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What Does it Mean if Your Gluten Free Diet Isn’t Working?

What Does it Mean if Your Gluten Free Diet Isn’t Working?

What Does it Mean if Your Gluten Free Diet Isn’t Working?

Most people who have been diagnosed with coeliac disease will find that their symptoms start to improve within a few weeks of following a strict gluten free diet.

However, a small proportion of people will continue to experience symptoms of coeliac disease despite changing what they eat. Others may find that their symptoms initially improve with a gluten free diet, only to return later.

So why does this happen, and what should you do about it if you are following a strict gluten free diet, but your symptoms won’t go away?

Why do symptoms normally stop?

If you have coeliac disease, then your immune system will react to gluten as if it is attacking the body. This is known as an auto-immune response. By removing gluten from the diet completely, you remove the trigger for this response and your immune system stops taking inappropriate action to defend itself.

In most cases, following a gluten free diet not only stops the auto-immune response, preventing symptoms, but also allows the gut to recover from the damage caused by that response in the past. As long as you stick to a strict gluten free diet, your symptoms should gradually ease and they will not return unless you accidentally ingest gluten again.

family eating gluten free breakfast

Why your symptoms may persist

There are several reasons why your symptoms of coeliac disease may persist, even if you feel that you are sticking to a strict gluten free diet. You should always discuss such symptoms with your GP so that they can investigate further. Persistent symptoms of coeliac disease can be caused by:

  1. Accidental gluten consumption – the most likely cause of continuing symptoms is accidental gluten consumption. This may be due to cross-contamination or simply a lack of understanding of what foods contain gluten. Your dietitian will help you to work on your gluten free diet to ensure it is as strict and safe as possible.
  2. Additional diagnosis  – in some cases, you may be suffering from another condition, alongside coeliac disease, such as lactose intolerance or IBS. The symptoms associated with these conditions are often very similar to coeliac disease and require specific dietary treatment alongside your gluten-free diet.
  3. Hypersensitivity – some people are hypersensitive to gluten and may experience symptoms following exposure to even the smallest amounts. Once again, your dietitian will help you to eliminate as much gluten as possible from your diet, while still ensuring that you get all the nutrients that your body needs.
  4. Slow response to treatment – some people simply take longer to respond to the treatment. You may simply need to be patient and stay vigilant in following your strict gluten free diet.
  5. Other causes – in around 0.3% of people diagnosed with coeliac disease, the condition may not respond to a gluten free diet. This is known as non-responsive coeliac disease, or if symptoms persist for more than 12 months, it is known as refractory coeliac disease. This is extremely rare, and it is much more likely that there is a simple explanation for your ongoing symptoms. However, you should always talk to your GP if your symptoms persist, so that you can access specialised services if required.
Coeliac Disease

What to do if your symptoms don’t improve with a gluten free diet?

If you’re following a strict gluten free diet, but your symptoms are not responding, then you should speak to your GP. They will work with you to eliminate the most likely causes, such as accidental ingestion of gluten or additional/ alternative diagnoses.

coeliac disease diagnosis

What is gluten?

Gluten is a protein found in wheat, rye and barley. The main function of gluten is to act as a binding agent, which gives baked goods their characteristic structure and texture. Gluten is found in many foods, for example:

  • Bread
  • Flour
  • Pasta
  • Biscuits
  • Cakes

Gluten is also present in many foods you might not expect, for example:

  • Breadcrumbs on ham
  • Sausages and burgers
  • Chips
  • Ice-cream
Coeliac disease symptoms

Foods to check

It’s always best to check food labels. For more information on which foods do and don’t contain gluten, along with foods to check, visit our food allergen section in living gluten free.

Some people with coeliac disease may also not be able to tolerate ingredients such as gluten free wheat starch or oats, we advise that you ask your gastroenterologist or dietitian if you can include them in your diet.

Read about the symptoms of coeliac disease
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    Can I suddenly become coeliac?

    People with coeliac disease have specific genes, which means they may develop the condition when they eat gluten. However, coeliac disease can develop at any age and researchers are unsure why this is the case.

    If you are experiencing symptoms and suspect you may have coeliac disease, the first step could be to take an online assessment- a short questionnaire asking about your symptoms and other risk factors. If the assessment indicates that you might have coeliac disease, the next step would be to make an appointment with your GP who can then undertake a blood test to check for coeliac antibodies.

    If the result of your blood test is positive, your GP should refer you to the hospital for further tests in order to confirm a diagnosis of coeliac disease. It is important not to remove gluten from your diet during the diagnosis process.

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    © 2025. Glutafin. Dr. Schär UK Ltd. 401 Faraday Street, Birchwood Park, Warrington, WA3 6GA