Isla’s Run for Coeliac UK
7-year old Isla Kerr inspires coeliac disease awareness at the Edinburgh Marathon
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Hey Gluten Free Fam,
After finding out about Harley’s incredible climb for Coeliac UK, the British organisation has another young champion doing their part to raise awareness for the cause.
7-year old Isla Kerr made news in her hometown of Musselburgh, Scotland, taking part in the Edinburgh Marathon to highlight the need for more attention and action on coeliac disease.
Her mum Kirsty Kerr will give us the inside story into Isla’s battles and how her bravery and selflessness is leading to community change.
GUEST BLOG by Kirsty Kerr
Isla's story starts before she turned 1. She was the easiest child in the world, always a great sleeper during the evenings. Suddenly, when she was about 7 months old, that all changed. This was not in a developmental leap kind of way, but in a complete change of personality way. She went from being this smily happy wee thing to being grumpy and huffy. Sleep went out the window, and she was super difficult to wean - her only interest was milk!
We went on holiday just before her first birthday and took her out for a nice pizza on her birthday. I remember it clearly - we were so excited she was eating this pizza and we were all so happy. But that night, everything changed and she woke up at about 2am SCREAMING as if she was in severe pain. She was sick all over herself and us.
Nightmare Pains and Anguishing Coeliac Symptoms
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So it began. Every single day from then on, Isla would wake in the night - sometimes once, sometimes four times - every time the same. Screams of pain, violently sick, and then she would be able to get back to sleep. We tried everything. We cut bananas, strawberries and dairy as we thought there was a link. Nothing worked. We took her for cranial massages, which helped ease whatever pain she was in - but it didn't solve the problem.
She was in and out of the doctors. First they thought it was asthma, then they considered maybe it was a recurring virus. One health visitor (who I then refused to let in my house again) suggested she was doing it "for attention." I'm not sure how she thought my 19-month old was making herself sick every night for attention, so the less said about her the better!
This continued until she was 3. During this time, we also went through COVID lockdowns, so perhaps our symptoms weren't taken as seriously as if she was in nursery. Maybe people thought we were just paranoid parents? She was, however, always getting sick - if she went into nursery, she would be off the next day with some sort of illness. It was never a temperature though - always loose nappies, or a sore tummy or constipation.
Lack of Local Medical Understanding Creates Further Stress
We had one doctor who took us seriously, yet she attributed the symptoms to weak stomach muscles, so lying down at night made her sick. She was prescribed anti-sickness medication, but all that happened was she would wake up in the night screaming needing to be sick and then it would come out both ends. We had her at the doctors and hospital various times, but always got dismissed as if I was just being a paranoid mum, because during the day, she was totally fine!
“It sounds bad, but the main feeling we had after her diagnosis was relief. We knew what was making our baby unwell and what was going to help her feel better.”
Eventually, we got to the point with her nursery where she was so poorly that she was off more than she was in. I had a bit of a breakdown one day at pickup and said to her teachers I would take her back to the doctors again. One of them said, "Why don't you take a food diary in, just so they can rule out food related things, then you can get her tested for whatever it is?" We diligently kept a food diary for 10 days. At our appointment, we saw a doctor she had never seen before who looked at the diary, looked at Isla and said, "Let's do some bloods, just to rule out lots of things."
Well, that was traumatic. Our doctors only had adult-sized needles. She was 3 at the time. We managed to get the bloods done, and the doctor must have had some sort of feeling to get her tested for coeliac disease. Luckily for us, they found out what was making her sick, and she was diagnosed a week later. We had the blood tests 3 weeks after this to confirm the diagnosis (our doctor said her levels were off the chart high), and we have lived a gluten free life ever since!
Managing Life Post Coeliac Diagnosis
It sounds bad, but the main feeling we had after her diagnosis was relief. We knew what was making our baby unwell and what was going to help her feel better. We then had a total panic - unsure how we would handle this, or how we would keep her safe. This turned into concern, and that feeling has never left. I honestly feel like I am constantly on alert. For example, Isla had her first school residential this year and I spent the entire time worried, attached to my phone, sure I was going to get a call saying she had been glutened. (Update: we are going on holiday next week and I have a list of places which are coeliac safe).
I also feel sadness - Isla will have this her entire life. There will come a time for me and her dad that we can just eat anywhere when she moves out, but she is never going to have that luxury. We eat gluten free at home (unless having separate teas), but we also think it’s so important to let her learn sometimes that her food will be different (and sometimes her’s is better), and to learn to express that and feel it at home too. But equally, we try and eat the same for safety, allowing us to eat as a family!
Isla Runs the Edinburgh Marathon for Coeliac Awareness Cause
Isla’s Edinburgh Marathon effort showcases strength of coeliac community
We live near the finish line of the Edinburgh Marathon, and last year Isla and I went down to cheer people on. Isla said she wanted to run it, so we had a look and saw they do a kids 1.5km as part of the Edinburgh marathon festival. She wanted me to do one too, so I signed up for the half marathon and our fundraising began!
It's been great - we have had so much support from the local community. Whether it's from our local newspaper, or from her school, the experience has been great. I've also spoken with our local MP to talk about raising awareness of kids with coeliac disease.
With this being said, a lot more awareness is needed. When you're in the community and you see all the Instagram posts, you feel like it's everywhere. However, when you then speak to people elsewhere, many of them have never heard of coeliac disease. And restaurants are still pretty bad in some places with very little to no understanding of the difference between gluten free and coeliac.
Isla’s great aunty was diagnosed recently, and having someone in our family has helped raise everyone's understanding. But there's still a lot of misdiagnosis and they estimate 2/3 of the people with coeliac disease in the UK haven't been diagnosed!
Thank you for reading these stories at A Gluten Free Family.
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