Quality of Life Is Top Priority With Celiac Disease

May is Celiac Awareness Month! This is a great time to celebrate those with celiac disease and their families who have learned how to thrive with this autoimmune disease.

Celiac disease is one of the more common autoimmune disorders, which affects over1 percent of the population worldwide and creates inflammation in the small intestine. It can impact any part of the body–ranging from gastrointestinal symptoms, weight loss, mood, energy, and bone health–to name a few. Though there is no cure, it can be managed exclusively with a gluten-free diet and lifestyle.

Gluten is a type of protein that is found in wheat, barley, and rye, and certain oats. It’s what makes bread dough stretch and gives baked goods their chewy texture.

“We are a food-driven culture, so having to eliminate certain items from our diets can be difficult,” says Venus Kalami, MNSP, RD, pediatric clinical dietitian at the Stanford Medicine Children’s Health Celiac Disease Center. But with the variety of gluten-free food choices now available, people with celiac disease can and do lead normal and fulfilling lives, she adds.

“It can take time to adapt to a gluten-free diet,” notes Kalami. “For patients who need more time to wrap their minds around being gluten-free, I encourage them to go break the process down into digestible steps to progress toward the goal of a gluten-free diet. Most importantly, I tell them not to let the disease define their lives.”

When parents Ted and Alyson Gay found out that both their children had celiac disease, they were relieved to have identified the cause of their kids’ recurrent abdominal distress and pain. While dad Ted had had abdominal and GI symptoms periodically as a child, he was never diagnosed with celiac disease.

“It was like a tornado had come through our lives and turned everything upside down,” recalls Alyson. “But now, this is just how we live.”

Both parents agree that it was a complicated lifestyle change, but they credit the health care team at Stanford Medicine Children’s Health for helping them manage the process.

 “It would have been hard for us to have navigated the change without their support,” adds Ted.

A team approach

Celiac disease is a chronic condition, so selecting the right health care team is an important step.

“At the Stanford Medicine Children’s Health Celiac Disease Center, our role is to advocate for children with celiac disease,” says Nasim Khavari, MD, gastroenterologist and director of the center. “We are there to support families at every touchpoint, from medical management to all of the nutritional, social, and psychological components of this complex condition.”

And since celiac disease can affect many aspects of the child’s life, from school to sports to friendships and social situations, that’s a huge role to play.

“Many medical centers offer the right range of subspecialists and counselors that patients and families may need,” says Dr. Khavari, “but few provide them all under one umbrella as a coordinated unit.”

The Celiac Disease Center’s care team supports the whole child, not just the disease, and works to ensure that the patient learns to lead the life they want within the framework of celiac disease.

The Stanford Medicine Children’s Health Celiac Disease Center relies on an interdisciplinary team that works together to support each patient’s needs. This approach enables families to see all the providers they need in one visit. It also ensures that the whole team is equally informed about each patient’s progress.

“Each child is different, and we focus on what is important to that child as we develop a care plan that offers them the best quality of life possible,” says Dr. Khavari. “But we don’t want the child’s and the family’s lives to revolve around the disease.”

The celiac disease team includes not only people who address medical issues but also those involving food, feelings, and family.

For example, gastroenterologists evaluate the patient and conduct tests to determine whether the child does have celiac disease, help manage the disease, interpret laboratory testing and ensure there are not additional vitamin deficiencies, symptoms or autoimmune illness to think about.

Since Stanford Medicine Children’s Health only takes care of children, pediatric specialists are always available to assist in administering anesthesia or performing an endoscopy as part of the diagnosis process.

Dietitians help families learn not just the framework for a gluten-free diet but also how to manage that diet in numerous social situations, such as at school, during sleepovers, and while traveling. Psychologists offer guidance and counseling for managing the stress of a chronic disease and developing healthy coping skills. And social workers help advocate for families to reach out to teachers, school nurses, and sports coaches to explain the child’s needs, while also providing space to listen to emotional concerns.

What to expect

The celiac disease team works with newly diagnosed patients as well as those who have had the disease for a while.

In general, step one will most likely be confirming that the child has celiac disease. A medical provider/practitioner examines the child and schedules blood tests and another procedure, such as an endoscopy. If celiac disease is confirmed, the patient meets with the care team to begin the gradual process of learning how to manage celiac disease with a gluten-free diet.

This first appointment includes in-depth sessions with the celiac disease dietitian, followed by a visit with the other care team members, including the psychologist, and social worker. They review such factors as:

  • Components of a gluten-free diet.
  • How to manage a gluten-free household.
  • Accessing school and other community resources and support systems.
  • How the child’s celiac disease may affect other family members.
  • Managing the stress that may accompany a chronic disease.

“No one expects a family to walk away from that first meeting knowing how to perfectly implement the gluten-free diet,” says Kalami. “We guide families about how to make choices, but we understand that the whole process can be overwhelming, and the learning curve is certainly high. That’s why we are here to support and follow-up throughout all phases of life with celiac disease experience.”

Eight-year-old patient James Gay has advice for kids who just found out they have celiac disease. “Calm down,” he says. “Even though you can’t eat gluten anymore, you can find gluten-free versions of most of your favorite things. So be patient–there are good gluten-free foods out there.”

A big decision for families is whether to have a completely gluten-free kitchen, or just have a few shelves or a dedicated area that is free of gluten.

“We found that going completely gluten free at home created a safe zone for our kids,” says mom Alyson Gay. “This way they don’t have to worry about what they can and cannot eat. They know that when they’re home, they can eat anything.”

Many families will also opt for a hybrid household that contains both gluten-free and gluten-containing foods while continuing to successfully manage their health this way. Navigating the gluten in the household successfully can look different for each family.

Moving ahead

The Stanford Medicine Children’s Health Celiac Disease Center understands that as children grow and mature, their understanding, knowledge, and attitudes about food change and evolve. As they become more independent and develop ownership of their gluten-free lifestyle, they may still need ongoing support. For this reason, the care team recommends that children with celiac disease check in every three to six months after the diagnosis is confirmed, and then about once a year.

Since celiac disease is an autoimmune condition, the child may be at risk for other autoimmune diseases, making periodic checkups important.

“Any chronic disease comes with the need for consistent follow-up,” notes Dr. Khavari. “We want to support our patients but also help them develop accountability for how they’re doing, which they will learn over the course of months and years. We also want them to have the tools needed to navigate the gluten-free diet at different ages and stages of development.”

“No one is perfect,” she adds. “Everyone makes mistakes—one child overlooked the risk of cross contamination at a salad bar; another decided to taste a cupcake at a class party. We want to help people with celiac disease recognize that managing it is a process, and that we’re here to help overcome the hurdles they may face now and in the future.”

And James’s sister Eliza, 6, is optimistic about the future. “Doctors and scientists are working hard so maybe by the time we’re grownups, celiac disease will have gone away,” she says.

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