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Adherence to gluten-free diet and follow-up of pediatric celiac disease patients, during childhood and after transition to adult care

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Abstract

Long-term data on pediatric celiac disease (CD) patients after transition to adult care is scarce. We aimed to evaluate patients’ adherence to a gluten-free diet (GFD), the normalization of celiac serology and the frequency of follow-up before age 18, and to study changes in adherence and follow-up frequency after transition to adult care. Presenting symptoms, serology and biopsy results, patients’ reported GFD adherence, frequency of follow-up visits, and complications before and after 18 years were collected for CD patients diagnosed between 1998 and 2017. Of 441 CD patients diagnosed and followed in childhood, a quarter (108/441) were over 18 y (years) at data collection. Median age at diagnosis 7.1 y (9 months–18 y), at data collection 23 y (18–38 y), disease duration 11.3 y (2–36 y). Below the age of 18 y, most patients 386/436 (88.5%) reported adherence to GFD, and most 372/425 (85.7%) normalized serology. Of the 441 patients, only 3 failed to attend any follow-up visit, and 338/441 (76.6%) attended yearly visits. Over the age 18 y, serology testing was done in 78/108 (72.2%), every 1–3 y in 46/78 (59%). Serology normalized in 61/78 (78.2%). Most adult patients 77/108 (71.5%) never attended a gastroenterology clinic. CD-related complications were rare. Younger age at diagnosis, regular follow-up visits in childhood, resolution of symptoms, and normalization of serology before age 18 were identified as predictors of negative serology after the age of 18 y.

Conclusions: Children who have regular follow-up and normalize serology before age 18 years are likely to maintain a GFD and have negative serology as adults.

What is Known:

• The rate of adherence to gluten-free diet (GFD) is higher among children compared to adults.

• Data on long-term follow-up after transition to adult care is scarce.

What is New:

• Patients diagnosed with CD at a younger age (<12 y), who have yearly follow-up visits, resolution of symptoms, and negative serology in childhood are very likely to maintain GFD and have negative serology as adults.

• Even though most patients do not attend GI clinics after transition to adulthood, most adhere to GFD, and complications are rare.

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Data availability

N/A.

Abbreviations

CD:

Celiac disease

GFD:

Gluten-free diet

y:

Years

References

  1. Kelly C, Bai J, Liu E et al (2015) Advances in diagnosis and management of coeliac disease. Gastroenterology 148:1175–1186

    Article  CAS  Google Scholar 

  2. Husby S, Koletzko S, Korponay-Szabo IR et al (2012) European Society for Pediatric Gastroenterology, Hepatology, and Nutrition guidelines for the diagnosis of coeliac disease. J Pediatr Gastroenterol Nutr 54:136–160

    Article  CAS  Google Scholar 

  3. Charalampopoulos D, Panayiotou J, Chouliaras G, Zellos A, Kyritsi E, Roma E (2013) Determinants of adherence to gluten-free diet in Greek children with coeliac disease: a cross-sectional study. Eur J Clin Nutr 67:615–619

    Article  CAS  Google Scholar 

  4. Jadresin O, Misak Z, Sanja K et al (2008) Compliance with gluten-free diet in children with coeliac disease. J Pediatr Gastroenterol Nutr 47:344–348

    Article  CAS  Google Scholar 

  5. Fabiani E, Taccari LM, Ratsch IM et al (2000) Compliance with gluten-free diet in adolescents with screening-detected coeliac disease: a 5-year follow-up study. J Pediatr 136:841–843

    Article  CAS  Google Scholar 

  6. Barnea L, Mozer-Glassberg Y, Hojsak I, Hartman C, Shamir R (2014) Pediatric coeliac disease patients who are lost to follow-up have a poorly controlled disease. Digestion 90:248–253

    Article  Google Scholar 

  7. Kivela L, Popp A, Arvola T et al (2018) Long-term health and treatment outcomes in adult coeliac disease patients diagnosed by screening in childhood. United European Gastroenterology Journal Vol. 6(7):1022–1031

    Article  Google Scholar 

  8. Kaukinen K, Sulkanen S, Maki M et al (2002) IgA-class transglutaminase antibodies in evaluating the efficacy of gluten-free diet in coeliac disease. Eur J Gastroenterol Hepatol 4:311–315

    Article  Google Scholar 

  9. Comino I, Segura V, Ortigosa L, Espín B, Castillejo G, Garrote JA, Sierra C, Millán A, Ribes-Koninckx C, Román E, Rodríguez-Herrera A, Díaz J, Silvester JA, Cebolla Á, Sousa C (2019) Prospective longitudinal study: use of faecal gluten immunogenic peptides to monitor children diagnosed with coeliac disease during transition to a gluten-free diet. Aliment Pharmacol Ther. 49(12):1484–1492

    Article  CAS  Google Scholar 

  10. Valitutti F, Trovato CM, Montuori M, Cucchiara S (2017) Pediatric coeliac disease: follow-up in the spotlight. Adv Nutr 8:356–361

    Article  Google Scholar 

  11. Bebb JR, Lawson A, Knight T et al (2006) Long-term follow-up of coeliac disease—what do coeliac patients want? Aliment Pharmacol Ther 23:827–831

    Article  CAS  Google Scholar 

  12. Mulder CJ, Wierdsma NJ, Berkenpas M, Jacobs MAJM, Bouma G (2015) Preventing complications in coeliac disease: our experience with managing adult coeliac disease. Best Pract Res Clin Gastroenterol 29:459–468

    Article  CAS  Google Scholar 

  13. Husby S, Bai JC, Follow-up of coeliac disease (2019) Gastroenterol Clin North Am. Mar 48(1):127–136

    Google Scholar 

  14. Ludvigsson JF, Agreus L, Ciacci C, Crowe SE, Geller MG, Green PH et al (2016) Transition from childhood to adulthood in coeliac disease: the Prague consensus report. Gut 65:1242–1251

    Article  Google Scholar 

  15. Husby S, Koletzko S, Korponay-Szabo IR et al (2020) European Society Paediatric Gastroenterology, Hepatology and Nutrition guidelines for diagnosing coeliac disease 2019. J Pediatr Gastroenterol Nutr 70:141–156

  16. Cohen ME, Jaffe A, Strauch CB, Lewis SK, Lebwohl B, Green PHR (2018) Determinants of follow-up care for patients with coeliac disease. J Clin Gastroenterol 52:784–788

  17. Bardella MT, Molteni N, Prampolini L, Giunta AM, Baldassarri AR, Morganti D, Bianchi PA (1994) Need for follow-up in coeliac disease. Arch Dis Child 70:211–213, Need for follow up in coeliac disease

  18. Richter JC, Netzer P, Cottagnoud P, Stucki A (2006) Testing strategies and follow-up for coeliac disease in a general internal medicine outpatient department from 2000 to 2005. Swiss Med Wkly 136:732–738

    PubMed  Google Scholar 

  19. Mozer-Glassberg Y, Zevit N, Rosenbach Y, Hartman C, Morgenstern S, Shamir R (2011) Follow-Up of children with coeliac disease – Lost in Translation? Digestion 83:283–287

    Article  Google Scholar 

  20. Pekki H, Kaukinen K, Ilus T et al (2018) Long-term follow-up in adults with coeliac disease: Predictors and effect on health outcomes. Dig Liver Dis 50(11):1189–1194

    Article  Google Scholar 

  21. Ughey JJ, Ray BK, Lee AR et al. (2017) Self-reported dietary adherence, disease specific symptoms, and quality of life are associated with healthcare provider follow-up in coeliac disease. BMC Gastroenterol. Dec 11;17(1):156

  22. Reilly R, Hammer ML, Ludvigsson JF, Green PH (2020) Frequency and predictors of successful transition of care for young adults with childhood celiac disease. J Pediatr Gastroenterol Nutr 70:190–194

    Article  Google Scholar 

  23. Zingone F, Massa S, Malamisura B et al. (2018) Coeliac disease: factors affecting the transition and a practical tool for the transition to adult healthcare. United European Gastroenterol J.;6(9):1356-1362

  24. Norsa L, Branchi F, Bravo M et al (2018) Coeliac disease 30 years after diagnosis: struggling with gluten free adherence or gaining gluten tolerance? J of Ped Gastroenterology and Nutrition. Sep 67(3):361–366

    Google Scholar 

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Acknowledgements

The authors would like to thank Dr. Noam Zevit, Institute of Gastroenterology, Nutrition and Liver Diseases, Schneider Children’s Medical Center, for his critical reading of the manuscript.

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Authors and Affiliations

  1. Pediatric Gastroenterology, Kaplan Medical Center, P.O.B 1, 76100, Rehovot, Israel

    Michal Kori & Chani Topf-Olivestone

  2. Department of Pediatrics, Kaplan Medical Center, Rehovot, Israel

    Sivan Goldstein

  3. Department of Nutrition, Kaplan Medical Center, Rehovot, Israel

    Lilach Hofi

Authors
  1. Michal Kori
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  2. Sivan Goldstein
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  3. Lilach Hofi
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  4. Chani Topf-Olivestone
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Contributions

Michal Kori: conceptualization and design of the study, data analysis and interpretation, drafting and critical review of the manuscript, and approval of the final manuscript. Sivan Goldstein: data collection, analysis and interpretation, drafting of the manuscript, approval of the final manuscript. Lilch Hofi: data management, analysis and interpretation, critical review of the manuscript, approval of the final manuscript. Chani Topf-Olivestone data analysis, interpretation and critical review of the manuscript, approval of the final manuscript

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Correspondence to Michal Kori.

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The authors declare that they have no conflict of interest.

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Approval for data collection was granted by Kaplan Medical Center’s ethical committee.

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Communicated by Nicole Ritz

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Kori, M., Goldstein, S., Hofi, L. et al. Adherence to gluten-free diet and follow-up of pediatric celiac disease patients, during childhood and after transition to adult care. Eur J Pediatr 180, 1817–1823 (2021). https://doi.org/10.1007/s00431-021-03939-x

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  • DOI: https://doi.org/10.1007/s00431-021-03939-x

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