Late-onset celiac disease: can you develop it as an adult?

Yes, you can develop celiac disease as an adult. The condition is diagnosed more and more often after age 50, and can in principle appear for the first time at any age. Many people assume it's only a childhood thing.

I think the phrase 'later in life' causes a lot of confusion. The idea that you can no longer develop an autoimmune condition past a certain age simply doesn't hold here.

This post is about the adult side of celiac disease. For the broader picture, we have a separate explainer on the difference between gluten intolerance and celiac disease.

Can you develop celiac disease later in life?

Yes, you can. Celiac disease is an autoimmune reaction to gluten that can appear for the first time at any age, including after 40 or 50. Studies in older adults show that new diagnoses later in life are not rare. The genetic tendency is sometimes there for years, but only becomes active later.

According to Thuisarts.nl, celiac disease develops when your immune system reacts to gluten from wheat, rye and barley. That reaction slowly damages the small intestine.

The difference with children lies mostly in the picture. Children often get clear gut symptoms, while adults sometimes notice only subtle signals.

In some people this tendency stays quiet for a long time without symptoms. A clear trigger can then set the process in motion later on.

What can trigger late-onset celiac disease?

Usually there's no single cause to point to. Still, researchers often see a physical or emotional strain around the time symptoms begin. Think of an infection, a pregnancy, surgery or a long stretch of stress. These events may play a part in the tendency becoming active.

The table below lists possible triggers.

One thing to keep in mind: these are associations, not certainties. They don't prove the celiac disease was caused by them.

Why is celiac disease often missed in adults?

Because the symptoms are often vague and easily blamed on something else. In busy people in their thirties, forties and fifties, fatigue, bloating or irregular bowel habits quickly get labelled as 'busy', 'stress' or 'just getting older'. As a result, it sometimes takes years before anyone thinks of celiac disease.

On top of that, many adults wave their symptoms away. You're busy, you sleep badly, you eat at odd hours, so a bloated feeling seems logical.

In adults the symptoms are often atypical too. Not everyone has stomach pain or diarrhoea.

Sometimes the only signals are anaemia, deficiencies or ongoing tiredness. We wrote about that last one in persistent fatigue and its causes.

Vague symptoms aren't proof, but they are a reason to look further.

Recognise yourself in this? Our overview of celiac disease symptoms in adults lists the signals that often get overlooked.

Vague symptoms that get read the wrong way

Late-onset celiac disease doesn't always show up in the gut. Some people mainly notice fatigue, anaemia, bone loss or mood changes. Others notice a bloated belly after bread or pasta. That very variation makes the picture easy to mistake for something else.

Bone loss or unexplained anaemia can also be an early hint. A doctor may then decide to look beyond the gut alone.

According to the Voedingscentrum, a gluten-free diet is currently the only treatment for celiac disease. But cutting out gluten on your own can actually cloud a later test.

People who drop gluten by themselves can make the diagnosis harder. Some people choose to get tested first, before they change their diet.

What you can do if you're unsure

If your symptoms have been bothering you for a while, you can talk about them with your GP. Celiac disease is often easy to detect with a blood test, as long as you're still eating gluten. Your GP decides together with you whether further testing makes sense. Some people choose a first blood test to get more clarity.

Until then, keep eating gluten as usual, unless your doctor advises otherwise. Otherwise the result can be falsely reassuring.

Curious what such a test measures? Our celiac disease test guide explains which blood values matter and when testing can make sense.

You can also get a celiac disease test yourself as a first step. Always discuss an abnormal result with your GP afterwards.

I think 'too old for celiac disease' is a stubborn myth. The condition pays little attention to your age, and in busy adults it slips under the radar all too easily.

Does it feel like your symptoms keep getting brushed off as 'busy' or 'stress'? Write your symptoms down for two weeks and take that overview to your GP.

Every blood test result includes a professional assessment from a BIG-registered doctor. For treatment decisions, discuss your results with your GP.

References

• Vilppula A, et al. Increasing prevalence and high incidence of celiac disease in elderly people: a population-based study. BMC Gastroenterol. 2009. PMID 19558729.
• Singh P, et al. Global prevalence of celiac disease: systematic review and meta-analysis. Clin Gastroenterol Hepatol. 2018. PMID 29551598.
• Ludvigsson JF, et al. Diagnosis and management of adult coeliac disease: guidelines from the British Society of Gastroenterology. Gut. 2014. PMID 24917550.
• Thuisarts.nl. Ik heb coeliakie. Nederlands Huisartsen Genootschap (NHG).