Leading a normal life for a ‘diabeliac’ is anything but

June 10, 2012

DUNDAS, ON, June 10, 2012/ Troy Media / – For 12-year-old Emily Steadman, leading a normal life takes very, very hard work. She lives with both celiac disease and Type 1 diabetes. Her life is anything but normal, living with a long list of things she has to be aware of, and educated on, for survival.

The list includes understanding such topics as diet, environment, exercise, medications, carbohydrate calculations, to name only a few – all in the effort to stay alive.

Emily’s mom, Leasa Steadman, understands the lifestyle they live is not normal for most families.

‘You hear about diabetes everywhere, but do you really know what’s involved?’ said Leasa. A professor at Sheridan Institute of Technology and Advanced Learning, Leasa had done her research, but it still didn’t prepare her for the lifestyle changes the Steadmans had to make to keep Emily alive. In the beginning, ‘I don’t think I had any clue,’ she said.

The McMaster Children’s Hospital Diabetes Clinic was very helpful for the Steadman family. ‘We would learn more with every visit, building a binder of information,’ said Leasa. ‘They did such a good job. It’s overwhelming. It’s like getting a medical degree overnight.’

‘Being overwhelmed at diagnosis is not something you can avoid,’ said Heather McKean, child life specialist for McMaster Children’s Hospital Pediatric Diabetes Program.

‘When children come to us, and are newly diagnosed, we don’t give them all the information at once. We spread it out over about a three-month period. Each time they come to our clinic they learn a little bit more,’ she said.

McMaster’s pediatric diabetes program provides care to approximately 600 children and youth with Type 1 diabetes. McKean is part of a team consisting of four endocrinologists, three pediatric diabetes nurses and three dieticians who are all certified diabetes educators, a social worker and a child life specialist.

McKean’s role is to provide psychosocial support for children with diabetes. She helps them to cope – explaining what’s happening in ways they can understand, while teaching coping strategies and giving them a safe outlet for emotional expression.

‘We played, ‘Feelings Jenga,’ said Emily, who now jokes with her mother about it.

Emily said, ‘I’d be perfectly happy and I’d go into the clinic and (McKean) would say, ‘So how are you feeling?’ Then all of a sudden, waaaaaah!’

‘They want to know all about our feelings,’ said Leasa. They also involved the whole family, which helped extended family members understand as well.

What really touched the Steadman family is when a group of doctors and nurses from the Clinic attended Emily’s ballet performance, six months after her diagnosis. ‘They came to watch her dance – it was great,’ said Leasa.

Coping in the ‘real’ world

Most are familiar with Type 2 diabetes, which involves monitoring blood sugar levels, carbohydrate intake and perhaps taking medication to stabilize insulin production. Type 1 diabetics essentially can’t produce insulin and need injections of it to survive. In addition to this, Emily’s diet needs to be 100 per cent gluten free.

Cross-contamination is a serious matter for people who have celiac disease. Food must be prepared in a strictly gluten-free environment.

Emily's sister, Kayla is very loving and supportive, said their mother Leasa. After Emily was diagnosed with celiac disease in 2008, then 13-year-old Kayla asked Emily permission to eat a take-out hamburger.
Recently a large pizza chain introduced a gluten-free pizza. Leasa said, ‘Celiacs like Emily can’t eat it because it has been made in a pizza place where flour is still everywhere.’ Every device used to cook the pizza may be contaminated with traces of gluten. ‘Yes, it’s gluten-free if one is intolerant, but for celiacs like Emily, we’re not confident she can eat it.’

The term ‘spices’ on product labels present a concern for Leasa. ‘If you don’t know the source of the spice, you don’t know if there is gluten in it. Food producers often put gluten in as a filler in spices. You don’t know where it comes from. You also don’t know if it is made in the same facility as other products containing gluten.’

Leasa said that some food producers have websites that detail ingredients to ensure that they are gluten-free. ‘Research must be done before going to the grocery store, so that you know what you’re looking for. You can’t experiment a lot,’ she said.

The Canadian Celiac Association (CCA) has a gluten-free certification program that helps identify foods that are safe to eat for people with celiac disease. Its website also displays a clock, counting down the time when, on August 4, 2012, Health Canada will put into effect a new allergen and gluten labeling law.

Being prepared

Emily has to be prepared when she goes places. ‘We always have to be prepared for emergency measures if her insulin pump stops working,’ said Leasa. One day, while they were stuck in traffic on the way home from Toronto, Emily’s insulin pump malfunctioned. Emily wasn’t getting any insulin and her blood sugar level was rising significantly.

If the blood sugar rises too high a reaction called ketoacidocis occurs, which involves the buildup of toxic substances called ketones that make the blood too acidic. High ketone levels, if they aren’t treated in time, can cause a person to slip into a fatal coma. “It is a lot on a little girl,” Leasa said. Emily always has to be equipped with her insulin pump, batteries, a ketone test kit, a blood-sugar test kit, a source of glucose to eat, and an emergency kit of peanut butter and crackers.

If the Steadmans go on a day-trip they have to bring their own food. ‘We do lots of research in advance about where we’re going and where we can eat,’ said Leasa.

‘The doctors also monitor siblings closely,’ said Leasa. When Emily was first diagnosed with celiac a blood test was performed on her sister, 17-year-old Kayla Steadman. “She showed a little bit of a reaction but not enough to raise concern,” she said. Kayla will be tested again when she turns 18, just before she goes to university. To find out test results just before Kayla embarks upon this life-changing path was initially daunting for Leasa.

“We did some university tours and I asked food services what they do when people have allergies or conditions like Emily’s. They all sounded like they could cope with it, which is amazing to me.” Some universities will accommodate the student’s schedule, while providing local information to support students’ dietary and medical needs.

Living a ‘normal’ life

‘We try very hard not to limit the things that Emily does,’ said Leasa. ‘If there’s a birthday party I’ll just call the parents to try to figure out a way for Emily to participate. She does do sleepovers. We just have a system for it. I’ll make a batch of cupcakes, or find out if they’re having pizza, and at what time, and I will take her some gluten-free pizza. We just try to sort it out. She just wants to be a part of things and not be excluded.”

Emily laughs, ‘Well I’ve never been a normal kid. (But seriously) I only feel different now when I have to sit out to test my blood-sugar. If I have a low number, then I have to sit out of [ballet and dance] class. But now I have so many friends who understand and they sit out with me. I don’t feel out of place as much as I used to and my teacher understands now and she’s very watchful of me, which I’m very grateful for.’

Emily attends the Hamilton Academy of Performing Arts, located in Dundas, Ontario.

When she grows up, she wants to be a ballet dancer. ‘I can’t say that I’m going to be anyone famous, because I don’t know if I’ll ever make it, but I want to be.’

Emily is also a youth ambassador for the Juvenile Diabetes Research Foundation (JDRF), particularly for its Telus Walk to Cure Diabetes event taking place today. While her family and friends fundraise for the event, Emily said she is excited to be involved. One of her roles is to talk about living life as a ‘diabeliac.’

Today, 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 visit JRDF Telus Walk to Cure Diabetes

Previously – When good food can kill a child

Included below is a list of websites the Steadmans find useful:

Canadian Diabetes Association

Canadian Celiac Association

Juvenile Diabetes Research Foundation

Children’s National Medical Center, Washington, DC, USA

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