Celiac disease diagnosis still significantly delayed – Doctor's but not patients’ delay responsive for the increased total delay in women

Vavricka, Stephan R.; Vadasz, Nina; Stotz, Matthias; Lehmann, R; Studerus, Diana; Greuter, Thomas; Frei, Pascal; Zeitz, Jonas; Scharl, Michael; Misselwitz, Benjamin; Pohl, Daniel; Fried, Michael; Tutuian, Radu; Fasano, Alessio; Schoepfer, Alain; Rogler, Gerhard; Biedermann, Luc

doi:10.1016/j.dld.2016.06.016

Cited by 34 publications

(48 citation statements)

References 33 publications

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“…This might seem paradoxical, given that AAG affects women more commonly than men . However, similar results were found in other studies regarding diagnostic delay in coeliac disease . A possible explanation could be that women are more likely to suffer from functional dyspepsia; hence AAG may be overlooked by physicians.…”

Section: Discussionsupporting

confidence: 55%

“…A previous misdiagnosis was related to the longest overall median diagnostic delay (36 months). Similarly, a substantial diagnostic delay was also found in other gastrointestinal diseases, including inflammatory bowel disease and coeliac disease, in patients who had a previous diagnosis of a functional condition, namely irritable bowel syndrome. It is now broadly accepted among gastroenterologists that in patients with irritable bowel syndrome, both inflammatory bowel disease and coeliac disease must be considered in the diagnostic work‐up and ruled out .…”

Section: Discussionmentioning

confidence: 89%

“…It is now broadly accepted among gastroenterologists that in patients with irritable bowel syndrome, both inflammatory bowel disease and coeliac disease must be considered in the diagnostic work‐up and ruled out . Irritable bowel syndrome has even been considered a risk factor for greater diagnostic delay in coeliac disease . Disappointingly, in the latest guidelines for the management of dyspepsia, AAG is not mentioned, nor is a serological screening with anti‐parietal cell antibodies recommended.…”

Section: Discussionmentioning

confidence: 99%

“…Disappointingly, despite the broad availability of non‐invasive tests, serum autoantibodies and ad hoc laboratory scores, that could be useful as the first‐line screening to identify individuals who should undergo an esophagogastroduodenoscopy, there is still evidence that AAG is misdiagnosed and possibly underdiagnosed. No systematic study has ever assessed the magnitude of diagnostic delay in patients with AAG, which is known to negatively impact on other chronic, immune‐mediated, gastrointestinal disorders, including coeliac disease and inflammatory bowel disease …”

Section: Introductionmentioning

confidence: 99%

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Determinants of diagnostic delay in autoimmune atrophic gastritis

Lenti

Miceli

Cococcia

et al. 2019

Aliment Pharmacol Ther

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Background: Autoimmune atrophic gastritis (AAG) is characterised by a wide clinical spectrum that could delay its diagnosis.Aims: To quantify the diagnostic delay in patients suffering from AAG and to explore possible risk factors for longer diagnostic delay. Methods:Consecutive patients with AAG evaluated at our gastroenterological outpatient clinic between 2009 and 2018 were included. Diagnostic delay was estimated as the time lapse occurring between the appearance of the first likely symptoms, laboratory alterations, and other clues indicative of AAG and the final diagnosis.Patient-dependent and physician-dependent diagnostic delays were also assessed.Multivariable regression models were fitted.Results: 291 patients with AAG (mean age at diagnosis 61 ± 15 years; F:M ratio = 2.3:1) were included. The median overall diagnostic delay was 14 months (interquartile range [IQR] 4-41). Factors associated with longer median overall diagnostic delay were female sex (17 months, IQR 5-48), having a previous misdiagnosis (36 months, IQR 17-125) and a history of infertility/miscarriages (33 months, IQR 8-120), whereas a higher level of education was associated with longer patient-dependent diagnostic delay (4 months, IQR 1-12). First evaluation by a gastroenterologist was associated with a median longer diagnostic delay (6 months, IQR 2-15) compared to an internist (3 months, IQR 3-31) and a haematologist (1 month, IQR 0-2). Age, socioeconomic or marital status did not affect the diagnostic delay.Conclusions: AAG is burdened by substantial diagnostic delay, especially in female patients, and due to lack of awareness, particularly among gastroenterologists.Uncommon vitamin B12 deficiency-related manifestations are overlooked and may prolong the diagnostic delay.

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Section: Discussionsupporting

confidence: 55%

Section: Discussionmentioning

confidence: 89%

Section: Discussionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

See 2 more Smart Citations

Determinants of diagnostic delay in autoimmune atrophic gastritis

Lenti

Miceli

Cococcia

et al. 2019

Aliment Pharmacol Ther

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“…Demographic data of the study population have been published elsewhere: 1284 participants were female (76%), the mean age was 41.3 years (range, 0 to 92 y) with a mean age at CeD diagnosis of 31.1 years (range, 0 to 83 y), 22 and 449 patients (26.6%) were below 18 years at the time of CeD diagnosis.…”

Section: Patient Demographicsmentioning

confidence: 99%

Celiac Disease is Misdiagnosed Based on Serology Only in a Substantial Proportion of Patients

Vavricka

Stelzer

Lattmann

et al. 2018

Journal of Clinical Gastroenterology

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Background: Although the diagnostic process in celiac disease (CeD) has been addressed in several international guidelines, little is known about the actual proceeding in current clinical practice. This study investigated the initial presentation, the diagnostic process, follow-up evaluations, and adherence to a gluten-free diet in CeD patients in a real-life setting in Switzerland from a patient’s perspective. Methods: We performed a large patient survey among unselected CeD patients in Switzerland. Results: A total of 1689 patients were analyzed. The vast majority complained of both gastrointestinal and nonspecific symptoms (71.5%), whereas 1.8% reported an asymptomatic disease course. A total of 35.8% CeD patients were diagnosed by a nongastroenterologist. The diagnostic process differed between nongastroenterologists and gastroenterologists, with the latter more often using duodenal biopsy alone or in combination with serology (94.7% vs. 63.0%) and nongastroenterologists more frequently establishing the diagnosis without endoscopy (37.0% vs. 5.3%, P<0.001). Follow-up serology after 6 months was performed only in half of all patients (49.4%), whereas 69.9% had at least 1 follow-up serology within the first year after diet initiation. About 39.7% had a follow-up endoscopy with duodenal biopsies (after a median of 12 mo; range, 1 to 600 mo). The likelihood of receiving any follow-up examination was higher in patients initially diagnosed by a gastroenterologist. Conclusions: A significant proportion of CeD patients are diagnosed by nongastroenterologists. Under the diagnostic lead of the latter, more than a third of the patients receive their diagnosis on the basis of a positive serology and/or genetics only, in evident violation of current diagnostic guidelines, which may lead to an overdiagnosis of this entity.

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The US Preventive Services Task Force Recommendation on Screening for Asymptomatic Celiac Disease

Choung

Murray

2017

JAMA

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Celiac disease diagnosis still significantly delayed – Doctor's but not patients’ delay responsive for the increased total delay in women

Cited by 34 publications

References 33 publications

Determinants of diagnostic delay in autoimmune atrophic gastritis

Determinants of diagnostic delay in autoimmune atrophic gastritis

Celiac Disease is Misdiagnosed Based on Serology Only in a Substantial Proportion of Patients

The US Preventive Services Task Force Recommendation on Screening for Asymptomatic Celiac Disease

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