Lily’s Coeliac Disease Story | Growing Up Gluten Free

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GUEST BLOG: Ashley Fabray

Lily was diagnosed with coeliac disease when she was just 16 months old, in 2013. Looking back, there were signs that something wasn’t right, but at the time we didn’t know what we were looking for.

After weaning, Lily became increasingly distressed and clingy. She was frequently sick, struggled with constipation and wasn’t gaining weight as she should. She would cry all the time and would only seek comfort from me. She just didn’t seem like herself, and as a mum, you know when something isn’t quite right with your child.

Lily’s Early Coeliac Symptoms and Diagnosis at 16 Months

Eventually, after losing weight again, I booked a GP appointment and saw an amazing GP who suspected coeliac disease, something I had never heard of! Following a referral to a paediatrician and a blood test, this confirmed her coeliac diagnosis.

I still remember how quickly things changed once gluten was removed from her diet. She became happier, healthier and more like the little girl we knew she could be. Part of me was relieved and happy, part of me felt guilt that she’d been suffering for so long, but the other part also felt so sad for everything I knew she would now miss out on.

At the time, we thought the hardest part would be changing her diet. We quickly realised it was so much more than that. Coeliac disease affects every part of daily life, from school to parties, holidays, eating out, family celebrations and simply being able to accept food without worrying.

The Reality of Raising a Child With Coeliac Disease

I remember feeling incredibly alone as a mum, suddenly I had this tiny toddler who couldn’t eat gluten, and I didn’t know anyone else in our situation or where to turn for advice, reassurance or simply someone who understood what everyday life with coeliac disease was really like.

I found it difficult having to constantly explain cross-contamination to other people to keep her safe.

When she was little, I felt like I was always having to explain it wasn’t simply a case of eating gluten free. I had to make people understand why separate preparation, clean hands, utensils and surfaces mattered, and it could be exhausting having to repeatedly advocate for something that was essential to keeping my daughter well.

As a family, we’ve had to learn how to navigate that together. We’ve adapted our home, our routines and the way we plan days out and holidays. There have been challenges, but there have also been so many positives. We’ve become much more adventurous with food, discovered an amazing gluten free community and learned that with the right preparation, Lily really doesn’t have to miss out.

The Emotional Impact of Coeliac Disease on Children

However, Lily has grown older, she’s become much more aware of the risks associated with gluten and cross-contamination. Unfortunately, that awareness has also brought anxiety. Food can sometimes feel complicated and overwhelming for her, particularly in situations where she doesn’t feel in control.

Lily's Coeliac Disease Story by Ashley Fabray — *Ashley been with her daughter Lily every step of the way during her coeliac disease journey*

As Lily’s mum, one of the hardest things I’ve found has been trying to get the right support for the anxiety that has developed around her coeliac disease and cross-contamination. There’s so much focus on keeping her physically safe from gluten, but finding support for the fear and anxiety that can come with that has been much harder.

I really feel there needs to be more support and understanding around the mental health side of managing coeliac disease, particularly for children and young people, as the emotional impact can be just as significant as the physical side.

Our biggest hope has always been that coeliac disease doesn’t define Lily. It’s part of her life, but it isn’t all of who she is.

How Thumbs Up For Gluten Free Began

@thumbsupforglutenfree started from a desire to show that living with coeliac disease doesn’t have to mean missing out. When Lily was younger, I found myself constantly looking for gluten free options, checking menus, researching products and trying to make sure she could join in with the same experiences as everyone else.

There were times when it felt isolating, particularly when she was the only child in the room who couldn’t simply eat what was being offered. I wanted to create somewhere positive and encouraging, a place where other families could find ideas, reassurance and inspiration, but also see the reality of living with coeliac disease.

That’s where the Instagram page ‘@thumbsupforglutenfree’ came from and as Lily has always loved giving things a thumbs up when finding something gluten free, it felt like the perfect message. Gluten free food can be delicious, fun and exciting, and being coeliac shouldn’t mean your life has to become boring or restricted.

Sharing Gluten Free Food, Travel and Family Life

Over the years, our page has grown into much more than food reviews. We share gluten free finds, baking, restaurant experiences, travel, family life and the honest side of coeliac disease too. We try to keep things positive without pretending that it’s always easy.

Because there are difficult days, and I think it’s important that families see both sides, the challenges and the moments where you realise just how much is possible. Most importantly, I hope Lily can look back and see that her diagnosis never stopped her from enjoying life.

Lily and her sister have also become amazing bakers, not something I think would have happened if it wasn’t for creating gluten free cakes and bakes, so Lily doesn’t have to miss out. We share their creations on our Instagram page too.

Finding Connection Through the Coeliac and Gluten Free Community

Connecting with the coeliac and gluten free community has made such a difference to us as a family. When Lily was first diagnosed, social media wasn’t what it is today, and finding information and support could sometimes feel quite overwhelming. As she got older, we discovered just how many other families were navigating the same challenges.

Through ‘@thumbsupforglutenfree’, we’ve connected with people locally and online from all over the country. We’ve met other families at gluten free festivals, discovered amazing independent businesses and spoken to people who completely understand the realities of living with coeliac disease.

“Being able to use our experiences to help others and raise awareness of coeliac disease in children is something we’re incredibly proud of. The community has shown us that we’re not alone.”

— Lily's mother, Ashley Fabray

There’s something really reassuring about talking to someone who doesn’t need an explanation. They understand why checking ingredients matters, why eating out can require planning and why sometimes the smallest things can feel like a big deal.

We’ve also loved being able to share our own experiences and hopefully help others along the way. Whether that’s recommending a gluten free restaurant where Lily felt safe and relaxed, sharing a gluten free product she loves or simply talking honestly about the anxiety that can accompany coeliac disease.

Helping Other Families Feel Less Alone

We have also had some amazing opportunities through Instagram and social media. We’ve been able to attend some fantastic gluten free festivals as ambassadors, take part in panel discussions and share Lily’s story with other families, helping to raise awareness of what it’s really like growing up with coeliac disease.

Being able to use our experiences to help others and raise awareness of coeliac disease in children is something we’re incredibly proud of. The community has shown us that we’re not alone. And for Lily, seeing other children and young people living normal, happy lives while being gluten free has been really important.

We have both made some really great friends through this community. It’s a reminder that coeliac disease can be challenging, but there’s a whole community of people who understand and support each other.

Why Coeliac Disease Awareness and Cross-Contamination Matter

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I think the biggest change I’d like to see is greater understanding that coeliac disease is a serious medical condition, not simply a dietary preference. There is still a lot of misunderstanding around what gluten free means and the importance of avoiding cross-contamination.

For someone with coeliac disease, it’s not enough to simply remove the bread or pasta from a meal. The preparation, cooking environment and handling of food all matter.

I’d love to see more consistency in restaurants, schools, workplaces and food establishments, so families don’t have to constantly explain or worry about whether someone understands the condition properly.

Supporting the Emotional Side of Coeliac Disease

I’d love to see more awareness of the emotional and psychological impact of coeliac disease. The physical side is often discussed, but the anxiety, feeling different, and the pressure of constantly checking and questioning food can be just as significant.

For children and teenagers especially, being gluten free can affect friendships, school experiences, parties, holidays and their confidence in social situations. I think we need to recognise that supporting someone with coeliac disease means supporting the whole person, not just their diet.

Ultimately, I’d love a world where gluten free options are readily available, properly prepared and treated as normal, where children like Lily can go to school, attend parties, eat out and travel without feeling like they’re an inconvenience or missing out.

Awareness has come a long way since Lily was diagnosed, but there’s still a long way to go. I just hope that by sharing our story, we can help other families feel a little less alone and a little more supported.

Thanks, Ashley

Lily’s Coeliac Disease Story: Growing Up Gluten Free