Sisters Charlotte, 9, and Taylor, 8, are the best of friends. But they share more than family and a passion for girl scouts, sailing and golf; both must avoid all forms of gluten. Charlotte has celiac disease; Taylor has non-celiac gluten sensitivity. 

The duo has been under the care of clinicians at the Center for Celiac Disease at Children’s Hospital of Philadelphia since they were toddlers. Today, both are thriving thanks to support from their family and their clinical team, led by Gastroenterologist Lisa Fahey, MD, and including a dietitian, registered nurse and psychologist.  

 “The Celiac Center feels like family to us,” says Renee, the girls’ mom. “They’ve been with us since the girls were first diagnosed and have supported us through everything. We love the whole family treatment approach to make their lives – and our home as safe as possible.” 

Today, the entire family is passionate about educating others about celiac disease and gluten sensitivity. They’ve been active volunteers at the Celiac Center’s annual Education Day for the past few years, and in May 2024 they raised more than $14,000 for the Center as part of the hospital’s 31-Day Challenge. Along with fundraising, the girls pledged to do something active each day during May: Charlotte pledged to do a 31-second split each day; Taylor promised to do 31 cartwheels. Here, they share their stories. 

Charlotte’s story 

Charlotte was referred to Children’s Hospital of Philadelphia (CHOP) at age 2 for “failure to thrive.” As a new mom, Renee believed she had failed her daughter. Clinicians at CHOP reassured Renee and her husband, Dave, and worked to uncover what was causing Charlotte’s growth delay, severe constipation and other symptoms.  

After performing numerous medical tests, and investigating the family’s medical history, Charlotte was diagnosed with celiac disease – one of the most common genetic conditions in the world, but one that required lifelong treatment and monitoring. 

Celiac disease is a condition in which the body’s immune system reacts negatively to the protein gluten, which is found in wheat, rye and barley. As a result, Charlotte could not properly digest foods like bread and pasta – some of which were her first solid foods.  

Doctors assured the family that Charlotte could thrive with treatment – which included cutting all gluten from her diet – and ongoing monitoring. The family made the decision to make their entire house gluten-free. Mom, dad and Charlotte’s 1-year-old sister would avoid eating or storing any gluten-containing products at home.  

“The kids were so little,” Renee says, explaining their decision. “Charlotte was 2, Taylor was 1. They shared everything. We thought it was the best way to keep Charlotte safe.” 

The entire family was also screened for celiac disease, assessed for any symptoms of gluten sensitivity and underwent genetic testing. Clinicians discovered both parents each had one of the known causative genes for celiac disease, though neither parent had the disease or its symptoms at the time.  

Thankfully, it appeared Charlotte’s little sister wouldn’t be affected. Taylor didn’t have the typical genetic links to celiac disease or any symptoms. Within a year however, Taylor began to experience her own disturbing symptoms. 

Taylor’s story 

“Taylor’s story is more complicated,” Renee says. When Taylor was 2, she began to have speech issues, anxiety and night terrors. She was also very constipated with a distended stomach, her mother says. “Of course, we immediately thought of celiac disease.” 

The family again turned to CHOP for support. Though Taylor didn’t have either of the most common causative genes for celiac, research is ongoing about other rare genetic links. She would need further testing to learn more. The team at CHOP ordered a lactose breath test, a fructose breath test and an upper endoscopy. 

Unfortunately, to get a complete assessment of Taylor’s condition, she would need to start eating gluten again – specifically 2 slices of bread each day. For the next few months, Renee and Dave encouraged Taylor to eat gluten under their watchful eyes – careful to keep any crumbs far away from Charlotte.  

Finally, it was time for Taylor’s upper endoscopy at CHOP. The test confirmed that Taylor did not have celiac disease. Instead, she was diagnosed with non-celiac gluten sensitivity.  

Like her older sister, Taylor would need to avoid gluten to help her feel well; but, unlike Charlotte she would not have to avoid small crumbs of gluten and wouldn’t risk damaging her intestine if she accidentally ingested it. A year later, Renee was also diagnosed with gluten sensitivity. 

Ongoing treatment at CHOP 

Charlotte and Taylor are both treated by the same clinical team including Dr. Fahey, co-director of the Center for Celiac Disease, and Kara Feigenbaum, RD, CDCES, LDN, a clinical dietitian who specialized in the gluten-free diet. Charlotte was also treated by Patricia A. Bierly, MSN, CRNP, a nurse practitioner. 

The girls have joint appointments where each girl is assessed by their core team of caregivers and the team is adjusted as needed. For example, when Charlotte returned to in-person schooling after COVID-19, the family consulted with a social worker to help create a 504 plan to ensure her safety while sharing cafeteria tables, art supplies and more at school. 

Both girls have 504 educational plans, ensuring they have equal access to education despite their health conditions. This means extra planning for their family and the school district to ensure they have access to gluten-free food at the school cafeteria and family-provided, gluten-free treats whenever there are any classroom parties of events at school. 

“They both know how to find the gluten-free symbol on products now,” Renee says, “but we still need to be careful because some products may have the symbol but are not safe for all people with celiac – like Cheerios. Each girl has a snack box in their classroom with substitute treats that includes things they don’t get every day – like gluten-free cupcakes or muffins from Trader Joe’s – so they are excited for the treat, even if it’s not what everyone else has.” 

Life goes on 

The past year has been a memorable one for the girls; filled with rites of passage but modified due to their health. The first example: Their First Holy Communion. While the girls loved the religious symbolism and the white dresses, they could not consume the traditional communion wafers or wine offered at their church. Both contained gluten. Instead, the girls made their sacrament with non-alcoholic, gluten-free wine served in their own chalice that their dad bought, and the church blessed. 

Both girls are now eating cafeteria-prepared food at school. “We worked with the school district to come up with a safe menu and they’ve been working with us,” Renee says. Of the 200+ kids in the school, the sisters are the only ones who currently need special dietary support.  

The girls continue to enjoy many of the same interests – from scouts to cheer, sailing and martial arts – but are growing into their own distinct personalities.  

Charlotte is outgoing and dramatic, who loves reading and often worries about “getting glutened.” She vividly recalls past experiences when she was accidentally exposed to gluten and wants to avoid any repeats.  

“Instead of trying to blend in, I stand out,” Charlotte says about her celiac disease, “And I find out who supports me more easily.” When she grows up, Charlotte hopes to become child-life specialist, to work at CHOP and to help kids dealing with diseases like celiac. 

Taylor is shy at first but opens up when talking about her favorite subjects like art, science and math. She loves playing outside and enjoys fishing on the St. Lawrence River with her dad. Taylor says she wants to be a scientist or astronaut when she grows up.   

 Renee has high hopes for both girls: that they stay healthy, continue growing into kind, smart and sweet girls, that they go to college or trade school and pursue whatever makes them happy.  

“There’s so many good things ahead of them,” Renee says. “And I’m so grateful CHOP has supported our family – allowing us to have the same clinical team for both girls – and adding new supports when we need them. I know our whole family is in capable hands at CHOP.”