Coeliac UK Awareness Week

Coeliac UK 50 years
Last modified on 14/05/2018

by Norma McGough, Director of Policy, Research and Campaigns, Coeliac UK.

Coeliac UK, the largest independent charity for people living gluten free, is celebrating its 50th anniversary.

During this year’s Awareness Week from 14 – 20 May the charity will be raising awareness of the symptoms of coeliac disease and the importance of early diagnosis and sticking to a GF diet to prevent complications of the disease.

10 signs of coeliac disease

Coeliac disease affects 1 in 100 people but only 24% have a medical diagnosis so nearly half a million people have coeliac disease but don’t know it. Coeliac disease is a serious lifelong autoimmune condition where the immune system attacks its own tissues and eating gluten is the trigger. It is characterised by specific antibodies (tissue transglutaminase, tTGA and endomysial, EMA), genotypes (HLA DQ) and the typical appearance of the damage to the lining of the small bowel.  

Although a gut disorder, coeliac disease can affect different systems in the body and symptoms vary from person to person so it can be a challenge to recognise. The treatment for coeliac disease is a strict gluten free diet for life and so confirming diagnosis and getting established on the gluten free diet is important to reduce the risk of associated complications. Undiagnosed, untreated coeliac disease is associated with complications including anaemia, osteoporosis, neurological conditions such as gluten ataxia and neuropathy, and although rare there’s an increased risk of small bowel cancer and intestinal lymphoma.

To help you recognise the signs of coeliac disease in patients, here is a list of 10 symptoms and associated conditions:

  1. Ongoing or unexplained gut symptoms like feeling sick, vomiting, diarrhoea, constipation, stomach pain, cramping or bloating.
  2. In patients feeling tired all the time
  3. In patients with unexpected weight loss
  4. Severe or persistent mouth ulcers
  5. Unexplained iron, vitamin B12 or folate deficiency
  6. In patients who have type 1 diabetes or autoimmune thyroid disease there is a higher risk of coeliac disease so testing is recommended, even without symptoms.
  7. In patients who have irritable bowel syndrome (IBS), it is important to make sure that these patients have been tested for coeliac disease. The symptoms can be similar and 1 in 4 people with coeliac disease have previously been treated for IBS.
  8. Patients who have a first‑degree relative (parent, sibling or child) with coeliac disease should be tested. The risk of having coeliac disease rises to 1 in 10 in first degree relatives with coeliac disease.
  9. In patients with unexplained subfertility or recurrent miscarriage national guidelines recommend that testing for coeliac disease should be considered
  10. In patients with unexplained neurological symptoms (such as loss of balance, uncoordinated movements, numbness and tingling in the hands or feet) guidelines recommend that testing should be considered.

Throughout testing, it is important that patients continue to eat foods which contain gluten (such as bread, pasta and breakfast cereals) to make sure that the test results are accurate.

You can also signpost patients to take the Coeliac UK online assessment for coeliac disease. This short self-assessment will take you through the symptoms of coeliac disease and other risk factors.

This year we have launched a new research fund appeal to raise £5 million and on Monday 14 May, to mark the start of our Awareness Week a new £750k fund opens for research in gluten free food production and coeliac disease diagnostics and self-care. Researchers and businesses can apply for a share of the funding with grants ranging from £50k to £250k.

For information about joining our HCP network.

The BDA wants to support our members to make the case for the ongoing provision of Gluten Free products by the NHS:Making the case for Gluten Free