Joseph and Devlin are identical twins in every sense of the word. The 11-year-olds have endless energy, which they pour into playing flag football, soccer, and baseball. And they share the same group of friends who love to exchange sports cards and spend hours goofing around together.
“They really are best buds. If they fight, two minutes later they are back together,” says their mom, Molly.
The boys also share the experience of having celiac disease.
“Celiac disease is quite a bit more common in twins than siblings in general,” says Nasha Khavari, MD, MPH, a pediatric gastroenterologist with Stanford Medicine Children’s Health. “The risk is about 10% for a child with a family history. For identical twins, it’s even higher.”
Trouble gaining weight leads to suspicion of celiac disease
When the boys went for their wellness check at age 5, their pediatrician noticed that they were not gaining weight like they should. She suspected celiac disease—an autoimmune disorder that is genetically passed on within families.
With celiac, when you eat food that contains gluten, your small intestine becomes inflamed, often causing bowel symptoms. Inflammation affects the villi lining the small intestine that digest food and absorb nutrients, which can lead to other symptoms, such as anemia, low energy, and poor growth.
“Their pediatrician advised us to take them off gluten, and we did see some weight gain after that, but the bare minimum each year. When they turned 10, we started questioning whether or not it really was celiac disease,” Molly says.
The treatment for celiac disease is adhering to a strict gluten-free diet. Gluten is found in grains, particularly wheat, barley, and rye, as well as oats that are processed in the same factory as gluten-containing grains.
“The family really wanted to get to the bottom of whether or not the boys truly had celiac disease. Instead of sticking with a ‘maybe,’ they did the gluten challenge, which was really important,” Dr. Khavari says.
Going through a gluten challenge at Stanford Children’s
The family wanted to do a gluten challenge before the boys hit a growth spurt. A gluten challenge is when you eat gluten on purpose, with medical supervision, to see if your body will produce antibodies and other signs of celiac disease. The challenge typically lasts six to eight weeks.
“We wanted to do the gluten challenge because we wanted a clear answer—you can or you can’t eat gluten,” Molly says.
To do the challenge, the family came to the Center for Pediatric Inflammatory Bowel Disease (IBD) and Celiac Disease at Stanford Children’s. The multispecialty, comprehensive center provides all-around care from gastroenterologists who focus on inflammatory diseases, as well as support from specially trained dietitians, psychologists, nurse practitioners, social workers, and pharmacists.
“At Stanford Children’s, we care for the whole child—their medical needs, their nutrition, their growth, and their psychosocial needs. And everything we do is based in science and evidence-based research,” Dr. Khavari says.
Early on in the gluten challenge, Joseph tested positive for gluten antibodies, meaning that his immune system saw gluten as an enemy and was ramping up to attack it. For a while, it looked like the twins might split ways for once. Devlin wasn’t showing early signs of celiac disease.
“Joseph looked sick. He had a gray pallor and bags under his eyes,” Molly says. “When he told us he had the ‘yawning disease’ and that he didn’t like pastries and bread, we knew he likely had celiac.”
Diagnosing celiac disease
Celiac disease is diagnosed from a health history, a physical exam, and one or more tests. The gold standard in North America for diagnosing celiac disease is an upper endoscopy. An endoscope (a small camera the size of a pen) is placed in a child’s mouth and snaked to the small intestine, where high-definition photos and video are taken, along with a biopsy (a small tissue sample) of the small intestine.
Stanford Children’s follows both the North American guidelines and the European guidelines for diagnosing celiac disease. The European guidelines do not require an endoscopy and biopsy for diagnosis.
“With the European guidelines, if you see two celiac markers reach a certain benchmark, then you can diagnose without endoscopy. We never want to push a family to do an endoscopy if they are not comfortable, so we use both guidelines in our practice,” says Alison Kotzen, MSN, RN, C-PNP, a physician assistant with the Celiac Disease program.
Honoring families where they are at with celiac disease
Some children do not tolerate anesthesia well, so being able to provide an alternative to endoscopy is vital.
“Sometimes an endoscopy is really necessary and important for diagnosing celiac disease. Yet, because we also follow the certified European guidelines, we can better meet families where they are at,” Dr. Khavari says.
For families who already have a strong suspicion of celiac disease and who have reservations about the endoscopy, following both standards is ideal.
“I appreciated that Stanford Children’s didn’t pressure me and say, ‘You really should do an endoscopy.’ Instead, they honored the boys’ other results, like high blood test numbers,” Molly says.
By the end of the gluten challenge, Devlin followed suit with his brother Joseph. He was diagnosed with celiac disease using the European guidelines.
“Devlin’s antibodies ended up off the charts, something like 15 times the European guidelines,” Molly adds.
Providing psychological care and interdisciplinary appointments
The Celiac Disease program at Stanford Children’s also helps parents and children cope with the feelings that can come with a celiac diagnosis. The program has a dedicated clinical psychologist who works with children and families individually, and with children in groups.
“Families are glad to have someone to talk to about all of the aspects of life that celiac disease can touch. When you have celiac disease, you have to advocate for yourself, and that can be hard for some kids to do, so we provide a lot of skill building along with emotional support,” Kotzen says.
The Celiac Disease program also offers an interdisciplinary clinic for patient families, where all caregivers come together and meet with the patient and family in a single visit. That way, parents miss less work, kids miss less school, and they can live life rather than go to several separate doctor appointments.
“It’s really important to take a holistic view of every child and family,” Dr. Khavari says. “And we think beyond the GI tract. We look at all contributing factors to decide what’s best for our patients.”
Providing tailored nutritional support
Learning a gluten-free diet isn’t easy. Gluten can hide in unexpected places, like sauces, soups, and even cornflakes. It can come disguised with different names, like “modified food starch.”
That’s why the Center for Pediatric IBD and Celiac Disease offers patient families hours of nutritional support, from one-on-one diet planning to regular check-ins—and, if needed, virtual kitchen checks to find cross-contamination. Even Molly, who is well-versed in eating gluten-free and provides a stellar gluten-free diet for her boys, learned a few things.
“For one, I learned to ask restaurants what they marinate their grilled meats in,” Molly says.
The Celiac Disease program at Stanford Children’s also helped the family adjust the boys’ school 504 plan to include celiac disease, so that the school would be extra-aware of their nutritional needs.
“We do so much more than diagnose our patients—it’s really wraparound care. To spend 90 minutes with a dietitian is really unique to our program, as is having a dietitian dedicated to our program,” Kotzen adds.
A bright, gluten-free future
Molly is proud of how well Joseph and Devlin roll with the punches of having celiac disease. They ask if something contains gluten, and if it does, they accept that without looking back. The family is happy to have a clear answer, and they’re going forward recommitted to a gluten-free lifestyle.
“I love that Stanford Children’s has a whole celiac program. They really know what’s going on, and Alison and Dr. Khavari both had time and interest to respond to my worries and questions,” Molly says. “After getting care at Stanford Children’s, I feel so much better.”
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