Could you be living with coeliac disease? Here's the signs to look out for

One In 100 people is affected by coeliac disease in Ireland, but it is often mistaken for other conditions

While there is no cure for coeliac disease, once it’s identified, it can be effectively managed through a strict gluten-free diet. Picture: iStock

Gut symptoms like diarrhoea, constipation, or bloating are what most people will think of when they hear coeliac disease, but that’s not the whole story. A hyper focus on these symptoms means many people remain undiagnosed — in Ireland, it’s estimated to be 78,000 people.

Coeliac disease is a lifelong autoimmune disease where the body’s immune system reacts to gluten. That reaction damages the lining of the intestine, preventing the body from absorbing important nutrients.

In Ireland, one in every 100 people are affected by coeliac disease — some 80,000 people live with the disease without realising it. Coeliac disease has a strong genetic link. “About a third of people in Ireland will have the genes to be coeliac, but it needs the trigger as well,” says Sarah Keogh, a CORU registered dietitian. “If you have a family member with coeliac disease, you have a one in 10 chance of also being coeliac. It is also more common in people with an underactive thyroid and people with type-1 diabetes.”

Dietician Sarah Keogh: About a third of people in Ireland will have the genes to be coeliac, but it needs the trigger as well

The headline symptoms of severe diarrhoea, constipation, bloating, vomiting, and other stomach issues are often the first hint that you could have coeliac disease, but there are many lesser-known symptoms that can fly under the radar.

“Many people across Ireland live with symptoms they may not realise could be linked to coeliac disease. Because it can present in different ways, from fatigue and low nutrient levels to digestive issues, coeliac disease is often overlooked or mistaken for other conditions,” says Keogh.

Here, she describes six often overlooked symptoms we should not ignore:

Mouth ulcers

“Your mouth is part of your digestive system, so you can get a lot of mouth ulcers because of that autoimmune trigger. It can also be related to the fact that you’re not absorbing nutrients, and your immune system can be compromised. On top of that, in about 25% of people with coeliac disease, their spleen isn’t functioning properly, and your spleen is all about your immune system, hence the increase in mouth ulcers.”

Chronic fatigue

“With coeliac disease, you’re not absorbing nutrients properly, and nutrients like iron will be chronically low, leading to fatigue.”

Nutrient deficiencies

Because of the damage to the intestinal lining, a person with coeliac disease can’t absorb nutrients and minerals properly. “This can lead to deficiencies in vitamins like B12, and nutrients like iron, which can lead to anaemia.”

Brain fog and migraines

Keogh explains that symptoms like brain fog and persistent migraines can present in people with coeliac disease. “The gluten can cause nerve problems due to nutrient malabsorption, especially vitamin B12, but also due to a direct effect of gluten on the white matter of the brain. This can cause migraines.”

Issues with balance and coordination

“There is this condition called ataxia, which is where the coordination of the muscles is affected because of the nerve damage created by coeliac disease. In some people, this can look like a sudden lack of balance or inability to walk properly.”

Recurring pins and needles

“Again, because of the nerve damage, coeliacs can develop persistent pins and needles or a numbness in their hands and feet.”

Simple blood test

If you experience these symptoms regularly and persistently, Keogh says people should visit their GP.

The first step to determine coeliac disease, or rule it out, is a blood test. “That simple test could provide clarity and, for many, the answer.”

After a positive blood test, your GP will likely refer you to a gastroenterologist for a biopsy.

Keogh warns, though, that up to 10% of coeliacs will have a negative result for coeliac disease on the blood test, so for a definitive diagnosis, a person will need to have a biopsy to test for coeliac disease.

“That’s an endoscopy (a procedure using a thin, flexible tube with a light and camera at one end), and a biopsy of the small intestine.”

It’s important not to cut down or stop eating gluten during this diagnostic stage, says Keogh, because “the tests rely on your body actively reacting to gluten. If you reduce or stop eating gluten, it can distort the results and make diagnosis more difficult.”

While there is no cure for coeliac disease, once it’s identified, it can be effectively managed through a strict gluten-free diet.

“And it needs to be strict. It can’t be ‘I’ll take Sundays off’ or ‘I mostly avoid gluten’. Even a tiny amount of gluten can trigger the autoimmune reaction and restart intestinal damage,” says Keogh.

Most people who get diagnosed with coeliac disease are relieved, says Keogh, particularly if they have been feeling unwell for a long time.

“Some patients have been very sick and didn’t even know they could feel better until they removed gluten and allowed their gut to heal.”

As well as feeling healthier and more energised, those who are diagnosed with coeliac disease and eliminate gluten from their diet can also reduce their long-term health risks, including osteoporosis, infertility, and an increased risk of certain cancers, explains Keogh.

“Osteoporosis is a major long-term complication of undiagnosed coeliac disease,” says Keogh. “People with undiagnosed coeliac disease are more likely to get osteoporosis at a younger age and get it more severely.”

Many people may not know that undiagnosed coeliac disease can impact fertility. “ Coeliac disease impacts fertility and pregnancy outcomes due to malabsorption of nutrients, including folate and protein, as well as an auto-immune effect on developing embryos,” says Keogh.

“Women with undiagnosed and untreated coeliac disease have an increased risk of recurrent miscarriage, stillbirth, infertility, and intrauterine growth restriction.”

Keogh’s central advice is not to dismiss persistent symptoms — mouth ulcers, fatigue, growth problems in children, fertility problems, migraines, and brain fog.

Let’s just rule it out. Get the simple blood test, and either rule it out, or prevent 10-20 years of needless suffering.

The Coeliac Society of Ireland is urging people across the country not to ignore persistent, unexplained symptoms. It is encouraging greater awareness of coeliac disease and prompting those who may be affected to consider testing for a condition that often goes undiagnosed