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Are you living with undiagnosed coeliac disease?

Did you know that an estimated 500,000 people in the UK are currently suffering from undiagnosed coeliac disease?   Could you be one of them? 

This week is Coeliac UK Awareness Week (13 – 19 May 2019) and in this article we take a look at this serious illness which, left untreated, can have severe long term effects upon your health. 

Coeliac disease – what is it?

Dr Sarah Goulding, a GP from leading private practice Concierge Medical, has considerable experience of coeliac disease.  She explains that it’s not an allergy or intolerance, as some people think, but an autoimmune disease which can affect 1 in every 100 people. 

This illness inflames and damages the lining of the small intestine, which absorbs most of the important nutrients our bodies need.   In those affected, it’s caused by eating gluten, which is a protein found in wheat, barley and rye.  Some people many also have a sensitivity to oats.

If left untreated, coeliac disease can cause a range of complications including malnourishment, anaemia, osteoporosis, recurrent miscarriage, liver inflammation and cancer of the small intestine.  Following a positive diagnosis, if sufferers then eliminate gluten from their diet, these risks usually reduce to normal levels relatively rapidly.

Caroline Quentin, actress and television personality, became a patron of Coeliac UK after her own diagnosis in 2015.  Like many others, she had no idea what had been causing her such discomfort for the past 3 decades, recalling: “I struggled for years with constant stomach pains, vomiting and total exhaustion”.

So how can you tell if you’re living with this hidden condition?

Symptoms of coeliac disease

One of the reasons for delayed diagnosis of this complex condition is that there are many possible symptoms.  These can include the following:

  • Stomach pains and cramping
  • Excessive flatulence
  • Unexplained weight loss (in some people)
  • Nausea
  • Fatigue
  • Anaemia
  • Mouth ulcers
  • Very itchy non-specific rash
  • Growth problems in children and delayed puberty

Some people, however, may not have any obvious symptoms at all. 

It’s important to recognise there’s a genetic link between coeliac disease and other related auto immune diseases, predominantly a thyroid condition or diabetes type 1.  If you have a parent, sibling or child with any of these conditions, your risk increases – there’s a close familial link in 10% of diagnosed cases.

Woman sitting crouched over in pain in a field, with the image in sepia

What can you do?

Dr Goulding advises you to contact your own doctor immediately if you have any of the above concerns – and warns:

“If you recognise these symptoms, don’t stop eating products containing gluten immediately!  We can give you a simple blood test but this will only work if there’s still gluten in your system.”

The test checks for a raised antibody response to gluten.  If it’s high in an adult, then a biopsy may be needed to confirm any diagnosis.  In young children, it can be easier to identify coeliac disease as there are fewer other common conditions at that age and genetic testing can also help to support a diagnosis.  So children can often be diagnosed purely through blood tests and a good response to eliminating gluten from their diet.

Worryingly, about 25% of people diagnosed with irritable bowel syndrome (IBS) subsequently find out they actually have coeliac disease.  If you have already been diagnosed with IBS, therefore, it’s very important to check you’ve had the correct blood tests and that coeliac disease has been effectively excluded.

What happens next?

If coeliac disease is confirmed, you will need to follow a gluten free diet for life. 

Having a close relationship with your doctor is hugely beneficial when undergoing diagnosis, whatever the outcome of your tests.  And that’s where Concierge Medical members have the reassurance of seeing the same family doctor every time in the comfort of their own home – with no 10 minute appointment limit!  We believe that continuity of care is vitally important to anyone living with any form of medical condition.

Our expanding practice covers the Cotswolds, Warwickshire, Gloucestershire, Oxfordshire, Worcestershire and Wiltshire.  Call us on 01451 600900 to find out more about our award-winning private GP services and how we put caring for your health at the heart of your family.   

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Note: The advice in this article is provided for general guidance only and should not be relied upon for medical diagnosis.  Please follow the specific advice given by your own doctor and/or  consultant.