At Jade & Joy, we love celebrating the incredible individuals who make a difference in the coeliac community. Today, we’re excited to introduce Joanne, the inspiring voice behind @onecoeliac_joanneszrok on Instagram, TikTok and Facebook. Joanne is a dedicated advocate for gluten-free living, sharing her experiences, tips and humour with her ever-growing audience.

Meet Joanne!

Hello, my name is Joanne, and I run the account @onecoeliac_joanneszrok on Instagram, tiktok and Facebook (most active on IG Heart hands)

I am a working mum to 4 wonderful children, including 7 yr old twins. Life is rather chaotic! I am the only coeliac in my immediate family, and we run a completely Gluten free home.

I was diagnosed with Coeliac in August 2009

Even with life rammer jammer, I dedicate any free moments I get to run my IG account which is now a big part of my life. I check in with the wonderful community as much as possible. I share new supermarket finds, a new recipe I have tried (did it go well or not?) sharing life as a coeliac and supporting others. I will be adding more humour to my account too, some fun videos to hopefully make people smile and resonate with.

If I have helped even 1 person since starting my account in December 2023 then my goal is already accomplished.

Joanne’s Life Pre-Coeliac Diagnosis

I was 23 when I was diagnosed. Life around food was fun, spontaneous, and carefree. I was truly blessed, I wish I had known how life would change, I would have done a few things differently (like eat a croissant when I wanted one, instead of only special occasions)

But we can’t change the past, so I am thankful for a diagnosis, that allows me to be healthy and strong for my family.

When did you first suspect you might have coeliac disease, and how did you get diagnosed?

I started getting very unwell, excruciating tummy pain, horrendous lethargy, often bedbound. I had a period of 6 months where I was ill on and off, I was also submitted to hospital overnight and diagnosed (wrongly) with an STI.

Many trips to the doctors and on one of the visits, I was unknowingly tested for Coeliac (if the doctor told me she suspected this, I had no idea what Coeliac was, so it didn’t mean very much) The bloods returned as positive for Coeliac, to get a diagnosis I had an endoscopy. My villi were severely damaged, Coeliac Disease was confirmed.

How do you handle social situations like birthday parties or family gatherings where gluten is everywhere?

Events like these are tough, over the 15 years of having coeliac disease gatherings have varied. Mostly, I would eat before I go, this is of course the safest. When the Buffett opens though, and you sit and watch everyone tucking in, I personally find that hard. I mean, who doesn’t love a buffet? This is when it feels very isolating. At times, I have removed myself from the situation, sometimes I have been stronger, and I can sit, chat, and discuss the many questions that usually come. Some days are good, some days are harder.

When we have a family gathering at my parents’ house (which always includes food), they ensure everything is GF. They want me to feel equal, going back home is my second safe space, it means so much that my parents and close family support my condition.

What’s one piece of advice you’d give to other parents newly diagnosed with coeliac disease?

When I was diagnosed, I was not a Mum, so I did have time to adjust with my new lifestyle without the added parental responsibilities. After diagnoses, my partner insisted we have an exclusively GF home. We were living GF for around 4 years, before we had children, to then bring gluten into the family home didn’t make sense for us. Brining gluten into the home, also increased my chances of getting ill massively, I had a big fear of getting ill and then not being able to show up for my daughter. I also didn’t want to pass my anxiety around gluten onto my child.

Having a gluten free home, gave me the privilege of feeling without Coeliac when I was at home, my safe space.

I think as a parent with Coeliac, situations will of course vary massively, so my advice would be, to put your health first. I vowed to make food fun, give my children a very varied diet and to make sure they never felt without because gluten was not present in our home.

My children LOVE all the meals I cook at home for them, they enjoy their food and have a very healthy relationship with food.

Are there any apps, websites or resources that have helped you on your gluten-free journey?

Of course, everyone should follow the support and advise from Coeliac UK. Since joining IG, I have found so many amazing accounts and, a massive community. My Coeliac family mean a lot to me.

Anyone with Coeliac should join our community, whether it’s to share your journey or sit in the background and absorb the knowledge, both will be a massive support to you.

What misconceptions about coeliac disease would you like to clear up for those unfamiliar with it?

Contamination, may contains, these are a massive bug bear of mine! Both are like playing Russian roulette, do I want to play that game? No thank you.

I have been ill (physically sick) with both, I do not take this risk.

Have your kids shown interest in trying gluten-free alternatives, and do they have any favourites?

Absolutely, my kids enjoy the gluten free lifestyle a lot. They eat a ton of gluten when they are with their dad, and in their packed lunches. I make them GF pitta, wraps, rolls etc but they aways have a biscuit/cake that contains gluten, so they eat gluten daily. They LOVE White Rabbit pizzas and Mad K pies; they prefer these GF alternatives then the gluten options they have with their dad. Seabrook crisps, tomato soup and Garafalo anellini pasta are a staple, and I know that GF pasta is lighter on their tummies, my partner also prefers against normal pasta.

How do you explain your dietary needs to your children? Do they understand why it’s important?

110%. It’s something we have always openly discussed, and it’s never been a problem, they understand how gluten makes Mummy ill, they want to protect me and would never want to make me unwell.

To be honest, it has helped them, they understand allergies/coeliac etc very well, so when they are faced with a situation that involves any of these, they know how to handle it. With so many people still uneducated on allergies etc, I have ensured 4 little people will aways be the empathetic and understanding person in the room. Their cousin also has multiple allergies and an epi pen, they support him massively and would never risk making him ill.

How do you prepare for traveling to new places where gluten free options might be limited?

Prepare, snacks, read, be ready to not find something! 15 years ago, I remember going on shopping trips with my Mum and never finding anything. Saturday shopping was our thing, we had lunch, coffee, and a cake out, that quickly changed. It was tough with very limited options/sometimes nothing on offer. I quickly learnt to always be prepared; I always have a bar in my bag. Hotels are always scary, if you can find an accommodating All-inclusive resort, I personally find this so much easier. The thought of finding a safe restaurant every night or going to a supermarket to find safe foods to cook meals, isn’t very fun. I’ve had mostly good experiences with AL, I have only been glutened once in Greece, 10 years ago. Albeit I don’t travel as much as I would like to, I have still experienced 8+ AL holidays over 15 years and I have not been unwell.

Joanne’s Coeliac Community Event!

I have always LOVED event planning, being the organiser is something that I really enjoy. I had this crazy idea of organising an event for the Coeliac community, I have no experiences with organising an event, let alone this scale, but I wanted to give it my all.

I sold the first 100 tickets in only 8 days!! I couldn’t believe the response.

So, On February 22nd I held an event in my home City, Portsmouth, where almost 200 people attended. We had MAD K Pies, Borough 22, Big Bear Blondies, Ali Walsh and Yarty Cordials in attendance.
I arranged some fundraising for Coeliac UK too. This included a raffle, where over 20 companies donated prizes, a Lola’s cupcake sale and some proceeds from Cheeky Nibble sales.

The total amount raised for Coeliac UK was £552.55.

The event was an absolute success, and I am already planning my next events – Stay tuned for more details !