Beyond a Gluten-Free Diet: The Need for a New Clinical Approach to Celiac Disease

Celiac disease (CeD) is widely regarded as a condition that can be effectively managed with a gluten-free diet. However, this characterization may underestimate the persistent burden of chronic fatigue, extraintestinal inflammation and pain, cognitive symptoms such as brain fog, and other manifestations that can persist despite dietary adherence. With no approved pharmacotherapies, there is a need for more integrated, multidisciplinary approaches to replace currently fragmented clinical pathways.^1-7 

Recent findings further challenge the notion that CeD is adequately managed through dietary intervention alone. A Swedish population-based cohort study reported that patients with biopsy-confirmed CeD have nearly a 3-fold higher risk for organ failure or solid organ transplant and a 7-fold increased risk for liver transplant.⁷The researchers followed patients for an average of 12 years.⁷ While the pathophysiological mechanisms linking CeD and end-stage organ failure are not yet clear, the authors also reported higher rates of comorbid nonceliac autoimmune diseases at baseline.⁷  

[T]he impression that their <a href="https://healthylife7.com/1-healthcare-stock-with-solid-fundamentals-and-2-we-brush-off/” title=”1 Healthcare Stock with Solid Fundamentals and 2 We Brush Off”>healthcare provider feels they are ‘not smart’ was reported more commonly in CeD patients

Patients Report Being “Dismissed,” “Disrespected,” “Unheard”

Beyond its physical burden, CeD may also be associated with suboptimal patient experiences within the health care system. In a cross-sectional study, patients with CeD in the United States reported more frequent doctor and specialist contact than others but were also significantly more likely to report feeling dismissed, disrespected, and unheard during clinical encounters.¹  

“Despite having higher levels of educational attainment compared to non-CeD [control individuals], participants with CeD reveal feeling more dismissed and undermined in both their treatment and in their understanding,” the study authors noted.¹ “[I]ndeed, the impression that their healthcare provider feels they are ‘not smart’ was reported more commonly in CeD patients.”

These findings echo previous calls for more integrated models of care, improved clinician-patient communication, and stronger relationships in managing CeD.^3,4  

The authors analyzed data from the National Institutes of Health’s All of Us patient cohort repository, including data for 1816 patients with CeD and 9080 control individuals, matching each patient with CeD with up to 5 control individuals without a CeD diagnosis by age, sex, ethnicity, and genetic similarities.¹  

Compared with control individuals, patients with CeD were less likely to report that their health care professional (HCP) “never” acted as though they were superior (48.5% vs 54.7%), more likely to report that their HCP failed to listen (30.1% vs 35.1%), or behaved as if the patient was “not smart” (53.9% vs 58.8%). In multivariable analysis, patients with CeD remained significantly more likely to report feeling that their clinician viewed them as “not smart” (odds ratio [OR], 1.10; 95% CI, 1.03-1.10; P =.006).¹  

Persistent Fatigue and Functional Burden Extend Beyond the Gut

The analysis also identified fatigue as one of the most prominent clinical concerns among patients with CeD, representing the strongest association in multivariable analysis (OR, 1.19; 95% CI, 1.11-1.27; P <.0001).¹ Fatigue has a complex and multifactorial etiology that includes chronic inflammation and nutritional deficiencies associated with atrophied intestinal villi, the study authors noted.¹ It can persist even after patients adopt a gluten-free diet and is associated with depression and impaired quality of life.¹ These findings support incorporating routine fatigue screening and functional health assessments into clinical practice to track how well treatment strategies work.¹  

Addressing Disparities Through Comprehensive Care

The study also highlights the influence of socioeconomic factors on both diagnosis and disease management. Patients with lower incomes were more likely to present with diarrhea, although the investigators suggested this finding may reflect underdiagnosis among lower socioeconomic populations presenting with nonclassical symptoms.¹ Patients with CeD were more likely than control individuals to have advanced educational attainment and middle- or upper-income status.¹

“This may reflect both disparities in health care access and diagnostic biases,” the authors suggest, with patients from marginalized demographic groups facing more structural barriers to diagnosis and care.¹Potentially consistent with that view, they found that health insurance policies that were accepted vs denied were associated with greater odds of a diagnosis of CeD.¹

The analysis also confirms that CeD involves often-unacknowledged functional costs that can remain invisible to clinicians if they don’t explicitly ask. Patients were more likely than matched control individuals to report difficulty with basic daily activities like dressing or bathing (P =.0324), less frequently reported being able to carry out daily activities “completely” (P =.007), and were more likely to be retired or unable to work (P<.0001).¹ 

Overall, the findings “underscore the value of developing a more holistic framework for the management of CeD,” the investigators concluded, calling for “personalized and equitable care strategies” informed by an appreciation for those disparities and how negative health care interactions can affect patient well-being.¹

1. Anil B, Govrin J, Kongcao D, et al.Disability and health care interactions in patients with celiac disease in the United States: an analysis of All of Us Cohort. J Clin Gastroenterol.Published online January 22, 2026. doi:10.1097/MCG.0000000000002324
2. Dochat C, Afari N, Satherley RM, Coburn S, McBeth JF.Celiac disease symptom profiles and their relationship to gluten-free diet adherence, mental health, and quality of life.BMC Gastroenterol.2024;24:9. doi:10.1186/s12876-023-03101
3. Kerbage A, Jansson-Knodell C, Weekley K, Gardinier D, Rubio-Tapia A.High-quality nutritional and medical care in celiac disease follow-up.Nutrients. 2025;17(22):3530. doi:10.3390/nu17223530
4. Al-Toma A, Zingone F, Branchi F, et al.European Society for the Study of Coeliac Disease 2025 updated guidelines on the diagnosis and management of coeliac disease in adults. Part 1: diagnostic approach.Unit Euro Gastroenterol J.2025;13(10):1855-1886. doi:10.1002/ueg2.70119
5. Kurppa K, Mulder CJ, Stordal K, Kaukinen K.Celiac disease affects 1% of global population: who will manage all these patients?Gastroenterology.2024;167(1):148-158. doi:10.1053/j.gastro.2023.12.026
6. Wheeler M, David AL, Kennedy J, Knight M.“I sort of never felt like I should be worried about it or that I could be worried about it’ an interpretative phenomenological analysis of perceived barriers to disclosure by young people with coeliac disease.Br J Health Psychol.2022;27(4):1296-1313. doi:10.1111/bjhp.12599
7. Doyle JB, Lebwohl B, Soderling J, et al.Risk of solid organ transplantation in individuals with celiac disease: a nationwide cohort study.Clin Gastroenterol Hepatol. Published online May 28, 2026. doi:10.1016/j.cgh.2026.04.034