Non-responsive celiac disease in children on a gluten free diet

Veeraraghavan, Gopal; Therrien, Amélie; DeGroote, Maya; McKeown, Allison; Mitchell, Paul D.; Silvester, Jocelyn A.; Leffler, Daniel A.; Leichtner, Alan M.; Kelly, Ciarán P.; Dg, Weir

doi:10.3748/wjg.v27.i13.1311

Cited by 15 publications

(20 citation statements)

References 24 publications

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“…Persistent histological damage is often included in the definition, but on this criterion alone the majority of coeliac patients would be “non‐responsive” well beyond 6 months, therefore, the term typically relates to persistent symptoms. Non‐responsive coeliac disease is also common in children, with a retrospective study showing 91/616 (15%) had persistent symptoms at 6 months, with ongoing gluten ingestion (30%) or constipation (20%) the commonest causes 140 . Systematic workup identifies a cause in children and adults in most cases and patients generally improve over time.…”

Section: Non‐responsive/slowly Responsive Coeliac Disease and Refract...mentioning

confidence: 99%

“…Non-responsive coeliac disease is also common in children, with a retrospective study showing 91/616 (15%) had persistent symptoms at 6 months, with ongoing gluten ingestion (30%) or constipation (20%) the commonest causes. 140 Systematic workup identifies a cause in children and adults in most cases and patients generally improve over time. Accordingly, many favour the term "slowly responsive" disease over "non-responsive."…”

Section: Non -Re Sp Onsive/slowly Re S P On S Ive Coeliac D Is E a S ...mentioning

confidence: 99%

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Review article: Follow‐up of coeliac disease

Tye–Din

2022

Aliment Pharmacol Ther

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Coeliac disease is a lifelong immune-mediated enteropathy associated with important systemic manifestations. 1,2 A strict gluten-free diet (GFD) is the cornerstone of management but does not resolve the underlying immune cause of coeliac disease. 3 The GFD imparts a substantial treatment burden, 4 and many patients fail to achieve complete symptom or mucosal remission. As coeliac disease is associated with increased morbidity and modestly increased mortality, periodic medical follow-up is considered a crucial component of patient care [5][6][7][8] but this is compromised by the paucity of evidence to inform best-practice approaches. 9,10 As a result, real-world follow-up is often inconsistent or absent altogether. [11][12][13] For many chronic illnesses, such as type 1 diabetes, the importance of maintaining long-term follow-up to assess disease status, treatment efficacy and monitor for complications is well established in the medical community, however, for coeliac disease, this is typically not the case, even though the monitoring goals are the same. 5,6,7,8,14 For patients, the key goals of treatment are to resolve symptoms, reduce the risk of complications and achieve optimal quality of life, and for clinicians, disease remission also encompasses healing of the enteropathy. Effective models of care that leverage local medical and allied health expertise, ideally involving a gastroenterologist, dietitian and primary care provider, will support these goals but willThe Handling Editor for this article was Professor Peter Gibson, and it was accepted for publication after full peer-review.

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Section: Non‐responsive/slowly Responsive Coeliac Disease and Refract...mentioning

confidence: 99%

Section: Non -Re Sp Onsive/slowly Re S P On S Ive Coeliac D Is E a S ...mentioning

confidence: 99%

Review article: Follow‐up of coeliac disease

Tye–Din

2022

Aliment Pharmacol Ther

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“…JPGN • Volume 75, Number 5, November 2022 Treatment for Non-responsive Celiac Disease in Children persistent symptoms despite adherence to a strict GFD for 6 months to 1 year (1), and up to 19% have persistent enteropathy (Marsh 3a-c) after nearly 2 years on a GFD (1,6,7). RCD is rare in children with few case reports published (8).…”

Section: What Is Newmentioning

confidence: 99%

“…Most cases of NRCD are thought to occur due to inadvertent gluten exposure (1,3). Previous study suggests that many patients with NRCD are unknowingly exposed to trace amounts of gluten in their diet (1,9).…”

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confidence: 99%

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Budesonide and the Gluten Containing Elimination Diet as Treatments for Non‐responsive Celiac Disease in Children

Ibrahim

Kenyon

Fasano

et al. 2022

J. pediatr. gastroenterol. nutr.

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Objectives: Non-responsive celiac disease (NRCD) is defined as patients having persistent symptoms and enteropathy (Marsh 3 histology) suggestive of active celiac disease (CeD), after following a gluten-free diet (GFD) for at least 12 months. NRCD is suggested to affect 15% of children with CeD but data are limited and there is no research to date describing treatment of children with this condition. The aim of this study was to describe our center's approach to identifying and treating NRCD with budesonide and the Gluten Containing Elimination Diet (GCED). Methods: We performed a retrospective, single center analysis over a 5-year period of patients with CD less than 18 years of age (inclusive) who underwent treatment for persistent symptoms and enteropathy despite following a GFD. Results: We identified 22 patients with NRCD. Thirteen were treated with the GCED for 3 months with 46% achieving both histological and symptomatic resolution. Nine patients were treated with budesonide (6-9 mg), with 89% achieving both symptomatic and histologic resolution after a median 3-month treatment course. Further, 67% of patients who responded to the GCED and 100% of patients who responded to budesonide remained in remission for at least 6 months following treatment transition back to exclusive GFD. Conclusions:The GCED and budesonide can provide benefit for NRCD. Most patients with NRCD can return to a GFD after 3 months of treatment.

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Evolution in coeliac disease diagnosis and management

Tye‐Din

2024

JGH Open

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The traditional gut‐centric view of coeliac disease is evolving as immune and genetic insights underscore the central importance of a systemic, T cell immune response to gluten in disease pathogenesis. As the field increasingly recognize the limitations of small intestinal histology as the diagnostic standard, data supporting the accuracy of an immune (serologic) diagnosis of coeliac disease ‐ well demonstrated in children ‐ are growing for adults. Novel biomarkers such as interleukin‐2 that identify the gluten‐specific T cell demonstrate high sensitivity and specificity for coeliac disease and offer the potential for a diagnostic approach that avoids the need for gluten challenge. Asymptomatic disease and manifestations outside the gut pose considerable challenges for diagnosis using a case‐finding strategy and enthusiasm for population screening is growing. The gluten‐free diet remains a highly restrictive treatment and there is a paucity of controlled data to inform a safe gluten intake threshold. Ongoing symptoms and enteropathy are common and require systematic evaluation. Slowly‐responsive disease is prevalent in the older patient diagnosed with coeliac disease, and super‐sensitivity to gluten is an emerging concept that may explain many cases of nonresponsive disease. While there is great interest in developing novel therapies for coeliac disease, no drug has yet been registered. Efficacy studies are generally assessing drugs in patients with treated coeliac disease who undergo gluten challenge or in patients with nonresponsive disease; however, substantial questions remain around specific endpoints relevant for patients, clinicians and regulatory agencies and optimal trial design. Novel immune tools are providing informative readouts for clinical trials and are now shaping their design.

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Non-responsive celiac disease in children on a gluten free diet

Cited by 15 publications

References 24 publications

Review article: Follow‐up of coeliac disease

Review article: Follow‐up of coeliac disease

Budesonide and the Gluten Containing Elimination Diet as Treatments for Non‐responsive Celiac Disease in Children

Evolution in coeliac disease diagnosis and management

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