As Coeliac Awareness Week approaches, Alex Galbinski finds out more about a disorder affecting one in 100 people.

Elana Wall did not have any of the symptoms most commonly associated with coeliac disease – diarrhoea, bloating or stomach aches. But as a teenager she was much shorter than her peers and her father suffered with the condition, which set off alarm bells for her mother, who arranged for Elana to be tested.

Elana Wall

Elana Wall only realised she had coeliac disease when she got tested

“Both my parents are really tall – my dad is 6ft 2ins – and at the age of 14, I should have been getting taller. I was always really small for my age and I didn’t start growing until I was about 15 or 16.”

A simple blood test followed by an endoscopy confirmed the now 26-year-old marketing executive had the condition.

According to Coeliac UK, the UK’s leading charity for people affected by coeliac disease, the condition affects one in 100 people (increasing to one in 10 if a parent or sibling has it). However, it is estimated that there are around half a million people in the UK who are unaware they have it.

So what is this common condition? Abi Faiman, a registered paediatric dietitian at the Centre for Paediatric Gastroenterology at the Royal Free Hospital, explains: “Coeliac disease is an autoimmune disorder, a condition where the body reacts against any gluten, the protein component of wheat (including spelt), barley and rye.” Some people also react after eating oats.

When a person with the disorder eats gluten, the body’s immune system attacks its own tissues, damaging the lining of the gut. This in turn means the body cannot properly absorb nutrients from food.

Coeliac disease is not a food allergy – although both cause different kinds of immune reactions. Food allergies may resolve over time, but coeliac disease is lifelong.  Some other types of food reactions that don’t involve the immune system also occur, such as lactose intolerance.

Symptoms include constipation, anaemia, feeling tired all the time, weight loss, bloating, wind, abdominal pain and diarrhoea. There are also “silent coeliacs”, who have no symptoms but are shown to have inflammation via an endoscopy and positive blood tests.

Paediatric dietician Abi Faiman

Paediatric dietician Abi Faiman

In some cases, because of non-specific or an absence of symptoms, coeliac disease is only discovered when people are tested for something else, for example diabetes or thyroid conditions, which are other autoimmune conditions associated with coeliac disease.

Treatment for coeliac disease is the complete removal of gluten from a patient’s diet. Faiman says: “It can take up to six months, but you can see benefits much sooner. We have seen great success stories where children have been diagnosed and the catch-up is really speedy and there’s a complete symptom resolution.”

In Elana’s case, she was lucky to be diagnosed fairly early on and she is now of average height. “I’m 5ft 6ins and a healthy weight,” she says. “I’m checked every four years and have a check for bone density and gluten in my system.”

Since diagnosis, she has been on a strict gluten-free diet. “Food has come on in leaps and bounds,” she acknowledges. “It’s pretty easy to get gluten-free foods wherever you go now.”

There are, however, challenges. “It can be a bit socially uncomfortable,” she admits. “I’ve been for Friday night meals at people’s houses and I have to be that guest who questions what’s in the food. “One hostess told me she’d made a roast chicken I could eat. When I asked what was in it, she told me it had a certain brand of mustard ­– which has wheat flour in it – so I couldn’t have it.”

But she adds: “You don’t want to damage your body, so I am vigilant to the point of obsessive. Even though I don’t feel the effects there and then, I might feel them further down the line.”

Elana once mistakenly ate a whole-wheat wrap instead of a gluten-free one. “I had two days of feeling really foggy and not hungry,” she says. “I never knowingly or willingly eat anything I shouldn’t.”

Even eating small amounts of gluten can cause harm to people with the condition. Mark Furman, the Royal Free’s consultant paediatric gastroenterologist, explains: “With coeliac disease, the diet is totally gluten free. You can’t say: ‘I feel ok, so I’ll have a bit of gluten’. Poor adherence to the gluten-free diet will cause inflammation.”

However, until a positive diagnosis has been made, Furman adds that it is vital to continue a normal diet to achieve accurate results.

Sufferers have to cut out all forms of gluten

Sufferers have to cut out all forms of gluten

“People are sometimes advised to take out wheat or gluten from their diet, but this can make it difficult for the doctor and the patient, as you then have to go through the difficult discussions about reintroducing gluten for accurate testing when the person might be feeling better without it,” Furman explains. “It’s a lifelong condition, so it’s important to get that diagnosis right.

“Following new paediatric guidance published in 2012, in some cases, if certain very strict criteria are met, an endoscopy may be avoided, although many children and all adults require an endoscopy and biopsy to make the diagnosis. All these tests will need to be done on a normal diet.”

“Cutting out gluten doesn’t help with weight loss,” warns Faiman. “It’s more to do with the spreads on the bread, not the bread itself. It’s not dangerous to cut out gluten, when there are other forms of carbohydrates – potatoes, rice or other grains – in their diet, but there are no health benefits to cutting it out if you don’t have coeliac disease.”An increasing number of dieters have also looked to reduce gluten, without seeking medical advice, in an effort to lose weight and become “healthier” – but is there any actual advantage to this?

For those with the condition, however, the supermarket shelves are full of food containing “hidden” gluten, such as oven chips coated in flour, sausages and burgers (wheat is often added as a filler), grated cheese, stock, gravy granules, yoghurts, milkshakes, crisps and soy sauce, to name just a few.

People cooking for coeliacs must also remove the risk of cross-contamination, such as by using different toasters – everything needs to be kept separate.

On the plus side, many more companies, kosher and otherwise, are beginning to make gluten-free food and products, with both matzah and challah now available, making life easier for those who have been diagnosed.

As Furman adds: “Coeliac disease is a condition that doesn’t require medication and you can get full healing on a gluten-free diet. You can lead a normal, active, healthy life.”

• Coeliac Awareness Week runs from 12 to 18 May. For more information, see www.coeliac.org.uk and www.patient.co.uk/health/coeliac-disease-leaflet