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Coeliac disease: what is time from onset to diagnosis?
Q. With increased awareness of coeliac disease, more patients are being diagnosed in later life. Sometimes it is with vague symptoms, such as diarrhoea of apparently relatively short duration. When patients read about the long-term risks of untreated coeliac disease they often ask how long they have had it without knowing. Is there any work looking at this and does the symptom complex help answer the question?
A. There have been a few studies that have looked at the time taken between initial onset of symptoms to diagnosis of coeliac disease. The most recent study from 2001 suggested the mean time of delayed diagnosis was 17 years in those over 65, and 14 years in the adult population. This was based on a questionnaire of signs and symptoms and their duration, at the moment of diagnosis.
Historically, there has been concern over the mortality risks from malignancy associated with coeliac disease from studies carried out in the 1970s and 1980s. However, a large population-based study last year suggested people with coeliac disease have only modest increases in overall risks of malignancy and mortality.
Most of this risk occurred in the first year after diagnosis, which may be explained by the additional investigation and surveillance that occurs at this time.
Interestingly, people with coeliac disease have a noticeably reduced risk of breast cancer; the mechanism for this is not understood. This should be reassuring to most
patients diagnosed with coeliac disease, who are likely to have had symptoms for many years prior to diagnosis.
Furthermore, patients are likely to be
reassured by having a DEXA scan soon after diagnosis, as coeliac disease is a moderate risk factor for osteopenia and osteoporosis.
Annual review by GP or hospital clinic, with advice to attend in the interim if there are any gastrointestinal 'red flag' symptoms, is appropriate and offers reassurance for most people with coeliac disease.
Sohail Butt is a GP with an interest in coeliac disease, in Ashford, Middlesex