Living with coeliac disease | From diagnosis to living a happy life | Imogen & Mommy | Allergy Companions

Guest blog 26.05.2023

By Kerry Blunt


I’m Kerry, Mommy to my beautiful little girl Imogen who was diagnosed with Coeliac Disease at 18 months old in March 2022. We have recently celebrated a year of being gluten free and she is doing amazing. 

Our Diagnosis journey

Prior to Imogen’s diagnosis, she was always a very unsettled baby.  She is a twin to her brother Ethan, and it was more noticeable as he was such a happy baby.  Due to them being born during Covid, we had little, if no support, in their early days at home.  Imogen didn’t settle on formula, she would scream a lot, so we decided to wean her at 3/4 months, thinking she was hungry. She became calmer once we introduced food. However, as time went on, we noticed she wasn’t happy, but we put it down to ‘being a girl and clingy baby’. 

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, as we were unaware of the symptoms of Coeliac Disease, we put it down to that was just her body and what her tummy looked like.  Immy was constantly very teary/tired and clingy to me, her Mommy. She would always want her dummy and comforter. Her behaviour changed drastically, she would scream a lot and we were unable to calm her down, and it became obvious that she was in a lot of pain! This is when we suspected there was more to it.  

My parents picked up on this and so did nursery; I contacted the doctors and we were sent again to A & E, due to the doctors being concerned of the same swollen tummy. Whilst there, lots of tests were carried out and in the morning, a Consultant recommended she had a blood test done for Coeliac Disease. I had never heard of this Disease and had no idea what to expect! 

We waited for a few weeks and after a few calls from myself to the doctors, we found out that her blood was never tested for Coeliac Disease.  This meant another trip to the hospital, for another blood test and shortly afterwards the results came back positive!

Receiving Imogen’s diagnosis

We were then booked in to see a consultant, and at our meeting I cried. I was very anxious about what was ahead, I cried for her and cried for the life changes that we were going to face but I also cried with relief that she had a diagnosis and we could now sort it!

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, our food is now primarily gluten free,  I follow some amazing pages with fantastic GF recipes and tips,  we find it a lot easier, especially as she is a twin and they love to share! 

As Imogen started potty training, we noticed she was having a lot of urine infections, I did some research and we spoke to the doctors, who confirmed that this was the Gluten coming out of her system.  As the months went on and she was on a Gluten Free diet, these infections gradually stopped.

I have learned so much since Imogen’s diagnosis.  To successfully manage Coeliac disease, you have to be on constant alert for potential danger!  As Imogen’s Mommy 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.  I check ingredients on every food item and communicate Imogen’s needs at all times! 


Imogens Day Nursery, Caterpillars, in Codsall, have been amazing!  The manager has carried out training with the staff and kitchen staff regarding Coeliac Disease, there are notices around the food preparation areas regards what Imogen can and cannot have, she has a separate food prep area and separate utensils.  They contacted me for some Gluten free meal ideas as they have recently updated their menus to make them as allergen friendly as they could.  They have been very inclusive with activities to include Gluten free play-dough and Gluten free baking activities.

It can be a frightening thought for any parent trusting someone else to care for your child, especially when allergens or an Autoimmune Disease is involved. I have had a lot of mums message me recently regarding their children’s provider and not being inclusive to allergens / Coeliac Disease

Below are a few things you can make sure your Early Years Provider are doing to keep your child safe 

We are very lucky that Immy’s nursery have worked very closely with us in supporting her diagnosis and adapting procedures / menu to become more inclusive.

Eating out and children’s parties

At the beginning, I was very anxious at the prospect of eating out but overtime, we realised that eating out doesn’t have to be difficult! With some research, forward planning and confidence, we now manage it. We speak to the venues before hand and make sure they are safe, they’re gluten free options and cross contamination.  I’ve learned some fantastic communication skills for when I’m out to check how they cater for Gluten Free and cross contamination.

A big worry for me was childrens’ birthday parties, but I have learned to realise that it is okay and now I try to make them as stress free as possible for me and Imogen.  People tend to feel bad that Imogen is ‘missing out’, but I explain to them that she would be happier not feeling poorly.  She is just be happy to have been invited and she know she will have rown special treats

Here are a few tips to help birthday parties more manageable for a child with Coeliac Disease

  1. Call the parents of the party and discuss your child’s needs and cross contamination to help them understand. Let them know that it’s okay to not hand out birthday cake  and are they able to provide GF options?
  2. Speak or visit the party event and ask to see the food menu, what gluten free options they have, if any, and look in their kitchen to check for cross contamination 
  3. Take your own food – Ask them what foods they are serving and prepare similar foods at home to take with you. 
  4. Make some gluten free cupcakes / birthday cake and cut into slices to place in the freezer. Defrost the night before to take to the party 

A couple of the places we have eaten at, where we feel Imogen is catered for and they understand Coeliac, allergens and the importance of cross contamination, include Nando’s and Pizza hut.

12 months since Diagnosis –  

Imogen recently met her dietitian for her 12 month review. She was so pleased with the progress she has made on her new diet and her BMI is now on the 50th centile, compared to the 25th centile pre-diagnosis.  Her bloods were taken, and all results came back within the normal range, the most pleasing was her TTG levels, her Coeliac screen is now negative.  

All the hard work, research, anxiety, tears, adaptions and life style changes that have been made these last 12 months are worth it all when you see how much better she is.

Our aim is to make sure Imogen lives and loves life like any other little girl 

Thank you

Thank you so much for reading my blog and I hope you enjoyed reading our story. Feel free to get in touch via our Instagram page ,@the_coeliac_princess 👑❤️.

Thank you,

Kerry x

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