Re: Investigating coeliac disease in adults
Ashton et al (1) highlight the need to remain on a gluten containing diet until diagnostic tests are complete for coeliac disease. Further, this instruction is covered in statement two of the NICE Quality Standard (2). However, this advice is not offered with sufficient weight by many referring clinicians. Consequently, some children and adults are already on a gluten free diet by the time they present for their diagnostic tests. This can lead to delayed diagnosis and unhappy patients. Worse, it can result in no diagnosis being formally confirmed when the patient refuses to be re-challenged with gluten ahead of their duodenal biopsy.
In order to rectify this recurring problem for Welsh children and to speed up the referral pathway, we worked with the Immunology Standing Specialist Advisory Group, to add a brief recommendation to the coeliac serology report. Soon, when the tissue transglutaminase IgA (TTG) lies outside the normal range, the report will state: “This child may have coeliac disease. Please recommend they must remain on a normal gluten containing diet until they are assessed by an expert and all diagnostic tests are complete. Please make an urgent paediatric outpatient referral stating “possible coeliac disease”.
Conversely, when the IgA TTG is within the normal range we offer: “To exclude coeliac disease with confidence this child must have a normal IgA level and must have been eating a normal gluten containing diet for at least 6-8 weeks prior to this blood test. If you still have concern please make a paediatric outpatient referral for expert advice.”
Working with physicians from the Welsh Association for Gastroenterology and Endoscopy (WAGE) and the Senedd Cymru Cross Party Group on coeliac disease, we hope that this innovation can be extended quickly to include all Welsh adults being investigated for coeliac disease as well.
1. Ashton et al Investigating Coeliac disease in adults BMJ 2020:369m2176
2. Coeliac disease Quality standard [QS134] October 2016 https://www.nice.org.uk/guidance/qs134
Competing interests: Ieuan Davies is a member of the Health Advisory Council of Coeliac UK and is a member of the Senedd Cymru Cross Party Group on coeliac disease. Richard Cousins is the Chair of the Immunology Standing Specialist Advisory Group (Wales)