My coeliac story

I live a normal life, just with a tiny twist!

"I was diagnosed with coeliac disease in 2022, when I was just five years old, following multiple visits to the general practitioner (family doctor) because of sickness, tummy pains, problems with my stools and poor growth. The doctors would always say the same thing: "She has a stomach bug, irritable bowel syndrome, or a milk allergy."

A year passed before coeliac disease was first mentioned. We had never heard of it before, but all my symptoms seemed to fit. Within weeks, the tests began, and not long afterwards, the results came back as "strong positive". I had coeliac disease, but what did this mean?

I was referred to a dietitian and a consultant who explained more about my condition. The pain had been coming from my damaged small intestine, and my growth had slowed because the tiny finger-like structures called "villi" were no longer healthy enough to absorb the nutrients from my food.

All my favourite treats had suddenly been taken away from me because I could no longer eat the gluten they contained. My life had changed. The delicious taste of my favourite dinners, desserts and snacks – GONE!

I could no longer eat gluten, a protein found in wheat, barley and rye. Even ordinary oats could be a problem because of cross-contamination. Gluten-free foods were now my only option.

I found this very hard to adjust to. School dinners needed to be changed, party invitations meant checking whether I could be catered for, and the whole family felt the burden. We couldn't just go anywhere for dinner or eat at any restaurant. Everything had to be planned, planned and planned again!

However, over the years, things became easier. My parents educated themselves about naturally gluten-free foods, including fruit, vegetables and unprocessed meat. We still had to check food labels carefully for gluten-containing ingredients and warnings about possible cross-contamination.

Anyway... four years into my journey, I have decided to spread awareness of what coeliac disease really is and share my story with others who might be interested.

There are many myths about coeliac disease. Some people say it's an allergy or an intolerance, but this isn't true. Coeliac disease is a lifelong autoimmune condition that can cause significant damage to the small intestine if not managed correctly.

There is currently no cure for coeliac disease. The only available treatment is a strict gluten-free diet, which allows the small intestine to heal and helps prevent further damage.

So, with all this in mind, I have decided to go "full steam ahead" and share my story!

I started on 22 March this year, when I was given the opportunity to be interviewed by BBC News, and an article about my story was published.

I feel that many children my age (nine years old) might feel alone, different or scared about their coeliac journey. There is support out there, such as Coeliac UK and Becky Excell, who is known for her amazing gluten-free recipes, but I feel there could be so much more for children like me.

I have made it my mission to be a voice for young people with coeliac disease, raising awareness in cafés, schools and other childcare settings to help keep both children and adults with coeliac disease safe."

Eliza

 

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