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Balancing Act: Managing Celiac Disease and Type 1 Diabetes Together

September 1, 2011

At 7 p.m. on June 19th, 10-year-old Caitlyn Carr of Staten Island, NY, tests her blood sugar. It’s been a full day of sightseeing in Washington, D.C., where she is a delegate at the 2011 JDRF Children’s Congress. After hours of walking, she’s not surprised that her glucose level has dipped to 23 milligrams per deciliter. At this point, most people with type 1 diabetes would reach for the nearest source of carbohydrates, but Caitlyn is not like most people with type 1.

Ten percent of people with type 1 diabetes—including Caitlyn—also suffer from celiac disease, an autoimmune disorder that affects the body’s ability to absorb vital nutrients due to an adverse reaction to gluten, a commonly eaten protein. Caitlyn cannot ingest any gluten products, including anything made with wheat, barley, or rye—many foods that a typical person with type 1 diabetes would eat to treat low blood sugar.

“Having to deal with two diets makes my life complicated,” Caitlyn says. “My friends get to do things easily but I have a much harder time because I have to wait. At a party, I have to test my blood sugar and then wait for my mom to bring me a gluten-free brownie.”

Unlike her diagnosis with type 1 diabetes in April 2008, Caitlyn’s diagnosis with celiac disease five months later was not prompted by any symptoms. “There are many possible symptoms: upset stomach, weight loss, muscle weakness,” says Caitlyn’s father, Mike Carr. “But Caitlyn had nothing.” Her endocrinologist, however, knew not to wait for Caitlyn to get sick, and was already performing routine blood tests for celiac disease. When one of the tests came up positive, a gastroenterologist confirmed the diagnosis. Caitlyn was fortunate—left untreated, celiac disease can lead to serious complications, including hyperthyroidism and osteoporosis, concerns for both children and adults.

Managing both diseases is all about establishing a smart routine—finding foods that work and sticking to them—but with twice the attention. When Caitlyn was first diagnosed, this wasn’t easy.

“Information was hard to come by,” says Mike. “We had to call food companies and ask if their items were gluten-free and processed in a gluten-free environment. Thankfully, there are many more gluten-free products today, and the packages are clearly labeled.”

The Carrs became more comfortable eating out as well. “At restaurants, we are very clear with servers that she’s gluten-free,” says Mike. “For example, fried foods have to be fried separately in a pan, not in the deep fryer. They’re usually very accommodating.”

If practice makes perfect, then Caitlyn is a pro. She has discovered many foods that she and her immune system can agree on. “In the morning, I eat eggs or gluten-free rice cereal. For lunch, I switch it up with gluten-free crackers (Schar brand) and peanut butter.” Other favorite foods include almonds, pizza with gluten-free crust, chicken, and steak.

Caitlyn has a routine for treating low blood sugars as well. “When she gets low, we always treat the same way,” says Caitlyn’s mother, Laura Carr. “At home, she drinks milk, and if she’s really low, she follows it up with gluten-free pretzels, crackers, or popcorn. Milk is rarely available when we’re away from home, so she eats glucose tablets instead.”

The dietary restrictions haven’t slowed Caitlyn down. She plays soccer, basketball, and tennis, just like she did before the diagnoses, and feels that her gluten-free diet gives her lots of energy. She’s learned to be doubly smart about carbohydrates, avoiding the highly processed, empty-calorie carbohydrates that are problematic for many people with type 1 diabetes. Her crackers are high in fiber, her almonds are full of healthy fats, and her chicken and steak pack a high-protein, low-carb punch. “Gluten-free is the way to go,” Caitlyn says. “It gives you more energy, and it’s healthier.”

For more information about celiac disease, visit JDRF, National Digestive Diseases Information Clearinghouse or the Celiac Disease Foundation.

This article was originally posted in the Life with Diabetes Newsletter at JDRF’s Countdown webpage.


To learn more about the JDRF Dallas chapter, visit our JDRF Dallas website!

2 Comments leave one →
  1. Michelle permalink
    September 1, 2011 3:42 pm

    This story makes it sound easier than it actually is. Must be an only child…

  2. Rhonda Vela permalink
    September 4, 2011 8:30 am

    My daughter is 8 and was diagnosed Celiac when she was 2 and Type 1 at 5. My family of 6 are all Celiac and have been gluten free for 6 years.
    Cross contamination is happening to a lot of people who eat out regularly and without the symptoms you are unaware that you are being exposed to gluten and causing many health problems long term.

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