“Don’t go straight to the free from aisle” – Jo’s experience of being diagnosed with coeliac disease

Jo is a public contributor on our project to improve the diagnosis of coeliac disease. As part of this project, we are running a survey to understand how sure people want to be that they’ve got coeliac disease before starting a gluten-free diet. Here Jo shares her positive experience of the process of diagnosis.

I teach Pilates and one of my students has self-diagnosed as coeliac. But for me, I like to have the label. It gives me certainty about what I’ve got.

You hear so many horror stories of people who take 14 years to be diagnosed, whose GP didn’t take them seriously. But my diagnosis was quite straightforward.

It started on 3 June 2018. I remember the date because it was my friend’s birthday and we were meant to be going out for drinks. I’m a huge cake lover, and I’d bought these two donuts from a food stall in Bristol, and then I had this excruciating stomach pain. It was like very strong period pain and it just wouldn’t go away. I had to call my friend and say I couldn’t make it.

I didn’t really think anything of it until later that month when I went to a friend’s wedding in a village near Longleat. I’d bought a falafel pitta to eat on the train. At the wedding there was a buffet, including loads of homemade cakes. I started getting uncomfortable but when I got up I was in agony. There we were, walking round this lovely village, with me in my pretty dress, gritting my teeth because of the pain. We’d all brought picnic blankets so I ended up lying on one on the ground in the foetal position, grimacing in pain. One of the bride’s friends was a nutritionist who suggested I might have coeliac disease. I dismissed it, saying it was probably just IBS. But she said I should get tested.

So I made an appointment with my GP. The doctor who saw me was quite young, recently qualified. The first thing she suggested was a coeliac test, just to rule it out. I had the blood test, but was told the result was negative. So I thought, oh ok, I’ll just have to go down the route of excluding foods until I figure out what the problem is. But a week later I got a text out of the blue saying ‘we’ve found some abnormalities in your test results’. So of course I immediately leapt to the conclusion it was colon cancer or something terrible like that. I had a sleepless night worrying about it.

Thankfully at my GP you can just turn up and see a doctor. The GP I saw the next day said it was all a bit odd because actually my blood test said I was through the roof coeliac – one of the highest results he’d seen. Within an hour they got back to me – he’d called the lab and I definitely was testing positive for coeliac disease.

The next stage was to have an endoscopy to confirm the diagnosis. People who’d been through the process recommended I carried on eating gluten until the endoscopy. Some people had immediately started excluding gluten, which made their endoscopy come back negative.

About a week later I got the invite for my endoscopy on the NHS. This was in July – but they couldn’t see me until November. A colleague reminded me that my employer at the time offered private health insurance, so I called them at 9.30 on a Monday morning, and got an appointment that same day.

The consultant who did my endoscopy said he didn’t think I was very coeliac-y inside, but when the results came back, it showed I definitely was. He told me to stop eating gluten from the point of the endoscopy. This was 8 August – so it was all done in about 5 or 6 weeks.

I didn’t find the transition to gluten-free too hard. I gave away all my gluten-free food on Olio, the food recycling app, so it didn’t go to waste. I didn’t really eat much bread or pasta anyway. Cake and donuts were probably the most gluten-y things I ate. On the whole, it’s an easy way to live and a healthy way to eat, as long as you go back to basics. I cook from scratch and I already ate lots of vegetables.

My advice to people who get diagnosed is don’t panic, just stop and think of all the things you eat that are naturally gluten-free. Don’t go straight to the free from aisle. I did just that but quickly realised that all the food there is processed, full of sugar and really expensive.

I wanted to get involved in the coeliac diagnosis project because before my diagnosis, I’d never really understood coeliac disease. I’d never stopped and thought about the coeliac people in my office who were left out of cake buying, for example. But since, I’ve seen lots of negative stories. Like a blog about someone who found it really hard, calling it a prison sentence. But that’s not my experience. To encourage people to get tested, it’s really important to talk about the positive stories too. And my diagnosis was a really positive experience for me.

Please complete our survey to understand how sure people want to be that they’ve got coeliac disease before starting a gluten-free diet. You could win a £50 Amazon voucher.