'Doctors dismissed me for years, then diagnosed me with coeliac disease'
There are so many varying perceptions, misconceptions and ideas surrounding coeliac disease and being gluten-free. ‘It must be so restrictive’, ‘Coeliac disease is super rare’, ‘A breadcrumb surely won’t hurt’... yet, coeliac disease – an autoimmune condition where your immune system attacks your intestines when you eat gluten – affects 1 in 100 people in the UK.
Perhaps more shockingly, according to ZENB’s recent ‘Gauge on Gluten’ report, only 36% are diagnosed and 68% of us don’t actually know what coeliac disease is.
Laura Strange, a gluten-free recipe developer and author of cookbook Eat & Enjoy Gluten Free, published earlier this year, was diagnosed with coeliac disease 25 years ago. We caught up with her to find out a little more about her personal experience and how she’s learned to love being gluten-free.
I became unwell... when I was seven years old. I started getting regular stomach cramps, and upset tummies after meals and became increasingly exhausted. My parents took me to our GP several times over the following years, especially when I started losing a lot of weight, but my symptoms were dismissed by the doctor as ‘growing pains’ or anxiety.
I can’t look at photos from that time because I find it too upsetting. I looked like I had like a severe eating disorder. It was just a mystery, not knowing what was going on. It turned out I had quite severe anaemia as well as undiagnosed coeliac disease.
I was diagnosed when... when I was 14. I was seen by a different GP and she immediately sent me for a blood test, which revealed severe anaemia (I had really low iron) and coeliac disease markers. After an endoscopy – where I was sedated so they could take a sample from my small intestine – I received an official diagnosis of coeliac disease, and I was told to follow a gluten-free diet. It was a huge relief to finally find out what was wrong.
This was 25 years ago – back then, a gluten-free diet wasn’t something widely understood. There was no free-from section in the supermarkets. We had an appointment with a dietitian, and then we were just sort of sent off into the world to work it out.
The hardest part was... not knowing what was wrong. At least with the diagnosis, came a clear treatment – sticking to a strict gluten-free diet. Although there’s no cure, I knew there was something that could make me feel better and could help reduce the symptoms.
As a 14-year-old girl – where everyone is going through puberty – I was just trying to get through the day and survive. I don’t think people fully understand how difficult it is to live with undiagnosed celiac disease. It really knocks you down. Symptoms range so much – I had very typical symptoms, but for some people, symptoms include; mouth ulcers, bloating, recurrent miscarriage, and it can lead to really serious conditions like osteoporosis, and bowel cancer.
Trying to find gluten-free alternatives at the beginning was really hard. When I was diagnosed, you could only get different free-from foods on prescription from the doctor, or in very niche health food shops. The bread would vary from rock-hard to sand-like bread. I remember cooking some vegetable pasta and it just disappeared and turned into sludge at the bottom of the pan, perhaps because I cooked it for a minute too long.
Now, there's a huge free-from section with such a vast array of products – although the quality varies a lot. I think for newly diagnosed coeliacs and other gluten-free people it can sometimes be a bit overwhelming because you just don’t know where to start. And some products have a lot of processed ingredients in them.
While lots of people may have heard of coeliac disease... they don’t know that it’s not just about avoiding wheat. Sufferers have to avoid wheat, barley, rye and oats (unless the oats are specifically stated as being gluten-free). We also have to avoid any ‘may contain’ foods, in case of cross-contamination. A crumb or gluten in my food would make me really really ill – but it varies from person to person.
Common sources of gluten: bread, pasta, pizza, biscuits, cakes, flour, beer.
Since then, I've learned... You have to think about food all the time. It may sound silly, but if I'm on the train, for example, and someone is eating a sandwich next to me and getting their crumbs everywhere, I have to be super aware and make sure that I don’t get any of their crumbs on my hands.
I’m the only coeliac in my direct family, so I have to be really mindful not to get any of my food mixed up with my children’s. It’s really difficult when they’re little and they just want to climb on you and give you cuddles, or you pick them up from nursery and they’ve been playing with playdough – which is made from flour, which has gluten in it – and then you get ill because you get the playdough on your hands and then accidentally touch your mouth. Having to be aware of it all the time can be quite exhausting, but it hasn’t stopped me from doing anything or living a really full life.
As a Coeliac you should... always ask about the menu when you eat out at restaurants in a nice polite way. You just need to ask super clear questions about how the food is prepared. Is the deep fat fryer used for anything else that contains gluten or is it safe for coeliacs?
Don’t just trust that a label with ‘GF’ means coeliac friendly.
I’ve travelled to... more than 60 different destinations as a coeliac, but France is not good for Coeliacs. The supermarkets are great – they’ve got loads of really good gluten-free ranges there. But I remember being in a restaurant in Nice – and I speak French – and they said they could make me some plain lentil thing, but there might be some gluten in, so we had to find somewhere else. But Italy, for example, is surprisingly wonderful if you’re Coeliac. They’ve got a slightly higher incidence of coeliac disease there in the population. So gluten-free pizza or pasta is much more widely available and they have good processes in place.
The one thing that changed my health... is learning how to properly implement a gluten-free diet. As soon as I cut gluten out, the effect was quite rapid. I think my body was just so ready to get better – and perhaps being young as well helped with quicker gut repair. I felt like a new person. It was wonderful to have so much energy again. I can’t overstate the impact of going strictly gluten-free – it just had such a revolutionary effect on my life.
I made plenty of mistakes in the beginning. We were really feeling our way through what being gluten-free meant. We didn’t work out for quite a while that soy sauce contains gluten. So, I would still get poorly on occasion. But I ended up making a lot of things at home and I guess the silver lining of it all is that it’s led me to my current career. If I hadn't had that diagnosis and hadn’t felt that there wasn’t much information out there, perhaps I wouldn’t have started sharing recipes online.
My one piece of advice is... watch out for cross-contamination and ‘may contain warnings’. I don’t eat anything that says ‘may contain’ warnings. If something said ‘may contain poison’, would you eat it? Some people can be a bit more gung ho about how they live with their coeliac disease and it’s all personal choice, but I know if I eat anything with ‘may contain’ I’ll end up feeling really poorly – and, for me, it’s just not worth the risk.
Laura’s favourite GF buys
Eat and Enjoy Gluten Free, by Laura Strange, £12, is out now, published by Hardie Grant Books.
For more information, Coeliac UK – coeliac.org.uk – provides lots of helpful advice and resources for those who think they may have symptoms of coeliac disease.
Cut through the noise and get practical, expert advice, home workouts, easy nutrition and more direct to your inbox. Sign up to the WOMEN'S HEALTH NEWSLETTER
How I eat with...
How Millie Mackintosh eats with IBS for better gut health
How Shona Vertue eats with PCOS for hormonal health
How Stef Williams eats with endometriosis for better energy
Freya Broughton spent her entire life battling extreme eczema – here’s how she restored her health through food
How nutritional therapist Lauren Windas changed her diet to help with chronic fatigue syndrome
You Might Also Like
