Non responsive and refractory coeliac disease

In most cases, the reason people don’t feel better after starting a gluten free diet is because they are still eating foods containing gluten without knowing it. Carefully examine everything you are eating, you may be missing something while you’re getting used to your new gluten free life. Our Helpline team might be able to help too, so call us on 0333 332 2033.

It could be that you have another additional condition which may be causing the symptoms, such as irritable bowel syndrome or lactose intolerance.

Refractory coeliac diseaseHowever, a small number of people with coeliac disease do not respond to the gluten free diet or may initially respond to the diet and then start to experience symptoms again. This is called non responsive or refractory coeliac disease.

For most people with non responsive coeliac disease, the first step is a thorough dietary review with a dietitian to identify potential sources of gluten contamination.

You can start this process with a visit to your doctor. Mention that although you are now strictly gluten free your symptoms have not reduced and ask to be referred to the dietitian.

During the dietary review, the dietitian may discuss avoiding certain foods which may be causing sensitivity. After making sure you are following a strict gluten free diet, if you are still experiencing symptoms, your healthcare team may do further tests to eliminate other potential causes of your symptoms. Again, request this from your doctor.

Refractory coeliac disease

Refractory coeliac disease is a very rare complication of coeliac disease with an increased risk of certain types of cancer.

Symptoms of refractory coeliac disease include:

  • ongoing severe diarrhoea
  • stomach pain
  • sudden unexpected weight loss.

Refractory coeliac disease is estimated to affect around two to five percent of people with coeliac disease. In most cases, refractory coeliac disease is diagnosed in people over the age of 50.

Diagnosis of refractory coeliac disease should be conducted in a specialist centre where further tests will be conducted. Your GP can refer you to the correct specialists.

It’s likely that you’ll need further endoscopy investigations to look at your gut lining again. In people with refractory coeliac disease, the lining of the gut remains damaged and little or no improvement is seen from when you started the gluten free diet.

Treatment

Because refractory coeliac disease is so rare, there have been limited studies on it. In addition to the gluten free diet, drug treatments may be needed such as steroids, immunosuppressive drugs, chemotherapy or a combination of these.

The treatment chosen will need to be closely monitored by the specialist healthcare team.

Even if you are not responding to the gluten free diet, it’s essential that you continue to follow a strict gluten free diet to prevent further ongoing symptoms and future complications.

Regular reviews with your dietitian are important to make sure that you’re getting all the nutrients that you need and that your diet is well balanced.

Complications

Refractory coeliac disease is associated with a higher risk of complications and is associated with a poorer long term outlook (your GP may call this your prognosis).

There are two types of refractory coeliac disease: type 1 and type 2. People with type 2 refractory coeliac disease are at an increased risk of developing certain types of gut cancer.