Coeliac disease and coronavirus (COVID-19) FAQs

We know there are lots of concerns and queries about coronavirus and coeliac disease and we have answered as many as we can below.

Frequently Asked Questions

What can I do to stay well?

The NHS website and Government website are being updated on a regular basis and are the best place to go to for the latest information and guidance. Follow their advice to try and keep yourself safe.

As always, make sure you follow a strict gluten free diet, which is the treatment for coeliac disease.

What is Coeliac UK doing to help people manage their gluten free diet during the coronavirus pandemic?

We continue to work with our Health Advisory Council to make sure we’re giving you the best advice in line with Government guidance. Please keep an eye on our website and social media for the latest updates. We also continue to work with food manufacturers and retailers to ensure availability of gluten free food for people with coeliac disease throughout the pandemic.

Alongside this, we've created resources to help our gluten free community keep living well gluten free. Our Home of Gluten Free Recipes is now available for everyone to use. We've also developed new digital support tools for those recently diagnosed, and information on how to keep busy and cope with loneliness.

We’re doing what we can but if you can think of anything that would help you, please let us know by clicking here.

How can I find out if the guidance on coeliac disease and coronavirus changes?

Keep an eye on our website and the government updates too. We will do our best to keep you updated with this evolving situation.

When can people with coeliac disease get vaccinated against covid-19?

Priority groups have been provisionally established for the roll out of covid-19 vaccines. Currently, adults aged 16-65 with reduced spleen function are listed under priority group 6.

Around a third of adults with coeliac disease may have reduced spleen function and so adults with coeliac disease may fall into this group. You can find out more about who falls into priority group 6 by clicking here. You can read more about spleen function in coeliac disease here.

Click here to view the full list of the Government's COVID-19 vaccination first phase priority groups.

I am diagnosed with coeliac disease, am I in priority group 6 for vaccination?

The priority groups for vaccination are currently based on age, occupation and health conditions.

If you are aged 65 or older, you will fall into priority group 1 – 5 based on your age, not your coeliac disease.

Currently, adults aged 16-65 with reduced spleen function are listed under priority group 6. The guidance is also clear that across the priority groups, clinical judgement should be applied.

If are you aged between 16–65 years and are diagnosed with coeliac disease, your healthcare team may consider you to fall into priority group 6, as up to a third of adults with coeliac disease may have spleen dysfunction. Coeliac disease is listed within the vaccination guidance as an example of a condition which may lead to reduced spleen function.

We contacted Public Health England last year to ask for clarification on the guidance and whether people with coeliac disease are considered clinically vulnerable. In their response, Public Health England stated that clinical judgement needs to be applied and individual circumstances considered when deciding whether someone with coeliac disease is considered clinically vulnerable. The risk of hyposplenism to children with coeliac disease is very low and the risk for adults is likely to be low, particularly for individuals who have been diagnosed and following a strict gluten free diet for several years and are otherwise healthy.

We understand that it can be frustrating to not have clear cut guidance which applies to everyone with coeliac disease and we are continuing our work in this area. We have written to NHS England to request further clarification within the Green Book. We are also in contact with researchers who are carrying out research in this area which we hope will provide evidence to better inform policies on vaccination for people with coeliac disease.

Who is classed as clinically vulnerable?

Two groups who are considered to be vulnerable have been identified:

  • People who are clinically extremely vulnerable, who were advised to follow shielding advice at the start of the pandemic. People with coeliac disease who have no other health conditions do not fall into this category.
  • People who are clinically vulnerable. This group is based around people who are offered the annual flu jab and includes everyone over 70 and people with certain medical conditions. Read on for more on this category and people with coeliac disease.

There is guidance on who is clinically vulnerable or clinically extremely vulnerable for people living in EnglandScotlandWales and Northern Ireland

More information

People with coeliac disease may have reduced spleen function and this is the reason why certain vaccinations (including the flu vaccination) may be offered to people with coeliac disease. As the clinically vulnerable group has been based on who is offered the flu vaccine, people with coeliac disease may fall into this category.

Having reduced spleen function is not the same as having your spleen removed (also called splenectomy). People who have had their spleen removed are considered clinically extremely vulnerable in England, Scotland and Northern Ireland but are not explicitly mentioned in the guidance from Wales. In England, the guidance on who is considered clinically extremely vulnerable says “people with problems with your spleen, e.g. splenectomy (having your spleen removed)” and so is less clear than in the other nations where splenectomy is the only spleen condition mentioned.

We have been in contact with Public Health England who last year agreed with the position of our Health Advisory Council, that people with coeliac disease should assess their level of risk on an individual basis with the support of their local healthcare team. People with coeliac disease could consider themselves to be clinically vulnerable due to the risk of reduced spleen function and follow the associated advice.

The risk of hyposplenism to children with coeliac disease is very low and the risk for adults is likely to be low, particularly for individuals who have had the recommended pneumococcal vaccination, have been diagnosed and following a strict gluten free diet for several years and are otherwise healthy.

The guidance on who is clinically vulnerable is also being used as part of the prioritisation for the covid-19 vaccine rollout. You can read more about this here.

 

Has Coeliac UK sought clarity on the Government guidance for people with coeliac disease?

Yes, we know that the guidance has been a cause of confusion for our community and we have been in contact with various bodies including the Department of Health and Public Health England. The latest guidance lists people who are offered the flu jab on medical grounds within the clinically vulnerable group. People with coeliac disease are not specifically mentioned in the guidance but are recommended to have the flu vaccine on the basis that around 30% of people with coeliac disease may have hyposplenism.

The risk of hyposplenism to children with coeliac disease is very low and the risk for adults is likely to be low, particularly for individuals who have had the recommended pneumococcal vaccination, have been diagnosed and following a strict gluten free diet for several years and are otherwise healthy.

Public Health England has agreed that people with coeliac disease should assess their level of risk on an individual basis with the support of their local healthcare team.

If there is no gluten free food available at the supermarket, will it become available on prescription?

Gluten free staple foods are available on prescription in Wales, Scotland and Northern Ireland. Gluten free bread and flour mixes are available in some areas in England so check availability here. In areas of England where access to gluten free food on prescription has been restricted, it is unlikely that local policies will be reviewed at this present time.

I can’t find any gluten free products in my local supermarket, including essentials like gluten free pasta and flour. What can I do?

If you're struggling to find gluten free products at your supermarket, we advise you to:

  • ask your store manager what time they receive their gluten free deliveries and go to the store then
  • try local convenience stores 
  • try mail order companies to see if you can get food delivered
  • try local suppliers who might be better stocked in their produce

If you're venturing out, please make sure you follow Government guidance to avoid risk.