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Every superhero has an origin story, and our Coeliac Superheroes are no different. Over the months, we’ve had the privilege of spotlighting incredible individuals in our community who are living boldly with coeliac disease. In honour of Coeliac Awareness Month, we’re res-haring the wisdom and experiences of our previous Coeliac Superheroes. Each one shared their journey with honesty, humour, and heart, starting with a moment that changed everything: the first signs that something wasn’t quite right.
In this special edition, we’re revisiting the very beginnings. From mysterious symptoms and endless doctor visits to that gut feeling that something deeper was going on, these are the stories that marked the start of their coeliac journeys.
Whether you’re newly diagnosed, searching for answers, or simply curious, we hope that their reflections remind you that you’re never alone & that every superhero story starts with a question.
So, let’s go back to where it all began for…
Laura @CoeliacSistersXo
“Before being diagnosed with Coeliac Disease I really didn’t have a clue what it was. In fact, I only knew one other person with it, and never really paid enough attention to know what it was.
My diagnosis came after about a months spell of feeling really sick after every meal I ate. It got to the point where I began to realise that it couldn’t be normal- and so at the age of sixteen I convinced my mum to take me to the doctors.
I was really lucky with my diagnosis, purely as after listing my symptoms to my local GP he immediately identified that what I was experiencing were all symptoms of Coeliac Disease, and now looking back on it, these symptoms go back right the way to when I was aged six or seven.. thats a lot of what I thought were stomach bugs!”
Cate @CateTheCoeliac
“I found out I had coeliac when I was just 9 years old. My parents started to notice how tired I was (I was a very hyper child so this was extremely un usual) and I was having awful stomach pains and diarrhoea regularly.
They decided to take me to my GP who tested me on a dairy free diet first. This didn’t work so I was sent for blood tests in hope to reveal any issues.
Two of my cousins had been diagnosed with coeliac disease at the time, but their granny (not from my side of the family) had coeliac, so we assumed it was unlikely. My tests came back positive (my mum found out after through bloods that she also has the gene and my granny now”
has it, so we know the link!)
Lucy @LucyLovesGlutenFree
“I have had stomach issues for as long as I can remember. I suppose I thought it was fairly normal, for me.
Finally, in lockdown (2020) I had more time to reflect on my health and realised it wasn’t normal.
I went to the doctors for various blood tests and all came back fine. They decided to do one last one just in case. And it came back as ✨abnormal✨. Next came the endoscopy to formally diagnose Coeliac Disease.”
Hayley @GlasgowGrazers
“For the past 2 and a half years, I have had l chronic headaches all day every day. On top of that, I’ve also been fatigued no matter how many hours of sleep I had the night before and feeling weirdly dizzy.
I went to the doctors numerous times, each time being dismissed and leaving with a prescription for pain killers. I knew something wasn’t right, so I was very persistent with them. Eventually, the GP admitted they had no idea what was wrong and referred me to a specialist. After I had the appointment with the specialist, I left feeling deflated as he also couldn’t give me an answer but referred me for an MRI as a precaution.
When I got the letter with the results, the MRI was fine (thank goodness) but he had noticed that the blood test I received the year before showed low iron and folate, so wanted me to get tested for coeliac. I thought this was just another precaution, so when I got the letter saying it was confirmed and there was no need for further testing, I was so surprised!
Looking back now, I realise so many signs were there that I passed off as normal. For example, itchy bumps on my elbows (dermatitis herpetiformis), feeling bloated all the time and of course the headaches and fatigue. I wonder if it even started when I was younger, since I had visited the doctors a lot as a child with sore stomachs and mouth ulcers, but I guess I’ll never know!”
Rosie @RosieGlutenFreeFinds
“I went for some routine bloods due to my anaemia and they checked for tTG-IgA antibodies, which came back high indicating coeliac disease. After that I was referred for an endoscopy which confirmed my diagnosis.”
Lexy @FreeFromFoody
“I was officially diagnosed with celiac disease when I was about 14, after spending so much time struggling to stay in school. After a lot of unexplained symptoms, my doctor ran some blood tests, and the results came back positive for celiac. To confirm it wasn’t a false positive, they also performed a biopsy—which sealed the
diagnosis. Finally, everything made sense. It was such a relief to know that I wasn’t just being “sensitive” or making it up, as some people had implied when I missed days off school. My parents and school were incredibly supportive, helping me transition to a gluten-free diet.”
Daria @FindingGlutenFreeUK
“It all started with a really bad rash on my back, which was initially misdiagnosed as eczema and psoriasis. But something did not feel right, so I started doing my own research and came across dermatitis herpetiformis. It is a skin condition that only affects about ten percent of people with coeliac disease. When I saw photos, it
looked exactly like what I had.
At the same time, I was dealing with constant brain fog, migraines, and extreme tiredness. I was deep in my solicitor qualifying exams, so I assumed the exhaustion was just from stress and studying. But once I connected all the dots, I went to my GP, got tested, and a couple of weeks later, coeliac disease was confirmed.”
Joanne @OneCoeliac_JoanneSzrok
“I started getting very unwell, excruciating tummy pain, horrendous lethargy, often bed-bound. 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.”
