Why you should always trust your gut when it comes to coeliac disease

This autoimmune condition is much more than just an upset tummy, and its wide range of symptoms affects the lives of almost 2% of the Irish population

Donna Harold: "When I returned to the recovery room after the procedure, the surgeon told me that I was a coeliac [an autoimmune condition where the body’s immune system reacts to gluten] and I was to eat no bread." Picture: Alan Harold

As a child, Donna Harold had always been fit and healthy, but not long after she turned 20, she began to feel sick. Initially putting it down to a virus, she tried to ignore it, but the feelings persisted, so she went to see her GP. However, despite running tests, nothing indicated that anything was wrong. 

“I was always a healthy child, was into sports and was never sick, so my symptoms were totally out of the blue,” she says. 

A few months passed and she began to get other symptoms, "including urticaria (a skin rash with itchy bumps), bloating, fatigue, brain fog and weight gain". She recalls eating a pizza and falling into a deep sleep for hours. "After that, I knew that something wasn't right."

She returned to the GP, who suggested she undergo an endoscopy. "When I returned to the recovery room after the procedure, the surgeon told me that I was a coeliac [an autoimmune condition where the body’s immune system reacts to gluten] and I was to eat no bread. I was so shocked as I didn’t even know what he meant because coeliac disease wasn’t something I was familiar with."

Harold began researching what it meant. "It took several months to navigate the different foodstuffs to find out what was safe and what wasn’t. I discovered that I am allergic to wheat, oats, rye and barley, so you can just imagine how limited my choice was, particularly back then.” 

 The now 38-year-old, who lives in Mallow with her husband, Alan, and their two sons, says her experience and the lack of information from healthcare providers prompted her to set up a support group for others in a similar situation.

“I arranged to meet a dietitian for advice and meal plans, as the big thing for me was eating out,” she says. “I had always been quite social, and suddenly, I wasn’t able to eat out with my friends, so that was especially difficult for me. "

Donna Harold: "It took several months to navigate the different foodstuffs to find out what was safe and what wasn’t. I discovered that I am allergic to wheat, oats, rye and barley." Picture: Alan Harold

Most restaurants now offer gluten-free options, and supermarkets have improved, says Harold, adding that they are not as good as those in other countries. "It isn’t a choice or a fad diet we’re on — if we eat gluten, we get very sick.

 “I'm much more knowledgeable now, 17 years on, but I’m also still learning. I set up a Facebook page called Gluten Free Cork to help others navigate this new life. I have almost 4,000 followers. 

"It is great to be able to help other coeliacs — it’s a lovely group of people all on the same journey and we share recipes, places to eat and new products as well as having a bit of chit chat.” 

Harold, who works in a pharmacy, says that her overall health has greatly improved, and the weight she gained while waiting to be diagnosed has "fallen off."

 “My energy has also increased, and all of the other symptoms I had have disappeared since changing my diet,” she says. 

“I now get regular blood tests to keep a check on my coeliac levels, my iron, B12 and vitamin D as my absorption is very poor due to having the condition."

People tend to associate coeliac disease with an upset tummy, says Harold, but there are a "whole host"  of other symptoms from brain fog to fatigue, cramps, low mood and fertility issues. 

She advises people to "trust their gut" if they think something isn't right and see their GP.   

Undiagnosed coeliac disease

According to the Coeliac Society of Ireland, an estimated 78,000 adults and children in the country are living with undiagnosed coeliac disease. The autoimmune disease affects about 1.7% of the population. 

Dr Deirdre G O'Donovan, a consultant gastroenterologist at Blackrock Clinic, Dublin, says people should be aware of the signs of coeliac disease and seek advice as soon as possible if they have any concerns. 

 "Please don’t let May — coeliac awareness month — pass by without thinking about coeliac disease,” she says. “This common gluten allergy condition is often overlooked and not diagnosing it early can have significant impact on future health with an increased risk of osteoporosis and certain cancers. "

Coeliac disease often mimics other conditions such as irritable bowel syndrome, she says.  "Please ask your GP, ‘Could it be coeliac?’ if you are feeling tired or complaining of any gut-related symptoms."

Coeliac disease can develop at any stage in life, so you are never too young or too old to be diagnosed, says O'Donovan. "If you have a family member who has already been diagnosed with coeliac disease, your risk is increased significantly, so please discuss screening with your GP. A simple blood test is all that’s required — it could go a long way to protecting your future health."

• The Coeliac Society of Ireland is inviting people to learn more about the autoimmune disease through weekly events and webinars throughout the month. For more details, see coeliac.ie