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10 Essential Facts about Coeliac Disease

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10 Essential Facts about Coeliac Disease

Coeliac (or Celiac, in USA) disease is often misunderstood as a simple food allergy or a lifestyle choice. In reality, it is a serious genetic autoimmune condition where the ingestion of gluten leads to damage in the small intestine. For the roughly 1 in 100 people living with the condition in the UK, a gluten-free life is a medical necessity, not a trend.


1. It is an autoimmune disease, not an allergy

Unlike a peanut or shellfish allergy, which is an immediate IgE-mediated response, coeliac disease is an autoimmune condition. When someone with the disease eats gluten—a protein found in wheat, barley, and rye—their immune system attacks their own healthy body tissues, specifically the lining of the small intestine.

2. The damage happens in the villi

The small intestine is lined with tiny, finger-like projections called villi. These are responsible for absorbing nutrients from food. In coeliac disease, inflammation causes these villi to flatten (villous atrophy). This significantly reduces the surface area available for nutrient absorption.

3. Gluten is the sole trigger

Gluten is a composite of storage proteins found in several types of cereal grains. For those with coeliac disease, even a tiny amount of gluten—such as a crumb from a shared toaster—can trigger an immune response and cause intestinal damage, even if no outward symptoms are felt immediately.

4. Symptoms are incredibly varied

While many associate the disease with digestive issues like bloating, diarrhoea, and abdominal pain, it can affect the entire body. “Silent” coeliac disease exists where a person has no digestive symptoms at all, but instead presents with:

  • Unexplained iron-deficiency anaemia.

  • Extreme tiredness and fatigue.

  • Recurrent mouth ulcers.

  • Neurological symptoms like “brain fog” or ataxia (balance issues).

5. Dermatitis Herpetiformis is the “skin version”

Some people with coeliac disease develop a specific skin manifestation called Dermatitis Herpetiformis (DH). It is a chronic, intensely itchy, blistering skin rash that typically appears on the elbows, knees, and buttocks. If you have DH, you have coeliac disease, as the skin reaction is caused by the same gluten intolerance.

6. You must be eating gluten to be tested

A common mistake is starting a gluten-free diet before seeking a diagnosis. Blood tests (looking for specific antibodies) and a gut biopsy (via endoscopy) both rely on the presence of the immune response triggered by gluten. If you stop eating gluten before the tests, you may receive a “false negative” result.

7. It is a genetic condition

Coeliac disease runs in families. If you have a first-degree relative (parent, sibling, or child) with the condition, your risk of developing it increases significantly. Specific HLA-DQ2 and HLA-DQ8 genes are linked to the disease, though having the genes doesn’t guarantee you will develop the condition.

8. Malnutrition is a serious risk

Because the damaged villi cannot absorb nutrients properly, untreated coeliac disease can lead to long-term health complications. These include osteoporosis (due to poor calcium absorption), vitamin B12 deficiency, and in children, delayed growth or “failure to thrive.”

9. The only treatment is a lifelong gluten-free diet

Currently, there is no pill or injection to cure coeliac disease. The only way to manage the condition and allow the gut to heal is a strict, lifelong gluten-free diet. This involves avoiding obvious foods like bread and pasta, but also “hidden” gluten in sauces, beers, and even some medications or lip balms.

10. Cross-contamination is a major hurdle

For those with coeliac disease, “may contain” labels are a serious warning. Cross-contamination can happen anywhere—from wooden spoons and colanders to deep fat fryers that have cooked breaded products. Total avoidance of cross-contact is essential to prevent ongoing internal damage and long-term health risks.


MyHSN Top Tip: If you suspect you have a gluten intolerance, do not cut gluten out of your diet until your GP has performed the necessary blood tests. If you stop eating it too early, the results will not be accurate, making a formal diagnosis much harder to achieve.

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