My son was hospitalised after not eating – it took 7 days to find out why

We’d been to the doctors previously to discuss Arthur’s symptoms. They put his illness down to being exposed to a variety of bugs during his first months at nursery.   

We tried to keep a food diary to see common themes, but it felt too constant to be linked to any particular allergy. We tried everything to get him to eat. In desperation, we stopped limiting sugar and even tried to tempt him with chocolate buttons. We spent all our time offering him a variety of food.

Nothing seemed to work.  

That winter, Arthur only managed one or two days a month in nursery. My partner and I both run our own businesses, so we were working evenings and weekends, while still paying full nursery fees – despite our son not attending.  

Then, everything got worse. Our son had been refusing food for days, and if he did manage to eat it came straight back up again. He was getting weaker.  

I took Arthur back to the doctors to try to get some answers. This time, they saw how much weight he’d lost – his ribs were showing and his skin was loose around his thighs and armpits – and they sent us straight to hospital.

Time passed in an unknown schedule of regular nurse and consultant visits, both day and night. Trays of food were delivered to try and tempt him to eat. Each time it failed, he was fed through the tube.   

At this stage we had no answers for why he was so ill. We were waiting for the blood test results, but we knew if these weren’t conclusive then an MRI scan was next. 

I later found out that the GP had suspected a brain tumour.   

The sixth night in hospital was our worst. After hearing quiet gurgling, I realised that Arthur was vomiting up his tube feed. As I turned him on his side and pressed the assistance button, he pulled the tube out of his nose so it dangled in a large loop in front of his face.   

I picked him up and held him tightly to my chest. At midnight the nurses eventually made the decision to remove the rest of the tube and Arthur slept, exhausted, in my arms.  

I felt utterly desperate and scared. Even after so long in hospital we hadn’t managed to get him to gain weight and at times it felt like we were no nearer to discovering the cause of his condition.   

The next day, waking early, Arthur and I went to the hospital canteen. We shared a cooked breakfast, and for the first time in days he ate eagerly, tearing at a buttered crumpet. It felt like a little glimmer of our old life, back to when he’d been well and there was less to worry about.   

Later that morning we got the results: coeliac disease. I’d heard the name before, but had no real understanding of what it was. 

I soon learned there is no cure for the condition. The only treatment is a strict gluten-free diet. I felt a sense of mourning that this would be life-long, but also relief that we finally had answers.  

After a visit to the dietician, Arthur was released from hospital. 

It was the best present knowing we’d be home in time for Christmas. 

In the UK, it’s estimated that nearly half a million people currently live with undiagnosed coeliac disease. It creates a range of symptoms that can be confused with other things, particularly in small children who can’t explain how they are feeling. 

Arthur’s symptoms included vomiting, weight loss, weakness, pale skin, lack of growth, and an enlarged belly.   

Despite popular belief, it’s not an allergy or an intolerance. It’s an autoimmune disease. The body basically attacks itself in response to gluten, which is the protein found in wheat, rye and barley. Some people also react to oats.  

As well as the obvious sources, such as bread, pasta and cakes, gluten is also found in everything from sausages to sauces.   

Contamination can be a real issue. Even a few crumbs can make Arthur sick – this could come from shared toasters or butter knives. At home, we prepare Arthur’s food separately using his own equipment. Finding restaurants that do the utmost to limit contamination can be really hard. 

Arthur’s older brother Jack has become his biggest advocate, helping to prevent people from just passing Arthur food. 

If your young child has recently been diagnosed with coeliac disease then my advice would be to look for community support online. There’s a wealth of advice and recipes to make life feel more normal again.  

The amount of time the gut takes to heal after diagnosis varies – sometimes up to five years.   

Happily, since his diagnosis, Arthur is thriving. He’s growing, gaining weight, and back to causing mischief! 

As his parent, it’s hard having to question every element of food preparation or asking to see ingredients. But it’s infinitely better than seeing him in pain again.