'I only started living properly after being diagnosed with coeliac disease - within days I felt much better'
Celebrities have made going gluten-free trendy, but a new survey says intolerances to food are real. Belfast actress Caroline Curran and theatre director Patricia Downey tell Una Brankin how wheat makes them seriously ill.
Caroline Curran (32) is best-known for playing Maggie Muff from Fifty Shades of Red, White and Blue by playwright Leesa Harker. The Belfast-born actress and writer was diagnosed with coeliac disease six years ago and is also lactose intolerant. She says:
I started having tummy trouble when I was 17 or 18. I was running to the loo 17 times a day and was so bloated with this hard swollen stomach you'd have thought I was six months pregnant. It was awful; very uncomfortable and I felt tired and sluggish all the time. I just couldn't digest anything properly.
I was crampy and run down, and had black rings under my eyes all the time, but I didn't let it get me down. I was at college and having a laugh, so I didn't really think about it. I was trying to lose weight, though, so I was eating wheaten bread and nuts and all that.
But I ended up with diahorrea all the time and got sores on my back end. I was a wee bit embarrassed going to the doctor about it at the start, but I was in so much pain, I'd have shoutedit from the rooftops to get some relief.
So I went to see a GP and he gave me medicine for Irritable Bowel Syndrome (IBS) and iron supplements. They didn't work and I knew something else was wrong.
Then, I was referred to the Royal Victoria Hospital and a surgeon there discovered my bowel was very enlarged and diagnosed me with coeliac disease. He told me to go off all food with wheat and gluten, so I switched to mostly dairy - which was a disaster.
A few weeks later I was as bad as ever, so I had a blood test to see what was going on and it turned out I was lactose intolerant, too. I can't have any dairy - no milk, chocolate, butter, cheese or crisps - there's milk even in crisps.
It was hard, but I only started living my life properly after I was fully diagnosed. After a couple of days off gluten and dairy, I felt great; I had a spring in my step. I started eating more soya foods and everything gluten-free. Some of the products aren't a nice taste and the bread's quite hard, so you have to toast it.
I don't have to take any medication, but need to take a lot of supplements now because my body doesn't get enough vitamin C, B12, calcium, vitamin D and iron.
If I miss the vitamins, tiredness can kick in. I work hard and need a lot of energy on stage and to project my voice, and they give me a boost.
There's much more awareness about gluten and lactose intolerance now, compared to when I was diagnosed.
When my colleague Patricia Downey started to complain of the same symptoms a few years ago, I said, 'please go to the doctor right away' and it turned out she was coeliac too.
I have to be careful on tour, I can't just stop off at a filling station and grab something; I always have to have something prepared.
For breakfast, I have two eggs and gluten-free bread toasted, and a milk substitute in my tea or coffee.
For lunch, it's something like tuna and gluten-free pasta, which takes longer to cook as it's tougher, and for dinner, it's steak and mash potato with lactose free butter and gravy, and veg. I can't drink beer but most wine is okay.
Most restaurants are very good now and have food I can eat, but I still need to be careful.
The other night I was out and thought the veg tasted lovely. It turned out there was butter on the vegetables - my tummy swelled and I was in and out of the bathroom for the rest of the night.
I'm not sure if going gluten and lactose free is a healthy thing in general. I exercise to build my stamina and I have lost weight.
I really miss cheese of all types and I had gluten-free cupcakes for my 32nd birthday recently.
I'll allow myself a slice of pizza for a treat, but will to stick to this diet for the rest of my life.
Gluten-free products have become a regular fixture on supermarket shelves and they're essential for anyone dealing with bloating, stomach aches and gastrointestinal pain when they eat foods such as bread and pasta.
Figures show that one in 100 people here are intolerant to gluten, which is found in cereal flour. And a new study from Columbia University has revealed that gluten can trigger body-wide inflammation in anyone - even those who have not been diagnosed as coeliac.
As a result the medics have claimed food intolerances can make sufferers ill - even if they don't have coeliac disease.
'I still do miss a good bacon buttie with real white bread'
Patricia Downey (53), from Belfast, is the artistic director of the Spanner in the Works theatre company. An accomplished director, writer and workshop facilitator, she was awarded the highly commended community impact award from the Department of Culture, Arts and Leisure in 2015, three years after she was diagnosed with coeliac disease. She says:
I thought I had a tummy bug - but it wouldn't go away. I was crampy and bloated, and always running to the loo, and I just thought something was not right. But because I couldn't stay away from the toilet too long, it started to interfere with my work. I mentioned it to Caroline Curran - we were working on a show called Well Behaved Women at the time - and she said I should find out if I'm coeliac.
So I had tests done at my GP's, but they came back negative. I carried on but after eight weeks of no improvement, the doctor fast-tracked an appointment for me at the Royal Victoria Hospital, and I had a scope put down my throat and one up the other end. The one down the throat was actually more uncomfortable; the other was fine.
I was able to watch what the camera picked up there and then and the doctor took some biopsies, just to check there wasn't anything sinister going on. It was a routine thing, so I wasn't scared.
A week later the results confirmed I was coeliac - gluten intolerant - and I was referred right away to a dietitian in the Royal. Apparently the condition had been there a long time and built up over the years to the point where my body was badly lacking in vitamin C and calcium. My gut was going up and down in waves and I wasn't absorbing the vitamins I needed. Then I'd get really bloated.
I was always a big bread eater and I really miss it, especially a plain white pan with loads of butter and jam. Thankfully I'm not lactose intolerant, like Caroline. I can have gluten-free bread and pasta, but it's not the same. But four years on, I'm fine. Before, I was sluggish nearly all the time.
Now I've become a big fan of the banana. I'll have banana on my gluten-free toast every morning, or porridge with gluten-free oats. Lunch could be fruit with gluten-free crackers, and for dinner last night, I had gammon with potato and veg. I really do miss a good bacon buttie with real white bread, though.
Gluten-free products are very expensive. I'm lucky enough to have a prescription for bread every week. I have to be careful not to eat anything with hidden wheat ingredients, like custard. Jelly's okay, or you can eat pavlova if it's made with cornflour.
I was at a restaurant and should have known better - I had gravy jus and there must have been wheat in it, as I was running to the toilet all night. It's a very uncomfortable feeling, like a toothache coming on.
When I say I'm coeliac, some people - especially Americans - will ask if it's a lifestyle choice or medical. It's definitely medical in my case, but I suppose it can be a lifestyle choice if you think wheat is not good for you, but I'd love to go back to eating bread. I don't drink, but if I did it would have to be gluten-free beer or whatever. The upside is that I have lost weight since I was diagnosed. I was always a big girl and still am - just not as big as I was.
- Patricia Downey’s play Mind Games comes to the Lyric Theatre in Belfast, September 6 at 8pm and September 7 at 11am and 8pm, tel: 028 9038 5685 or visit www.spannerintheworks.org.
- Coeliac Society helpline tel: 0333 332 2033 or visit coeliac.org.uk or Coeliac in Belfast's Facebook page