Sarah Keogh, Registered Dietitian
April 2025
Coeliac disease is not always easy to diagnose – in fact, it takes an average of 14 years for people to be diagnosed with coeliac disease from their first symptoms and going to their doctor. Some people have been going to their doctor for 30-40 years before being diagnosed. Why does this happen?
In past coeliac disease was seen as a childhood disease that caused diarrhoea and weight loss. It is only in the last 30 years that coeliac disease is seen as something adults can have. And it is only in the last 15-20 years that coeliac disease is known to cause nervous system problems and that you can have no gut symptoms and still be coeliac.
So how do you know to get tested?
There are 6 key times to check for coeliac disease:
- Any time you have gut symptoms that are ongoing – bloating, diarrhoea (even if it’s just once a week or twice a month), constipation, stomach pain. Even mild gut symptoms can be a sign of coeliac disease.
- If you have irritable bowel syndrome and have never been tested for coeliac disease. If you were tested for coeliac disease but you were avoiding gluten at the time, you have had a false negative result – talk to your doctor or dietitian about getting retested.
- Someone in your family is diagnosed with coeliac disease. Coeliac disease runs in families so everyone needs to be tested, even if you have no symptoms.
- Recurrent mouth ulcers, poor tooth enamel or an itchy, blistery, skin rash that won’t go away.
- You have type 1 diabetes, underactive thyroid, or Down’s syndrome. These all carry a higher risk of coeliac disease.
- You have repeated low iron or low B12 that doesn’t have any other explanation (or even if it does…)
Does diagnosis matter if you don’t have symptoms?
Yes. Untreated coeliac disease increases your risk of osteoporosis, bowel cancer, and infertility as well as causing low energy, fatigue and poor concentration. In children, undiagnosed coeliac disease can cause stunting, affecting growth, development and puberty. You may not realise how bad you are feeling until you get diagnosed and cut out gluten. Many of our members report a huge improvement in energy and concentration once they are diagnosed and treated.
How to get tested?
- Keep eating gluten – you need to be eating gluten for at least 6 weeks before being tested for coeliac disease
- See your GP for a coeliac blood test. Ask your doctor to check for iron, folate, vitamin B12 and vitamin D at the same time.
- If you blood test is positive, you will need a biopsy – which is painless and is a quick day visit to the hospital.
- Once you are diagnosed make sure you see a registered dietitian for detailed advice on a strict gluten free diet and fertility nutrition.
Any questions? Email us at info@coeliac.ie or follow us on Instagram @coeliacireland.
