What happens if someone with coeliac disease eats gluten?

Symptoms and their severity vary wildly between people. While coeliac disease is generally associated with issues like bloating and stomach pains, non-gastrointestinal symptoms like excessive tiredness, nerve damage, and balance and co-ordination problems (ataxia) are also common.

These reactions happen because when a person with coeliac eats gluten, their body attacks its own cells. This causes damage to the small intestine, which affects the body's ability to absorb nutrients properly, and over time can lead to serious health complications.

Short-term symptoms tend to subside as a person with the disease starts eating a gluten-free diet. But with the average diagnosis time in the UK being a staggering 13 years, many coeliacs are at risk of developing long-term complications as a result of years of damage to their body.

Symptoms include:
Malabsorption: trouble absorbing nutrients
Osteoporosis: weak and brittle bones
Anemia: low iron
Hypertransaminasemia: high levels of transaminases in the blood (enzymes that help the liver remove toxins)
Dermatitis herpetiformis: blistering rash caused by coeliac disease
Neurologic disorders: such as ataxia and neuropathy (nerve damage)

At 18, Sonny Wells was constantly feeling tired, bloated, and struggled to concentrate. After six months of putting of going to the doctor, Sonny was diagnosed with Irritable Bowel Syndrome (IBS), and started taking 10 tablets a day to help with his symptoms.

But Sonny’s symptoms kept getting worse. “It got to the point where I was having stabbing pains,” he said. “After one meal with a mate I could barely stand up. I was literally in agony, and it went on for days.”

It took four years for doctors to suggest gluten could be the problem, and at 22, Sonny was finally diagnosed with coeliac disease.

Like Sonny, 1 in 4 people with coeliac disease are misdiagnosed with IBS (NICE), as the conditions have some overlapping symptoms.

“Your early twenties is such a social time, and dealing with the diagnosis was really hard because I was almost like the odd one out,” Sonny, now 32, recalled.

“If you’re out for coffee or food and meeting people for the first time, you’re automatically that gluten-free person. You can't get away from it, and it’s exhausting.”

To tackle the problem of coeliacs feeling "singled out", Sonny founded Sonny's, a gluten-free fast-food chain which he hopes will help coeliacs avoid the "nightmare process" of trying to find and eat at restaurants safely with family and friends.

After a coeliac diagnosis in the UK, patients are booked in for an appointment with an NHS dietitian to learn about the gluten-free diet. But numerous people have claimed their dietitians were under-educated, giving them incorrect or incomplete advice.

NHS were contacted for right of reply.

“My dietitian didn’t mention cross-contamination or 'may contains' at all,” Sonny said. “I had to learn about it the hard way by getting ill each time, and damaging my body, which led to other problems.”

Seven years later, Sonny found out he has fertility issues, most likely as a consequence of his coeliac disease.

“It’s going to be a huge struggle for me to have kids in the future,” he explained. “It’s going to be very expensive, I’m going to have to go through IVF.

“I felt lost when I was diagnosed with coeliac anyway, but then to find out that the coeliac had affected me in such a huge way seven years later… it was horrible. I was devastated.

“If I hadn’t put off going to the doctor, or if my diagnosis hadn’t taken so long, things could potentially have been different. It’s a massive ‘what if?’”

Sociology student Aislinn Melville, 21, was diagnosed with coeliac disease at 15.

"When I was first diagnosed, it was difficult being different to other people at school," Aislinn said.

"I was embarrassed taking in food that looked different to other people's, and when I had school dinners, I stood out when I went up separately to get my food."

As a shy person, Aislinn still finds the unwanted attention from coeliac difficult.

“I’m not really ashamed of being gluten-free anymore, but when people point it out, it just brings me down,” Aislinn admitted.

“I don’t really know how to handle the attention when I’m having a meal with other people and they go, ‘oh, can you eat that?’, or they start asking me about my symptoms in front of everyone.

When Aislinn was diagnosed, her dietitian told her she could eat foods that were labelled as 'may contain gluten'.

But the interviews Aislinn carried out for her undergraduate dissertation, which explored the impact of coeliac disease on university students, opened her eyes to why so many people with the disease avoid 'may contains'.

Now, after recently being in a lot of pain after eating products with 'may contain' warnings, Aislinn is considering giving them up.

“I want to try it for my health, but it’s just another thing that I’ll have to explain to people,” she said.

“I feel like it’s just going to confuse them even more, and it’s another thing I’m going to feel really bad about.

“But I do feel like it’s a moment where I need to try and put myself first."