Claire and Emma Brennan are 13-year-olds who are always on-the-run.
Whether it’s sprinting across the basketball court or flying to their next volleyball tournament halfway across the country, these twin sisters stop at nothing to achieve athletic excellence.
“Claire and Emma have sports practice almost every day of the week,” said their mother, Cathy Brennan. “We’re always on-the-go, so I have to make sure they have easy access to snacks they can eat to keep energized.”
The active teens burn calories at a rapid pace given their hours of intensive sports practice, and so a balanced diet is key to performing at their best.
However, food prep takes some careful planning in the Brennan household as both girls are on a strict gluten-free diet to manage celiac disease, an autoimmune disorder that they were diagnosed with in September 2017.
With help from the Celiac Disease Program at Seattle Children’s, Claire and Emma learned about ways to control their disease by making specific dietary choices.
Getting comfortable with a new diet wasn’t an easy process for the sisters. It meant committing to a whole new lifestyle that would cause frustration at times.
“It definitely wasn’t easy at first; there were times when they were mad about their diagnosis,” said Brennan. “But giving them the control to make their own choices with what they wanted to eat based on what they could eat really helped them to understand and embrace their new sense of normal.”
Symptoms on opposite ends of the court
Claire and Emma were born 8 weeks early at only 3 pounds each.
Although the girls were premature, they developed normally through their childhood and met their major milestones.
However, when the girls were around 5 years old, Brennan began noticing that Claire was having digestive issues.
“Claire seemed to be having constant stomach problems, and so we took her to the doctor to get checked,” said Brennan. “While it didn’t affect her development or ability to be active and play sports, doctors didn’t think it was related to a larger problem.”
Emma, on the other hand, was experiencing physical symptoms that appeared to be quite different than her sister’s.
“Emma suffered from a lot of headaches,” said Brennan. “However, just like Claire, she remained otherwise healthy and active, and doctors weren’t too concerned.”
While both Claire and Emma continued to move up the ladder of success in school sports, Brennan saw that her daughters’ symptoms remained manageable.
It wasn’t until the summer of 2017 that Claire noticed something that strayed from her usual stomach discomfort.
“She told me the discomfort began moving to her hip area, so I took her to a nearby walk-in clinic,” said Brennan.
“The doctor examined Claire and said it didn’t seem to relate to her history of digestive issues, and that she needed to be seen at Seattle Children’s,” Brennan added.
After a variety of testing, Brennan was finally able to put a name to the root of her daughter’s health issues.
Celiac disease is an autoimmune disorder that causes damage in the small intestine. People with celiac disease respond differently to gluten, a protein found in wheat, rye and barley.
When people with celiac disease eat gluten, it triggers an immune reaction, and the inflammation that occurs in the digestive tract may cause a wide variety of signs and symptoms involving many parts of the body.
“While celiac disease is very common and affects approximately 1 in 100 people worldwide, it can be difficult to diagnose, especially if a person does not exhibit many of the classic symptoms of the disease,” said Dr. Dale Lee, director of Seattle Children’s Celiac Disease Program. “Although Claire did present with abdominal pain, she didn’t have any of the other common symptoms. It was also difficult to tell that both Claire and Emma had celiac disease because they seemed to be healthy and thriving.”
After Claire’s diagnosis, Brennan was advised to take Emma to Seattle Children’s for an evaluation as well.
While the main causes of celiac disease are unknown, people can inherit the risk to develop the disease from a parent. People with a first-degree relative, such as a parent, child or sibling, with celiac disease also have an increased risk.
“For Emma, a genetic test showed she also had the condition,” said Brennan.
With both sisters exhibiting severe inflammation in their digestive tract due to regularly consuming gluten in foods that can be difficult to avoid – such as pasta, cereal, crackers and most breads – Lee made sure they met with several members of the Celiac Program team as soon as they could to discuss a treatment plan.
“Through the program, we start by meeting and talking about the diagnosis,” said Lee. “Patients will then go through rigorous teaching of how to institute a gluten-free diet and how to thrive on it. It’s important that patients begin a gluten-free diet to prevent serious, long-term health problems such as intestinal cancer.”
Getting over the first hurdle
The first several months of adjusting to a gluten-free lifestyle for Claire and Emma were a challenge.
“Once reality set in, they were a bit embarrassed at first,” said Brennan. “They didn’t want to tell anyone they had celiac — not their coaches, friends, or even servers at restaurants.”
However, Brennan knew that a top priority in helping her daughters with their lifestyle change would require reaching out to Claire and Emma’s sports teams to communicate the news of their diagnosis.
“Because sports is such a big part of their lives, we needed to sit down with their coaches, teammates and their parents,” said Brennan. “They compete at a high level, and so we knew that if they couldn’t compete at 100%, it would affect the rest of the team. Everyone needed to be aware, especially as the girls were adjusting to their new diet.”
Thankfully everyone they shared the news with was supportive. It helped that their care team at Seattle Children’s could make the teens feel more comfortable with their diagnosis by relating to them in more ways than one.
When Claire was first diagnosed, she met with Taylor Alexander, an advanced registered nurse practitioner from Seattle Children’s Gastroenterology team.
“Taylor assured Claire that she would be able to compete in sports like volleyball just fine,” said Brennan. “It was nice that Taylor shared with her that she played volleyball in school and now coaches a team. She also chooses to eat gluten-free, and so Claire found that to be even more reassuring.”
Through a support network consisting of their care team, coaches, teammates, friends and family, Claire and Emma have been able to get past the limitations of a gluten-free diet that they thought would affect their lives in a negative way.
“They are constantly going online to research different gluten-free recipes they might like,” said Brennan. “They have also been researching athletes who eat gluten-free and how they manage their diets.”
Popular professional athletes like NFL quarterback Drew Brees, tennis champion Novak Djokovic, and U.S. Olympians like Alpine skier Resi Stiegler and beach volleyball player Casey Patterson, all eat gluten-free due to celiac disease, gluten intolerance, or simply because they choose to follow the diet for wellness.
“Claire has actually met Casey Patterson a few different times, as he’s been to her volleyball club to help with training,” said Brennan. “She really admires him as an athlete and has told me – ‘see, mom, he doesn’t eat gluten and was in the Olympics!’”
Hustle, hit and never quit
As the family is constantly on-the-run, Brennan and the girls have nailed down a routine for what go-to snacks they can pack for sports practice and while they’re on the road or in-flight to their next competition destination.
“For snacks, we take things with us like meats, cheeses and nuts,” said Brennan. “We always make sure we have snacks packed and ready in the car as well.”
When the family has to travel out-of-state for Claire or Emma’s games, and they aren’t familiar with the food options at surrounding eateries, they know to head to the store.
Lee understands the challenges that kids and teens like Claire and Emma go through while navigating their way through a gluten-free diet.
“I know it can be hard when you’re young and don’t want to feel different than your friends,” said Lee. “We want to communicate a positive message to these kids and teens – you can treat your disease by making good dietary choices. We want to let them know that there’s a ton of tasty gluten-free options available, and you can really thrive while still getting to eat delicious food.”
Like Claire and Emma, Lee says that having a good support system is essential in helping to make the transition to a new diet easier.
“Our celiac disease patient families are always coming up with great ideas on how to manage their diets,” said Lee. “To elevate these ideas, we’ve given patient families the platform to do so through a support group which meets quarterly. We had almost 65 members attend our most recent support group.”
Brennan wants families who have kids newly diagnosed with celiac disease to remain patient and hopeful when adjusting to their new normal — even at times when they might be begging for sweet treats.
“It’s so important to empower your kids to make their own choices when it comes to their diet,” said Brennan. “Ask them what they want to try and where they want to go — and when they come to you saying they miss brownies or cake like my daughters did, encourage or help them to find a gluten-free recipe that they can create and enjoy.”