Those affected by coeliac disease are all too aware of the realities of coping with a gluten-free diet on a daily basis. International Innovation’s Stephanie Spurr examines how fad food trends are generating mixed messages and potentially lessening societal awareness of this autoimmune condition.
On 7 September, Coeliac UK’s first ever advert aired across the nation’s televisions. Its goal? To find half a million people living with undiagnosed coeliac disease – an estimated 24 per cent of coeliacs worldwide. A decade ago, the condition lurked in the shadows, studied by researchers but largely unknown amid the general population. While knowledge of coeliac disease has improved since then, further efforts to raise awareness and educate the public are needed.
WHAT IS COELIAC DISEASE?
Coeliac disease affects one in 100 people and is caused by a reaction of the immune system to gluten, a protein found in foods such as wheat, barley, rye and oats.
Gluten affects the finger-like projections called villi in the small bowel, which help break down and absorb the protein into the blood stream. In those with a genetic predisposition to coeliac disease, T cells view gluten as a threat to the body that needs to be attacked, rather than a nutrient. The chemicals released by the T cells harm the lining of the small intestines, reducing the body’s ability to absorb nutrients.
The symptoms range from mild – including bloating, diarrhoea, nausea, wind, constipation and tiredness – to more severe – such as hair loss, osteoporosis and anaemia. For children, there is also the possibility of slowed growth and development. The most serious complications of coeliac disease are lymphoma and small bowel cancer. However, after following a gluten-free diet for three to five years, the risk of developing these cancers is no greater for coeliacs than for society at large.
A GLUTEN-FREE DIET
The only existing treatment for coeliac disease is adopting a strict gluten-free diet. And therein lies the problem; with gluten-free diets becoming increasingly popular for those without an autoimmune disease, the requirements for coeliacs can appear less important. One of the most common misconceptions about gluten-free food is that it promotes weight loss – in fact, these alternatives are often high in calories, fat and carbohydrates.
What many people are not aware of is the extremely high sensitivity of coeliacs to gluten – it is not a case of picking croutons off the top of a salad. One minuscule crumb will cause contamination. This means coeliacs need things like separate toasters and spreads, and for each and every ingredient to be vetted carefully.
RESTAURANTS AND TRAVEL
My knowledge of this condition stems from more than just general interest – my mother is coeliac, so I have been by her side during the many times she has contended with blank expressions and exasperated sighs at the mention of the words ‘gluten free’.
Going to a restaurant for a meal can be a stressful time, especially when it becomes apparent that the waiter and/or chef is not aware of coeliac disease, or does not differentiate between coeliacs and those who have joined the gluten-free craze. Therefore, a common and unfortunate response is: ‘I don’t think it has gluten’, which is not only unhelpful but potentially harmful. On a positive note, many restaurants are now becoming gluten-free certified, which gives coeliacs an additional level of trust.
Travelling abroad can be challenging because of the language barrier, especially as the ‘contamination concept’ can be difficult to explain even to speakers of your native tongue. Communication is key, and there are cards available to coeliacs that explain their requirements in several languages, which is invaluable for international holidays.
A big change has also come from supermarkets, many of which now have shelves dedicated to gluten-free ranges, enabling coeliacs to eat previously ‘banned’ foods such as pizza and pasta.
FUTURE TREATMENT PROSPECTS
Although coeliacs must currently rely on a strict diet, there are an array of drugs in development for coeliac disease. A particularly promising prospect in clinical trials is Nexvax2® by ImmusanT, which targets the HLA DQ2 gene present in most coeliacs. Delivered as a therapeutic vaccine, Nexvax2® targets the gluten-specific T cells and re-programmes them so that they act as allies and stop responding defensively when gluten is present. As the T cells are not being activated by gluten, patients will be able to resume a normal diet without further injury to the small intestines. Over time, the lining of the small intestines will repair itself and remain healthy. Booster shots will offer periodic reinforcements of the treatment.
While science is on the case, education should not be limited to patients and their families. The wider public should also be made aware that, for many people, a gluten-free diet is imperative.
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