Reviewing a patient with coeliac disease
BMJ 2012; 344 doi: https://doi.org/10.1136/bmj.d8152 (Published 17 January 2012) Cite this as: BMJ 2012;344:d8152All rapid responses
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Response to Berrill et al: Targeting coeliac disease serology
We agree with Berrill et al[1] that testing of first degree relatives for possible gluten enteropathy is a very worthwhile consideration. However, we caution against less targeted testing especially in the context of vague non specific symptoms.
Based on serological studies leading to confirmatory biopsy, the prevalence of coeliac disease (CD) in the general population in England is estimated to be between 1.0% (95% Confidence interval (CI) 0.9-1.4%) and 1.2% (CI 0.8-1.4%).[2,3] similar to the international prevalence quoted by Berrill et al.[1] In “at risk’ groups, the prevalence is much higher; 5-6% in first degree relatives of patients with CD,[4] 6% with type 1 diabetes mellitus,[5] and up to 3% in one directed case finding study in primary care.[6]
In 2009, the National Institute for Health and Clinical Excellence (NICE) issued guidance on a very wide spectrum of symptoms where clinicians should offer serological testing for CD.[7] Theoretically, these same symptoms should apply equally to treated patients and suspected new diagnoses.
To understand the impact of NICE guidance we reviewed requests for coeliac serology from two large hospital centres (Gloucester and North Bristol) and the associated primary care providers (total catchment population approximately 1,000,000). All patients’ sera were initially screened with anti-tissue transglutaminase antibodies. All positive sera were confirmed by anti-endomysium antibody as this combined approach has been shown to ensure much improved positive predictive values.[8] Berrill et al,[1] recommended use of IgA anti-tissue transglutaminase alone in their illustrative case on a gluten free diet, but please note in general usage, the anti-tissue transglutaminase test (especially at low titre) can give false positive results, so we advise dual testing of positive anti-tissue transglutaminase cases, to include IgA anti-endomysium.
Figure 1 shows that increasing awareness of coeliac disease prior to the NICE guidelines resulted in an explosion of serological investigation, particularly from within primary care, which continues. NICE guidance does not seem to have altered or focused testing, nor improved yield. Requesting has more than doubled in 5 years, with the primary care component increasing from 69% of total requests to 80% of total requests.
Disappointingly, our data suggests that requesting is becoming less effective than before the NICE guidance. The percentage of patients with dual positive serology in primary care has dropped steadily to the current yield of only 1.2% of the tested population.
In this time of austerity patient selection for initial CD serology needs to be better targeted. Our data indicates that CD detection is no better than would be achieved by random screening in primary care. Testing more and more new patients with a reducing diagnostic yield calls for review. Within the hospital setting (Gloucester data only) CD detection was highest (around 5%) in children (failure to thrive, family history, and type 1 diabetes mellitus being the main clinical indications), and the adult endocrinology / diabetes (type 1 diabetes mellitus related) and gastroenterology clinics.
Reference List
1. Berrill JW, Ahmed H, Butt S, Swift G. 10-minute consultation: Reviewing a patient with coeliac disease. BMJ 2012;344:d8152 doi: 10.1136/bmj.d8152
2. Bingley PJ, Williams AJK, Norcross AK, Unsworth DJ, Lock RJ, Ness AR et al. Undiagnosed coeliac disease at age seven: population based prospective birth cohort study. BMJ 2004;328:322-3.
3. West J, Logan RFA, Hill PG, Lloyd A, Lewis S, Hubbard R et al. Seroprevalence, correlates, and characteristics of undetected coeliac disease in England. Gut 2003;52:960-5.
4. Fraser JS, King AL, Ellis HJ, Moodie SJ, Bjarnason I, Swift J et al. An algorithm for family screening for coeliac disease. World J Gastroenterol 2006;12:7805-9.
5. Salardi S, Volta U, Zucchini S, Fiorini E, Maltoni G, Vaira B et al. Prevalence of celiac disease in children with type 1 diabetes mellitus increased in the mid-1990s: an 18-year longitudinal study based on anti-endomysial antibodies. Journal of Pediatric Gastroenterology and Nutrition 2008; 46: 612–4
6. Hin H, Bird G, Fisher P, Mahy N, Jewell D. Coeliac disease in primary care: case finding study. BMJ 1999;318:164-7.
7. Centre for Clinical Practice at NICE (UK). Coeliac Disease: Recognition and Assessment of Coeliac Disease. London: National Institute for Health and Clinical Excellence (UK). 2009.
8. Lock RJ, Stevens S, Pitcher MCL, Unsworth DJ. Is immunoglobulin A anti-tissue transglutaminase antibody a reliable serological marker of coeliac disease? Eur J Gastroenterol Hepatol 2004;16:467-70
Competing interests: No competing interests
Coeliac Disease: Adherence, compliance and the final say!
We read with interest the excellent 10 minute consultation on coeliac disease. We would wish to make two points which we hope are relevant.
The Oxford dictionary definition of compliance is ‘the action or fact of complying with a wish or command or excessive acquiescence’ whilst adherence is described as a steady devotion or support. Why is this apparent semantic distinction important to all clinicians? The former term is submissive and perhaps even judgemental ‘are you complying with your gluten-free diet’ whilst adherence empowers the patient. We would suggest that the terminology should be adherence and that compliance should no longer be the term applied in this clinical setting.
Adherence to a gluten free diet is the cornerstone of management for coeliac disease. Adherence rates vary from 42% to 91% and it has been demonstrated that one of the critical elements to ensure high levels of adherence is a supportive approach by the clinician looking after patients with coeliac disease (1). Thus a simple change in terminology could have a significant clinical impact.
Finally as is often the way of many consultations the last question ‘is there anything you would like to ask or I have not covered?’ may lend itself to uncovering another issue that the patient would like to ask about. Based on our experience of the Sheffield coeliac clinic (>1000 patients) the most frequently asked question at the end of such a consultation ‘is there a cure?’ At present although vaccines, peptidases, anti-zonulin therapy and genetically modified wheat are all being pursued by different research groups there remains no novel therapeutic option (2). This is valuable knowledge to anyone providing this 10 minute consultation. Thus the patient doctor relationship and follow-up is essential in ensuring the best possible outcomes for this group of patients.
1. Hall NJ, Rubin G, Charnock A. Aliment Pharmacol Ther. Systematic review: adherence to a gluten-free diet in adult patients with coeliac disease. 200915;30(4):315-30.
2. Aziz I, Evans KE, Papageorgiou V, Sanders DS. Are patients with coeliac disease seeking alternative therapies to a gluten-free diet? J Gastrointestin Liver Dis. 2011;20(1):27-31.
Competing interests: Professor Sanders is the chairman of the Coeliac UK Health Advisory Council
Thank you for this discussion. One point I want to highlight is that recurrence of coeliac disease is due to the reexposure of small bowel to gluten, and the comonest cause is that the patient fails to maintain his/her diet gluten free due to loss of regular contact with his/her dietitian and physician.
But in this case the recurrence developed after 10 years of diagnosis at the age of 54 years so we should suspect small intestine malignancy, though it is quite rare and a small intestinal biopsy should be done. Coeliac disease increases the risk of lymphoma, but the association with other type of gastro-intestinal malignancy is still uncertain.
Competing interests: No competing interests
Re: Reviewing a patient with coeliac disease
From raw data on the number of requests for coeliac serology at 2 hospitals, Unsworth et al suggest that requesting in primary care is becoming less effective (1). Their premise is based on the observation that the proportion of patients in primary care with dual positive coeliac serology, has fallen to 1.2% in their tested population. However, they do not make reference to the impact of repeat sampling of the same patient, within their tested population.
Repeat sampling may be required in patients with indeterminate results. As serological tests for coeliac disease are neither 100% sensitive, specific, nor 100% reproducible, a diagnosis of coeliac disease may not be excluded by a negative result.
Furthermore, the primary care samples referred to, will contain annual repeat serological tests of patients with coeliac disease, as is recommended in order to attempt to detect exposure to allergen.
Following adherence to a gluten free diet, dually positive results would be expected to revert to normal. As the test population described presumably contains results of both preliminary and subsequent test results, the percentage of dually positive results in relation to the test population, might well be expected to fall.
Therefore, evidence of a reduced percentage of patients with dual positive serology, per se, is not a valid indicator of the effectiveness of CD detection in primary care.
Reference
1. Targeting coeliac disease serology. Unsworth et al. BMJ. 2012: 26. (Letter)
Competing interests: No competing interests