Frequently Asked Questions Find everything you need to know about coeliac disease, the gluten free diet and the work we do.
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I would like to know why all three of my young children have coeliac disease via my husband but none of his nieces or nephews have been diagnosed even though they have parents and grandparents with coeliac disease? Also what is the chance of them going on to develop another autoimmune disease as my middle daughter has continued having problems? And finally, do we have specialist coeliac research teams here in the UK?
Although coeliac disease is clearly in part a genetic disease, genetics alone is not enough to explain why one person gets coeliac disease and another does not. Even in genetically identical people, monozygotic twins, one twin can have coeliac disease and the other may not. Other factors from our environment may also play a role, and these could be different for each person as well. What these factors are is still mostly unclear, so we're unfortunately not able to reduce the risk of getting coeliac disease yet.
With regards to your second question: the chances for getting other immune related diseases in coeliac disease patients are indeed increased. Examples are autoimmune thyroid disease and type 1 diabetes, but there are others as well. The exact chances of developing another autoimmune disease are hard to estimate and differ greatly for different autoimmune diseases, so unfortunately, I can't give you a very clear answer.
Yes, there are researchers in the UK exploring coeliac disease too. Coeliac UK funded researcher, Professor David van Heel also looked into the genetic variants for coeliac disease, you can read about this research on the website. Interestingly, he collaborated with the team at Groningen. More recently, Professor Ramesh Arasaradnam completed a Coeliac UK project exploring the microbiome - find out more information on this project here.
Is it true that coeliac disease can come about after a childhood illness?
There are some indications that a viral infection, like for example a common cold, could help trigger coeliac disease. It's unclear how strong the effect of a viral infection on coeliac disease onset would be, or how the infection may increase someone's chances of getting coeliac disease. We think it has a small effect at most, because many people don't get diagnosed with coeliac disease until much later in life, when they have encountered many common colds already. Other factors, including genetics or other things that you may encounter in your surroundings, are also likely to play a role. Several groups are trying to understand the link between viral infections, and other environmental factors and coeliac disease.
The membership fee is too much for me, what are my options?
We never want the fee to be a barrier to information, which is why we have so much information freely available on our website and via our Helpline. Our digital only package launching at the end of November is our lower cost option and you can access services on your phone. If you feel you need the full support of our complete membership package, you can spread the cost over a monthly Direct Debit which is just over £2. Please talk to us about the range of membership options we have to best support your needs.
Do you know if clinical trials for coeliac disease will come to the UK?
This is what is listed on ClinicalTrials at the moment.
Professor Sanders in Sheffield took part in the gluten degrading enzyme trial sponsored by Alvine Pharmaceuticals. There are no UK centres in the ongoing (recruitment completed) trial with transglutaminase 2 inhibitor by Dr. Falk Pharma.
The UK should be a good place to do studies, and there are several trials coming.
Is anyone working on a pill we can take after being 'glutened' to minimise the awful effects?
Francisco Leon gave an excellent talk at our 2019 Research Conference, summarising therapeutics in development for people with coeliac disease.
Head over to our website to watch the video, or you can download the slides, in particular slide 6, which gives a complete overview of therapies in development.
Are people with coeliac disease at increased risk of severe illness from covid-19?
As coronavirus is a new illness, at the start of the pandemic there was no research specifically looking at the risk to people with coeliac disease. We are pleased to share the results of a research study in Sweden which found that coeliac disease was not associated with an increased risk of hospitalisation for covid-19 or death due to covid-19.
The study compared over 40,000 people with coeliac disease over a 6 month period to “matched controls”; people who don’t have coeliac disease but are the same gender, age and live in the same county. Data from this study was also adjusted to take into consideration other pre-existing health conditions.
The researchers compared the following outcomes between people with coeliac disease and controls:
- Hospitalisation for covid-19
- Having severe covid-19 (either being admitted into intensive care unit with a covid-19 diagnosis or death from covid-19 with covid-19 listed as a primary diagnosis)
The research found that people with coeliac disease were not at an increased risk of hospitalisation from covid-19 compared to matched controls from the general population.
In addition, people with coeliac disease were not at an increased risk of intensive care admission or death related to covid-19.
Results from this study suggest that people with coeliac disease do not have an increased risk for severe covid-19. Although, this study was based in Sweden, which had different regulations for social distancing and restaurant, shop and school closures compared to other countries the results should be reassuring for people with coeliac disease in the UK.
This study did not investigate the long term effects of covid-19 such as “long covid”, where people have symptoms that last weeks or months after the infection has gone.
Prof Jonas Ludvigsson, one of the researchers involved in this project, spoke about this research at our virtual 2021 research conference. You can watch the video here.
We will continue to provide updates as more research is published into the impact of coeliac disease on infection, immunity and covid-19.
Will people with coeliac disease be offered a third vaccine?
You may have heard about a third vaccine dose for people who are severely immunosuppressed, this is a different vaccine to the booster vaccine. The third vaccine dose does not apply to people with coeliac disease without any additional complications.
Will there be any research undertaken concerning type 3 Bile Acid Diarrhoea (BAD)/Bile Acid Malabsorption (BAM) that is associated with coeliac disease?
I'm unaware of any current research of type 3 Bile Acid Diarrhoea (BAD)/Bile Acid Malabsorption (BAM) in relation to coeliac disease. There is an increased prevalence of Primary biliary cholangitis, which is also an autoimmune disease, in coeliac disease patients. In Primary biliary cholangitis, bile ducts in the liver are damaged causing problems with bile build-up in the liver. There are genetic risk factors that are shared between coeliac disease and Primary biliary cholangitis, but it is unclear what the direct link between the two diseases is.
Could genetics explain why some people develop neurological conditions and others don't and if so is this something that is being looked at?
Unfortunately, we don't know why some coeliac patients develop gluten ataxia and other neurological symptoms. It seems that the antibodies that are produced in the gut in response to gluten can sometimes travel to the brain or nervous system and cause damage there. We are learning more and more that there is a connection between the gut and the brain (called the gut-brain-axis), however research is still studying the basics of this connection. It's not clear how the gut-brain-axis is affected in coeliac patients and if the patients genetic background could affect this. What we want to do in the future is link the gut-on-chip to a brain-on-chip and see if we can model the coeliac disease specific gut-brain-axis. However, we are not there yet and anticipate that this will take some years to set up.