“Just Eat More Fibre!” May Not be the Case for People with Celiac Disease
April 22, 2026
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By Alyssa Ramuscak, RD Celiac Canada Research Analyst , February 24, 2026
We are excited to highlight the recent research work of Simon Gidrewicz, who presented his survey findings at the 2025 North American Society for Pediatric Gastroenterology, Hepatology and Nutrition Annual Meeting in Chicago. His conference poster shines a spotlight on a topic that clinicians, families, and teens alike know all too well: the real-world challenges adolescents face when living with celiac disease.
Adherence to a gluten-free diet remains one of the most significant challenges for adolescents with celiac disease, with adherence rates as low as 23% in some studies (1). Adolescence, a critical developmental period, is often marked by a decline in gluten-free diet adherence due to multiple social, psychological, and practical barriers (2–9). Research has shown that teens with celiac disease may experience:
To explore this further, Simon conducted a research project that surveyed 134 Canadian adolescents, 12 to 18 years old, to understand their lived experiences. Through the online survey, Simon’s research explored two key questions:
Diagnostic delays are common
Nearly half (45.6%) of adolescents reported experiencing symptoms for two years or longer before receiving a diagnosis of celiac disease. In contrast, 54.4% reported being diagnosed within two years of symptom onset.
This finding highlights a persistent issue: despite growing awareness of celiac disease, many teens continue to experience prolonged periods of symptoms before diagnosis. These delays can have significant physical consequences, including impaired growth.
The data suggests that more work is needed to improve recognition among healthcare providers of the varied symptoms adolescents may present with to prevent delayed celiac disease diagnosis.
Atypical, neurological symptoms, were frequently reported.
In addition to adolescents reporting high rates of gastrointestinal symptoms such as constipation, bloating or gas, abdominal pain or cramping, and poor weight gain or growth, the survey revealed that many adolescents also experienced neurological or psychological symptoms prior to diagnosis:
These findings reinforce what clinicians are increasingly recognizing: celiac disease does not always present in a “classic” gastrointestinal pattern. Neurological and mental health symptoms may be prominent.
Accidental gluten exposure and social exclusion drive non-adherence.
When asked about challenges with maintaining a gluten-free diet, adolescents most commonly cited
Cross-contamination, unclear food labelling, and limited celiac-safe options can make strict adherence difficult.
In addition, the emotional cost of the gluten-free diet can be substantial. School lunches, birthday parties, sport tournaments, and spontaneous outings with friends often revolves around food. For teens, navigating these social experiences can feel isolating.
Over one-third of teens would abandon their gluten-free diet if they felt no symptoms
One of the most thought-provoking questions, “If you did not have symptoms, would you eat gluten? Yes or No” revealed that 39% of teens would eat gluten if they experienced no symptoms.
This response highlights a critical misconception. Unlike many conditions where symptoms directly correlate with disease activity, the consumptions of gluten in celiac disease may cause silent, ongoing intestinal damage even in the absence of symptoms.
By addressing misconceptions early, healthcare providers and families can help teens understand that following a gluten-free diet is not just about avoiding uncomfortable symptoms, but also about protecting long-term health.
The findings from Simon’s work highlight the need for continued support and advocacy to improve the long-term wellbeing of adolescents living with celiac disease. Specifically, these findings suggest several areas for improvement:
Adolescents’ voices are important! Simon’s survey findings are a reminder to healthcare providers, parents, and other adults who support teens, that managing celiac disease is not just about avoiding gluten; it’s about addressing the broader developmental, emotional, and social context in which teens live.
To learn more about Simon’s conference poster, check out the Journal of Pediatric Gastroenterology and Nutrition Report: Gidrewicz S, King J, Gidrewicz D. 759 Understanding Celiac Disease in Adolescents: A Survey Exploring Challenges in Diagnosis and Adherence to the Gluten-Free Diet. JPGN Rep, 2025. 6:S692. https://doi.org/10.1002/jpr3.70080
References
1. Myléus A, Reilly NR, Green PHR. Rate, Risk Factors, and Outcomes of Nonadherence in Pediatric Patients With Celiac Disease: A Systematic Review. Clinical Gastroenterology and Hepatology. W.B. Saunders; 2020. p. 562–73. doi:10.1016/j.cgh.2019.05.046 PubMed PMID: 31173891.
2. Dowd AJ, Jung ME. Self-compassion directly and indirectly predicts dietary adherence and quality of life among adults with celiac disease. Appetite. 2017 Jun 1;113:293–300. doi:10.1016/j.appet.2017.02.023 PubMed PMID: 28223238.
3. Ludvigsson JF, Roy A, Lebwohl B, Green PHR, Emilsson L. Anxiety and depression in caregivers of individuals with celiac disease — A population-based study. Digestive and Liver Disease. 2017 Mar 1;49(3):273–9. doi:10.1016/j.dld.2016.11.006 PubMed PMID: 27923553.
4. Clappison E, Hadjivassiliou M, Zis P. Psychiatric manifestations of coeliac disease, a systematic review and meta-analysis. Nutrients. MDPI AG; 2020. doi:10.3390/nu12010142 PubMed PMID: 31947912.
5. Coburn SS, Puppa EL, Blanchard S. Psychological comorbidities in childhood celiac disease: A systematic review. Journal of Pediatric Gastroenterology and Nutrition. Lippincott Williams and Wilkins; 2019. p. E25–33. doi:10.1097/MPG.0000000000002407 PubMed PMID: 31149937.
6. Coburn S, Rose M, Sady M, Parker M, Suslovic W, Weisbrod V, et al. Mental Health Disorders and Psychosocial Distress in Pediatric Celiac Disease. J Pediatr Gastroenterol Nutr. 2020 May 1;70(5):608–14. doi:10.1097/MPG.0000000000002605 PubMed PMID: 31880669.
7. Ho WHJ, Atkinson EL, David AL. Examining the Psychosocial Well-Being of Children and Adolescents with Coeliac Disease: A Systematic Review. Journal of Pediatric Gastroenterology and Nutrition. Lippincott Williams and Wilkins; 2023. p. E1–14. doi:10.1097/MPG.0000000000003652 PubMed PMID: 36573999.
8. Mearns ES, Taylor A, Boulanger T, Craig KJ, Gerber M, Leffler DA, et al. Systematic Literature Review of the Economic Burden of Celiac Disease. Pharmacoeconomics. 2019 Jan 17;37(1):45–61. doi:10.1007/s40273-018-0707-5
9. Zarkadas M, Dubois S, Macisaac K, Cantin I, Rashid M, Roberts KC, et al. Living with coeliac disease and a gluten-free diet: A Canadian perspective. Journal of Human Nutrition and Dietetics. 2013 Feb;26(1):10–23. doi:10.1111/j.1365-277X.2012.01288.x PubMed PMID: 23157646.
10. Lee A, Wolf R, Lebwohl B, Ciaccio E, Green P. Persistent Economic Burden of the Gluten Free Diet. Nutrients. 2019 Feb 14;11(2):399. doi:10.3390/nu11020399
11. Wolf RL, Lebwohl B, Lee AR, Zybert P, Reilly NR, Cadenhead J, et al. Hypervigilance to a Gluten-Free Diet and Decreased Quality of Life in Teenagers and Adults with Celiac Disease. Dig Dis Sci. 2018 Jun 1;63(6):1438–48. doi:10.1007/s10620-018-4936-4 PubMed PMID: 29387990.
12. Russo C, Wolf RL, Leichter HJ, Lee AR, Reilly NR, Zybert P, et al. Impact of a Child’s Celiac Disease Diagnosis and Management on the Family. Dig Dis Sci. 2020 Oct 1;65(10):2959–69. doi:10.1007/s10620-020-06316-0 PubMed PMID: 32415563.
13. Wolf RL, Lebwohl B, Lee AR, Reilly NR, Cadenhead JW, Amengual C, et al. Lower Quality of Life and Energy in Adults and Teenagers with Celiac Disease are Associated with Greater Adherence and Knowledge About the Gluten-Free Diet. Gastroenterology. 2017 Apr;152(5):S159. doi:10.1016/s0016-5085(17)30852-1
14. Cederborg AC, Hultman E, Magnusson KF. Living with children who have coeliac disease: A parental perspective. Child Care Health Dev. 2012 Jul;38(4):484–9. doi:10.1111/j.1365-2214.2011.01273.x PubMed PMID: 21752060.
15. Celiac Canada. State of Celiac Survey Results: The rising challenges of living with celiac disease in Canada A report from [Internet]. 2024 [cited 2024 Oct 25]. Report. Available from: https://celiac.rain-digital.ca/state-of-celiac/
16. Olsson C, Lyon P, Hörnell A, Ivarsson A, Sydner YM. Food that makes you different: The stigma experienced by adolescents with celiac disease. Qual Health Res. 2009;19(7):976–84. doi:10.1177/1049732309338722 PubMed PMID: 19556403.
17. Meyer S, Rosenblum S. Daily experiences and challenges among children and adolescents with celiac disease: Focus group results. J Pediatr Gastroenterol Nutr. 2018 Jan 1;66(1):58–63. doi:10.1097/MPG.0000000000001635 PubMed PMID: 28574969.
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