Dear Gator,

As a valued healthcare professional member, we want to equip you with useful information for both you and your patients. This issue includes the chance to make a difference for your patients with coeliac disease; an invitation to register for this year’s International Coeliac Disease Symposium (ICDS), plus the latest information on prescribing policies in England, Precautionary Allergen Labelling guidelines (PAL) and new research into coeliac disease. Read on to find out more.

Your views can make a difference for patients with coeliac disease 

We understand that you’re highly dedicated to your patients with coeliac disease and your views and experiences as a professional in the field are extremely useful to help guide and shape our support and services for those affected by the condition.   

We're conducting a short survey to better understand the experiences and needs of individuals with the condition and the experts who provide their medical care. 

The survey takes just 10 minutes to complete, and your responses will be anonymous. If you’d like to take part, we’d really appreciate it. The survey will close on Monday 8 April at 9.00am. 

The symposium brings together international clinicians, scientists, researchers, patient organisations and industry from a wide array of disciplines to deliver talks, discuss the latest topics, and form new networks. 

There is also the opportunity for you to submit an abstract for an oral or poster presentation.

For more information about the programme, how to submit an abstract and details on how to register to attend, visit the link below. 

Since Clinical Commissioning Groups (CCGs) merged to form Integrated Care Boards (ICBs) in 2022, many areas have looked to align their gluten free prescribing policies, leaving many people struggling to maintain their health. We are deeply concerned by this and have been communicating with many areas that are in the process of reviewing this. Here's an update on the recent changes in England:

• Kent and Medway ICB: Gluten free prescribing has been reinstated in West Kent. All patients in this ICB who have been diagnosed with coeliac disease, are eligible for gluten free prescribing in line with Coeliac UK guidelines for England. 

• South West London ICB: The ICB has reinstated in Croydon, Kingston, Merton and Richmond meaning all patients diagnosed with coeliac disease are eligible for gluten free prescriptions across the whole ICB. 

• West Yorkshire ICB: Following the ICB’s decision to withdraw gluten free prescribing in Leeds and Calderdale without taking into account stakeholders’ opinions or consultation responses, we threatened to legally challenge this and went out to local media with our concerns. The decision has been reviewed and frustratingly the ICB has chosen to retain the original position and withdraw prescribing across the whole ICB. We are very concerned by the decision and in particular, we believe the ICB’s suggested mitigation of promoting gluten free food available at food banks to be irresponsible and unacceptable. We encourage you to contact the ICB if you find any patient struggling to afford gluten free food, as they have committed to monitoring such concerns. You can contact West Yorkshire ICB here.

• Hampshire and Isle of Wight ICB: The ICB made the decision to withdraw gluten free prescribing in Hampshire in November 2023. We only became aware of this when patients were informed via letter of its immediate withdrawal in January 2024. We have since written to the ICB to express our concerns and urge them to rethink their decision. We have also spoken to local media, supported a letter on behalf of the All Party Parliament Group on Coeliac Disease, and requested a meeting with senior leaders at the ICB. We have since had a positive meeting with Deputy Chief Medical Officer and Chief Pharmacist where they acknowledged our concerns and committed to ensuring the most vulnerable are supported. Discussions are ongoing and we will keep you up to date as this develops.  

If you would like to find out what the prescribing policy is for your patients, use our postcode look up tool here. 

Please feel free to share this tool with your patients and colleagues. 

At present, the use of PAL remains voluntary and there are no regulations in place governing how and when it is used. However, existing guidance within the legislation makes it clear that voluntary information should not mislead or confuse consumers. This means that PAL should only be used following a meaningful risk assessment and when a genuine risk of cross contamination with the allergen exists and it could be present in the final product. The Food Standards Agency has provided clear guidance to assist food businesses in the appropriate use of “may contain” statements.   

For people with coeliac disease, we strongly advise against consuming products bearing a “may contain” statement for cereals containing gluten, as the uncertainty surrounding the amount of the gluten present poses a significant risk to those needing to follow a gluten free diet.  

To support the evidence base on PAL, we have conducted an “off the shelf” product sampling project, which includes products that have a PAL for cereals containing gluten. Through this project, we have identified products containing levels of gluten exceeding the established threshold of 20 parts per million (ppm), illustrating the risk of consuming products carrying a PAL.    

Coeliac UK has participated in ongoing discussions at Codex, where there is an intention to establish a Codex Standard for the use of PAL. Additionally, we are engaged in national discussions within the UK. We are committed to monitoring this complex aspect of food labelling to advocate for the needs of our community. We hope the outcome of these efforts will contribute to safer food choices for those living with coeliac disease.   

Keeping you up to date with the latest research 

Understanding the patient's experience of coeliac disease diagnosis: a qualitative interview study

In this study researchers found: 

• Most interviewees reported a delay in diagnosis due to their non-specific symptoms that they may have normalised or after being given an alternative diagnosis, such as IBS or anaemia.  
• An endoscopy was thought to be necessary to confirm the diagnosis however, many experienced long NHS waiting timings and faced uncertainties around their diet while awaiting the procedure.  
• There is a need for GPs to be more transparent and communicate openly with patients about the diagnostic process to improve the patient journey to diagnosis.  

Kind Regards,

Coeliac UK

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