When was Imogen diagnosed with Coeliac Disease?
Imogen was diagnosed in 2022 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 around. 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! Soon after, her swollen tummy came back, and she was constantly very teary, tired and clingy - always wanting her dummy and comforter.
Later that year, she was sent back to A&E with the same swollen tummy. Whilst there, the Consultant recommended doing 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! We noticed such a difference as soon as we went on a strict gluten free diet, with the biggest changes noticeable following the first three months. She is such a happier and healthier child!
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 which we find it a lot easier, especially as she is a twin.
Imogen is three years in now, and understands that she can’t have the same foods as others or play with some of the simple things other children can, such as some paints, messy play, and 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 straightforward?
Juvela starter pack was amazing! It really helped us decide to choose 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 👑
