Read about Abbie's experience with being diagnosed with Coeliac Disease and EoE and how...
Real Stories
Kerry & Imogen's Story
Kerry shares her story of how her daughter Imogen was diagnosed with coeliac disease at 18 months old.
When was Imogen diagnosed with Coeliac Disease?
Imogen was recently diagnosed in early this year at 18 months old
When did you first notice the symptoms?
Imogen was always a very unsettled baby, she didn’t settle on formula but became calmer once she was weaned.
She started nursery at 9 months old and due to covid and her lack of immune system, she became susceptible to every bug going. Just before her first birthday she was very poorly with sickness and an extremely swollen tummy. She was rushed to A & E where she had many tests and scans. Apart from an inflamed liver everything came back clear! but soon her swollen tummy came back, and she was constantly very teary/tired and clingy. She would always want her dummy and comforter.
Earlier this year she was sent again to A & E with the same swollen tummy. Whilst there the Consultant recommended, she had a blood test for Coeliac Disease, and shortly afterwards the results came back positive!
How soon after starting on a gluten free diet did Imogen start to feel better?
The change was incredible! She is such a happier baby! We are all still learning Imogen’s new diagnosis and she is still accidentally exposed to gluten (these things do and will happen at times) but she manages the best she can and we will get there!
How did you feel once Imogen's diagnosis was confirmed?
At first we were scared, we were unaware of the extent of this disease. I got home that day and emptied all our cupboards and organised separate areas for Imogen’s food. We hadn’t realised how much food had gluten in it! As a family we have gone majority gluten free, we find it a lot easier, especially as she is a twin.
Imogen is too young to understand that she can't have the same foods as others and play with some simple things other children can, like some paints, messy play, playdough... but we try our hardest to include her in everything we possibly can.
As Imogen’s Mummy I have to make sure that every day she is kept healthy with planning and preparing each and every meal, snack, drink. We can’t just pop to a restaurant, cafe, friends or family houses, without pre planning a gluten free lunch.
Our aim is to make sure Imogen lives and loves life like any other little girl
How did you find setting up a prescription, was it straight forward?
Juvela starter pack was amazing! It really helped us decide on choosing Juvela as Imogen’s prescription. I let Imogen’s dietician know the products we wanted and she sent a letter direct to the doctor! So easy and simple! Once the order has been made it takes about a week to arrive. Having the prescription has means we always have bread / bread rolls.
What is Imogen's favourite Juvela product?
She loves the rolls - great for mini pizzas :)
What advice would you give to parents who think their child may have coeliac disease?
The hardest is trying to explain to people that it’s not an intolerance or allergy but it’s very crucial to her health!
Join Coeliac UK for advice and be persistent in getting your child tested!
Social media has been my go to, sharing others experiences, getting advice and lots of recipes to try!
Keep in touch with Kerry and Imogen by following The Coeliac Princess
