What’s it like to live with a digestive condition during Ramadan?

Tell us a bit about you

“I’m Mia and I’m 32. I’m a housewife, living in Birmingham and I’m originally from Sheffield. I was very career focused but due to my health, this took a backseat. I travel to and from Sheffield a lot as this is where my family live and stayed there for eight months when I first received my diagnosis.”

When did your symptoms begin and what are they?

“I began experiencing frequent stomach aches, diarrhoea, skin problems and lost a lot of weight. I had these symptoms for quite a few months but ignored them, hoping they’d go away. I also found it hard to get an appointment with my GP. At the end of February 2021, I woke up severely bloated and felt like my stomach would explode from being so blocked up. I ran 111 for advice and soon, tests were arranged. “

What tests did you have?

“I received a diagnosis of Irritable Bowel Syndrome (IBS), then had tests for coeliac disease and Inflammatory Bowel Disease (IBD). Blood tests showed I was positive for having coeliac disease then the wait began for an endoscopy (camera test down my throat). In two months, I lost three stone. My bowel was so damaged that I’d bleed when going to the toilet to empty my bowels. A diagnosis of coeliac disease was later confirmed.”

How did receiving a diagnosis make you feel?

“I felt devastated. I kept thinking “but I’m healthy! I go to the gym five times a week, I’m about to get married” and I couldn’t understand why it was happening to me. I felt like my whole life had been taken off me, especially being such a “foodie”. I wondered if God was punishing me and felt isolated. In the South Asian community, talking about your bowel habits is a taboo subject and this made me feel lonelier. In 2022, I also developed an eating disorder and found out that coeliac disease was impacting my liver. I was put on anti-depressants as my physical health was taking such a toll on my mental health.“

Can you tell us how having coeliac disease affects the month of Ramadan? How does this make you feel?

“For the first couple of years after my diagnosis, I didn’t fast. You don’t have to keep fast in Ramadan if you’re poorly. Because my small bowel was so damaged, I put my focus into healing and staying grounded and humble. Ramadan is such a special time for Muslims around the world and fasting is just one part of it. I spent a lot of time thinking of the less fortunate and ensured I was respectful of my family and friends who were fasting. I spoke to our local imam (the person who leads worship in a mosque) and arranged to donate £5 daily (a Fidya) to the less fortunate for Ramadan. Muslims who cannot fast for health reasons are encouraged do this.”

What is your experience of attitudes towards your condition, including during the month of Ramadan?

“Some family members on my mum’s side have coeliac disease and my great grandmother was also thought to have had coeliac disease. Not many people speak about in my community due to the stigma surrounding the bowels. One of my cousins has had it for twenty years and unfortunately, it isn’t talked about in our community.  

When I first received my diagnosis, I kept it to myself due to the fear of embarrassment. I even had Helicobacter Pylori and knew I was showing all the symptoms, after doing my own research, but really had to push myself to reach out. Now, I try to advocate for myself, but this can be tiring and takes a lot of emotional energy. When I got my diagnosis, my side of the family were amazing. My mum doesn’t speak English so me and my sister would look for things to translate and explain my condition to her. With people outside of my family, it can be a struggle. I find that different generations can struggle to understand.”

Why have you chosen to share your experience today on living with a digestive condition, especially during the month of Ramadan?

“I unfortunately felt I had to rely a lot on Google for my symptoms and concerns, which always showed me the worst-case scenario! Knowing where to go for evidence-based, patient information which you can rely on is super important and I’m glad I found Guts UK. 

I really want to encourage people not to shy away from talking about their symptoms and not to feel guilty if they celebrate Ramadan and can’t fast. Islam is so lenient and doesn’t ask you to punish yourself. It’s so important to listen to your body and get your truth out there. If you are a Muslim, speak to your local imam or spiritual guide. You deserve to be heard and you deserve support.“

Thank you so much, Mia, for sharing your story today. Because of you, more people will get to grips with guts.