Celiac disease symptoms in adults: the signs that get missed

Celiac disease is an autoimmune reaction to gluten, and roughly 1 in 100 people has it. In adults the symptoms are often silent: tiredness, anaemia or low iron instead of stomach pain. What strikes me is how quickly those signals get blamed on stress or a busy life.

Do you know that 'I'm just tired' feeling? Then this piece is for you.

That's what makes celiac disease hard to spot in adults.

Below you'll read which complaints belong to celiac disease, and which of them get missed in adults. You'll also read when you can start thinking about celiac disease.

What are the symptoms of celiac disease?

Celiac disease causes symptoms because gluten damages the small intestine, so you absorb nutrients less well. The classic ones are diarrhoea, stomach pain and bloating. In adults the picture can differ: fatigue, anaemia or skin complaints. According to Thuisarts.nl, the presentation varies a lot per person.

Gluten sits in wheat, rye and barley, and so in lots of bread and pasta. The Voedingscentrum explains that people with celiac disease avoid these grains for life.

This is a lifelong sensitivity, not a temporary allergy. Your immune system reacts to gluten again and again.

The damage sits in the gut villi, tiny folds that absorb nutrients. When they get damaged, your body can miss iron or vitamins. That explains why celiac disease can show up outside the gut.

Some people barely have stomach complaints, and that's called silent celiac disease.

Celiac disease can appear at any age, even after forty. That surprises many people, because they see it as a childhood illness. So celiac disease symptoms in adults sometimes stay unnoticed for years.

Curious how the diagnosis works? See how a celiac disease test actually runs.

Classic versus silent complaints side by side

The difference is mostly about where you notice it. Classic celiac disease gives clear gut complaints. Silent or atypical celiac disease shows up mainly outside the gut, for example through your blood or your skin. The table below sets both side by side, with a clue per signal.

Look at the third column too. It shows which blood value or clue fits a signal.

No single signal proves anything on its own. But a combination can give a doctor reason to look further.

Which complaints get missed in adults?

The complaints that get missed are the ones that don't point to the gut. Think of long-term tiredness, stubbornly low iron or recurring mouth ulcers. Bone loss at a young age can be a clue too. These signals get easily blamed on a busy life, while they sometimes relate to celiac disease.

Take fatigue. It can have dozens of causes, from lack of sleep to anaemia. You can read more in this piece on the causes of persistent fatigue.

Low iron often shows up during a routine check. If iron stays low despite supplements, a doctor may look wider. You'll find more depth in this article on iron deficiency and anaemia.

Low vitamin B12 or folate can be a silent signal too. Your gut then absorbs these less well. The result can be tiredness or trouble concentrating.

Unintended weight loss can be part of it too, though it doesn't always stand out. Sometimes your appetite or digestion changes gradually. A doctor weighs this against your other complaints.

Recurring mouth ulcers belong on this list as well. They look harmless, but can fit a pattern.

Your skin can speak up too. Dermatitis herpetiformis is an itchy rash that sometimes goes together with celiac disease.

A celiac attack: what people mean by it

By a 'celiac attack' people usually mean a strong flare of symptoms after eating gluten. Think of stomach pain, diarrhoea, nausea or extreme tiredness within a few hours. It isn't an official medical term, but the experience feels very real to many people.

Such flares vary a lot per person. One person notices little, another is floored for a day.

After a flare, people sometimes feel wiped out for days. You can easily confuse that with an ordinary slump. Yet it can be a reaction to gluten.

Keep eating gluten until any testing is finished. If you stop too early, the result can become unreliable.

When can you start thinking about celiac disease?

You can think of celiac disease with complaints that keep coming back without a clear reason. For example low iron that won't recover, ongoing tiredness or unexplained gut complaints. If celiac disease runs in your family, that's relevant too. Feel free to discuss such patterns with your GP.

There's no fixed moment when you 'have to' test. It's about the pattern: complaints that persist or keep returning.

The diagnosis usually starts with blood testing for antibodies. Sometimes a referral for further tests follows.

After a positive blood result, a conversation about next steps often follows. Your GP decides together with you what makes sense.

Want to understand which values play a role? Have a look at which blood values indicate celiac disease.

Some people choose to have their blood tested themselves when complaints persist. You could, for instance, get a celiac disease test and discuss the result with your GP. See it as extra information, not as a diagnosis.

What you can do now

Keep an eye on complaints that don't go away on their own, even if they seem harmless. In my experience, people wave away their signals for years as 'just busy'. Those silent complaints deserve attention, without you having to fear the worst right away.

Do you recognise a pattern that keeps returning? Discuss ongoing complaints such as unexplained tiredness or stubbornly low iron with your GP, and mention that celiac disease can run silently.

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

References

• Singh P, et al. Global prevalence of celiac disease: systematic review and meta-analysis. Clin Gastroenterol Hepatol. 2018. PMID 29551598.
• Halfdanarson TR, et al. Hematologic manifestations of celiac disease. Blood. 2007. PMID 16973955.
• 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).