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Celiac Disease and Diabetes: Jane Kokernak Goes Gluten-Free

A good support system helped her transition to a gluten-free diet

Laura Kolodjeski of Sanofi US DiabetesLaura Kolodjeski

As I listen to the diagnosis stories of many people who live with diabetes, I frequently hear about considerable lifestyle adjustments, often in terms of diet. Carb counting, adding more fruits and vegetables and substituting sugar with alternatives seem to be common changes. Today I’d like to introduce you to blogger, Massachusetts Institute of Technology writing lecturer and mom Jane Kokernak, who has faced making these considerable lifestyle changes more than once.

Jane Kokernak
Jane Kokernak

Diagnosed with type 1 diabetes as an adult in 1992, Jane was familiar with what lay ahead for her. “I had seen type 1 diabetes in my family with my youngest brother, so I kind of knew the pattern,” she said. “There were two sides to my diagnosis; I was upset and traumatized, but I also thought, ‘I’m going to do this. I’m going to manage it as well as I can and people are going to help me.’ I got back on my feet pretty quickly, and I’ve been in very good health since then. That is very motivating to me, to be in good health and to stay in good health.”

When a problem with her health arose, Jane took notice. For roughly the past ten years, she has had problems with low red blood cell count, or anemia, a cause for which her care team and a specialist could not identify. Jane took iron supplements and even received intravenous iron infusions, but her blood remained anemic. Finally in August 2013, Jane saw a new hematologist, who was determined to find a cause. A comprehensive blood test, followed by an endoscopy and colonoscopy, confirmed the root of the anemia: celiac disease. The doctor advised her to follow a gluten-free diet, starting that day.

Initially, Jane was relieved. “It was an answer to a mystery,” she said. “When you have a diagnosis, then you can do something about it. Because I had already been following a diabetes diet, I thought, ‘Okay I can do this. I know how to make dietary adjustments. I’m good at that.’ But within a few days, I realized all the dietary adjustments I have to make is now double. So for the first week, all I did was subtract. I don’t eat pasta anymore, subtract. No more cereal or oatmeal. Medically, I didn’t have any advice.”

After about a week, Jane met with a nutritionist who provided handouts, guidelines and advice. Jane also found a variety of helpful resources online, including blogs, CeliacNow.com, and gluten-free food websites. She also discovered some gluten-free products in her local grocery store. “Those resources improved things, but it took me a few weeks to reshift this idea of how I was going to eat and get enough carbohydrates,” she said. “Especially with diabetes, I didn’t feel I could be as free with the sources of calories as I could if it was only celiac disease.”

After Jane posted about her new diagnosis on A Sweet Life blog and Facebook, a support system emerged, guiding her as she learned how to transition to a gluten-free diet. Her sister-in-law has a co-worker who lives with celiac disease and provided Jane with some suggestions about food brands to try and a gluten-free baking cookbook. A friend at Jane’s workplace was also helpful, sometimes bringing Jane apples and nuts to snack on while at work. “I was glad I had put the word out,” she said. “People found practical ways they could give me some support and really help me.”

With renewed attention to her diet, Jane noticed something interesting related to her diabetes. “I was changing my diet and was super-conscious of everything I was choosing to eat, including the amount of carbohydrates. My A1C numbers were staying in the low end of the target range set for me,” she said. “My endocrinologist nurse educator said she wasn’t surprised because she knew it’s a time to recommit to your diet. It was almost like when I first learned I was diabetic and I was writing everything down in a food diary to share with my doctor. I did the same thing with the gluten-free diet. I was writing it down.”

Eating meals away from home has proven challenging for Jane to navigate. “I think the hardest thing is being at work at a meeting when they’ve ordered sandwiches or pizza in for people,” she said. “Before I go into the meeting, I just think, ‘I’m going to look for the salad and fruit, and that’s what I’m going to eat.’ I decide ahead of time what I’m going to do or not do. I also have been to people’s houses to eat, and I have told them I have celiac. People are pretty thoughtful of asking ahead of time what that means and what I can eat. They think about it. That’s really nice.”

Jane’s family has also been supportive of her dietary changes. “I have two teenage daughters still at home, and they’re very sympathetic,” she said. “If I’m baking, I just bake gluten-free. If they want to bake on their own, they have their baking flours separate. If I’m making lasagna for dinner, I use gluten-free noodles and they eat it. If I make sandwiches, I make my sandwich first, then they’ll make their sandwiches after mine, because people can eat my bread crumbs; I just don’t want to eat their crumbs. They’re fine with it. It’s not a problem.”

Ultimately, it came down to a mindset shift. “I tried to emphasize the things I could eat,” she said. “Even if I limited all grains, I’d remind myself I can eat fruits, vegetables and natural dairy products. I tried to focus meals around those foods as I was figuring out how to make substitutions for the main carbs. In the beginning I thought in terms of subtracting but then I had to think about bringing things that used to be in the background of my diet to the foreground.”

According to Jane, patience is the name of the game when transitioning to a gluten-free diet. “Give yourself both permission and time to clear away some other things in your life so you can make these changes,” she said. “I needed time to pack myself a lunch and plan for dinner every day, because I couldn’t be assured I could get my foods out there in the world. It’s a big thing, like changing apartments. You really need to find a way to make time for the change.”

Patience, a strong support system and a positive attitude – key elements to making many lifestyle changes. Jane offers a great example of all three. My thanks to her for sharing her story.

All the best,

Laura K.

Disclosure: Jane Kokernak received no compensation for this post. All opinions contained in this post reflect those of the interviewee, and not of Sanofi US, its employees, agencies or affiliates.

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