Medical Inertia to Blame for Delayed / Missed Celiac Disease Diagnoses

delayed-celiac-diagnosis-wpStudy first to fully represent how medical inertia towards CD directly leads to increased diagnostic delay and likely missed diagnoses.

  • British Medical Journal, Open Gastroenterology 1

What is already known about this subject?

  • Diagnostic delay is a key issue facing modern management of coeliac disease (CD) while only one in four cases are estimated to be diagnosed.
  • Delayed diagnosis of CD is associated with an increased risk of complications from the disease and a worse quality of life.


  • This study aimed to assess if there is secondary care medical inertia towards coeliac disease (CD).

What are the new findings?

  • Patients with CD face greater delays at all wait intervals from referral to diagnostic endoscopy compared with patients with inflammatory bowel disease (IBD).
  • The majority of endoscopists do not follow guidelines for diagnostic endoscopy for CD. This reduced diagnosis rates by over 50%.
  • Questionnaire findings presented an attitude of medical inertia towards CD alone and in comparison to IBD.
  • This is the first study to fully represent how medical inertia towards CD directly leads to increased diagnostic delay and likely missed diagnoses.

How might it impact on clinical practice in the foreseeable future?

  • This study characterizes and raises awareness of prominent medical inertia towards CD among secondary care clinicians and demonstrates the effects of this on diagnostic delay.
  • Our findings advocate the need to combat this through lower thresholds for investigation, greater adherence to biopsy guidelines and increased referral urgency to reduce overall diagnostic delay.


This contemporary multicentre UK study demonstrates prolonged waiting times for endoscopy and inadequacies in biopsy technique for adult patients with suspected CD. This objectively suggests medical inertia towards CD among secondary care clinicians.

Endoscopy waiting times were not in keeping with NICE guidelines of 6 weeks. There was a significant negative correlation between delay till endoscopy and Marsh Grade of biopsy. This may suggest that with greater wait time patients are more likely to self-impose a GFD, likely in attempt to achieve the improved quality of life from switching to a GFD, and increasing the chance of a missed diagnosis. However, there is as of yet no empirical evidence in the literature that greater delays till diagnosis mean patients are more likely to self-initiate a GFD. This is an area that warrants further investigation. It could be argued that instead those patients with a more florid histology were likely to be more symptomatic so were prioritised earlier for endoscopy. However, when grading urgency of endoscopy referrals in the UK, gastroenterologists usually only have the information provided on the referral letter.

The fact that in only 40.0% of endoscopies four biopsy samples were taken clearly represents how in the majority of duodenal biopsies BSG guidelines are not followed. The detriment from this is clearly shown through the greater than doubled diagnosis rate (10.1% for four or more biopsies vs 4.6% for three or less) seen in endoscopies where the guidelines were followed. This is a clear example of the impact of diagnostic inertia towards CD on missed or delayed diagnoses and is backed by a similar low rate of guideline adherence (35%) in a USA based biopsy study. Patients with missed CD will go on to experience more harm through possible repeat endoscopies and more time spent following a gluten containing diet. To build on this, 12.4% of the patients diagnosed with CD had received a previous non-diagnostic (here meaning that no biopsy samples were taken) gastroscopy in the 5 years before their diagnosis.

A strong majority of 88.0% rated IBD as having greater complexity than CD and 82.0% believed CD was less significant than IBD in terms of resources needed to diagnose and treat. Furthermore, 36.0% of clinicians felt that doctors are not required for management of CD and 40.8% believed management of CD was not academically challenging. These findings suggest significant proportions of gastroenterology clinicians believe CD should be treated with less urgency than IBD and that it is not a condition for which medical expertise is required, further building a picture of medical inertia towards the condition.

A systematic review estimated prevalence of 0.005%– 0.5% for UC and 0.0006%–0.32% for Crohn’s disease in Europe. However, 32.0% of clinicians incorrectly identified IBD as having greater prevalence than CD. A previous study compared Crohn’s disease, UC, CD patients and healthy controls using the Short-Form 36-Item Health Survey and the Hospital Anxiety and Depression Scale to determine quality of life scores. The total study population was 1031, with over 200 patients included for each condition. Although Crohn’s disease patients reported the worst scores for general health, UC patients reported better general health than CD patients. The influence of diet on social interaction is well characterised and it has been shown patients with CD feel negatively controlled by their dietary restrictions, causing a significant impact on their social relationships31 in addition to their physical symptoms. The economic impact of purchasing gluten free products, which can be an average of 4.1 times more expensive and much less available than their gluten containing counterparts is also well recorded, providing an example of the continuing impact of the condition even following effective treatment.

Despite this, 77.1% of gastroenterologists questioned believed CD had less of an impact on patient quality of life than both Crohn’s disease and UC. Moreover, 16.0% of gastroenterologists believed CD caused no significant impact on quality of life. This is a significant proportion considering the specialism of those surveyed and the presence of numerous studies characterising the effect of CD on patient quality of life. Furthermore, our follow-up appointment observational findings demonstrate similar frequencies of symptom presentation between specialist CD and IBD clinics, with only significantly greater (following Bonferroni correction) bleeding (PR/in stool), in patients with IBD. In this context, our findings clearly exhibit medical inertia towards CD, showing medical professionals do not appreciate the impact of the condition both alone and in comparison to similar conditions.

A recent study by Pritchard et al suggests that over 75% of CD patients have no primary care follow-up appointment, despite the fact that telephone follow-up clinics have been shown to have a positive impact of GFD adherence in adults with CD. This combined with the finding that 36.0% of gastroenterologists felt that doctors were not required for the management of CD and that 30% of all CD patients have non-responsive CD (defined as persisting symptoms despite being on a GFD), suggests the need for an achievable, standardised national follow-up service for CD. Our recommendation is to call this ‘Coeliac UK, National Patient Charter’ and this would involve access to a dietitian as first point of contact, then access to a gastroenterologist if needed (e.g, a named gastroenterologist in every centre). This reflects findings on patient attitudes to follow up which demonstrated that the preferred method of follow-up for CD patients is to primarily see a dietician but with the option to see a doctor also if required.

Dietetic services in the UK have been demonstrated to be inadequately resourced, with the majority of trusts not providing specialist clinics, and thus innovative methods for providing dietetic services are required such as group clinics, telephone clinics or digital apps. If a pathway could be created that is achievable and economical for the whole of the UK then this system could be mandated by the Coeliac National Charity perhaps under the auspices of a patient charter.

The recent recommendation for a no biopsy strategy for suspected CD patients with a 10-fold tissue transglutaminase IgA serology (10-fold of the upper limit of normal) may mitigate the delays for gastroscopy in approximately 25% of patients. However, the remaining 75% may still be subject to the delays observed in this study unless the grading system is changed for this group of patients.

This is the first study to objectively demonstrate how medical inertia within secondary care causes diagnostic delay in the management of CD. We believe that comparing IBD and CD is akin to comparing apples and oranges and that this in essence is the crux of the issue. The medical inertia demonstrated by our study is likely due to the black and white view of IBD versus CD where all IBD cases are seen as apples needing urgent attention and all CD cases are oranges that are only referred down a routine pathway. Our findings suggest IBD and CD are not as different in clinical impact as they are treated. Improved knowledge of the clinical significance of CD may lead to more balanced referral grading among secondary care clinicians. Greater adherence to biopsy guidelines will produce higher diagnosis rates. These changes will contribute to reducing the vast undiagnosed burden of CD by producing more prompt diagnoses, resulting in better health outcomes.