Amna’s story – Coeliac Disease

"Sometimes, I’d feel like someone was stabbing me in the stomach. Once, I woke up in the night and I couldn’t walk from the stomach pain. I thought I was going to die."

Tell us a bit about yourself

I’m Amna and I’m a 23-year-old Palestinian living in Huddersfield. I have been working as a health advisor for over a year, alongside preparing to get married this summer.

A digital character drawing of a white woman wearing a green jumper and navy trousers. The image is cropped to show the top of the trousers and upwards, and she is holding her hands to her stomach in pain. She has a pained look on her face.When did your symptoms begin?

I’ve had issues with my stomach, bloating and going to the toilet since I was a child.

After I graduated from university in 2022, my symptoms worsened. I travelled to America but felt fatigued, dizzy and had to lie down all the time.

Sometimes, I’d feel like someone was stabbing me in the stomach. Once, I woke up in the night and I couldn’t walk from the stomach pain. I thought I was going to die. The pain even spread to my back, and I couldn’t get up to stand on my feet. After returning home in January 2023, my mum encouraged me to go see the doctor.

Talk us through your journey to diagnosis

The doctors thought bacteria might be causing my symptoms, but the test results came back clear. In February 2023, I had an endoscopy (a small tube with a camera that enters the digestive system via the mouth). This showed that my oesophagus and stomach were inflamed. Doctors also took biopsies. The results of the biopsies revealed coeliac disease. I was then told that I’d need a blood test to check for coeliac disease in order to officially diagnose me with it.

Guts UK cartoon of a pink shocked looking oesophagus, stomach and bowel wearing black boots.

When did you receive your diagnosis?

In order to have my bloods tested to diagnose coeliac disease, I was told to continue eating gluten (you need to be eating gluten for six weeks for an accurate blood test result.). After receiving my blood results, in August 2023, I was diagnosed with coeliac disease by my gastroenterologist and told to avoid eating gluten. They gave me some advice about gluten, avoiding it and cross-contamination (when gluten accidentally comes into contact with gluten-free food). They signposted me to Coeliac UK for more support.

How did being diagnosed with coeliac disease make you feel?

I tried to avoid thinking about it. I kept saying to myself, ‘Oh, it’s fine.’ If I kept thinking about it, I would have broken down. I didn’t know anyone with coeliac disease either, so it felt quite lonely. I used social media to find people with coeliac disease and found some gluten free places to eat, which was helpful.

My diet can feel so hard and restrictive. Nobody at home understood what gluten free was. Sometimes, having to explain the details makes family meals hard to navigate. My mum is a great help. She prepares my food first, before the rest of my family’s so that no cross-contamination occurs.

How are you now?

I stopped eating gluten and immediately felt the difference. I had another endoscopy eight weeks after cutting gluten out. This showed that my gut inflammation had significantly reduced.

However, I do suffer from joint pain. I’ve been referred for a DEXA scan (an X-ray to measure how dense your bones are). You learn what foods you can and can’t eat. It’s hard to eat out but a lot of the times when I do, my friends eat gluten-free with me.

Why do you want to share your story today? 

When I first got diagnosed, I didn’t know what coeliac disease was. I didn’t know that there are so many foods that have gluten.

After my diagnosis, I told my auntie about my symptoms and diagnosis, as she has symptoms too. She asked to be tested for coeliac disease and, soon after, received a diagnosis.

I want to help other people with coeliac disease and show them that you can still live life to the fullest. I don’t want others to suffer in silence. There are people like me who get what you’re going through, and charities like Guts UK who can help you. Raising awareness is so vital and this is a big part of why I’m sharing my story today.

Guts UK is the only UK charity funding research into the digestive system from top to tail; the gut, liver and pancreas.

People are suffering. People are dying. All because of a lack of knowledge about our guts. Guts UK exists to change that. 

With new knowledge, we will end the pain and suffering for the millions affected by digestive diseases. Please consider donating today. Your donation will help fund research leading to earlier diagnoses, kinder treatments and ultimately, a cure.