John Sands, M.D., leads the Celiac Disease Clinic at Children’s of Alabama.
Celiac disease is an autoimmune gastrointestinal disease that affects between 1% and 4% of the population. It is triggered by gluten, found in wheat, barley, rye and triticale (a mix of wheat and rye). Its incidence in children is increasing dramatically, with one study showing a 165% increase between 1994 and 2014, although recent studies suggest the incidence increase may have plateaued.[1],[2]
John Sands, M.D., who runs the Celiac Disease Clinic at Children’s of Alabama, is well aware of the increasing numbers, given the clinic’s own growth. In 2023, the clinic had 109 patient encounters. By 2024, that number had doubled to 221. Halfway through 2025, clinic staff had already had 157 patient encounters, on track for another record year. It’s gone from a monthly clinic to one that now meets three half days a month at different locations and times to make it more accessible to families.
The rising incidence in celiac disease is thought to be due to a combination of improved disease recognition and diagnostic testing, Sands said, as well as a true rise in the disorder itself. “Theories are that the increase is driven by environmental and lifestyle factors,” he said, including dietary changes and processed foods. Disruption of the intestinal barrier from viral infections and alterations in the gut microbiome (intestinal dysbiosis) are also being investigated as potential contributors in genetically susceptible individuals.
The core of celiac disease lies with a genetic mutation. But what’s puzzling is that while about 40% of the world’s population has the gene, only between 1% and 4% develop the disease, Sands said. “And probably half of those don’t realize that they’ve got celiac disease.” Most likely, he said environmental factors activate the gene.
More Than Stomach Problems
Many people misunderstand celiac disease, thinking it only causes digestive issues. “Celiac disease is not just belly pains,” Sands said. The condition can cause serious long-term health problems if left untreated, including bone loss, increased risk of heart disease, fertility issues and certain types of lymphomas.
The disease frequently appears alongside other autoimmune conditions. “There’s a triad of autoimmune diseases that tend to cluster together,” Sands said: Type 1 diabetes (T1DM), autoimmune thyroid disease and celiac disease.
In fact, many referrals to the clinic come from endocrinologists who treat children with T1DM and routinely screen for celiac disease. “It’s not uncommon for us to see those kids without any GI symptoms at all,” Sands said. Another clue the child may have celiac is poor growth. “It’s also not unusual for this to get picked up with kids who are shorter than we would predict them to be based on their parents’ height. You do the bloodwork for celiac disease and even though they have no GI symptoms, they have it.”
The Challenge of Living Gluten Free
The only treatment for celiac disease is strict, lifelong avoidance of gluten. This goes far beyond avoiding obvious sources like bread and pasta.
“Gluten is not just in food,” Sands said. “It’s all over the place. It’s in sunscreens. It’s in lip balm, it’s in shampoo, it’s in conditioners, it’s in Play-Doh.”
Following a gluten-free diet is not only challenging but expensive. He recalled one family with a child who had celiac disease that wanted the entire family to eat gluten free since the logistics of living gluten free would be easier for all than for one. But they couldn’t afford it,” he said. “A loaf of gluten-free bread can be six dollars.”
A Team Approach
The clinic’s core is its multidisciplinary approach. “One of the beauties of a celiac clinic is I have a registered dietitian,” Sands said, something that isn’t available to general pediatricians. The clinic also provides something else many doctors can’t offer: time.
“A general pediatrician is scheduling patients every eight to 10 minutes,” he said. “I’m setting up 40-minute slots and frequently spending longer than that with the patients and family.”
The clinic also participates in research efforts, including a collaborative study with Washington University examining immune changes in celiac disease progression.
Moving forward, Sands would like to provide more education about the disease for regional primary care clinicians, as well as patients and their families.
For now, he’s thrilled to be able to provide this specialized care, particularly since he follows his patients long term. “These are kids I get to know and see over and over again, and even watch go off to college.”
[1] Absah I, Patel B, Murray J, et al. Increasing Incidence and Altered Presentation in a Population-based Study of Pediatric Celiac Disease in North America. J Ped Gastro Nutr. 2017; 65 (432–437).
[2] VanNess GH, Ismail Y, Lee AT, King KS, Murray JA, Absah I. Are we beyond the peak of celiac disease incidence in Olmsted County, Minnesota, USA?. Gastroenterology and Functional Medicine. 2024 Dec 27;2.