If you think that you might have coeliac disease, we explain the process you should follow, from diagnostic tests, treatments if you test positive, and the relevant follow-up activities.
Get to know all the ways to test and diagnose coeliac disease as well as the right treatment.
The symptoms of coeliac disease are wide-ranging and can differ from one individual to another, which means many people may not know they have it. Another way in which coeliac disease goes undiagnosed is because it can easily be confused with other conditions related to the gut, such as irritable bowel syndrome (IBS).
If you think you may have coeliac disease, it is important to find out whether this is the case. You should consult your doctor first and they may recommend you take a blood test. If the results from that blood test indicate that you may have coeliac disease, you will be referred to a gut specialist (gastroenterologist) who may carry out a confirmation test in the form of a biopsy or further blood tests.
It is important not to change your diet and stop eating gluten before you know whether you have coeliac disease or not. This is because the tests for coeliac disease work by looking at how your body responds to gluten.
The UK’s National Institute for Health and Care Excellence recommends eating some gluten in more than one meal a day for at least six weeks before testing.
There are specific blood tests that are used to diagnose coeliac disease. They look for antibodies made by the body in response to the presence of gluten in food. A simple blood sample is required for the test.
In adults and children, the blood is tested for total immunoglobulin (IgA) and IgA tissue transglutaminase antibody (shortened to tTG). Presence of the tTG antibody is associated with gluten-sensitive conditions including coeliac disease. In this case, further testing will be done to confirm the diagnosis.
It is possible to get a negative blood test and still have coeliac disease. This could be caused by a person not eating gluten at the time of the blood test. If you have continuing symptoms after a negative test for coeliac disease, consult with your doctor. Some people with coeliac disease do not make the usual coeliac disease antibodies. This is called IgA deficiency, and this should also be checked at the initial blood test.
If the gastroenterologist orders a biopsy to confirm coeliac disease after a blood test, an endoscopy will be required. A thin, flexible tube called an endoscope with a light and camera at the tip is passed through a patient’s mouth and stomach into the gut. The patient will first be given anaesthetic to numb the throat.
A biopsy is a small sample of tissue taken from the small intestine in order to examine it more closely and to check for damage to the lining, a tell-tale sign of coeliac disease.
Since there is a hereditary component in coeliac disease, it could be helpful to inform close relatives of a confirmed diagnosis, as it is information that may help them if they are suffering from certain symptoms associated with the condition.
If you have had a confirmed diagnosis of coeliac disease, the only effective course of action is to follow a strict gluten free diet, which should lead to a disappearance of the symptoms. You will no longer be able to eat foods that contain barley, rye, wheat, including wheat flour, semolina, durum, couscous and spelt.
Once a person has been diagnosed with coeliac disease, gluten must be removed completely from their diet. It is helpful to have sessions with a dietitian after diagnosis so that you can analyse what eating habits must be changed and how to replace gluten whilst ensuring a well balanced diet.
You will need to find out what food and products are gluten-free and become used to checking the labelling on processed food. You might also choose to seek out a local coeliac group and get support and advice from people who have been through the process before you.
The good news is that gluten can be replaced by other proteins without any adverse effects on a person’s overall nutrition, and that many foods are naturally gluten free, including all fresh fruit and vegetables, fish, meat and poultry, and beans and pulses. And for snacks and treats that typically contain wheat or other gluten-containing cereals, there are more and more gluten free alternatives, such as those made by Schär.
Parents of children diagnosed with gluten should get advice from a dietitian and ensure that other people know about and understand the diagnosis, particularly staff at school and other parents.
As well as cutting gluten out of your diet, your doctor or dietitian may also recommend that you take vitamin and mineral supplements, at least during the initial period after your diagnosis. This is to ensure that your body receives all the nutrients it needs while your digestive system repairs itself. Taking supplements can also correct any specific deficiencies you have developed, such as anaemia.
In some cases, coeliac disease can cause the spleen to work less effectively and this may cause other type of symptoms. Please consult your physician also in case of unexplained symptoms: you may think they are not related to coeliac disease but in fact they might be and your doctor will know how to handle them.
Some coeliac patients have an itchy rash call dermatitis herpetiformis. Usually, eliminating gluten from the diet will clear it up, but in some cases this can take longer. In this case, a doctor may prescribe a pharmacological treatment.
Regular follow-ups are an important part of managing coeliac disease after a diagnosis. At the beginning, a patient may need several check-ups as well as nutrition counselling, but then it will become an annual review with a family doctor or a specialist. These check-ups will include weight checks and, for children, examination of puberty status, as well as general well-being.
In the majority of patients with coeliac disease the symptoms disappear promptly once the person switches to a gluten free diet. Many patients notice a distinct clinical improvement in their symptoms within a few weeks or months. But in some cases, the symptoms can take longer to disappear.
The vast majority of people, once diagnosed, will feel better and see symptoms disappear within weeks or months. Should this not be the case, there are several reasons that could be investigated, from the adherence to the diet to other causes. Your doctor will help you find out what is happening in such a circumstance.
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