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  5. Raeann and Shirley: Giving Back to Other Families Affected by Celiac Disease

Raeann and Shirley: Giving Back to Other Families Affected by Celiac Disease

Photo of Raeann and Shirley.Raeann (left) and Shirley (right)In the Winter of 2003, Shirley noticed that her younger daughter, Raeann, then just shy of 2 years old, would tire easily when chasing her older daughter around the house. Not long after, when Raeann started throwing up frequently at meals, the family knew something was wrong. They would eventually learn that Raeann had celiac disease. As Shirley later read through the information available about celiac disease and its treatment on the internet, she sensed the challenge that lay before them. It was just the beginning of her family’s journey learning about life with celiac disease, empowering themselves and others along the way with the knowledge needed not only to survive with the disease, but to thrive.

What is Celiac Disease?

Celiac disease damages the digestive tract and results from an autoimmune reaction triggered by consuming gluten, a protein found mainly in foods containing wheat, barley, and rye. Gluten can also be found in other foods, as well as some supplements and other products. This autoimmune reaction—where the body damages its own cells—occurs in the small intestine, limiting nutrient absorption and potentially resulting in gas and bloating, diarrhea or constipation, and abdominal pain, as well as nausea and vomiting. However, a wide range of symptoms may occur outside the gastrointestinal tract as well. In children, celiac disease can have severe consequences, such as delayed growth and development, while in adults it may manifest as anemia, bone loss, rashes, fatigue, or other complications. Celiac disease affects an estimated 1 in 141 Americans.1 The disease is more common in Caucasians, females, and those with a family history of celiac disease or with other specific diseases, including other autoimmune conditions such as type 1 diabetes. Diagnosis of celiac disease can be difficult and is often delayed; it is based on a series of physical exams, blood and genetic tests, and, lastly, an intestinal biopsy if other tests suggest the disease is present. Celiac disease usually resolves quickly with strict adherence to a gluten-free diet and avoidance of any other products containing gluten—but it can take longer for healing of any intestinal damage that may have already occurred, and the necessary dietary and other changes require constant, lifelong vigilance.

Tummy Troubles

Initially, it took some sleuthing and persistence to get to the bottom of Raeann’s vomiting and lethargy. Though her vomiting was frequent, it was not at every meal. Their pediatrician ruled out a viral infection but was not able to pinpoint the cause. Shirley kept a journal noting when the vomiting occurred and what foods Raeann had eaten. “It was to the point that I took out strawberries and I took out chocolate and different things out of her diet, but nothing really seemed to fit,” says Shirley. After some scary incidents where Raeann gagged while eating in her high chair, they returned to the pediatrician’s office, who referred them to a gastroenterologist. There, they had some tests done that finally gave them an answer. “They did blood work, and they called and said ‘I think she has celiac disease,’” remembers Shirley. “My first question was ‘what is that?’,” recalls Shirley. The doctor then explained what celiac disease is and how it is

"My first question was ‘what is that?’,” says Shirley, recalling when the doctor diagnosed her daughter Raeann’s celiac disease. “He said ‘you go on a gluten-free diet’ … I thought ‘what is gluten?,’ I had no idea.”

treated. “He said ‘you go on a gluten-free diet,’” says Shirley. “I thought ‘what is gluten?’ I had no idea.” No one else in their family had ever been diagnosed with celiac disease or any other autoimmune disease. The doctor informed Shirley that they would need to take a biopsy from Raeann’s intestine to confirm the diagnosis. Reluctant to put their young child under general anesthesia for the biopsy procedure, Shirley sought a second opinion from the head of the Celiac Disease Program at Children’s National Health System, a children’s hospital in Washington, D.C. They called day after day, hoping for an appointment to open up, and when one did, they drove there through the snow. After seeing Raeann, the doctor strongly supported the diagnosis. “He kind of pointed out these things we hadn’t noticed much, like … a distended belly,” says Shirley. “Then he said ‘she has really skinny arms, her hair’s kind of thin, you’re telling me that she’s kind of tired a lot, and looking at the blood work I’m 98 percent sure she has celiac, but you want to be 100 percent sure before you change her diet, so you need to do the endoscopy.’” They went ahead with the procedure that took a biopsy of Raeann’s intestine, showing a flattening of the villi—tiny hair-like projections on the inside of the intestine that absorb nutrients—a sign that the intestinal lining was being eroded by her overactive immune system. The doctor confirmed the diagnosis of celiac disease and advised that Raeann immediately start eating a gluten-free diet.

A Radical Dietary Change

Thankfully, Raeann’s celiac disease was caught early, before long-term gluten exposure could cause more lasting damage. After six weeks of eating 100 percent gluten-free, when they brought Raeann back to the gastroenterologist’s office, she was well on her way to recovery. “She was like a changed child,” remembers Shirley. “She was starting to run and jump and laugh, and, over the next year, she talked.” In retrospect, the family realized that not only had Raeann experienced a delay in her language and other development, but her growth had also been slower. Once on the gluten-free diet, she caught up and gained 10 pounds over the next year. “It was really kind of a miracle—no medication, no surgery, just a very radical diet change,” says Shirley.

But, as easy as the prescription of a gluten-free diet sounded, it required Raeann and her family to approach food in a whole new way. They went online and studied the lists of foods that Raeann could and could not eat. “We got rid of every bit of gluten. We went through all of our pantries and looked at everything,” says Shirley. Shirley put together a notebook with information on gluten-free foods and recipes. As there were few stores where gluten-free items, such as baked goods like breads and cookies, were available, they ordered many items online. “I would order a dozen loaves of bread from a company, and they would deliver it packed in dry ice on my doorstep and then I’d put it in the freezer,” recalls Shirley. Over time, they identified gluten-free baked goods and mixes that Raeann liked. Shirley and her husband helped Raeann come to terms with the diagnosis by reading her a children’s book about a little girl diagnosed with celiac disease. “It was this whole thing about ‘she’s not different, she’s just special,’” recalls Shirley. “It was nice to have a story she could relate to and feel like ‘oh yeah, that’s just like me.’”

“It was really kind of a miracle—no medication, no surgery, just a very radical diet change,” remembers Shirley of the period after daughter Raeann went on a gluten-free diet for her celiac disease.

Learning to Thrive With Celiac

Despite learning as much as they could about celiac disease, the family experienced its share of challenges and setbacks along the way. But they took these in stride as learning experiences that helped them achieve the minor victories necessary for Raeann to thrive throughout childhood and now, as a healthy and active teenager. On the rare occasions when Raeann accidentally consumed even small amounts of gluten, she would become violently ill 2 to 3 hours later. Raeann’s family ingrained in her that she had to ask what was in any food she consumed and empowered her with the knowledge of what to avoid. Over the years, the family evolved strategies for managing Raeann’s celiac disease. They slowly re-introduced gluten into the house for other family members to consume, along with a set of strict rules that the family and any visitors must follow to keep Raeann safe: no double-dipping in foods like peanut butter, a separate toaster for gluten-free bread, repeatedly wiping down the counters, and a place reserved for Raeann at the family table. “Everyone in our family is very good with it, and I have my own cabinet with all gluten-free stuff,” says Raeann. The family also juggles her brother’s tree nut allergy. Every Halloween, Raeann and her brother would trade candy based on their different food restrictions.

As Raeann grew, she served as her own advocate, making sure as much as possible not to consume any gluten even when her family was not around to protect her. When Raeann was in first grade, Shirley would include a note reassuring her daughter that her packed lunch was gluten-free. “There was one day,” says Raeann, “where she wrote a note that said ‘your sandwich is gluten-free,’ and then I looked at the sandwich and it wasn’t the same bread that I usually had.” She asked her teacher, who thought it was OK to eat, but called Shirley to check. When Shirley arrived at the school, she realized that she had accidentally switched Raeann’s sandwich with her sister’s, which did contain gluten. Although Shirley and Raeann’s teacher felt terrible about the mix-up, they were glad that Raeann had spoken up and taken care of herself. Another time, when she had a friend sleep over, Raeann became ill after dinner. Her friend had to leave, and the family were left wondering whether the cause was cross-contamination from her friend’s pizza to Raeann’s gluten-free one or another source. “When something like that happens, we always wonder, ‘what could it have been?’ … there’s no way to really know,” says Shirley. Due to the severity of her symptoms when she accidentally consumes gluten, Raeann must avoid foods that well-meaning friends and neighbors try to make gluten-free for her, in case their preparation or handling introduced any gluten contamination.

Eating out presents its own unique challenges for someone with celiac disease. Raeann is always careful and plans ahead when eating in a restaurant, sometimes bringing her own food or eating at home before or afterwards, but even foods that are advertised as gluten-free can be problematic. Recently, while eating out with friends for her junior year homecoming dance, she pre-ordered a gluten-free meal. “When the waitress served me my meal, she said this was the allergy meal, and I said ‘it’s gluten-free, right?’ and she seemed kind of confused,” recalls Raeann. “Everyone was eating their meals, so I said ‘oh, I’ll just eat it.’” She went home sick that night, missing out on time with friends and tarnishing her memories of the dance.

When Raeann was growing up, Shirley would always make gluten-free birthday cakes for everyone in the family, so Raeann could enjoy them. Raeann would always bring her own gluten-free cupcake that her mom had made to any birthday party she attended. But in recent years, a growing awareness of celiac disease and the wider availability of new foods and dining options for those following a gluten-free diet has made life easier in some ways. For Raeann’s sixteenth birthday, her friends and family went to one of her favorite restaurants featuring a gluten-free menu, culminating with a delicious, gluten-free cake. “It was a big cookie cake,” Raeann recalls fondly. “All my friends ate it too and it was the best cake I’d had.”

A Circle of Giving

In the early years after Raeann’s diagnosis, Shirley and Raeann went to events hosted by the local chapter of a support group for families with children with celiac disease, where they found a welcoming community. There, Raeann participated in activities such as making gluten-free holiday cookies while Shirley learned from other parents of children with the disease. Eager to learn all they could about their daughter’s condition, Shirley and her husband also attended a celiac disease group event at a local library, featuring a presentation by a researcher in the field.

Starting when Raeann was in middle school, the family began sharing with others what they had learned in their years managing her celiac disease. At that time, two other parents contacted Shirley about meeting up and sharing experiences. “They were really interested in talking to me because I had had so many years [dealing with a child’s celiac disease], and their children had been more recently diagnosed,” says Shirley. They learned from her experience, but Shirley also learned from them, including finding out about an app for her phone with information on sources of gluten-free food in the area or when traveling. “That sharing is so important,” remarks Shirley.

In describing why she and mother Shirley reach out to share their experiences managing her celiac disease, Raeann says, “People get so scared about it … so it’s good to talk to people.”

When Raeann and her sister went through their bat mitzvah ceremonies—Jewish coming of age rituals—they chose as their community project to raise money for celiac disease research through a 5K race called “Making Tracks for Celiacs” in Baltimore, Maryland. In addition to collecting donations for the cause, they also participated in the walk/run with Shirley. Afterwards, they enjoyed the rows of gluten-free vendors and raffles. “There were people doing raffles for all different things, and the money goes to celiac research,” says Raeann. They also enjoyed the camaraderie of being around other families managing celiac disease.

In the past year, the family has reached out to area elementary and middle schools, on their neighborhood Facebook page, and through email groups, such as one for parents at the NIH, where Shirley works in a communications office, to share what they have learned. “We said ‘I have celiac, if you or anyone you know has celiac, we’d be happy to help,’” says Raeann. “It had been several years, and we feel like we have our arms around the problem,” adds Shirley. Both Raeann and Shirley responded to people who contacted them, sharing information on their experiences and resources, such as how Raeann approaches life with celiac disease and her favorite area restaurants. “We want to give back a little bit because people helped us and it was useful,” says Shirley. “People get so scared about it … so it’s good to talk to people,” says Raeann. Shirley also stays current on the latest advances in celiac disease research by subscribing to an email newsletter from the NIDDK. (See further information below related to celiac disease available through the NIDDK.)

“It’s one of the interesting things about myself,” says Raeann about her celiac disease, adding that “it comes up right away when I make friends … it’s kind of like part of me.”

In June 2018, Raeann and Shirley attended the Washington, D.C. Gluten-Free Expo and Education Day, where Raeann participated as a speaker on a teen panel. The session was part of a day-long series of meetings on challenges confronting those on a gluten-free diet, with this particular session exclusively by and for teens. “I thought it was just going to be us talking,” recalls Raeann. Instead, “they were all sharing their experiences and asking questions, so it was actually a lot of fun,” she says. Raeann and Shirley also volunteered with the vendors, handing out gluten-free samples. There, they marveled at the wealth of gluten-free foods available and watched some cooking demonstrations, a stark contrast from the scarcity of gluten-free options and more limited awareness of celiac disease when Raeann was first diagnosed.

These days, Raeann stays in excellent health as she juggles her academic work, including honor societies and tutoring responsibilities, sports such as lacrosse and cross-country, and planning for college. Like the message of the children’s book her parents used to read her, Raeann views her formative experiences growing up with celiac disease in a positive light, writing about them in school essays and openly sharing her story with people she meets. “It’s one of the interesting things about myself,” she says, adding that “it comes up right away when I make friends … it’s kind of like part of me.” While she and her family all wish she didn’t have celiac disease, their advice to others affected by the disease is that it is manageable. “It may seem hard to change your whole diet, but it’s not as bad as you think,” says Raeann. “This is something that affects my food and my eating, but that’s not a big barrier … I can still do so many things,” she notes. “Anything really,” adds Shirley.

NIDDK Celiac Disease Research and Education

The NIDDK engages in multiple activities to advance research on celiac disease, including supporting studies conducted by scientists at institutions across the country to gain insight into the underpinnings of the disease and enable the development of improved diagnostics and treatments. Researchers have identified some of the molecular, dietary, and immune mechanisms underlying celiac disease development; revealed the prevalence of celiac disease, including a growing number of undiagnosed cases; and identified subclinical symptoms and tested new diagnostics in children with the disease. For example, The Environmental Determinants of Diabetes in the Young (TEDDY) is a long-term study supported by the NIDDK to understand environmental factors causing type 1 diabetes and celiac disease in children with high genetic risk living in the United States and European countries. In another celiac disease research effort, the Institute provided support for the National Health and Nutrition Examination Survey (NHANES), a program led by the Centers for Disease Control and Prevention (CDC), to gather data that are being used for ongoing analyses on the disease risk factors and dietary intake over time nationwide. The NIDDK also provides online fact sheets for the public and health care professionals with information on celiac disease symptoms, diagnosis, and a gluten-free diet, as well as updates on research. Information is available through the NIDDK website at
www.niddk.nih.gov

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This content is provided as a service of the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK), part of the National Institutes of Health. The NIDDK translates and disseminates research findings through its clearinghouses and education programs to increase knowledge and understanding about health and disease among patients, health professionals, and the public. Content produced by the NIDDK is carefully reviewed by NIDDK scientists and other experts.