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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Do Coeliac UK have any celebrity supporters?
Yes, the following celebrities are supporters of Coeliac UK:
- Caroline Quentin
- Chris Bavin
- Dr Chris Steele MBE
- Craig MacLean MBE
- Jane Devonshire
- Michael Obiora
- Mari Wilson
- Margo Buchanan
- Phil Vickery
How often does Coeliac UK hold its Raffles?
We hold our Raffles up to three times a year - all winners and their winning ticket numbers are available on our website within two weeks of the draw taking place.
Last I heard the 'injection trial' as a cure for coeliac disease was stopped as there was no significant evidence that it would be helpful. Has that research started again or is there now a new set of research? What is the research focusing on now?
I assume you are thinking about the clinical trial of ImmusanT that had the goal to re-educate gluten-reactive T cells. Yes, you are right this trial was stopped last summer after an interim analysis as it became clear that the drug was not effective.
Such setbacks are not unusual in drug development. In fact, it is considered that only one out of ten candidate drugs become a real drug for treatment of patients.
There are many other drugs for coeliac disease in the pipeline. Hopefully, one or more of these will make it so that a non-dietary treatment alternative becomes a reality for coeliac disease.
It seems as though there are types of coeliac disease (in the same way we are reclassifying types of diabetes) for example 'silent coeliacs' have fewer acute GI issues. Is this likely to lead to a reclassification of disease types and can you imagine differing treatments which can limit the absorption of gluten to the extent that those with fewer acute GI upset may be able to tolerate lower levels of gluten in the future?
Actually, not much is known as to why some people react more strongly to gluten exposure than others, but the amount of signal substances from T cells correlates with the degree of severity of symptoms. It is not very likely that this release of signal substances from T cells correlates with other consequences of coeliac disease.
Is there much research into dental/oral problems in people with coeliac disease, and if not can we do some? I work in dental research and would love to link my work and my diet.
No, not much research now. We suspect the dental problems in coeliac disease are under-reported. There used to be some dentists working with clinical studies on this.
What can cause continuous villous blunting and increase in lymphocytes despite following a strict gluten free diet and caution against cross contamination? I have also had investigations for other IBD and nothing was seen.
For some patients, recovery to a normal mucosa (no villous blunting) can take several years on a gluten free diet. A few patients also fail to recover despite a strict gluten free diet. We do not really know yet why this is, but in most cases very small amounts of gluten are the cause, as some patients respond stronger to small amounts of gluten than others. However, clinical symptoms may still disappear despite the presence of villous blunting.
Have they come up with a magic cure yet so we can eat anything?
No, not yet.
No drugs are accepted as non-dietary treatment. We all have hopes that such drugs will come to the market. They may be used for accidental exposure, and maybe as a cure.
If their research is successful and the blood test comes to fruition that would help so many who are in no man’s land of diagnosis since they either weren’t or couldn’t have sufficient gluten containing food for the other bloods and biopsies. When would this test be available?
For the HLA-DQ:gluten tetramer test to become available in clinical practise, production of the test must be industrialised (that means, manufactured for sale).
This process is ongoing and will hopefully be successful. In addition, the test must be validated for its performance when samples are sent in from many patients from different doctors to the analysing laboratories. All this will take some time, maybe a year or two if everything goes well.
Please can you explain the T cells as I keep getting gut spasms?
T cells are special cells that are part of our immune system. They protect us against pathogens.
In individuals with coeliac disease, some of these T cells will go crazy when they meet gluten. This causes inflammation in the intestine when you eat gluten. The diagnosis of coeliac disease is relatively easy to achieve compared to many other gastrointestinal disorders, and all of those tests should be available from your local GP.