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  4. What is the occurrence and consequence of clinically diagnosed coeliac disease and dermatitis herpetiformis in the UK today?

What is the occurrence and consequence of clinically diagnosed coeliac disease and dermatitis herpetiformis in the UK today?

Principal Investigator: Joe West, Professor of Epidemiology and Honorary Consultant Gastroenterologist

Institution: University of Nottingham.

Research classification: Management of coeliac disease and dermatitis herpetiformis

Project completion: 2015

Grant awarded: £80k (jointly funded with CORE – a charity fighting gut and liver disease)

The aim of this research was to understand the number of people affected by coeliac disease and dermatitis herpetiformis (DH) and the effects on health.

The research was based on analysing patient data from electronic health records from primary and secondary care and the cancer and death registries. Information from the health records of people with coeliac disease and or DH and groups of people without these conditions were compared. Statistics recording hospital admissions and discharge and maternity information were also explored.

The findings

  • Only 24% of people estimated to have coeliac disease have been diagnosed.
  • DH affects around one in 3,300 people and is most common in people in their fifties or sixties.
  • Women with undiagnosed (and therefore untreated) coeliac disease had a very small risk of having a preterm birth and low birth weight baby.
  • Women with undiagnosed coeliac disease had a very small increased risk of having a child with birth defects.
  • There was no increased risk of cancer, digestive disease, respiratory disease or death from heart disease for people with coeliac disease.
  • There was a small increased risk for a specific cancer, non Hodgkin's lymphoma, in people with coeliac disease. 
  • People with coeliac disease who were not vaccinated against pneumococcal disease were at increased risk of infectious pneumonia compared to people without coeliac disease.
  • One in four people diagnosed with coeliac disease had previously been treated for irritable bowel syndrome.

To plan health services it is crucial to understand the numbers of people affected by coeliac disease and the health consequences.

The research from this project will allow clear and precise guidance to be given to people with coeliac disease and help clinicians to focus on the long term follow up of complications that matter the most and could possibly be prevented.

Links to associated publications:

Zingone F et al. Socioeconomic variation in the incidence of childhood coeliac disease in the UK. Arch Dis Child 2015 May;100(5):466-73. doi: 10.1136/archdischild-2014-307105

West J et al. Incidence and prevalence of celiac disease and dermatitis herpetiformis in the UK over two decades: population-based study. Am J Gastroenterol 2014 May;109(5):757-68. doi: 10.1038/ajg.2014.55.

Abdul Sultan A et al. Pregnancy complications and adverse birth outcomes among women with celiac disease: a population-based study from England. Am J Gastroenterol 2014 Oct;109(10):1653-61. doi: 10.1038/ajg.2014.196

Abdul Sultan A et al. Causes of death in people with coeliac disease in England compared with the general population: a competing risk analysis. Gut 2014 Aug;64(8):1220-6. doi: 10.1136/gutjnl-2014-308285

Dhalwani NN et al. Women with celiac disease present with fertility problems no more often than women in the general population. Gastroenterol 2014 Dec;147(6):1267-74.e1; quiz e13-4. doi: 10.1053/j.gastro.2014.08.025

Card TR et al. An excess of prior irritable bowel syndrome diagnoses or treatments in celiac disease: evidence of diagnostic delay. Scand J Gastroenterol 2013 Jul;48(7):801-7. doi: 10.3109/00365521.2013.786130.

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