Monika Agorelius, a close friend and a Swedish-born journalist, director and producer at CloseUp Productions, which is a media production company based in England and France, is living with both celiac and Crohn’s disease. Not only does she have celiac, but she has two obstacles to navigate through with her busy schedule. Monika travels a lot for her work and has learned to ask for gluten free foods in several languages. I was lucky to have the chance to speak with her about living gluten free, and she shares her top three to-go snacks and in which country you get the best cinnamon buns.
How long ago were you diagnosed with celiac and Crohn's, what led you to get tested?
I was diagnosed with Chron's at the age of 24. About ten years later I started getting a different kind of belly ache, but still thought it was caused by the Chron's. I was not on any regular medication of any kind and I continued eating my normal healthy diet, which included wheat products. One day over lunch a TV producer colleague told me about her food allergies and she described the symptoms of celiac. 'This sounds familiar', I thought, so I went to the doctor for a blood test and soon discovered that I was also celiac.
What foods other than gluten, must you avoid?
In order to keep off medication, I've gradually, over the years learned which foods make me feel healthy and what to stay away from. This includes alcohol, greasy deep fried foods, processed foods, anything with ingredient lists and additives a mile long, anything with MSG (monosodium glutamate), artificial sugar replacements such as aspartame, and spicy foods. At times I don't cope very well with raw salads and milk products but most of the time it's okay.
Did you find all of this to be an obstacle to your busy lifestyle and career?
Yes! But after a while you learn what's good for you and if eating the right things makes you feel better than it's worth the extra effort.
How did you handle the early months after your diagnosis and the restrictions of your new diet, especially when working away on film sets?
It was hard at first to recognize all the food products that do contain gluten. It took me a while to learn that soy sauce has wheat in it, for instance.
Were/are you 100% compliant with the gluten-free diet? Are you very sensitive if you come in contact with gluten?
I know a few times when I've been feeling really awful and asking myself 'why now, did I eat something that's triggered this?' So I go back and read the small print on the packaging and usually find that there's some barley or wheat in the product. I may well be able to handle a bit of gluten on occasion, but I'm not going to eat a baguette just to check if I'm going to be sick or not. The pain is not worth it.
How do you handle your diet when travelling, or where you live in the French countryside, especially when there is a language barrier?
My French is not great, but one thing I learned quickly was to ask 'do you have anything without gluten please?' Which, unfortunately, they don't most of the time. Most supermarkets in the part of Normandy, where I live, offer rice cakes and sometimes gluten free cornflakes. Health food shops are better, they have a decent variety of gluten free products.
What about in England?
It's getting better and better all the time in the UK. Most supermarket chains, such as Tesco, Asda and Sainsbury's have big gluten free sections that are clearly marked and offer a good choice of products. My favourite range is Tesco's Free From range, their gluten free pasta is very tasty and so are their gluten free bagels and pita breads. These chains also sell the best gluten free bread, from Genius. The bread comes in white, brown and whole grain varieties, and are quite new on the market. It's the first gluten free bread I've found that is soft and does not require toasting. You can make a normal sandwich and it tastes like normal, 'gluten-full' bread!
What countries, do you feel, are the most aware of the gluten-free diet, and the easiest in which to eat?
Sweden, where I was born and brought up is the best for gluten free foods. The Swedes have a good awareness of food allergies and you find that supermarket staff, waiters and chefs in restaurants are well educated concerning food allergies. You can stay in a hotel and ask the breakfast waitress for gluten-free bread and they'll bring you a selection of breads and margarine that hasn't been in contact with knives containing breadcrumbs from bread containing gluten. It's a real treat. There are some really nice gluten free products in Sweden. Sempe makes lovely gluten free crisp breads, biscuits and pasta, and Fria make the nicest breads, my favorite is their poppy seed rolls and their Swedish style sweet cinnamon bun as well as the oat loaf.
When you are on film sets how to do handle your food restrictions and the craft services table? Do you arrange it ahead of time?
It depends. If I'm only on a particular set for a day or two I'll bring my own bread and some fruit, as back-up in case there isn't anything on the menu I can eat. If I'm on a job for a longer period of time I'll ask the caterer and they're always happy to help.
Have you found that awareness has increased since you were first diagnosed?
Yes, very much so. I think gluten intolerance is more common now than it used to be, and the awareness is getting bigger.
What reactions do you get from people when you tell them you have celiac?
It varies. Many people have no idea what celiac means, so you tell them 'it means that I have an allergy to gluten'. I've been in situations where someone has made a lovely cake and you have to turn it down and explain 'sorry, I’d love to eat it, but I can’t, I'm allergic to gluten' and they say 'but you can have a small slice, can't you?' and they look so disappointed, and then you feel really guilty. Those situations are awkward, but I then try to make a joke of it 'all the more cake for everyone else', kind of thing. I've also been in situations were someone reacts as if I've been struck with a nasty terminal disease, and do a sympathetic tilt of the head, nodding in concern and saying 'I'm so, so sorry to hear about your tragedy, I hope you get better soon'. It's unfortunate that an intolerance like celiac doesn't just go away, but it's possible to learn to live with it. It’s not life threatening, and with an increasing awareness living a life without gluten gets easier and easier every day.
What are some "go-to" snacks that you carry with you when you are on set or just out and about?
A banana, bottle of still water and a homemade gluten free sandwich, made with Genius bread and cheddar cheese.
To read more of my interviews with fascinating people living gluten-free, go here.