Patients admitted to hospital with coeliac disease are not being catered for according to Australian practising nurse and coeliac sufferer Cheree,* who said hospitals need to take action to provide a 100 per cent gluten-free menu.

“I have found hospital stays difficult as some medical professionals don’t understand the seriousness of it,” said Cheree.

Coeliac Australia Dietitian Penny Dellsperger said her organisation commonly receives reports of inadequate attention to the requirements of patients with coeliac disease in the hospital and aged care setting.

“This can be frustrating for patients with coeliac disease, who rely heavily on the hospital food service to provide them with suitable food multiple times each day,” said Ms Dellsperger.

What is coeliac disease?

Coeliac disease is an autoimmune condition that causes the immune system to react abnormally to gluten, a protein found in wheat, rye, barley and oats, which results in small bowel damage and chronic inflammation in other parts of the body.

When coeliac suffers consume gluten villous atrophy occurs, reducing the surface area of the bowel available for nutrient absorption, which can lead to various gastrointestinal and malabsorptive symptoms.

If the disease is not diagnosed or adequately managed severe health conditions can result, including osteoporosis, type 1 diabetes, thyroid disease, gastrointestinal cancers and infertility.

How common is coeliac disease?

Coeliac disease affects 1 in 70 Australians, but 80 per cent of this group are undiagnosed. As a result, the majority of sufferers don’t yet know they have the disease.

The disease affects males and females of all ages, but a genetic predisposition is a factor in the majority of suffers. The most important genes associated with susceptibility to the disease are HLA DQ2 and HLA DQ8.

It is estimated that 30 per cent of the population carries one or both these genes, but only 1 in 30 of these people will get the disease.

Environmental factors also play a part in triggering the disease in infancy, childhood and later in life.

Hospitalisation & coeliac disease: a patient’s perspective

Cheree says eating out is frustrating, but in a hospital environment the expectation is that patients are 100 per cent safe, and this isn’t the case.

“At my last endoscopy and colonoscopy, in the day procedure unit, they didn’t have any gluten-free options, other than a biscuit, while the rest of the recovery room were eating sandwiches. This is after fasting for quite some time and having to go through a colonoscopy preparation.

“I didn’t mind that much, but I know there would be people who would expect to have been provided for.  In the past, I have taken snacks to be on the safe side,” said Cheree.

As a nurse caring for coeliac patients it’s disheartening when hospitals use the ‘low-gluten’ option on their menus, said Cheree.

“As a coeliac, you cannot have any gluten in your diet as it can cause damage to the small intestine and make you sick.

“In a hospital situation, where your only option is to eat the food provided, there need to be stricter regulations to keep coeliac patients safe and healthy.”

Hospitals do provide gluten-free options, and patients can bring in their food, said Cheree, but it’s difficult for patients with limited support outside of the hospital.

“I would only feel 100 per cent safe eating the packet variety gluten-free biscuits, cereals and those labelled ‘gluten-free’ as you never know if the kitchen is using safe, non-cross-contamination procedures with prepared meals.

“I also think nurses need to be aware of hidden gluten in certain medications,  as some generic medication may contain gluten, whereas the brand name ones don’t or vice versa.

“Nurses need to be educated that when a coeliac patient is admitted, and the doctor has ordered oral medication for that patient, they need to be extra careful. They need to be looking up ingredients to make sure no gluten is present before administering to patients,” said Cheree.

Since her diagnosis several years ago, Cheree said options for eating gluten-free have improved considerably, but there is still a lack of awareness in the community about the severity of the disease.

“There is still a way to go in educating people. This is a disease, not just someone following a ‘fad’ diet and trying to be difficult.

“I frequent restaurants that I know are well educated in not just saying they have gluten-free options, but understand they cannot cross-contaminate gluten food while preparing food for a coeliac.

“Coeliac Australia has launched a ‘gluten-free standard for food service,’ program to get restaurants accredited, so you know those particular restaurants have a good understanding of safely preparing meals. Maybe hospitals should follow suit!

“Generally speaking, most people in the community are supportive and understanding when I explain what it’s like to be coeliac, but like any disease, until you or someone close to you is personally affected, it is not 100 per cent understood.

“Organisations like Coeliac Australia are educating the community which hopefully can help the health profession to have a greater understanding as well,” said Cheree.

Being coeliac has its difficulties, but it’s a condition Cheree has adapted to and only becomes an issue when eating out.

“If you follow a strict gluten-free diet and stay healthy, you become so used to it, and it just becomes a part of your everyday life. I would rather eat gluten-free than feel sick!”

Dietitian warns strict gluten-free menu is crucial

Coeliac Australia receives reports of inadequate provision of non-gluten free foods or limited gluten-free options in hospitals which is usually due to a poor understanding of the gluten-free diet, said Ms Dellsperger.

Coeliacs have no choice but to avoid even the tiniest amounts of gluten in their diet due to an immune system response, said Ms Dellsperger.

“In those with coeliac disease, the immune system reacts abnormally to ingested gluten, causing damage to the small intestinal villi and systemic inflammation.

“This can result in short-term gastrointestinal symptoms, such as diarrhoea, vomiting, constipation, abdominal pain, and also increase the risk of long-term complications like malabsorption, osteoporosis, some types of cancer, fertility issues and liver disease.

“The only current treatment for coeliac disease is a strict gluten-free diet. This is especially important for vulnerable groups, like those in the hospital or elderly populations,” said Ms Dellsperger.

Coeliac Australia has developed an online training program, based on their ‘gluten-free standard for food service,’ to provide a guide to best practice for food service which is available via their website.

“We are in the process of developing a resource specifically for the hospital and aged care settings,” said Ms Dellsperger.