Number of patients being diagnosed with Coeliac Disease in UK

Whilst it's good to see that research is going to take place re the impact of gluten intolerance we've always been surprised that there are no figures kept on the amount of individuals diagnosed each year with Coeliac Disease.

news-medical.net/news/20120...

It's not necessary for GP's to notify a positive CD blood test or for a hospital Gastro department to notify a positive endoscopy procedure.

Most of the figures for people diagnosed with CD being bandied around are based on the amount of new yearly members of CUK.

Are you surprised that this is the case?

We wonder do the big gluten free food manufacturers have an alternative source of info? They seem unlikely to pour money into manufacturing gf foodstuffs on a figure plucked out of the air.

Other major diseases, including autoimmune, have figures to hand showing the amount of new cases diagnosed. If it's possible to capture these then why not CD? What's your view? If you live outside the UK what happens in your country?

9 Replies

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  • Hi I think you might have misread my post, to reaffirm we have repeatedly tried to hunt down accurate figures for the number of diagnosed Coeliacs in the UK. This has involved liaising with the Dept Of Health and other Gov agencies. None of them can supply figures. Instead they rely on CUK's figures which are only based on paid membership.

    Now that CUK have widened their membership to include non Coeliacs, i.e. gluten intolerants, it muddies the waters even further.

    Using prescriptions as a measure is not possible or accurate because all they can track is the number of items that are ordered, not the individual patient ordering the prescription items.. (Dept of Health confirmed). They have also confirmed that each GP's surgery across the UK has their own individual method and process for logging diagnosed Coeliacs; none of which is shared or held Centrally.

    In terms of secondary care at hospitals, the majority of people being tested are outpatients so this is not tracked. If Diabetes, Thyroid and other illness can be captured relatively accurately then why can't the number of diagnosed Coeliacs be captured as well?

    The point we are making is that with insufficient stats it is difficult to build a business case for greater awareness and product choice for Coeliacs.

  • I am pleased that you have posted this Irene as I have been trying for several months to find the exact figures so that I could put them in a post for everyone here. I have looked in every direction but failed to get any accurate figures only possibilities and even these are too vague to come anywhere near close to accurate.

    There is too much reference that is based solely on the 1 coeliac in every 100 people and the additional 15 in every 100 of gluten intolerant people. Which I might also add is considerably more on the US 'Celiac' sites which list there being a rising increase to gluten sensitivity and affecting more people every year. In some parts of the world it is believed that around 50% of the population have a pre-disposition to developing problems if they eat gluten grains regularly. It would appear that no matter which country that you try and find informaition on actual numbers there are only ever rough estimates available.

    frot.co.nz/dietnet/basics/g...

  • Sorry for this additional patch of information but it is new to me and so I thought I'd add it and perhaps someone else who may know a little more could add further information.

    I have noticed a list of both coeliac and gluten sensitive genes, some of which I have never come across before from the frot.co.nz/dietnet/basics/g... - site:

    Gene: Associated with:

    HLA-B8 Celiac disease

    HLA-DQ1 Gluten sensitivity

    HLA-DQ2 Celiac disease

    HLA-DQ3 Gluten sensitivity

    HLA-DQ5 Gluten sensitivity

    HLA-DQ6 Gluten sensitivity

    HLA-DQ7 Celiac disease

    HLA-DQ8 Celiac disease

    HLA-DR3 Celiac disease

    Does this mean perhaps that people who may not have Coeliac disease could ask whether it may be possible to test for one of these other genetic markers, do you suppose?

    Also ..... this is the first time I have heard of 'Attackers' and 'Greedies' ...........

    Added to the above, apparently we as coeliacs are producing much more zonulin than non-coeliacs. Here is an exerpt:

    "...human protein zonulin, which regulates the permeability of the intestine, is at increased levels during the acute phase of celiac disease. The discovery suggests that increased levels of zonulin are a contributing factor to the development of celiac disease and other autoimmune disorders such as insulin dependent diabetes, multiple sclerosis, and rheumatoid arthritis. The findings are published in the April 29 issue of the journal Lancet.

    "Zonulin works like the traffic conductor or the gatekeeper of our body's tissues," says lead author Alessio Fasano, M.D., professor of pediatrics and physiology at the University of Maryland School of Medicine, and director of Pediatric Gastroenterology and Nutrition at the University of Maryland Hospital for Children. "Our largest gateway is the intestine with its billions of cells. Zonulin opens the spaces between cells allowing some substances to pass through while keeping harmful bacteria and toxins out," explains Dr. Fasano."

    Please see link below for more information:

    umm.edu/news/releases/zonul...

  • Thanks Lynxcat. Genetic testing is most widely used in the USA. Most UK docs are loathed to do it. Even if you do have the genetic disposition this doesn't mean that you have CD or that you are going to get it. A lot more research is needed in this area but it's an interesting development. The USA is much further ahead in the research of CD and gluten sensitivity.

    In terms of countries that do tend to track CD, ones that seem to be the best are Italy (they test children at an early age) and Sweden.

  • I am astounded that there are no solid figures for coeliac, gluten sensitive etc. within the NHS. How can they then make policy? How can they decide to reduce expenditure on prescription gluten free foods and medicines if it cannot be backed up by sound data?

  • Our thoughts exactly Tim. GF food producers must base their forecast of predicted sales within the gf market on some figs. More players are coming into the market so the sales (profits) must be there for the taking.

    We know that many Coeliacs choose not to take advantage of prescription food for a number of reasons. One being that it's such a faff to liaise with the GP and place the order. Another reason why those stats are flawed straight away. When first diagnosed we ordered items which were suggested, to some extent, by the GP. These weren't a success or something we'd care to repeat. We then spent 3hrs trawling the new to find healthy gf options available on prescription but again it was hassle getting gp to add these to prescription.

    What we find more worrying is that Coeliacs, once diagnosed, aren't then registered(1) on any central dbase, so there are no true figures on which to base health policy (2) that Coeliacs aren't, automatically at diagnosis, screened for other associated autoimmune diseases which surely would save the NHS money in the long run, e.g. thyroid disease, pernicious anaemia, ra. (3) For health bodies to be happy that a Coeliac society has a monopoly on stats which aren't reliable is also disturbing, yet this seems to happen world wide.

  • According to CUK they have 50,000 members and according to this on the Juvela site on 2001 there were 125,000 diagnosed coeliac in the UK and this statistic is taken from CUK's figures. which also states that 7000 people are being diagnosed every year.

    juvela.co.uk/questions-and-...

    In my opinion this is an awkward question for Coeliac UK as they have to tell advertisers how many members they have which's circa 50,000 and if there are known to be nearer 200,000 diagnosed coeliac this will not impress prospective advertisers.

    Now Irene made this point: ''We wonder do the big gluten free food manufacturers have an alternative source of info? They seem unlikely to pour money into manufacturing gf foodstuffs on a figure plucked out of the air.''

    I think that we have to ask the question of who are the free from foods really aimed at? Because with prescription gf foods the answer is simple coeliac end of. But the supermarkets see a lucrative niche market with the interest in wheat free foods and dairy free foods, the supermarkets can not compete with the NHS prescription system and look at how many foods in the free from section are made with pure oats. So being a cynic I wonder if the supermarkets are aiming at the healthy eating market that has been bombarded with adverts about bloating. Oats are a favourite with health conscious people and cyclist are renowned for eating lots of oats. We have sports stars like Andy Murray saying that a gluten free diet has improved his tennis but he is not a coeliac or made ill if and when he chooses to eat gluten.

    Maybe to find the answer to the question how many coeliac are there in the UK it should be a question in the next census.

  • Good points Jerry but I think that the Census is on the way out so that option may be removed. It would have been good to put 'Coeliac' under 'Religion' instead of Jedi ;-)

    Here's a couple of good links showing growth in Free From markets:

    dailymail.co.uk/femail/arti...

    mobile.foodmanufacture.co.u...

    *Note read the quote from CUK where they admin there is no national register of diagnosed Coeliacs.

    Whilst we welcome the competition in the food market which partly increases choice our focus is more on supermarkets adapting their mainstream recipes to make them gluten free. M&S and Waitrose have both been good on this score and it's great to know you can drop in their and buy 'normal' relatively healthy products which are mainstream and gluten free without being packed with unhealthy high fat, salt and sugar to make them palatable.

  • Hi

    Have just updated my food and drink directory and discovered this on the CUK site ties in with your question.

    coeliac.org.uk/sites/files/...

    A research project by coeliac uk to find out how many people have CD.

    Jan

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