Category Archives: Pediatric Gastroenterology Intestinal Disorder

Does Isolated Ulcerative Proctitis Increase the Risk of Rectal Cancer?

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AH Everhov et al. Gastroenterol 2026; 171: 158-160. Open Access! Incidence of Rectal Cancer in Patients With Isolated Ulcerative Proctitis: A Population-Based Cohort Study

Methods: Using a prospective nationwide registry (SWIBREG) (1997-2023), there were 15,957 individuals diagnosed with isolated proctitis and matched to 158,079 population comparators. Median followup for patients with isolated proctitis was 10.8 years.

Key findings:

  • Rectal cancer incidence was 0.11% in patients and 0.09% in comparators at 5 years and 0.16% and 0.21%, at 10 years.
  • During follow-up, inflammation remained limited to the rectum in 60% of patients, whereas 23% developed left-sided colitis and 17% developed extensive colitis

Discussion Points:

  • “Results from this nationwide study indicate patients with isolated proctitis have no elevated rectal cancer risk with respect to the general population.”
  • “40% of patients experienced disease extension” which is similar to prior studies.
  • “European (European Crohn’s and Colitis Organisation)9 and US (American College of Gastroenterology)10 guidelines endorse standard population screening in limited-extent disease, and our data support these recommendations.”

My take: This should provide a lot of reassurance for our patients with isolated proctitis.

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Camp Weekaneatit 2026

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Last Sunday, along with my colleagues, Jeff Lewis, and Nirav Patel, I helped check in kids for Camp Weekaneeatit! (glutenfreecamp.org). This is a gluten-free camp for youth with ​Celiac Disease and ​Gluten Intolerance. This year’s staff shirt was “S’more Fun Without Gluten;” though, I elected to wear my T-shirt from 2018.

The camp was started more than 15 years ago by my partners, Dr. Jeff Lewis and Dr. Bill Meyers.

The camp is located just north of Atlanta at Ft Yargo (Winder, Georgia). The ~125 participants come from all over the U.S including Texas, Michigan, Ohio, Massachusetts, Colorado, Arizona, Florida, South Carolina, and Alabama. There was one kid, whose father is a marine, who flew in from Japan!

Most of the campers have come several times and have had a great experience. Here is an excerpt from a letter from a camper’s parent:

“My daughter was at camp with you this summer.  I can’t tell you how much fun she had.  She was diagnosed with celiac when she was just 2, so she has never known a world where she could just relax and be like everybody else.  Camp gave her so much freedom, and she grew so much in just one week.  Today is her birthday and her first day of school.  Her camp friends have already texted to wish her happy birthday!…This is the first time she has had friends with celiac disease — I can only imagine how much more supported that makes her feel…  I asked her what it was like to not have to ask a million questions before every bite she ate.  She said, “I felt like I didn’t even have celiac disease all week. I felt like a normal person.” 

Last year enrollment started in the middle of November for summer 2026. Space is limited!

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Eosinophilic Esophagitis: Aerodigestive Disease Perspective

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TA Temtem, K Liu, KL Kennedy, BD Gold. Pediatr Gastroenterol Nutr. 2026; Online ahead of print. Eosinophilic esophagitis: An aerodigestive perspective

This review article highlights the management and high frequency of eosinophilic esophagitis in children with complex aerodigestive disease disorders. Congratulations to my colleague Dr. Benjamin Gold, one of the contributors, and our aerodigestive disease team for this publication.

Key points:

  • “Special populations such as esophageal atresia/tracheoesophageal fistula and those patients requiring laryngotracheal reconstruction (LTR) should undergo esophagogastroduodenoscopy with biopsies to evaluate for EoE, even in absence of typical symptoms”
  • “The prevalence of EoE in aerodigestive patients ranges from 3.7% to 25% (Table 1).”
  • “The clinical presentation of EoE can range from typical symptoms of feeding difficulty to atypical presentations of chronic cough, recurrent croup, hoarseness, or inflammatory consequences found at the time of airway evaluation.3, 4, 12“
  • Delays in the diagnosis of EoE for 6 years or more are common. “Studies demonstrate…a 9% increased risk of stricture for each additional year of undiagnosed EoE.”
  • “Patients undergoing LTR are also managed by aerodigestive teams and should have screening esophagogastroduodenoscopy (EGD) prior to surgery, as untreated EoE can result in graft failure.10“
  • “Management of aerodigestive patients with EoE is similar to the general population…A limitation of topical steroids is that oral is the only route of administration.”

Critique:

  • The authors note that “in a review of 251 EoE patients, 14% of the patients who were initially evaluated by otolaryngology presented with isolated airway complaints and an absence of GI symptoms.14” However, in my experience, many ENT physicians are not asking questions like ‘how long does it take your child to eat? or ‘does your child need to drink a lot of fluid to help them swallow?’
  • The authors conclude that “it is imperative for the aerodigestive clinician to recognize the range of EoE presentations and thus, with a higher index of suspicion, reduce diagnostic delay. EA/TEF patients are at high risk of EoE and should undergo routine surveillance EGD, even in the absence of symptoms.” In my experience, the threshold for arranging a triple endoscopy is quite low for the aerodigestive team. This messaging​, though, is important for patients seen outside the aerodigestive clinic.
  • There is no discussion of cost and redundancy in this article. Many aerodigestive patients, prior to going to the multispecialty clinics, already have GI, pulmonary and/or ENT physicians. Communication among their specialists could obviate the need for aerodigestive evaluation in many patients.

My take: This article provides a useful review of EoE in the aerodigestive disease population and highlights how respiratory symptoms can be the main clinical presentation.

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Atlanta Botanical Gardens

Invisible Workload of Caring for Pediatric Patients with Inflammatory Bowel Disease

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Background: “Historically, telephone calls were the primary means of communication between families and clinicians. With the widespread adoption of electronic health records (EHRs) and patient portals, asynchronous digital messaging has become increasingly common. Although these platforms may enhance access and patient engagement, evidence suggests they do not simply replace telephone encounters; instead, they may increase overall communication volume.7 Lower thresholds for initiating messages, the need for iterative clarification, and miscommunication may all contribute to this rise, raising concerns about added workload and potential clinician burnout…Understanding the timing, magnitude, and predictors of between-visit communication is essential to improving care delivery and accurately estimating workforce needs to effectively manage pediatric IBD patients.”

Methods:  From the shared electronic health record, the data from 226 patients (0 to22 years) was quantified. This included outpatient visits, emergency care, and procedures, as well as between-visit care (portal messages from patients, telephone encounters, and clinician-patient review of results) from prediagnosis through long-term follow-up.

Key findings:

  • Between-visit care rose from a median of 1 event per 6 months at time >1 year prediagnosis to 64 events in the year following diagnosis
  • After the first year following diagnosis, between-visit care was a median of 41 events per year
  • There was a strong, graded relationship between disease severity and health care utilization, with the greatest increases seen in subspecialty visits, emergency care, and between-visit care among patients with moderate to severe symptoms
The number of results review and portal message encounters relative to the time of diagnosis
This chart shows the number of telephone encounters relative to the time of diagnosis
Disease severity affects frequency of messages/phone calls.
But, these interactions are frequent even in asymptomatic patients.

Discussion Points:

  • “Even during periods of relative disease quiescence, patients generated substantial volumes of portal messages, telephone encounters, and result review requirements. These findings underscore that the longitudinal management of pediatric IBD extends far beyond scheduled clinic visits and episodic care.”
  • “This persistent care burden likely reflects the complexity of pediatric IBD management including medication titration, symptom monitoring, laboratory surveillance, comorbidity screening, insurance navigation, school-related concerns, anticipatory guidance, administrative needs, transitional readiness planning, and caregiver and patient education.11 Unlike acute care utilization, which may diminish as disease control improves, the need for ongoing communication and care appears intrinsic to chronic disease management in the pediatric IBD population.”
  • “Despite its clinical importance, between-visit care remains largely invisible in traditional utilization metrics and is frequently unreimbursed. Our findings indicate that this hidden workload is substantial, persistent, and closely tied to disease complexity rather than patient demographic factors.”

The editorial from Kellermeyer notes that this invisible care did not include “the substantial administrative workload associated with prior authorization (PA) for advanced IBD therapeutics, insurance denial management, appeals, and peer-to-peer reviews …[which] are notoriously difficult to capture in electronic health record (her) metadata.”

My take: There is a lot of behind the scenes physician work that is needed to help manage patients with inflammatory bowel disease. I suspect most families do not realize the extent of this work.

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Colic and Later Food Allergies

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K Switkowski et al. The Journal of Pediatrics, 2026; 294. Open Access! Associations of Colic and Excessive Crying in Infancy with Food Allergy Outcomes in Childhood and Adolescence

Background: The authors have previously observed “increased risks of eczema, allergic rhinitis, and asthma throughout childhood and adolescence among children with a history of infant colic compared with unaffected infants.14“

Methods: Prospective study of 1263 generally-healthy participants with parent-reported  food allergy from early childhood through mid-adolescence using multivariable logistic regression. In a subset (n = 242) with available biomarkers, the associations of colic with food-specific IgE sensitization in early childhood were examined.

Key findings:

  • “In early childhood, 10% of children in Project Viva had a food allergy reported by their mothers. Peanut or tree nut allergies were most prevalent (6%), followed by cow’s milk (4%) and egg (2.5%) allergies”
  • “Participants who had colic (25%, n=320) had a greater risk of any food allergy in early childhood than those unaffected by crying or colic (13% vs 8%; OR 1.7)”
  • “The risk of current milk and egg allergies in early childhood also was greater for those who had colic as infants vs those unaffected (OR for milk allergy: 1.8)”
  • “In early adolescence, the colic group had 2.1 times the risk of peanut allergy (8% vs 4%) vs the unaffected group”
  • “In the subset with IgE, the colic group had 2.5 times the risk of early childhood IgE sensitization to peanuts compared with the unaffected (22% vs 11%).” However, none of the other foods had significant IgE sensitization: Cow’s milk OR 0.7, Egg white OR 0.5, Wheat OR 1.1, Soy OR 1.9, Sesame OR 1.4, Any IgE sensitization OR 0.8

Discussion Points:

  • The authors “do not believe that colic itself is a cause of later food allergy but rather could be an early marker of greater risk for developing food allergy…these findings argue against characterizing colic as a benign, transient, and self-resolving condition as some have suggested.”
  • Preventive measures should be implemented. “Early and consistent exposure to potential allergens at specific critical windows of life, particularly among high-risk children, is now known to be effective in promoting allergen tolerance and preventing the development of food allergy.3“
  • Study limitations:
    • “Parent-reported food allergies [were used] to define this outcome and acknowledge that this may involve some misclassification of outcome status if parents report allergies that have not been clinically validated.” Though, in a previous study, the “overall agreement between parent-reported and clinician-documented allergy status” was 98%.
    • There was no data indicating whether food introduction in infants with colic was different than other infants.

My take: It is unclear to me whether colic (now labeled Infant Distress Syndrome) is a true risk factor for later atopic diseases. It is possible that the presence of colic could increase the use of more elemental formulas and postpone food introduction which could increase the risk of food allergies.

Related blog post: Rome V: Lower GI Tract and Biliary Disorders of Gut-Brain Interaction in Pediatrics (Part 1)

Kiawah Island, SC

Interleukin-10 Autoantibodies and Development of IBD Plus One

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N Gharahdaghi et al. N Engl J Med 2026;394: 2212-2222. Interleukin-10 Autoantibodies and HLA-DRB1*01:03 in Inflammatory Bowel Disease

Background: “The allele HLA-DRB1*01:03 is the strongest genetic risk factor not only for susceptibility to ulcerative colitis but also for complicated phenotypes, including acute severe ulcerative colitis and an increased likelihood of surgical resection.2-5 However, the underlying pathogenic mechanism linking this HLA allele to disease remains unclear.”

“Neutralizing autoantibodies against interleukin-10 can result in a phenocopy of monogenic defects of interleukin-10 signaling in children and may be associated with inflammatory bowel disease (IBD)…In one child, anti–interleukin-10 titers and disease activity responded to B-cell–depleting anti-CD20 therapy.12“

Methods:

Key findings:

  • Interleukin-10–neutralizing autoantibodies were detected in 173 of 4909 patients with IBD (3.5%) and in none of 1006 controls (P<0.001)
  • High anti–interleukin-10 activity in serum was associated with a reduction in detectable interleukin-10 and with an exaggerated proinflammatory cytokine response
  • Anti–interleukin-10 seropositivity was strongly associated with HLA-DRB1*01:03 on the basis of imputed data from the Oxford cohort (odds ratio, 50.0), the U.K. IBD BioResource cohort (odds ratio, 24.7), and in a high-resolution sequencing analysis of data from the Oxford cohort (odds ratio, 29.5)

Discussion Points:

  • “The genetic association between HLA-DRB1*01:03 and anti–interleukin-10 autoreactivity provides mechanistic insight into one of the strongest known genetic susceptibility factors for IBD, with possible diagnostic, prognostic, and therapeutic implications.”
  • “Monogenic interleukin-10–signaling defects tend to manifest during infancy with colonic and penetrating disease, poor response to IBD therapies, high inflammatory activity with notably elevated C-reactive protein levels, and a high incidence of postoperative complications.27 It will be informative to establish the extent to which anti–interleukin-10 seropositivity associates with a similar disease pattern.”
  • “Our data highlight the need for research into therapeutic maneuvers to reduce anti–interleukin-10 titers — for example, by means of B-cell and plasma-cell depletion (e.g., anti-CD19, anti-CD20, anti-CD38, or CD19 chimeric antigen receptor [CAR] T-cell therapy),29-31 plasma exchange, or blockade of the neonatal Fc receptor.32“

My take: Historically, in younger patients (6 or younger) and those with more severe inflammatory bowel disease, it has been common to evaluate for monogenetic diseases which may require different treatment approaches. For similar reasons, assessing for neutralizing autoantibodies against interleukin-10 is likely to become part of routine care.

Related study: Q Zhang Q, Shakweh E, Sharip M et al. The Lancet Gastroenterology & Hepatology, 2026; 0. Open Access! HLA-DRB1*01:03 in patients with inflammatory bowel disease: a genotype–phenotype association study Key findings:

  • Among 43,762 patients with IBD (21 839 with Crohn’s disease and 21 923 with ulcerative colitis or IBD unclassified), HLA-DRB1*01:03 carriage was observed in 2009 (4·6%) patients with IBD and associated with multiple severe outcomes …including colonic resection in patients with Crohn’s disease (odds ratio 1·35), colectomy in patients with ulcerative colitis or IBD unclassified (1·99), and perianal disease in both patients with Crohn’s disease (1·65) and patients with ulcerative colitis or IBD unclassified (1·70)

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Dr. Valeria Cohran: Short Bowel Syndrome/Intestinal Failure in Pediatrics 2026

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Recently, Dr. Valeria Cohran gave our group a terrific update on Short Bowel Syndrome (SBS)/Intestinal Failure (IF). My notes below may contain errors in transcription and in omission. Along with my notes, I have included many of her slides. Dr. Cohran has been a leader in intestinal rehabilitation. Among many accomplishments, she was the 2025 recipient of the 2025 Margaret Stallings NASPGHAN Distinguished Service Award.

Key points:

  • Most children with SBS/IF are able to taper off parenteral nutrition (PN). Even ~30% of those with extreme SBS (<10% of expected bowel length) are able to achieve enteral autonomy.
  • SBS/IF due to NEC has a generally more favorable outcome than other etiologies
  • Stoma takedown is associated with better outcomes (eg. more likely to taper off PN). (Raghu et al. JPEN. 2023;47:1047-55). Taking down stoma may be beneficial if unable to taper PN and in those developing liver disease
  • SBS/IF caretakers spend a median of 29 hrs/week managing PN, enteral nutrition, medications, and other tasks
  • In the nursery, one study reported that NICU patients with IF spent a median of 150 days and cost more than $500K
  • Overall, advances in SBS/IF management have been associated with lower death rates and lower intestinal transplant rates (~30 ITx last year), yet similar rates of achieving enteral autonomy
Overall, Group 1 SBS is least likely to achieve enteral autonomy
Intestinal length with maximal increase in first year of life
•N=362 children in over 26 centers world-wide, started 2018 (enrolled if PN >2 months)
Multi-organ effects of SBS
  • Fish oil based lipid emulsions do not always work; cirrhosis can still develop even with minimal biochemical marker alterations
  • IFALD mortality is associated with degree of conjugated hyperbilirubinemia, though we are not seeing this complication much with current management
  • GLP-2 can reduce PN requirements by more than 20% in the majority of those with SBS/IF and may help achieve enteral autonomy in about 20%. However, their use requires close monitoring for fluid overload and electrolyte disturbances
  • Lots of disparities noted along socioeconomic variables. For outpatient management, home nursing care is not available in some neighborhoods

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“Real-World” Impact of Vitamin D for Patients with Inflammatory Bowel Disease

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JA Sninsky et al. Clin Gastroenterol Hepatol 2026; 24: 1666-1674. Open Access! The Real-World Impact of Vitamin D Supplementation on Inflammatory Bowel Disease Clinical Outcomes

Methods: This was a retrospective cohort study of adult patients (n=5021) with IBD seen in the national Veterans Health Administration system from 2000 to 2023. The researchers used 3 different methods to try to determine causality of improved outcomes with supplementation of Vitamin D.

  1. “Difference-in-differences (DiD) approach to compare changes in clinical outcomes before and after vitamin D testing between patients who did and did not receive supplementation”
  2. “The regression discontinuity design leveraged the clinical threshold of 30 ng/mL serum 25-hydroxyvitamin D, comparing outcomes in patients just lower than and just higher than this cutoff, who are assumed to be otherwise similar”
  3. “The inverse probability weighting method adjusted for confounding by weighting patients based on their likelihood (propensity) of receiving vitamin D15“

Key findings:

  • The median 25-hydroxyvitamin D level was 23 ng/mL, and 41% received vitamin D supplementation
  • Vitamin D supplementation was associated with reduction in IBD-related emergency department visits by 2.17% (34.4% relative risk reduction; P = .007), hospitalizations by 2.64% (53.18% relative risk reduction; P = .003), and corticosteroid prescriptions by 1.29% (25.13% relative risk reduction; P = .066)

Discussion:

  • “Collectively, our data strongly suggest that vitamin D supplementation reduces the risk of IBD flare, underscoring its promise as an effective adjunctive therapy in clinical practice.”
  • “Vitamin D deficiency is prevalent among patients with IBD and is strongly linked to poor clinical outcomes, including higher rates of hospitalization and surgery. Patients with IBD are 64% more likely to be vitamin D deficient compared with healthy control subjects.29“
  • “Vitamin D deficiency is prevalent among patients with IBD and is strongly linked to poor clinical outcomes, including higher rates of hospitalization and surgery. Patients with IBD are 64% more likely to be vitamin D deficient compared with healthy control subjects.29“
  • “Although these findings support a strong association between vitamin D deficiency and worse clinical outcomes, they do not address whether supplementation itself mitigates the risk of adverse events, because disease severity confounds this relationship.33 Our study fills this knowledge gap and provides rigorous real-world data to support the effectiveness of vitamin D supplementation.”

My take: There have been large studies (eg. VITAL) study showing that Vitamin D supplementation does not help most people in the general population. In addition, many individuals with IBD who have low Vitamin D levels may see improvement in Vitamin D status by treating the IBD (without Vitamin D supplement). Yet, studies like this one by Sninsky indicate that Vitamin D supplementation is associated with improved outcomes in this retrospective cohort; the study methods likely indicate a causal effect of supplementation; however, a prospective randomized controlled study would be more definitive.

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Pediatric Experience with Subcutaneous Infliximab

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EH Boute et al. Inflamm Bowel Dis 2026; 32: 1086–1096. Open Access! Persistence and safety of subcutaneous infliximab up to 1 year after switching from intravenous infliximab in pediatric inflammatory bowel disease: a multicenter real-world cohort study

Methods: This was a retrospective multicenter study we identified pediatric IBD patients (n=66 including 41 with Crohn’s disease) who switched to SC-IFX. Median age 16.5 years. Pre-switch, the median IV-IFX maintenance dose was 10 mg/kg every 6 weeks. There were only 6 patients with a weight <40 kg.

Key findings:

  • The initial SC-IFX regimen was 120 mg every other week in 62/66 patients (94%).  4 patients (6%) were initiated on 120 mg every week
  • SC-IFX persistence was 78% at 12 months post-switch, with 89% of patients persisting on IFX, either intravenous (IV) or subcutaneous (SC), at the end of follow-up
  • 17% (n=11) of patients experienced relapses. 6 patients underwent dose intensification (3 regained response), 3 patients switched to a different advanced therapy, and 3 patients received concomitant therapy
  • 11 patients (17%) discontinued SC-IFX treatment after a median of 7.0 months
  • 6 patients underwent SC-IFX dose intensification, with 3 successfully regaining clinical response
  • Regarding anti-drug antibodies (ADA), 3 out of 4 patients who were ADA positive on IV-IFX resolved post-switch
  • Three patients (3/66, 5%) experienced serious AEs requiring hospitalization, namely IgA-mediated nephropathy, pyelonephritis requiring IV antibiotics, and perianal fistula requiring seton drainage

Discussion:

  • “Compared to IV-IFX, SC-IFX provides higher and more stable serum concentrations, avoiding peak-trough variability, potentially lowering immunogenicity and offering greater flexibility in TDM.”
  • “Careful monitoring by the IBD team remains essential to ensure treatment adherence during and after the switch. In our cohort, most discontinuations (64%) were related to difficulties with the SC route, highlighting the importance of identifying the most suitable candidates.”

My take: More pediatric studies are needed. This study suggests that the effectiveness of SC-IFX in children will be similar to the effectiveness in adults. As more patients receive SC therapy, it will be particularly important to work on adherence with scheduled dosing, lab monitoring, and careful followup visits; all of these can be more difficult with SC compared with IV infusions.

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