.
“Mrs. Domi, Max’s esophagus is covered in ulcers. Has Max ever complained about his throat being sore?”
“No, never!” my mom said. “Max, you would have said something if you were in pain, right?”
“Of course,” I lied. I had sometimes had trouble eating certain foods—stomach cramps and that sort of thing—but I’d figured it was just from the insulin or my blood sugar levels being all over the map, so I’d kept quiet.
“That’s surprising, because this might be the worst case I’ve ever seen. It’s clear—Max has celiac disease. His body cannot tolerate gluten, and it’s causing damage to his intestines, which is why he can’t digest his food properly. That’s what would have made it so difficult to control your blood sugar levels, Max.”
“What does that mean?” I asked.
The doctor smiled. “We will have to go through the foods you usually have—I’m afraid you won’t be able to eat some of them anymore.”
I started listing some of my favorite foods—pasta, bread, cookies—and my heart sank as the doctor said no to almost all of them. I was crushed.
“There is good news, though, Max,” the doctor said.
“What’s that?” I asked. I found it hard to believe.
“There are many gluten-free versions of the foods you like. So you’ll still be able to eat a lot of your favorites.”
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nbsp; The news helped a bit, but I was still bummed. After home and the rink, the hospital was becoming the place where I spent most of my time. It had been exhausting learning how to live with diabetes, and now that I had celiac disease to figure out, it felt like I was right back to square one. I didn’t want to be a sick kid; I just wanted to be a kid.
Before we left the hospital, I asked my mom if I could go get a snack while she talked more with the doctors. I went over to the Tim Hortons nearby, and I bought a ten-pack of chocolate Timbits—my favorites. I could eat an entire pack and still want more. I figured they would cheer me up.
I ate the pack of Timbits, met up with my mom, and headed home. An hour later, I felt horrible.
“Max, what’s wrong? What did you eat earlier?”
“I got a pack of Timbits,” I admitted quietly.
That was the wrong answer. My mom dropped the hammer.
“Max, what were you thinking? You heard what the doctor said. I know it’s hard, but you can’t do things like that. Your health is too important.”
From that day forward, I was on a full-blown gluten-free diet. The first few months were tough. Back then, not many food items were listed as gluten-free, and there were fewer options in general. In a lot of ways, learning how to deal with my celiac disease was harder for me and my family to figure out than diabetes.
Everything my parents knew about shopping for food and cooking had to completely change. After my diagnosis, my mom would spend more than three hours shopping for food. She would read the info on the back of every package, and if the ingredients weren’t clear, she would call the 1-800 company phone number that was listed and ask them about the gluten content. Once we figured out what packaged food I could have, we were fine—we just bought the same ketchup or barbecue sauce over and over. But there was a huge learning curve at the beginning.
My mom even took lessons that my dad organized with a chef so that she could learn how to cook gluten-free foods. Some lunch meat from the grocery store contained gluten in its seasonings. To avoid that, she would cook a roast beef or a turkey and then slice it up into lunch meat with one of those machines you see at the deli.
I could control what I ate at home, but going out to restaurants was harder. I could no longer eat anything from Tim Horton’s the way Rory and I used to devour donuts and butter-covered bagels. I’d learned my lesson from the Timbits, so from that point on it was just hot chocolate for me.
During hockey tournaments, the team would usually go out together for a big meal before the first game. The guys around me would be ordering pasta and garlic bread. Their food would arrive on the table, and my mouth would water at the smell. Then a chicken Caesar salad (no croutons) would appear in front of me, and I’d come crashing back to earth. A hungry fourteen-year-old feels like he can eat anything, so it took a while for me to get past jealously looking at everyone’s meals.
Although I missed Tim Hortons and McDonald’s and all that other food that kids love, the good news was that my overall health improved and my blood sugar numbers stabilized. Before my celiac disease diagnosis, my carb-counting had been all off. My parents or I would look at my plate and check the carbs on it, and then I’d give myself an insulin dosage based on that. But because of the celiac disease, my body hadn’t been absorbing the nutrients properly, so no matter how carefully we counted my carbs, it was always slightly off. Now that I was all-in on the gluten-free diet, my diabetes became more manageable.
The spring after I was diagnosed with celiac disease, I went on a school camping trip. We were sleeping in big tents on platforms out in the woods—there were at least ten of us inside each one. Once we were all packed in with our sleeping bags and backpacks, there wasn’t a lot of room to move around. I was having trouble finding a place for my bag—it had all of my diabetes supplies, so it was way bigger than everyone else’s. But I’d learned that was no excuse not to have those supplies with me.
I woke up in the middle of the night. My blood sugar felt off, and I had to go pee. It was pitch-black, but I desperately had to get outside. I tiptoed over my sleeping classmates, trying not to step on anyone, which was hard, given how uncoordinated I could be when I was low. Luckily, I managed to make it outside and back without any problem. When I got back in my sleeping bag, I knew I had to test my blood.
I remembered that I only had one strip left in my test kit. I had more in my bag on the other side of the tent, but I had figured I would just refill my test kit in the morning. I tried to quietly test my blood in the dark, but I couldn’t manage to squeeze out enough blood from my fingertip for the test strip to register it. When that happens, the glucose meter cancels the test. I quietly kicked myself for not having replaced my test strips earlier. I crept over to my bag and tried to find my replacements, but I was having no luck, and every rustle of the zipper sounded as though it would wake up the entire tent. Eventually, I gave up and went back to my sleeping bag, crushed a juice box just to be safe, and lay awake the rest of the night, waiting for the sun to come up.
A younger me might have just shrugged the whole thing off and moved on, hoping for the best. But I knew better. The next day, I vowed to make sure that I would stay on top of everything and ensure I had the supplies I needed. I would make sure to test my blood when it was light out, and before I went to bed I put my entire diabetes bag full of supplies beside me. Taken on their own, each of those little details didn’t seem like much, but paying attention to them meant the second, third, and fourth nights in the tent were a walk in the park for me.
On the bus ride home, I felt grown up. I had encountered a problem caused by my diabetes, but instead of ignoring it, I’d figured out a way to take care of myself. I felt proud. Maybe I’m finally learning how to live with this disease, I thought.
There’s no doubt I put my parents through a lot of stress when I was younger—it took me a long time to learn that it was okay to ask for help. I wanted to be a normal student and teammate. I learned the hard way that there’s nothing wrong with testing my blood in front of the guys in the dressing room, or telling a coach that I might need a break during practice, or packing extra apple juice if I was staying over at a friend’s house.
I just wanted to play road hockey, go camping, and hang out with my friends. But, unlike all my buddies, unless I was prepared for whatever life threw at me, there would be consequences. I wasn’t like everyone else—and I was finally coming to accept that.
4 KEEP THINGS IN PERSPECTIVE
September 2010 brought with it most of the usual signs that fall had arrived—school started up again, the days were getting shorter, and my hockey season with the Don Mills Flyers began. But there was something different this year. Because this was my Ontario Hockey League (OHL) draft year.
It was the same concept as going into the NHL draft. It was the last year of minor hockey, and every game had scouts in attendance who were watching your every move. Everyone on my team wanted to play at the next level, so, knowing that every showcase tournament we were in was filled with scouts, the pressure was on to perform at every game.
That pressure just added to the demands I was already juggling from my diabetes. By this point I was well used to the day-to-day life of a person with type 1 diabetes. I had my routine, and every day I was learning to read my body’s signs about how it was feeling. But there were still daily frustrations.
In one class early that year, a student brought in cupcakes for his birthday. Treats were being passed around the room, and I really wanted to have one, but they weren’t gluten-free.
“Max,” the teacher said quietly, trying and failing not to draw attention to me. “I’m sorry there’s sugar in these cupcakes.”
“I’m not going to have one,” I said. “But it’s not the sugar that’s the problem, it’s the gluten.”
The teacher smiled knowingly, seemingly missing the point. “I understand what you’re going through—my uncle has diabetes. He hated having to give up birthday cake.”
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sp; I shifted my weight, trying to avoid the looks of my classmates. “Actually, I have type 1 diabetes, so I can still have sugar.”
The teacher looked confused. “I see. Well, if you need anything, let me know.”
People seemed to think that type 1 diabetes was like a peanut allergy, and that you had to avoid sugar entirely. More and more, I was realizing that most people didn’t understand the difference between type 1 and type 2 diabetes. Type 1—what I have—is an autoimmune disease that’s often inherited, and there is no cure for it. The cells in my pancreas that are supposed to make insulin—called beta cells—can’t do their job because my body’s immune system destroyed them. Because of that, my body creates zero insulin on its own. So I have to provide insulin from the outside, instead of my body releasing it internally. For people who don’t have diabetes, their normal beta cells are sensing their sugar levels every minute. In my case, I have to poke my finger for a drop of blood to measure what my sugar levels are and where they are going.
These days, people with diabetes can wear a continuous glucose monitor that makes it easier to know where their blood sugar level is at all times. But giving insulin still needs to be done by the person, either with injections or through an insulin pump. As a person with type 1 diabetes, I can still have sugar. But if I don’t eat the right foods or stay on top of my insulin, my life could be in jeopardy. I have to constantly balance my blood sugar so that it doesn’t get too high or too low.
Type 2 diabetes is a very different disease. With type 2 diabetes, a person’s body makes some insulin, but it’s not enough or their body doesn’t respond to it properly, so the insulin that their body makes isn’t as effective as it should be. Type 2 diabetes is not an autoimmune disease like type 1. Type 2 diabetes is more common in people who are inactive, overweight, and older, or who come from certain high-risk groups. However, it can also happen in children. People with type 2 diabetes also have to monitor their blood sugar levels and make sure they don’t get too high. Some people with type 2 diabetes can regulate their disease through exercise and a healthy diet, but people with advanced type 2 diabetes usually have to take oral or injectable medications, including insulin in some cases. And no matter what type of diabetes a person has, controlling the blood glucose levels and having a healthy lifestyle are incredibly important.