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Gastroenterology

Managing Short Bowel Syndrome & Intestinal Failure

Sirine Belaid, M.D., created a new curriculum to teach residents how to manage the complexities of SBS and IF in pediatric patients.

When Sirine Belaid, M.D., was a fellow at University of Pittsburgh Medical Center, she noticed a problem with the management of patients with short bowel syndrome (SBS) and intestinal failure (IF)—residents had little confidence in caring for patients with these conditions. This was understandable—these patients have highly complex needs, and residents, being new in the profession, are still learning. Plus, they didn’t have the proper training. “I didn’t blame them because at that point in time there was no curriculum in place basically to help in the care of these patients,” said Belaid, who’s now an attending gastroenterologist at Children’s of Alabama and an assistant professor at the University of Alabama at Birmingham (UAB). She decided to address the problem by creating a curriculum herself.

“I wanted them to ease their insecurities and their fear and make them confident and comfortable in taking care of these kids,” she said.

Belaid created and implemented the curriculum during her fellowship in Pittsburgh before joining Children’s and UAB in August 2025. Since arriving, she has begun to implement the program for fellows in Birmingham and aims to do the same for residents. Her study on its effectiveness was published in early 2026.

When she started the project, Belaid aimed to create a curriculum that addressed complexities associated with SBS and IF. Patients with these conditions, she said, present with three key challenges: unique anatomy, required devices, and potential complications.

IF is often caused by SBS, which can occur in children in two ways—either they’re born with it or they develop it following surgical complications. The condition leaves them with a shortened small intestine or other anatomical changes that affect their ability to absorb nutrients. As a result, they’re dependent on parenteral nutrition through a central line that provides lipids, carbohydrates, and all the other nutrients they need to grow and, in some cases, survive. Patients often have gastrostomy tubes, jejunostomy tubes or stomas. These enteral tubes, central lines and the patients’ anatomical differences can predispose them to complications, such as ostomy prolapse or necrosis, gastrojejunostomy tube dislodgement, line dislodgment, or line infection.

For untrained residents and other providers, these complexities can be daunting. In some cases, their lack of understanding can lead to misdiagnosis. “I’ve had so many kids who see primary care providers with fever, and they have their central line, and [the providers] just say, ‘Well, it could just be a virus. Just go home,’” Belaid said. But if the child is actually suffering from a central line infection, that’s a mistake that could prove fatal, she added.

Historically, patients with IF rarely survived into adulthood, and many did not survive childhood. But thanks to the emergence of better treatment options in recent years, more patients with SBS and IF are surviving and thriving. “We are seeing more and more of these kids—they are becoming a growing population,” Belaid said. “And so we need to have our residents ready to manage the kids, especially when they come in the [emergency department].”

For Belaid, this underscored the urgency for developing a curriculum. And the job was the perfect marriage of her two passions: intestinal rehabilitation and education. So when she discovered the problem during her fellowship, she began doing research to see how she could address it.

Belaid started by asking the residents to fill out a needs assessment survey to determine in which areas they needed the most help. It revealed their confidence level in certain tasks along with their preferred education materials. Using this data, Belaid created a five-month curriculum divided into three parts:

  • In-person lecture – This lasted 45-50 minutes and summarized the most common topics related to intestinal rehabilitation while allowing for interactive discussions.
  • Total parenteral nutrition (TPN) workshops – Each week, Belaid presented two cases designed to help residents understand various parts of the TPN process, with the residents performing these tasks more independently as they progressed through the curriculum.
  • Quick-reference survival guide – Belaid created a guide residents could keep in their pockets or save digitally that summarizes key points and how to handle emergencies.

After residents completed the curriculum, Belaid asked them to fill out another survey to determine their progress. It showed that the curriculum significantly improved resident confidence across nearly every assessed skill, and it increased appreciation for the educational value of caring for patients with SBS and IF. Residents also gave excellent feedback on the curriculum.

Now, Belaid is working to replicate the process at Children’s and UAB. In the meantime, she’s sharing her successful strategies with other gastroenterologists across the country. She has presented her research at the North American Society for Pediatric Gastroenterology, Hepatology & Nutrition (NASPGHAN) Annual Meeting, the American Society for Parenteral and Enteral Nutrition (ASPEN) conference, and other events. “I’m really hoping to disseminate this curriculum nationally,” she said. “That’s my goal.” She believes her approach can be effective for other specialties, as well.

In the process, she hopes her work will encourage more residents to pursue a career in intestinal rehabilitation, just as she was inspired to do during her own residency when she was first exposed to the complex needs of patients with IF. She says she discovered the profound satisfaction of helping children wean off parenteral nutrition and eventually have their central lines removed, allowing them to swim, run, and enjoy the everyday experiences of childhood. “Everything began during my residency at the University of Iowa Health Care, where my mentor, Dr. Riad Rahhal, first sparked my interest in intestinal rehabilitation. His guidance and mentorship shaped my passion for the field and ultimately influenced my career path, for which I am deeply grateful,” she said. “I just fell in love with it and with the patients and their parents. And seeing the joy on their face when their kid is finally without a line, without anything—it’s pure joy.”

Gastroenterology

Revival of Split-Liver Transplant Program Expands Access to Organs

Marcos Pozo Jatem, M.D. (left), and Saulat Sheikh, MBBS (right), performed a split-liver transplant in the fall of 2025.

By Charles Buchanan

Infants and children needing liver transplants face a unique challenge: The number of available donor organs, which is already limited, dwindles even further for them because most donated livers are simply too big to fit their small bodies. That can mean a long wait for a transplant and greater frustration for families.

Now Children’s of Alabama and the University of Alabama at Birmingham (UAB) are collaborating to offer split-liver transplantation, a potentially game-changing, life-saving solution for these young patients. Split-liver transplantation is “an opportunity to help two patients with one organ,” said Stephanie Saaybi, M.D., a pediatric gastroenterologist at Children’s who is part of the liver transplant team. During the complex procedure, one liver from a deceased donor is divided between two recipients, with the smaller left lobe usually going to a pediatric patient while the larger right lobe is reserved for an adult patient. Each segment grows along with its recipient and serves as a normally functioning organ, Saaybi said.

In the fall of 2025, surgeons from Children’s and the UAB Division of Transplantation successfully performed the intricate operation for the first time in nearly a decade. Fewer than 50 medical centers in the United States offer split-liver transplantation, and Children’s, partnering with UAB, is the only one in Alabama. Reviving the procedure is both a major milestone and an important step toward expanding access to donated organs for infants and children on the liver transplant waitlist.

Split-liver transplantation also helps fulfill a need for more treatment options for more patients with liver diseases. “We want to serve the whole spectrum of acuity and severity,” Saaybi said. According to the American Liver Foundation, approximately 15,000 children across the country are hospitalized for liver diseases annually. About half of pediatric liver transplants result from biliary atresia, a condition in which blocked ducts cause bile to build up in the liver and damage it, Saaybi explained. Other frequent diagnoses in the Children’s liver transplant program, which receives referrals from across Alabama and neighboring states, include acute and chronic liver failure causes such as genetic disorders, autoimmune liver disease, cholestatic disease, metabolic dysfunction-associated liver disease, and liver malignancies such as hepatoblastoma, among other conditions.

Split-liver transplantation is rare because planning and orchestrating each one is a logistical feat. For the 2025 procedure, the donor operation took place in another state, and the liver segments were transplanted into recipients at both Children’s and another institution, as determined by the national transplant allocation program and surgeons. A successful outcome depends upon precise timing and coordination of several operations at different hospitals and the contributions of a multidisciplinary, multi-institutional medical, nursing, and administrative team. Saaybi is one of two pediatric gastroenterologists specializing in transplant hepatology who are part of the Children’s/UAB partnership, along with surgeons, coordinators, anesthesiologists, nephrologists, interventional radiologists, and pediatric intensive care unit staff. Because transplant surgery impacts every aspect of life—for the patient’s entire life—the team also includes pharmacists, dietitians, social workers, child life specialists, psychologists, and even a school liaison. Marcos Pozo Jatem, M.D., a transplant surgeon, leads the Pediatric Liver Transplant Program at Children’s.

A core group of specialists representing the larger team meets regularly to coordinate each patient’s evaluation, transplantation surgery, and postoperative care through the transition to adult care. “Our discussions give us opportunities to learn from one another and explore ways to better serve patients,” Saaybi said. For example, the group implemented an intraoperative dialysis protocol so that they could perform transplants in critically ill patients—a project that has improved care and yielded positive outcomes, she added. The specialists also standardized their immunosuppressive protocols and continue to review and revise guidelines and procedures as needed.

Another advancement critical to the success of split-liver transplantation is the use of machine perfusion technology, which pumps blood continuously through the donated liver and lengthens the amount of time the organ can stay alive outside the body. As a result, Children’s and UAB can accept a donated liver from anywhere in the country while reducing its exposure to cold storage, thus preserving the organ’s viability.

With the team, expertise, and technology in place, split-liver transplantation at Children’s and UAB is poised to help more infants and children stop waiting and start thriving. “We initially see patients at their most vulnerable,” Saaybi says. “It’s humbling to be with them through the whole continuum of care, and a blessing to watch them change and grow—to get them to the point where they talk about things like playing baseball or going to college. This is their new chance at life.”

Gastroenterology

Helping heart patients with swallowing and feeding problems

At Children’s, a multidisciplinary team cares for heart patients with swallowing and feeding problems. (Stock photo)

Within days of being born with hypoplastic left heart syndrome, or HLHS, in early 2025, “James” underwent life-saving surgery to reconfigure blood flow so the right ventricle of his underdeveloped heart could pump blood to his little body. Unsurprisingly, the newborn had trouble swallowing and building the endurance needed to feed by mouth. In swooped skilled clinicians from the Dysphagia Clinic at Children’s of Alabama, who worked with James and his parents to determine the safest, most optimal feeding strategy for him after discharge.

The baby—now heading toward his first birthday and doing well—exemplifies the value of the Dysphagia Clinic’s multidisciplinary approach. The clinic previously existed in other capacities at Children’s but coalesced in January 2025 after the arrival of physician assistant Alex Clifton, PA-C, who runs the once-weekly, full-day clinic, seeing about 10 patients each week. Clifton works closely with speech language pathologist Kristen Kirkland, MCD, CCC-SLP, along with several other speech clinicians who rotate to cover the clinic.

Leaders with the Children’s of Alabama Aerodigestive Program created the Dysphagia Clinic to address the feeding and nutrition needs of babies with congenital heart disease as well as babies followed within the Aerodigestive Program who need close support from the gastroenterology, nutrition and speech therapy teams. In the clinic, patients receive medical and speech therapy perspectives, along with nutrition support. Kelly Trumbull, a registered dietitian with the Children’s Clinical Nutrition team, is embedded in the clinic.

The cardiac portion of the program was designed to address the previous gap of multidisciplinary, outpatient feeding care for babies with congenital heart disease. The team cares for these patients using the pediatric feeding disorder framework, addressing medical, nutritional, skill and psychosocial needs. Cardiologists, pulmonologists, otolaryngologists and pediatric surgeons collaborate with the clinic on this effort.

“We long wanted to fill a local void in this type of care for these heart patients,” said Rachel Kassel, M.D., Ph.D., a pediatric gastroenterologist with the Aerodigestive Program. “Buy-in from the University of Alabama at Birmingham (UAB) Department of Pediatrics, the Children’s Hearing and Speech team and the Children’s Nutrition team—paired with having a team of passionate individuals in the Dysphagia Clinic—has improved outpatient feeding and nutrition care for babies with complex congenital heart disease.”

Congenital heart disease encompasses a set of conditions that greatly predispose a baby to feeding and swallowing difficulties. These problems occur in pediatric heart patients in several ways: either by compressing the esophagus or vessels; through nerve damage; or from rapid breathing and fatigue in infants that can disrupt the coordination of sucking, swallowing and breathing. Their cases can also be complicated by vocal cord paralysis, ECMO treatment or the need for intubation.

Clifton and Kirkland estimate that perhaps 70% of pediatric cardiac surgery patients deal with some component of feeding difficulty or aspiration. “Many pediatric GI programs in outlying communities refer to us, so we’re often the last step in the region for these complex kids,” Clifton said.

Clifton also sees patients in the Children’s GI clinic, addressing challenges with formula tolerance, advancing diet, and any other feeding issues. Additionally, she refers patients to the aerodigestive team, which treats children with overlapping problems involving the airway, lungs and upper digestive tract. In the Dysphagia Clinic, Clifton and Kirkland are often joined by nutrition specialists and other speech clinicians, and they also consult with social work and lactation professionals as needed.

“It’s helpful to have multiple disciplines looking at a child with complex medical problems,” Clifton said. “Every kiddo is different.”

Kirkland works closely with patients’ parents and caregivers to help them look for feeding stress cues in infants as well as signs of aspiration. She helps align the child’s individual challenges—which can also include aversion to oral feeding—with the needs of the family, often employing feeding tubes to fill the gap in nourishment. Other interventions can involve thickening formula, adjusting feeding utensils or bottles, and prescribing medications to help with reflux, nausea or appetite.

“Some babies associate eating with negative past experiences such as frequent emesis or overall GI discomfort or intolerance,” Kirkland explained. “And malnutrition alone makes them less likely to eat, because they tend to fatigue earlier.”     

All of these issues can affect a patient’s ability to lead a normal life, even down the road. But Kirkland and Clifton are doing their best to smooth the path forward.

“Feeding is a very emotional experience for a lot of families. It’s also something that families just expect to occur—that everyone can eat and swallow and enjoy those experiences,” Kirkland said. “While they’re inpatient, we’re trying to get them home, and in clinic, we’re focused on the long-term goals of how this will shape their future.”

The Dysphagia Clinic strongly complements and reinforces the care these cardiac patients are getting at Children’s, Clifton said. “We’re looking at the big picture,” she said, “and making sure they get all the resources they need—the individual parts that might otherwise get forgotten or overlooked.”

Gastroenterology

Expanding to Improve Patient Care

To improve patient care, the Children’s Division of Gastroenterology, Hepatology and Nutrition has added six new faculty members.

When Sandeep Gupta, M.D., arrived at Children’s of Alabama and the University of Alabama at Birmingham (UAB) as chief of the Division of Pediatric Gastroenterology, Hepatology and Nutrition in 2023, he immediately recognized the need for expansion. So, not long after his arrival, he embarked on the mission to grow his team. Within the last year-and-a-half, he has welcomed six new faculty, and they’re already making a difference in the way the division serves its patients.

For Gupta, that was the objective—providing better patient care. It’s a large undertaking considering Children’s massive catchment area—the entire state of Alabama along with surrounding states. “Every disease state we have is in the hundreds,” he said. “And the doctors we had in those areas were just one or two.”

Intestinal rehabilitation, or ‘short gut,’ is a good example. It’s a complex issue affecting more than 160 of the team’s patients. But previously, only one doctor was available to serve them. With inflammatory bowel disease (IBD), the team had two doctors for more than 400 patients. The math was similar for patients with liver issues. “There was such a need to bring [new hires] in to just serve what we have,” Gupta said. “We were simply to trying keep our heads above water.”

To address these issues, Gupta began the process of expanding the division in September 2024, making all of the new hires over the course of the next year. In the case of IBD, the expansion was transformative. That group now has two new clinicians, Rahmath Althaf, D.O., and Maggie Vickers, M.D., and a basic scientist, Babajide Ojo, Ph.D. “Now, what we have is basically a team that goes from bench to bedside,” Gupta said. “We are starting studies where we are collecting samples from patients in the clinic, and then [Ojo] is processing these in the lab to do the studies. And with the discoveries he will make, we can then bring the knowledge back to the bedside.”

It’s an “ecosystem” that Gupta believes has not existed in gastroenterology at Children’s. The team has study coordinators and is part of national consortia. “So basically, we are creating a self-dependent and interdependent team of itself that can grow on its own,” he said.

Gupta aspires to create the same setup for intestinal rehabilitation. In the meantime, care is already improving. With Sirine Belaid, M.D., joining the team, the division now has two doctors to treat these patients, allowing them to see inpatients twice each week instead of once. “So now we are able to better serve the people more intentionally, more mindfully,” Gupta said.

Gupta also added liver doctors in David Willcutts, M.D., and Stephanie Saaybi, M.D., who “will helps us grow the liver team further,” he said.

Perhaps the most salient sign of the team’s success so far is this: patients who once had no choice but to go hundreds of miles away for treatment are now able to stay in Alabama for their care. “They are now being sent back to us by the doctors, who are saying, ‘Hey, UAB has a great program—go back there, you don’t need to come see us anymore,’” Gupta said. “So that has been very fulfilling that people are recognizing we are ace-ing our game here.”

With changes of this magnitude, Gupta believes the division can start to move from excellence to eminence, which was another of his goals when he first arrived.

New hires since September 2024

Rahmath Althaf, D.O., an assistant professor, earned her medical degree from the Touro College of Osteopathic Medicine. She completed her residency in general pediatrics at the Medical College of Georgia and her pediatric gastroenterology fellowship at UAB. Her research and clinical interests include IBD and intestinal ultrasound.

Sirine Belaid, M.D., an assistant professor, earned her medical degree from the University of Pittsburgh. She completed her residency in general pediatrics at the University of Iowa Stead Family’s Children’s Hospital and her pediatric gastroenterology fellowship at the University of Pittsburgh Medical Center.

Babajide Ojo, Ph.D., an assistant professor, earned his doctoral degree in nutritional sciences from Oklahoma State University. He completed his postdoctoral research at Stanford University School of Medicine. He received the NIH MOSAIC K99/R00 award in 2023. His research interests include using patient-derived intestinal organoids and murine models to determine how the environment (dietary components, therapies) shapes epithelial metabolism and differentiation in intestinal health and inflammatory bowel diseases.

Stephanie Saaybi, M.D., an assistant professor, earned her medical degree from the American University of Beirut in Lebanon. She completed her residency in general pediatrics at MedStar Georgetown University and her pediatric gastroenterology fellowship at UAB. She completed an additional fellowship in pediatric advanced hepatology and liver transplant at Northwestern University.

Maggie Vickers, M.D., an assistant professor, earned her medical degree from UAB. She completed her residency in general pediatrics and her pediatric gastroenterology fellowship at the Le Bonheur Children’s Hospital, St Jude Children’s Research Hospital and Regional One Health. Her clinical interests include general gastroenterology, nutrition and inflammatory bowel disease.

David Willcutts, M.D., an assistant professor, earned his medical degree from the University of Texas Southwestern Medical Center, where he also completed his residency in pediatrics and his pediatric gastroenterology fellowship. He completed an additional fellowship in pediatric advanced hepatology and liver transplant at the University of Colorado.

Gastroenterology

A high-tech approach to improving IBD treatment

When Children’s of Alabama associate scientist Babajide Ojo, MS, Ph.D., was completing his doctoral degree at Oklahoma State University, one of his peers had a child with Crohn’s disease. Ojo was so struck by the burden of the condition and its treatment on the child and his classmate—who eventually had to drop out of the program—that he decided his research must focus on inflammatory bowel disease (IBD), which includes Crohn’s and ulcerative colitis.

“I realized there were ways to manage the disease but no cure, so I thought it could be a great opportunity to contribute to this field and find better ways to treat it,” said Ojo, who’s also an assistant professor of pediatrics in the Division of Gastroenterology, Hepatology, and Nutrition at the University of Alabama at Birmingham (UAB).

Five years later—and a year after he arrived at Children’s—Ojo has already made an impact, using a newer, high-tech method to tease apart why IBD starts and what makes it flare in hopes of optimizing ways to control it. While most IBD treatments concentrate on calming the immune system, they don’t often lead to long-term remission, especially in children. So Ojo and his colleagues are looking at a different piece of the puzzle: the epithelium, or lining of the gut, which is important in IBD but often overlooked in research.

“The field right now solely focuses on the immune component of the disease,” he said. “But the data indicates that a lot of patients lose response to medications over time. For us, I think focusing on the epithelium may help us discover a kind of treatment that can elongate remission in these patients.”

Ojo is using a cutting-edge approach called patient biopsy-derived organoids—tiny 3D models grown from patient tissue—to watch how gut stem cells grow and become different kinds of cells that comprise the gut lining. By doing this, he hopes to understand how this process differs in people with IBD.

“Among the models we have, organoids may be one of the perfect ones to study the epithelium,” Ojo said, noting that few other pediatric centers use human-derived organoids for research. “Because each one represents the molecular features of each patient, it may be a way of developing personalized treatments.”

Based on his organoid research, Ojo and his colleagues published findings in December 2025 in Nature Communications suggesting that blocking a key fat-control protein helped epithelium cells in children with ulcerative colitis to burn energy more normally, reduce stress and calm inflammation. The results indicate that fat metabolism problems in colon cells are a major contributor to ulcerative colitis, potentially pointing toward new treatment approaches.

By identifying epithelial-specific “control points” central to IBD, Ojo hopes therapies can be developed that, if they don’t work for all patients, could be used specifically in pediatric patients.

“This may supplement some of the immunotherapies on the market to help us help them achieve long-term remission,” he said. “If we don’t improve how we treat patients, IBD is really a lifelong disease. We hope to make it much more manageable and reduce their constant visits to clinic, if not eliminate them totally.”

Gastroenterology

New technology eases management of liver disease

Children’s of Alabama is using FibroScan to help patients with liver disease. (Stock photo)

With obesity in children steadily rising, more young patients are coming to Children’s of Alabama with a form of fatty liver disease that can greatly imperil their health. But determining the progression of liver disease can be a thorny process. To smooth that path, Children’s recently invested in an increasingly popular technology called FibroScan, helping University of Alabama at Birmingham (UAB) pediatric physicians to deftly and comprehensively manage children’s care.

Using a technique known as transient elastography, FibroScan was the first FDA-approved device of its kind and is considered an aid to managing liver disease. Quick, noninvasive and painless, it uses an enhanced form of ultrasound to send vibrations into the liver to measure its stiffness, which typically indicates fibrosis or scarring. “The more quickly the wave passes through the liver, the more stiff the liver is,” Children’s transplant hepatologist David Willcutts, M.D., explained.

By assessing the severity of scarring—and the potential for cirrhosis—FibroScan can help diagnose or monitor the progression of various liver conditions. These range from less-common cystic fibrosis-associated liver disease to more-prevalent autoimmune liver diseases and metabolic dysfunction-associated steatotic liver disease (MASLD). The latter—which can also result from genetic predisposition—essentially makes the liver unable to process the high amounts of extra calories a person is consuming, spurring inflammation.

David Willcutts, M.D.

About one-third of the patients in Children’s Hepatology Clinic, which serves about 500 ongoing patients each year, have suspected or confirmed fatty liver disease.

“We will be using this for almost every patient with confirmed fatty liver disease, so we can measure the baseline stiffness of the liver when they first see us,” said Willcutts, who’s also an assistant professor of pediatrics at UAB. “The machine also provides a CAP (controlled attenuation parameter) score as a surrogate of fat content of the liver, which is useful for the growing numbers of adults—and unfortunately, children—in our country with fatty liver disease. It’s one of the rising conditions leading to adult liver transplants.”

FibroScan is a welcome alternative to invasive liver biopsies and other forms of elastography that require a separate radiology appointment. A FibroScan exam takes just minutes, offering little disruption for young patients and faster treatment decisions for physicians. The new equipment arrived in the summer of 2025.  

“One of the big selling points of this technology is it makes the patient experience much easier because it can be done within a clinic visit and will save them a visit with radiology, which involves a separate appointment elsewhere in the hospital or even at another Children’s facility,” Willcutts said. “It’s a one-stop kind of assessment.”

By keeping close tabs on a patient’s liver stiffness, FibroScan offers Children’s specialists the ability to understand “how much runway we have before we need to do potentially invasive assessments and other therapies,” Willcutts said.

While the goal is always to avert lasting damage to the liver, the presence of cirrhosis is generally thought to be irreversible. FibroScan can help doctors pinpoint “how close we’re getting to that and if the patient needs a biopsy—or a repeat biopsy—to evaluate scarring at the microscopic level and make sure we’re not missing something before it’s too late to act upon it,” he explained.

FibroScan results can also help physicians tailor treatments to patients’ precise stage of liver damage, including certain medications that can be tricky for the liver to process.

“Children’s is a referral center for pediatric liver disease in Alabama because we’re the only liver transplant center in the state,” Willcutts said. “Being able to offer FibroScan helps us elevate our level of care and offer smoother visits and a convenient assessment of liver disease that we didn’t have before.”

Gastroenterology

Children’s of Alabama Celiac Disease Clinic Growing to Meet Rising Demand

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.

Gastroenterology

New technology improves diagnosis of esophageal conditions

The Children’s gastroenterology team began using Endoflip in the fall of 2024.

Diagnosing esophageal disorders in pediatric patients presents a number of challenges for both providers and patients. The diagnostic tools typically used in the past often caused discomfort for the patient and made diagnosis difficult. Thanks to the addition of a new technology, Children’s of Alabama is able to circumvent these issues to streamline the process for both sides.

In the fall of 2024, Children’s began using an endoluminal functional lumen imaging probe, also known as EndoFlip. It’s a device that evaluates esophageal distensibility under general anesthesia during endoscopy to provide important insights for patients with conditions like dysphagia, eosinophilic esophagitis (EoE), and post-surgical complications. Clinicians have been using this on adult patients since 2009, but it was FDA approved for children 5 and older in the last few years, and at least one study suggests it’s also safe for patients even younger. In pediatric patients, who often struggle with conventional methods, the use of anesthesia significantly reduces stress and discomfort for both children and their families.

“For conditions like EoE, where esophageal inflammation and reduced distensibility are common, this tool bridges the diagnostic gap,” said Diana Montoya Melo, M.D., a pediatric gastroenterologist at Children’s. “We can now identify abnormalities that were previously undetectable, leading to timely and effective interventions.”

EndoFlip is particularly beneficial for patients with swallowing difficulties. By measuring esophageal distensibility, physicians can detect subtle functional issues that may not be evident with endoscopy or other imaging studies. For instance, patients with EoE often present with swallowing challenges despite minimal inflammation.

EndoFlip also helps physicians identify areas of reduced esophageal diameter, guiding therapeutic interventions such as esophageal dilation. This can lead to immediate symptom relief and dramatically improve a patient’s quality of life. “We can identify abnormalities we couldn’t before, like areas of decreased distensibility, and address them with esophageal dilation — fixing symptoms immediately in some cases,” Montoya Melo said.

The technology also helps evaluate post-surgical complications in patients with congenital esophageal anomalies, such as tracheoesophageal fistula. By pinpointing areas of reduced distensibility, EndoFlip helps ensure accurate diagnoses and effective management plans.

For Children’s clinicians, introducing EndoFlip into existing diagnostic workflows has streamlined the patient management process. Combining it with endoscopy has enabled physicians to save time and resources, avoiding the need for multiple procedures. “It only adds about five to seven minutes to the procedure, yet it provides critical information that can prevent unnecessary repeat evaluations,” Montoya Melo said.

Patients also benefit from reduced hospital visits, fewer diagnostic tests, and faster resolutions to their symptoms. Also, EndoFlip’s ability to guide precise interventions eliminates the trial-and-error approach, saving both time and health care resources.

“The biggest advantage for families is being able to get information similar to esophageal manometry while the patients are sedated during endoscopy,” Montoya Melo said. “This avoids the discomfort of a transnasal catheter procedure while awake.”

Gastroenterology

Nasogastric tube replacement at home

In April 2024, Children’s began offering training for families on how to replace nasogastric tubes at home. (File photo)

More than 100 children and adolescents are sent home from the inpatient setting at Children’s of Alabama every year with a nasogastric (NG) tube. Often, it’s a way to postpone or avoid surgically implanted tubes. The problem is that the tube can get out of place or the child pulls it out—sometimes multiple times a day. When that happens, caregivers have to return to Children’s—which can be an hours-long drive—or go a closer emergency room that may not be able to replace the tube. 

To reduce the strain on caregivers, Children’s began a one-hour training program in April 2024 to teach caregivers how to replace NG tubes at home. 

The curriculum is based on the NOVEL (New Opportunities for Verification of Enteral Tube Location) project, which established best practices for pediatric NG tube placement. The program primarily serves children of all ages.

Since it launched, nurses have trained more than 20 families through the gastrointestinal service alone, with more caregivers taught via other hospital departments. Caregivers practice on mannequins but must then demonstrate they can safely place the tube in the child before they are discharged on home NG care. “There’s no emotion involved in the model,” said pediatric gastroenterologist Rachel Kassel, M.D., Ph.D., who championed the program for years, “but there is on one’s own child.”

“They’re nervous about it, obviously,” said Kelli Anderson, RN, the GI care coordinator at Children’s, who trains nurses and other clinicians to provide the education. “But after we go through the steps on the mannequin and they do it and then they do it on their own child, they’re like, ‘Oh, that wasn’t as hard as I thought it was going to be.'”

“This offers us the ability to decrease the use of surgical tubes, and it reduces the number of trips a family has to take outside of their home,” Kassel said. “While there’s always some risk, it can be made safest by having nurses teach best practices.” Risks include putting the tube in the lungs, high in the esophagus, or in the small bowel. To date, however, there have been no complications with the families trained.

Caregivers learn techniques to keep squirming babies still during insertion, usually by swaddling or having another person gently hold the child’s arms. They’re also taught to verify proper tube placement via pH testing of stomach contents. To date, there are 13 nurses and nurse practitioners, as well as Kassel, providing training.

For many parents, the hardest part is psychological. “Just kind of getting the tube to go initially, to get it past the nasal cavity, that’s biggest thing that they have problems with,” Anderson said. “They’re afraid they’re going to hurt the child.”

Some families ultimately decide the home care option isn’t right for them. “We’ve had the experience of bringing the model in for some families and going through the training where they said, ‘I’m not comfortable doing this,'” Kassel said. “We totally respect that. We’ve also had cases where one parent is comfortable but the other is not, or grandma is comfortable but the parents are not. That’s also fine.” The team also assesses patients and their caregivers to determine if they qualify for NG tubes and/or home replacement, with strict guidelines for selecting the appropriate families.

The program provides bilingual training in Spanish and English and can accommodate non-literate caregivers. 

Early results suggest the program is achieving its goal of reducing emergency room visits and long trips for medical facilities. 

“It’s letting us provide much more family-centered care,” Kassel said. 

Gastroenterology

Cavender to lead new polyposis clinic

A new polyposis clinic, led by pediatric gastroenterologist Cary Cavender, M.D., is aimed at enhancing pediatric gastrointestinal care.

As the medical landscape evolves, so does the need for specialized care, particularly in areas that impact vulnerable populations. Successfully managing gastrointestinal issues in children can be extremely challenging, but a new clinic at Children’s of Alabama and the University of Alabama at Birmingham (UAB) will soon provide a hub of specialized care.

The Children’s of Alabama Polyposis Clinic was conceived to fill a crucial gap in pediatric gastroenterology. Recognizing the need to provide focused expertise and coordinated care for patients with polyposis syndromes “was the major impetus for establishing a dedicated clinic,” pediatric gastroenterologist Cary Cavender, M.D., said.

Scheduled to open in early 2024, the clinic will initially operate on a quarterly basis. To best serve patients, many of whom are at increased risk for cancer, the clinic will integrate with members of the oncology team specializing in cancer predisposition. Among their other duties, oncology team members will coordinate genetic counseling for high-risk patients at the Oncology Cancer Predisposition Clinic, ensuring families receive comprehensive support.

The new polyposis clinic will also offer advanced diagnostic and treatment procedures, including advanced endoscopy and colonoscopy techniques like pill cam endoscopy, as well as medication management. Cavender anticipates seeing approximately 15 to 20 patients at first each year, with potential growth as awareness increases. “Our patients need routine monitoring and early and more frequent colonoscopies to ensure they stay as healthy as possible. Since many of these diseases have genetic components, many families with these types of GI issues are already tuned in and aware of the need for consistent screening,” said Cavender, who’s also a professor of pediatrics at UAB. “We’ll make those services available to everyone in one convenient location.”

Polyposis syndromes, particularly familial adenomatous polyposis (FAP), present unique challenges. Cavender notes the varied penetrance of the FAP gene within families, and emphasizes the importance of early screening. The clinic’s services will extend beyond diagnostics to include treatments such as sulindac, a medication inhibiting polyp growth, administered orally for patient convenience.

The polyposis clinic stands out as a unique endeavor—one of the first of its kind in the Southeast. Cavender believes it will serve as a vital resource, offering top-tier care for children with polyposis syndromes. With a focus on early detection and a multidisciplinary approach, the clinic aims to provide families with a path forward, instilling confidence in managing these complex conditions. “Early detection makes all the difference for kids with these conditions. Our clinic will enable us to offer the most advanced procedures and genetic testing to identify problems early. Our focus means we’re on the cutting edge of delivering care,” Cavender said.

Cavender’s vision for the clinic extends beyond medical interventions to fostering awareness among health care providers and ensuring that every child in need finds a dedicated and expert team ready to guide them toward a healthier future. “Some of our health system doctors might not even know there are pediatric GI specialists that can help take care of this type of thing,” Cavender said. “Providing a path forward through the clinic will help patients and families navigate these complex GI syndromes successfully.”