Even if you have many of the classic symptoms of coeliac disease, there are many reasons why being formally diagnosed with coeliac disease is still very important.

Let’s take a detailed look at the benefits of being formally diagnosed with coeliac disease, including practical benefits and health benefits. We’ll also explain why getting formally diagnosed with coeliac disease could help your family’s health too.

Are my symptoms actually coeliac disease?

The most common gut symptoms of coeliac disease are diarrhoea, abdominal pain (stomach ache), bloating and flatulence, indigestion, constipation and vomiting. . You can check your symptoms using our online symptom checker.

However, there are many other intestinal conditions that also cause these symptoms, from IBS to lactose intolerance. That’s why it’s important to see your GP so that these other causes can be ruled out.

Conversely, it is estimated that only 36% of people with coeliac disease have a formal diagnosis. This means that thousands of people are misdiagnosed with conditions like IBS, and so they miss out on the symptom relief that comes with following a strict gluten free diet.

How does a formal diagnosis of coeliac disease help your health?

Getting formally diagnosed with coeliac disease has a number of benefits for your health, including:

1. Access to expert medical care – following a positive blood test, your GP will refer you to a specialist gastroenterologist for further testing. They will assess your condition and check for other issues associated with coeliac disease, such as malnutrition, vitamin and mineral deficiencies, weak bones, fertility issues and growth problems.
2. Access to professional dietitians – if you’ve been diagnosed with coeliac disease, you’ll be referred to a professional dietitian. They will give you advice on how to follow a healthy gluten free diet.
3. Starting effective treatment – once you have been diagnosed with coeliac disease, you can start the effective treatment of following a strict gluten free diet. (Please note it’s important not to cut out gluten prior to a diagnosis. If you have cut gluten out of your diet your GP will recommend re-introducing gluten for 6 weeks before testing to avoid a false negative result.)
4. Reducing long-term complications – getting a formal diagnosis and starting a strict gluten free diet will not only help you feel better now, it can also reduce the risk of any long term complications.
5. Keeping your family healthy – while the chances of having coeliac disease in the general population is 1 in 100, this rises to 1 in 10  for immediate family (parents, children and siblings). Getting formally diagnosed with coeliac disease means you can help keep your family members healthy by encouraging them to get tested.

What are the practical benefits of getting formally diagnosed with coeliac disease?

In addition to the many health benefits, there are also a number of practical benefits of getting diagnosed with coeliac disease, including:

1. Access to gluten free on prescription – depending on where you live, getting formally diagnosed with coeliac disease could mean you have access to gluten-free food on prescription from Glutafin. In some areas of England, this includes bread and flour mixes, while in Scotland, Wales and Northern Ireland, you can choose from a wider range of gluten free foods.
2. Access to support at work or in school – once you’ve been formally diagnosed with coeliac disease, your employer, school or college has an obligation to make reasonable adjustments to provide for your needs under the Equality Act 2010
3. Preparing your kitchen – once you understand your condition, you can make your kitchen safe to avoid cross-contamination and keep your diet strictly gluten-free.
4. Learning what and where to eat – knowing you have coeliac disease will help you to know what to eat, how to shop safely.

More than just a label

As you can see, a diagnosis of coeliac disease is not just a label for your condition. It can be the key that unlocks important medical care, dietitian support, gluten-free on prescription and much more. It can also unlock a future that is largely symptom-free if you follow a strict gluten-free diet.

So, even if you are sure that you have the symptoms of coeliac disease, and you have found a gluten-free diet to be effective, it’s still really important that you seek a formal diagnosis from your GP.

Frequently asked questions about getting diagnosed with coeliac disease

Q. How is coeliac disease diagnosed?

A. Coeliac disease testing involves an initial blood test. This is usually followed by an endoscopy exam to look at the lining of the small intestine, which often includes a biopsy.

Q. Is there a cure for coeliac disease?

A. No. There is currently no cure for coeliac disease. However, following a strict gluten-free diet can effectively treat the symptoms in most people and allow the gut lining to heal.

Q. How do I know if my gut symptoms are coeliac disease?

A. Coeliac disease shares its symptoms with many other gut conditions, so it is important to get formally tested if you think you may have the condition. Use our online symptom checker to see if you may have coeliac disease.

Q. Why do I have to keep eating gluten before testing for coeliac disease?

A. If you stop eating gluten before your test, then your gut may start to heal, and this will produce a false negative. You need to eat gluten daily for around six weeks before your test.

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