12-year old Emily Steadman has been diagnosed with celiac disease and diabetes
Troy Media - by Barbara Webb
When a family has a shelf in the kitchen with a sign that reads, “Beware Gluten!,” you know they must take eating food seriously.
Twelve-year-old Emily Steadman was diagnosed with both celiac disease and Type 1 diabetes. She calls herself a “Diabeliac.”
“I was having really bad stomach aches,” she said. “It started when I was seven. I felt really terrible and when I had some tests and an endoscopy, they found out that I had celiac disease. The doctor told us that we had to go shopping to buy new food. He gave us a whole list of what I couldn’t have. And it was kind-of a shocker. When we came home Mom cleaned out all the cupboards and the fridge and wiped everything down.”
Major lifestyle changes
That was in 2008. Her parents, Leasa and Mike Steadman of Dundas Ontario, had to make major lifestyle changes to ensure their daughter stays alive.
Celiac disease is an autoimmune disorder in which the small intestine becomes damaged from ingesting gluten. Gluten is a protein found in grains such as wheat, rye, barley and some oats. The body becomes incapable of absorbing the nutrients – such as protein, fat, carbohydrates, vitamins and minerals – needed to survive.
“Luckily,” said Leasa, “I had done all kinds of strange eating in the past and knew of all sorts of things at the health food store that most people wouldn’t so it wasn’t such a shock.”
Though she was aware of gluten-free foods, the transition was still a difficult one.
“Everything that you are used to eating has to be put under a microscope,” she said. “They tell you the rest of the
“It was a wake-up call, definitely,” said Emily.
Label reading to avoid gluten bi-products is essential for a celiac. Emily can’t have any trace of gluten in her food. “We can’t share the cutting board, we can’t share toasters – we had two, but got rid of the gluten toaster,” said Leasa.
Cross-contamination is a major concern. The Canadian Celiac Association provides a list of things to be aware of,
from crumbs, to utensils and even the air you breath. “You really have to reorganize your kitchen, think about all of your meals,” said Leasa.
And then there is finding good-tasting products. “I can’t tell you how many hamburger buns we’ve tried. We’d have high hopes and we’d bite into it and all of our saliva would get sucked out of our mouths. We’d take the patty off and eat it with a knife and fork. We found a recipe and we make our own now, but when we want hamburgers we have to plan three hours ahead.”
Two years later came another “wake-up call” – Emily was diagnosed with Type 1 diabetes.
“I had a worse time (with the diabetes), because it made me feel like I couldn’t do anything,” said Emily. “I started feeling really tired in ballet class. It was like nothing would work anymore. I couldn’t raise my leg as high as it used to go and I would be really thirsty. I would come home and drink litres of milk and I would fall asleep in the weirdest places.”
Leasa, a professor at Sheridan Institute of Technology and Advanced Studies, had done her research and she knew that Type 1 diabetes was the likely diagnosis. “Even then I didn’t know what it meant,” she said.
According to the Canadian Diabetes Association, diabetes occurs when glucose builds up in your blood instead of being used for energy. Insulin, a hormone the pancreas produces, is needed to turn the sugar into energy. Over time, high blood glucose levels can cause illnesses such as blindness, heart disease and kidney problems, to name a few.
For Type 2 diabetics, maintaining healthy eating habits, an active lifestyle, and taking medication can assist with insulin production and keep the symptoms under control.
Type 1 diabetes, however, is another autoimmune disorder in which the body’s defenses attack the insulin producing hormones. A more regimented lifestyle is required to survive.
In addition to ensuring a 100 per cent gluten-free diet, Emily must calculate the carbohydrates in everything she eats. Portion sizing is essential.
Blood sugar tests before every meal
“Now Emily has to test her blood sugar before every meal, before bed (and) every time she feels odd,” said Leasa. “She can’t go anywhere without the blood testing kit.”
Emily took it like a trooper, said Leasa. “We injected her insulin once. After that, she said, ‘I want to do it.’” She was 11.
Six months later she was switched to a slow-drip insulin pump that she wears 24/7, which requires constant monitoring.
When Emily eats, she tells the pump how many carbs she will be eating and the pump automatically does the calculation and adjusts the insulin for her. “It’s not a fixed formula, ever,” said Leasa. “That’s the hard part. You never just set it and let it run. You constantly have to monitor it because her needs will change.”
When she hits puberty, her need for insulin will change. Exercise brings blood sugar down, so when she exercises her need for insulin changes.
“Emily dances at least two hours a day. Sometimes five. It’s good to exercise, but hard to figure out what that magic number is because exercise can affect your insulin needs for about 36 hours.” Nightly checks are essential.
“When they check me during the night I don’t wake up anymore because I’m numb to the pricking of my finger,” said Emily. “So mom and dad come in at 12 and three o-clock in the morning and they prick my finger. Then if there’s something wrong, like my blood-sugar’s high, they’ll give me insulin. If I’m low they give me cookies and milk. Sugar first, then cookies and milk.”
Emily has just finished Grade 6 and 7, completing two years of curriculum in one academic year. In September she’ll begin Grade 8 at her school, the Hamilton Academy of Performing Arts, which keeps her very active and busy with two hours of ballet every morning along with drama, vocal, character dance and modern dance interspersed with her academics.
The Italian government has worked to promote awareness and understanding of celiac disease. This gave Emily a rare opportunity to enjoy a dance program there last March without getting sick. Her father Mike said they had no problems finding gluten-free food in restaurants and the hostel where they stayed.
Emily has to be really aware of how she’s feeling and not ignore the symptoms. Leasa and Mike have to keep tabs on her to know where she is, or when she’s alone. She has to change the insulin pump insertion site and the insulin every three days. “She can’t run out,” said Leasa. “She can’t ever be without it. She could take the pump out, if she had to, for up to two hours. After that she would start getting into trouble. And it runs on batteries, so we have to monitor the battery level and make sure she is carrying extras.”
Last March, Emily earned the opportunity to spend spring break in Italy to take part in a dance program. Mike and Emily went along, equipped with a suitcase of gluten-free snacks, batteries and insulin.
“It turned out,” said Leasa, “that Italy is excellent for celiac – they test all school-aged children for celiac, in conjunction with their immunization schedule, beginning at age five. They actually test everyone.”
“A lot of the parents over there were looking out for Emily,” said Mike. “They gave me a list of grocery stores that carried gluten-free food. The hostel we stayed at gave us a kitchenette to use. One night we ordered a pizza. It arrived packaged, so we had to bake it.”
There is such awareness in Italy that every restaurant Emily went to was capable of supporting Emily’s need for gluten-free food, in, of all places, the pasta capital of the world.
Emily didn’t get sick at all.
On Sunday, June 10, Emily and her family are participating in the Juvenile Diabetes Research Foundation Canada, (JRDF) 2012 Telus Walk to Cure Diabetes in Hamilton, Ontario. For more information and donations visitJRDF Telus Walk to Cure Diabetes