Victoria Mary Clarke

Emma Clarke Interview

Emma Clarke Interview, copyright Victoria Mary Clarke, 2002

Emma Clarke is having dinner with me. We’ve ordered sushi, which is delicious. But there’s another reason why we’ve ordered it. On the menu, it has a little ‘c’ which lets us know it’s safe for Coeliacs. Emma is a Coeliac, which means that unlike most women who watch what they eat for reasons of vanity, Emma has to watch what she eats for reasons of self-preservation. When she was a small child, she became so ill that her parents thought she was going to die. She spent months in hospital, being tested for everything imaginable, and still no-one could figure out what was wrong with her. Before she was admitted, she hadn’t been able to stop vomiting.
‘My dad jokes about it and says he was going around after me with a bucket and spade,” she laughs.   “Seriously, though, there were other little babies in there who died and my parents were absolutely terrified. Nobody wanted to come and see me in hospital, in case they got too attached to me. They all thought I was going to die. Then, my father got talking to a doctor, a friend of the family who said he just knew from the symptoms that my father was describing that it was Coeliac disease.”
A biopsy was subsequently performed. Which involves swallowing a tube, at the end of which is a little silver ball, which takes the biopsy. Emma says that was a nasty experience.
‘Because your intestine is about fifteen feet long, you’ve to swallow this tube for eight hours. So you’re walking around holding this tube and when it gets to where it’s meant to be, the metal thing takes a bite out of your intestine. Thank God they don’t do that anymore, now they do endoscopies.    So they confirmed that I was a Coeliac and put me on a gluten free diet.”
Gluten causes changes in the lining of the intestine, if you are a Coeliac, which impairs its ability to absorb nutrients, from food. Children with the disease usually exhibit symptoms such as diarrhoea or constipation, vomiting, loss of appetite and weight loss. Adults, too, can develop Coeliac disease and exhibit similar symptoms, along with tiredness, irritability and anaemia. It is estimated that one in a thousand people are affected and the condition tends to run in families. In all cases, a gluten free diet is the answer and must be adhered to for life. For many, this can seem like a life-sentence, simply because gluten is present in so many of the foods that we eat, including wheat, rye and barley. Given the fact that most of us live on a diet which includes bread, pasta, biscuits, cakes, and breakfast cereals, the task of eliminating it is a complicated one. It can mean having special meals prepared, at home and avoiding many foods in restaurants. And reading labels on soups, sauces and other foods very carefully. The actor Terence Stamp has famously spent fifteen years perfecting a loaf of wheat free bread, because of his own sensitivity. He now produces an entire range of wheat free products, called the ‘Stamp Collection’, all of which are suitable for Coeliacs. But specialist products can be very expensive, as well as difficult to find at your local supermarket. I asked Emma if she ever cheats.
            “I can’t say never. Everybody cheats. But most of the time it’s not by my own doing. Sometimes the ingredients wouldn’t be clearly marked, or I could be given something in a restaurant, or at a friend’s house. A couple of months ago, I had Mexican food, at a friend’s house. She told me she was buying corn tortillas. And I said to her ‘Are you absolutely certain they are just corn?” And she said yes. She was on a wheat free diet and she said they were definitely made with corn flour. So I ate it. But I knew by the texture that they couldn’t be gluten free. Because they were too well held together. The thing about gluten free food is that very often it’s crumbly, because gluten is a gelling agent, it’s starch. So I checked the box and it was wheat flour and she couldn’t believe it, when I said it to her.”
            The Coeliac Society warns that children, especially find it difficult to stick to the diet, because they don’t want to seem to stand out from the crowd. Did Emma feel deprived, as a child?
‘No, but sometimes I felt embarrassed. I wasn’t under my parent’s eyes all the time. I remember going away with friends, one time, camping. And I ate bread because I was too embarrassed not to!”
Did she go to birthday parties, as a kid?
‘Yeah. My parents would have to talk to the parents and explain what I could and couldn’t eat. There would be snowballs, they were gluten free, and jelly and ice cream instead of birthday cake. People would generally try to accommodate me, but at one birthday party I was given bananas and ham. And nothing else! It was hard sometimes, because I was young and people looked at me as a bit of an anomaly. They wanted to know what it was, kids would give me a biscuit and say Go on, eat it! They wanted to see what would happen to me. It wasn’t cruelty as much as curiosity, they wanted to see if my head would blow up.”
What would have happened?
‘I would have been sick. I did throw up once, when I was given porridge. Oats are only okay if they are grown totally apart from any wheat. The wind can blow wheat into an oats field and you can get contamination. So the Coeliac Society don’t recommend that you eat oats.”
What does she eat?
‘Lots of stir-fries! I can eat meat and fish. Potatoes, rice. They make corn pasta and rice pasta now, too. If I make sauce, I’ll use a tomato base and I use gluten free soy sauce. The one thing that I did have a problem with for a while was gravy, I couldn’t find a nice gluten free gravy. But Bisto, I’ve discovered, make one, which is great. Things have improved a lot. When I was a kid, Johnson, Mooney and O’ Brien made a gluten free bread, but I didn’t like it, so we had gluten free bread mix at home. My dad used to do a lot of baking for me, he made Victoria sponges and peanut butter biscuits. So I did get treats!”
Does she eat sweets?
‘Yeah, too many!”
So being a Coeliac doesn’t mean you lose lots of weight?
“No, unfortunately not!”
The Coeliac Society advises that occasional lapses from the diet are unlikely to be harmful, but that people should exclude gluten completely, if they want to remain problem free. They also advise that if you are diagnosed, you should contact the society for support and encouragement, as well as regularly updated information on gluten free foods and ways to prepare them.