Six-year-old Ellie Hynds will be walking the Tay Road Bridge with her granddad, Jim Milne, on Sunday to raise money for Coeliac UK.
Ellie was diagnosed with Coeliac disease the same day she started primary school, at just four-years-old.
Mum Suzy said that when she was three, Ellie would have episodes of severe stomach cramps, to the point where she was lying on the floor, screaming in agony.
Suzy, who had been diagnosed with Coelic just a few years before, pushed to get her daughter tested, but was told she was “too young”.
Coeliac disease affects at least one in every 100 people in the UK and in Europe; however, only 30% of people with the condition are currently clinically diagnosed.
The average length of time taken for someone to be diagnosed with the disease from the onset of symptoms is 13 years.
Diagnosis
Eventually, Suzy managed to switch specialists who tested Ellie for Coeliac.
“I got a phone call from the consultant when I was at work to tell me that was the diagnosis”, Suzy remembered.
“I was absolutely devastated for her. When I was diagnosed I was 30 – I’d had 30 years of eating normal, and going to kids parties and all that stuff.
“At that point she was only four, and I thought kids parties would be a nightmare, all these little things you don’t think of.
“I came home from work that night and sat her down and said the doctor said you’ve got the same special tummy as me.
“And she said okay I’ll just eat what you eat then, and walked off.
“I’d been worried all day about telling her and she was just like oh well. I think she obviously knows how ill she was. She knows that she was that ill and if she eats gluten, that’s how she’ll be.”
Suzy said when she was first diagnosed, she did not even know what Coeliac disease was.
“I was quite similar – I kept having stomach problems”, she said.
“It was when I was pregnant with Ellie’s little brother. They just kept saying you’re pregnant, these are just pregnancy things.
“After I had him and was still having issues, I was back and forward. They were like well we’ll try – it’s obviously diet related, so we’ll try dairy free, and they gave me four different steps to try.
“The last thing was going gluten free, but before they did that, they tested me for coeliac.
“The doctor outright said to me I don’t think it is that. I thought, well that’s good, because I have no idea what you’re talking about.
“They gave me that test before I took dairy out of my diet or anything, and it came back that I was coeliac.
“It’s been a very steep learning curve. When you know something is making you ill, you’ve got to make that decision to just get on with it and deal with it.”
Gluten Free
She said she notices it has been easier to eat gluten free in more recent years compared to when she was first diagnosed.
“There’s a lot of support out there now with Coeliac UK. I see a big difference in terms of when I was first diagnosed.
“I’ve spoken to people who have been gluten free for a long time and they said ten years ago, you didn’t get half the things you get now.
“I always come back with when I went gluten free four years ago, you didn’t get half the things you get now.
“There’s new things coming out all the time and we’ve kind of always said to Ellie, if there’s something that you want, that your friends are having, generally we can find something of a similar nature that’s gluten free.
“It just takes a bit more work. Sometimes it’s not quite as easy as just going to the shops. It’s a bit more research. I do think things are progressing and manufacturers are getting lot better at labelling things as gluten free, which makes trips to Asda a lot shorter.”
Fundraising
When it came to fundraising for Coeliac UK, Ellie knew she wanted to take part.
Ellie had originally planned to fundraise last year, but Covid-19 struck and plans were put on hold.
Suzy said: “We’d kind of spoken about it a few weeks ago and I asked her what did she want to do, it’s coming up again.
“She’d hummed and hawed about different things and then said I want to do something swimming. I said well that’s really good but we can’t get a swimming pool just now.
“We saw my mum and dad the day we were talking about it. Ellie and my dad, Jim, are really close. Ellie has really missed seeing my dad.
“He said to her how about we walk the Tay Road Bridge, and I’ll do it with you. So that was it, she wanted to do that and get a day with granddad into the bargain.”
Ellie said she is incredibly excited to take on the challenge, but said the bridge was “a bit longer than I thought”.
When her Mum told her she was sure she would manage, Ellie responded: “Oh I’ll manage, but it’s longer than I thought.”
You can support Ellie’s fundraising campaign here.