It starts with a strange tingling on my tongue as I get on the tube in central London. About five minutes later, I start to wonder if I might feel a little faint (or is it just really, really hot down here?). After 15, I know: I’m going to vomit the entire contents of my stomach into a bag full of orchard fruits from my friend’s dad’s garden. “Have some apples and pears from Normandy,” she’d said, charmingly, just an hour or two earlier, as we sat down for my 40th birthday afternoon tea. Little did she know the horror that was to be unleashed on that inoffensive little tote.
A few minutes later, as I stand at the side of the road in north-east London, puking into a bin in broad daylight, it occurs to me that people must think I’m drunk. But alcohol has nothing to do with my current predicament. You can blame that entirely on the scones. Or perhaps the sandwiches. I certainly have my suspicions about the dainty little tart whose pastry tasted so good, so buttery, so, well, not gluten-free, that I double checked with the waitress. But that’s the thing about being coeliac: you’re often not quite sure what the culprit was. You just know there’s been a crime – and your poor, long-suffering gut is the victim.
It was towards the end of a two-year, pasta-filled stint in Italy as the Guardian’s Rome correspondent that I realised something was seriously wrong with what my mother would term my “insides”. I remember calling her after a trip to Venice (I think it had been to cover George Clooney’s showstopper of a wedding – now there’s a nice contrast for you), convinced that the agonising guttural cramps and debilitating fatigue I was experiencing were due to Giardia, a tiny parasite that spreads diarrhoeal disease. “But it says on the internet that you generally only get Giardia from travelling to far-flung places where there’s no clean water,” my mum said, or something to that effect, gently, and doubtfully. “I’ve been to Venice!” I wailed, insistent that the pungent waters of the Grand Canal had left me bedridden. I wasn’t fooling either of us.
Several months later – after weeks of mysterious and relentlessly unpleasant gastrointestinal symptoms – I finally went to the GP in Britain. I had visited a doctor during a grim holiday in the US when I was largely unable to leave the apartment but I’d been prescribed antibiotics, which had done nothing, and stung for several hundred dollars, so I wasn’t feeling optimistic. But I was desperate: my illness had come to dominate my life. I had lost a huge amount of weight. I was so weak I ended up leaving Italy without telling many people because I simply didn’t have the energy – physical or mental – to call them, let alone meet. (If you’re one of them, sorry.)
But this doctor was great, and it was only in retrospect that I realised quite how unusual she was. Upon hearing my symptoms she immediately referred me for a blood test, and within days she called me at work to tell me the news: my bloods had shown I was severely anaemic – and I had coeliac disease. What, I remember saying, that thing with gluten? No way! When I was really sick the only thing I could stomach eating were those little salty wheat crackers; I would eat packets and packets of them … Oh. The cogs of my brain started, slowly, to turn.
I got lucky with my doctor. Plenty of people, I’ve since learned, struggle for years with all the symptoms of coeliac disease – bloating, diarrhoea, vomiting, heartburn, brain fog: a veritable smörgåsbord of delights – without ever being diagnosed. As it was, I was told to continue eating gluten until I could have the biopsy that would confirm my diagnosis by showing damage to my small intestine. And then? What was the treatment, I wanted to know? When could I go back to the crackers?
The answer was short, and blunt: never. The only way for someone with coeliac disease – an autoimmune condition that, if undiagnosed, can lead to the slow damage of organs and bowel cancer – is to give up gluten for ever. Now, given that this is a protein that is found in wheat, rye, barley and, due to high levels of cross contamination, oats – that can feel like a mammoth challenge. It means, obviously, no (normal) scones, no cakes, no sandwiches. It also means no beer, no Colman’s mustard, no soy sauce. Do not sample that street food, do not take a punt on that new chippy, do not linger beside the festive buffet.
It is the end of one era of your life, and the beginning of another. Of course, there’s a sense of loss. But by that point many people are so glad to finally have an answer to their troubles that they are happy to start afresh. I certainly was. It was worrying enough to hear about my anaemia, which was so bad my GP said I would in previous years have been hospitalised. (These days industrial-strength iron tablets did the trick.) On top of that a bone scan showed I had osteopenia, the precursor to osteoporosis. I was in my early 30s. The consultant said I’d probably had coeliac disease for about a decade without knowing it.
I was desperate, therefore, to feel healthy and energetic again – although I did wonder if maybe it had been so long I had forgotten how that felt. I threw myself in to decoding this new and unfamiliar world: one of scanning each label on every item of food to see if I could eat it or not (bewildering, to begin with, but now I do it without even thinking about it, my brain like a barcode-reader). Shopping took a lot longer. Eating in restaurants was a minefield. (I am lucky that my partner is a fantastic cook – I am hopeless.)
Going to friends’ houses was excruciating. It is incredibly difficult, especially if you’re a chronic people pleaser like me, to say to someone who has tried their hardest to cook something gluten-free that you still can’t have it because they’ve put in one forbidden ingredient or used the same pan for normal and GF pasta or sprinkled some soy sauce on at the last moment or, well, the list of unfortunate potential errors is, sadly, endless. It’s best – for everyone – if I just bring my own. I do the same when I travel abroad for work, which is on the one hand soul-destroying in countries like Lebanon, with some of the most delicious cuisine known to man, but frankly reporting is easier if you’re not also trying to vomit into your handbag and I’d rather not take the risk. Having said that, the best gluten-free bread I’ve ever had, bar none, was in Bethlehem.
If you’re reading this because you have been recently diagnosed, please, don’t worry. You will feel healthy again! You will enjoy food again! It will be a bit different, but after a few years you won’t even notice. It becomes normal. There’s a huge variety of gluten-free food in the shops, the kind that coeliacs couldn’t have dreamed of 30 years ago. The M&S Made Without Wheat range is a personal favourite, though it’s not cheap, and I have recently discovered Leigh’s gluten-free bakery, which makes mouthwateringly good focaccia and delivers coeliac-friendly doughnuts to my door: the dream! Oh, and I know I said no soy sauce – but actually tamari is just as good.
Though it may not feel like it to begin with, you can still eat a huge range of food on a gluten-free diet: fruit, vegetables, pulses, potatoes, rice, and, depending on your diet, dairy, meat and fish. If anything, my diagnosis has made us cook more from scratch and more healthily as a family. Our kids are educated in the details of the gastrointestinal tract: the five-year-old has been known to do a highly dramatic full-body imitation of my small intestine’s villi collapsing, vanquished by the deadly enemy: wheat. I have found the best gluten-free bakery in Paris, and mastered the art of a GF sticky toffee pudding.
One day, perhaps, I may even brave an afternoon tea again. But not any time soon; I’m still having flashbacks to that tote bag.
