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Hospital bound – what you must do if you have coeliac disease

Updated: Jan 23





In June, an 80-year-old woman with coeliac disease died within days of being fed Weetabix in hospital. At the time, BBC News reported that her condition was recorded on her admission documents, but there was no sign beside her bed to alert healthcare assistants to her dietary requirements.


Admitted for water on the lungs, Hazel Pearson was taken ill just hours after eating her breakfast, causing her to vomit. This led to an infection after material from her stomach had been inhaled into her lungs.


The story is tragic, but what pushed me over the edge was what happened next. Joel Abbott, a consultant geriatrician, told the assistant coroner, Kate Sutherland, that coeliac disease does not usually cause vomiting. This, of course, is inaccurate. My five-year-old daughter has coeliac disease, and if she eats gluten, she will vomit an hour later. She’s not alone.


Reaction to eating gluten varies from person to person. Some people will suffer for several days, while others might not experience any symptoms. The amount of gluten someone eats affects the degree of gut damage, so individual sensitivity to gluten affects the symptoms they experience. Mr. Abbott should know this.


The Guardian reported that Hazel Pearson had also become ill two weeks earlier when she was given a gluten meal after being admitted to the Deeside community hospital in Flintshire. This troubled me. My daughter would be a very lucky girl to avoid a hospital stay during her lifetime. How often does this happen? What if I wasn't there when she was admitted? I decided to investigate. In true journo-style, I jumped onto social media.


The diagnosis for hungry coeliac patients is grim


All I did was ask a simple question on Facebook: has anyone encountered any problems with gluten-free food when staying in hospital? The replies were not what I was hoping for.

  • “I lived on plain jacket potatoes and black coffee. I was hungry all the time.”

  • “I had a banana. One of the nurses found me a bag of crisps and a gluten-free bar from her packed lunch the following day. That night, I had a jacket potato, but I was so hungry by then.”

  • “Very little was available when I had my son. A plain jacket potato, side salad, and ice cream.”

  • “They were awful and frequently tried to give me stuff that wasn’t gluten-free. I ended up having to take all my own things with me.”

  • “Breakfast choices will be minimal, and snack alternatives – Mrs. Crimbles macaroons instead of biscuits – might be available if you are fortunate, but don’t expect the staff that serves the food to understand the term ‘gluten-free.’”

  • “Bring your own or live off potatoes! And never believe them when they say gluten-free!”

  • “My daughter was in with Covid-19 complications, so we were isolated in a room, and all they could give her for the four days was bags of Pom-Bear.”

  • “It was terrible. Not because there wasn't the food available but because the staff taking the food orders didn't have a clue!”

  • “I was diagnosed [with coeliac disease] in 2005. In 2011, I was admitted to the hospital that diagnosed me. My evening meal was a slice of ham. In 2019, I broke my ankle. I needed an operation to fit the metal plate. For three days, the operation was cancelled at 5 pm. I couldn’t choose a meal from the menu because I had been nil by mouth all day. At 5 pm, it was too late to arrange a gluten-free meal. I would’ve starved if my family hadn’t brought me snacks. However, living on crisps, chocolate, and fruit is hardly healthy.”


There were, however, some positive comments too:

  • “I was fine. I spent a week in the hospital and was given Schar cornflakes for breakfast, with plenty of choices for lunch and dinner – such as curry, jacket potato, vegan shepherd’s pie, etc., and even jelly for dessert.”

  • “It all depends on the hospital. When my aunt was in, I sorted the menu for her. There was at least one gluten-free option for every meal.”

  • “There's usually a curry, omelette, or jacket potato. My son was admitted to Leeds General Infirmary, and I can’t fault them. They assigned a healthcare assistant to him. She had toaster bags that she looked after and brought him the gluten-free menu, which had eight meals, three sandwiches, and three dessert options for him to choose from.”

  • “When my sister was in, I emailed the Ward Manager, who soon sorted it out.”


What’s being done, and what can you do?


Following Hazel Pearson’s death, Coeliac UK is asking for improvements to hospital food guidelines so patients with coeliac disease can feel safe and reassured when in hospital. As has become increasingly clear, many healthcare professionals still need to be educated about coeliac disease. The funding will need to be in place to do this. Other steps include:

  • educational materials on providing a gluten-free diet for people with coeliac disease

  • support for patients with coeliac disease attending hospital

  • requesting that the NHS review their information, which currently does not identify vomiting as a symptom of coeliac disease.

If you have a hospital stay looming, Coeliac UK also provides tools and information for people going into hospitals for treatment. It’s a must-read, covering planned and unplanned stays, things to pack in your hospital bag, what care to expect and what you can do if something goes wrong.


Above all, the key takeaway is to speak up for yourself, your child, or whoever requires support, and always check with staff or have a family member, friend, or caregiver check for you. I can’t stress enough - you must tell the hospital staff that you need a gluten-free diet. Hopefully, if we all do the above, we’ll no longer read heart-wrenching stories like Hazel Pearson’s, and hospital visits will no longer fill us with dread.

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