My son was hospitalized after not eating

She looks very frail and thin, with a swollen belly (Photo: Laura Fanthorpe)

I lay on the covers, still in the same clothes I was wearing when we arrived at the hospital a few days before.

All night I watched my 20-month-old son, Arthur, as he slept peacefully behind the bars of the cot.

The tube that carries food to its stomach is taped to its cheek with teddy bear tape. She looked very frail and thin, with a pot belly. I feel so helpless.

It was December 2022, and my son and I spent a week on the ward together while we waited desperately for a diagnosis.

Arthur wasn’t always that bad: he met every developmental milestone early. But this all changed around 18 months old, when I started to feel like she wasn’t growing any more.

He began having regular episodes of vomiting and food aversions, in addition to becoming increasingly clingy and withdrawn. While other toddlers were acquiring new skills and running around, mine stopped walking.

We tried everything to get him to eat (Image: Laura Fanthorpe)

The whole day could be spent with him clinging to me and showing little interest in toys.

We’ve been to the doctor before to discuss Arthur’s symptoms. They pass on their disease due to exposure to various insects during their first months in the nursery.

We tried keeping a food diary to see common themes, but it seemed too constant to pin down to any particular allergy. We tried everything to get him to eat. In desperation, we stopped limiting sugar and even tried to tease him with chocolate buttons. We spent all of our time offering him various foods.

Nothing seems to work.

We were both exhausted (Image: Laura Fanthorpe)

That winter, Arthur only managed a day or two a month at the nursery. My partner and I both run our own businesses, so we work evenings and weekends, while still paying full childcare – even if our son is not there.

We’re both exhausted. We can’t remember the last time we did something for ourselves. Instead, we just worked shifts whenever we got a chance to babysit.

Then, things got worse. Our son has been refusing food for days, and if he manages to eat it, it comes right back at him. He’s getting weaker.

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

Trays of food were sent in to try and tempt him to eat (Image: Laura Fanthorpe)

Once we were there it took three separate attempts over two days to get his blood drawn, as he was very dehydrated.

Time flies in the unknown routine visits of nurses and consultants, both day and night. Trays of food were sent in to try and tempt him to eat. Whenever that failed, he was fed through a tube.

At this stage we have no answers as to why he is so sick. We are waiting for blood test results, but we know if these are not conclusive then another MRI scan.

I later learned that the general practitioner suspected a brain tumor.

I feel so desperate and scared (Image: Laura Fanthorpe)

The sixth night in the hospital was the worst for us. After hearing a soft gurgling, I realized that Arthur was regurgitating his tube food. When I turned him over and pressed the help button, he pulled the tube out of his nose so it hung in a large circle in front of his face.

I picked him up and held him tightly to my chest. At midnight, the nurses finally made up their minds to remove the remaining tube and Arthur slept, exhausted, in my arms.

I felt so hopeless and scared. Even after a long time in the hospital, we couldn’t make him gain weight and sometimes it felt like we couldn’t find a cause for his condition.

The next day, waking up early, Arthur and I went to the hospital canteen. We share a cooked breakfast, and for the first time in days she’s gorging herself, shredding buttered toast. It felt like a small glimmer of our old life, a return to when he was healthy and there was nothing to worry about.

I quickly learned that there is no cure for celiac disease (Image: Laura Fanthorpe)

Little did I know this would be his last ‘normal’ meal.

That morning we got the result: celiac disease. I’d heard the name before, but didn’t really understand what it was.

I soon learned that there was no cure for the condition. The only treatment is a strict gluten-free diet. I feel sad that this will last a lifetime, but also relieved that we finally have answers.

After a visit to a nutritionist, Arthur is released from the hospital.

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

Arthur’s symptoms include vomiting, weight loss, weakness, pale skin, undergrowth, and an enlarged abdomen (Image: Laura Fanthorpe)

In the UK, it is estimated that almost half a million people are currently living with undiagnosed celiac disease. This creates a series of symptoms that can be confused with anything else, especially in young children who are unable to explain how they are feeling.

Arthur’s symptoms include 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 a protein found in wheat, rye, and barley. Some people also react to oats.

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

Arthur’s older brother Jack has become his biggest advocate (Image: Laura Fanthorpe)

As a disease, it often feels very underestimated. When I went shopping once, I had a chat with a woman about my son’s condition and she said: ‘This looks like it’s going to be the latest fad, doesn’t it?’

This disease is often misunderstood. I feel very protective of Arthur and want to make sure people learn more about what the effects will be if he accidentally eats gluten.

If celiac disease is left undiagnosed long term, it can lead to serious health complications such as osteoporosis, fertility problems and, in rare cases, a type of small bowel cancer.

Contamination can be a real problem. Even a few crumbs can make Arthur sick – this could come from a shared toaster or butter knife. At home, we prepare Arthur’s food separately using his own equipment. Finding restaurants that are doing their best to limit contamination can be very difficult.

Arthur grew, gained weight, and returned to causing havoc! (Image: Laura Fanthorpe)

Arthur’s older brother Jack has been his biggest supporter, helping prevent people from only giving Arthur food.

I hope to spread awareness of celiac disease so more people can be diagnosed and start to regain their health. It’s important for people to know how varied the symptoms are, too.

If your child has recently been diagnosed with celiac disease, then my advice is to seek community support online. There is lots of advice and recipes to make life feel more normal again.

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

Thankfully, since his diagnosis, Arthur has thrived. He’s grown, put on weight, and is back to causing havoc!

As a parent, it’s hard to question every element of food preparation or ask to see the ingredients. But it was so much better than seeing her in pain again.

Find out more about celiac disease at British celiacs. As a first step, you can do a self-assessment at www.isitcoeliacdisease.org.uk.

Do you have a story you’d like to share? Get in touch by sending an email to jess.austin@metro.co.uk.

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