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Burnley mum praises hospital for changing daughter's life

grace dole and family on holiday since diagnosis

Published by Alice Sofield at 1:09pm 16th May 2018

[Pictured: Grace (2nd from left) with dad Steven, sister Zara and mum, Louise]

A Burnley mum who saw her daughter go from being a pale and listless child with no energy to a happy and healthy little girl full of life, is thanking hospital staff for diagnosing her with coeliac disease.

Louise Dole, who lives in Burnley, says they feel very lucky that daughter Grace, who will turn seven later this month, was diagnosed at such a young age as many sufferers wait years before it is eventually picked up.

This week is Coeliac Disease Awareness Week, (May 14th to May 20th), which aims to raise awareness about coeliac disease and how it affects sufferers.

 

 

Coeliac disease is a lifelong autoimmune disease caused by a reaction to gluten. This damages the lining of the small intestine.

“Grace lost the quality of her life for a couple of years."

Louise says the difference they have seen in Grace since she went on a gluten-free diet is amazing and she is like a completely different girl.

The family is incredibly grateful to the support and persistence of staff at East Lancashire Hospitals – particularly Grace’s consultant Dr Rosemary Belderbos who went over and beyond to make time for them and care for Grace.

Louise, who also has daughter Zara, three, explains:

“When Grace was just six months old, she had a really bad urine infection which went through to her kidney and she was treated at Royal Blackburn Teaching Hospital.

“They did lots of scans and tests and the hospital staff were really good with Grace.

“They discovered she had bladder reflux and because of that, her left kidney had become damaged.”

Grace was put under the care of a kidney specialist in Manchester and her parents were advised that any time she had stomach pains or was feeling unwell to get her seen to until it was ruled out it was not connected to her kidney or urine.

Grace began associating stomach pain with eating so it was putting her off food and she was losing weight.

Louise explains:

“Grace was really small for her age and had no energy and would come home from school and just go to sleep.

“Grace used to do gymnastics but we had to stop that because she just didn’t have the energy for it.”

When Grace was four, she became very unwell with stomach and back pains and a high temperature and her parents took her to the Urgent Care Centre at Burnley General Hospital, who sent her to the Royal Blackburn.

Doctors ruled out a urine infection but could feel blockages in Grace’s stomach and were not happy to discharge her until they had done more tests.

Louise says: 

“Just before they discharged her, they told us they had ruled out most things but just wanted to do a test for coeliac disease.”

A few days later, the family were contacted by Grace’s consultant who told them the antibodies were very high and it looked like it was coeliac disease.”

A biopsy was carried out in February 2016 and Grace was diagnosed with coeliac disease.

Grace has been on a gluten-free diet ever since and the change in her is remarkable.

Louise says:

“Grace looks like a completely different girl, she used to look pale and have bags under her eyes and a bloated stomach, but now she looks healthy and well and her size and weight is as it should be.

“Dr Belderbos, who has looked after Grace since she was a baby, has noticed a huge difference in her.

“Grace has lots more energy and does contemporary dancing now. She did her first competition in February and came second.

“Grace is really good about following her gluten-free diet. She goes to Read St John’s School and they have been amazing in their support.”

Grace is under the care of Dr Belderbos and her team and Louise says the consultant has been wonderful.

She says: “As Grace’s parents, we were worried and panicked about her when she was ill but Dr Belderbos was always calming and explained everything to us really well.

“She always made time for us and even phoned us during her personal time and has always been very supportive.

“We feel very lucky that Grace has been diagnosed at such a young age.

“I think some people are scared about being told they have coeliac disease as they think a gluten-free diet will be very restrictive, however, there is so much gluten-free food available now and a lot of variety so Grace does not miss out on anything.

“It is important to get a diagnosis of coeliac disease early to avoid damage inside."

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