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My Food Revolution: How I learned to love a gluten-free diet

IIt begins with a strange tingling sensation on my tongue as I board the tube in central London. About five minutes later I start to wonder if maybe I’m getting a little dizzy (or is it just really, really hot down here?). After 15 I know: I’m throwing up all the contents of my stomach in a bag full of fruit from my friend’s father’s garden. “Have some Normandy apples and pears,” she’d said charmingly just an hour or two earlier, as we sat down for my afternoon tea for my 40th birthday. Little did she know what horror was about to be unleashed upon this harmless little dead body.

A few minutes later, standing on 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 the scones for that. Or maybe the sandwiches. I certainly have my suspicions about the dainty little torte 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 celiac disease: Often you’re not quite sure what the culprit was. You just know there has been a crime – and your poor long-suffering gut is the victim.

Towards the end of a two-year, pasta-filled stint in Italy as the Guardian’s Rome correspondent, I realized that there was something seriously wrong with what my mother called my “inside.” I remember calling her after a trip to Venice (I think it was to cover George Clooney’s showstopper of a wedding – now there’s a nice contrast for you), convinced that the nagging laryngeal spasms and the debilitating Fatigue I was experiencing was due to Giardia, a tiny parasite that spreads diarrheal diseases. “But the internet says that the only way you generally get giardia is to travel to remote places where there isn’t clean water,” my mom, or something like that, said softly and dubiously. “I’ve been to Venice!” I wailed, insisting that the sharp waters of the Grand Canal had left me bedridden. I didn’t fool either of us.

A few months later – after weeks of mysterious and unrelentingly uncomfortable gastrointestinal symptoms – I finally went to see my GP in the UK. I had seen a doctor during a dreary vacation in the US when I was mostly unable to leave the apartment, but was prescribed antibiotics that hadn’t worked and stabbed for several hundred dollars, so I wasn’t optimistic . But I was desperate: my illness had ruled my life. I had lost a tremendous amount of weight. I was so weak that I ended up leaving Italy without telling many people because I just didn’t have the strength – physically or mentally – to call them, let alone meet them. (If you’re one of them, I’m sorry.)

But this doctor was great and it was only in hindsight that I realized how unusual she was. When she heard my symptoms, she immediately referred me for a blood test, and within days she called me at work to tell me the news: my blood had shown I was severely anemic — and I had celiac disease. What, I remember saying, the gluten thing? No way! When I was really sick, the only thing I could eat was these little salty wheat crackers; I would eat packets and packets of it… Oh. The wheels of my brain slowly began to turn.

I got lucky with my doctor. Many people, I have since learned, struggle with all the symptoms of celiac disease — bloating, diarrhea, vomiting, heartburn, brain fog: a veritable hodgepodge of joys — for years without ever being diagnosed. As it was, I was told to continue eating gluten until I could have the biopsy, which 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?

Gluten free is the only way forward for celiac disease. Photo: Jill Mead/The Guardian

The answer was short and blunt: never. The only way for someone with celiac disease — an autoimmune disease that, if left undiagnosed, can lead to slow organ damage and colon cancer — is to go gluten-free forever. Given that this is a protein found in wheat, rye, barley and, due to high levels of cross-contamination, oats, this can feel like a mammoth challenge. It means, of course, no (regular) scones, no cakes, no sandwiches. It also means no beer, no Colman’s mustard, no soy sauce. Don’t try that street food, don’t punt on that new chippy, don’t linger next to the festive buffet.

It is the end of one era in your life and the beginning of another. Of course there is a sense of loss. But many people at this point are so happy to finally have an answer to their problems that they are glad to start over. I definitely was. It was worrying enough to hear about my anemia, which was so bad that my GP said I’d been hospitalized for the past several years. (Nowadays, industrial-strength iron tablets were sufficient.) In addition, a bone scan showed that I had osteopenia, the precursor to osteoporosis. I was in my early 30s. The counselor said I had probably had celiac disease for about a decade without knowing it.

So I was dying to feel healthy and energetic again – although I wondered if it had been so long since I’d forgotten what that felt like. I embarked on deciphering this new and unknown world: scanning every label on every food item to see if I can eat it or not (confusing at first, but now I’m doing it without thinking, oh my brain like a barcode scanner). Shopping took a lot longer. Eating out in restaurants was a minefield. (I’m lucky my partner is an amazing cook – I’m hopeless.)

Going to friends’ houses was excruciating. It’s incredibly difficult, especially when you’re a chronic pleasure eater like me, to tell someone who’s tried very hard to cook something gluten free that you still can’t have it because they added a banned ingredient or used the same pan used for regular and GF noodles, or sprinkled some soy sauce on top at the last moment, or, well, the list of unfortunate potential mistakes is sadly endless. Best – for everyone – I just bring my own. I do the same thing when I travel abroad for work, which on one hand is soul crushing in countries like Lebanon, with some of the most delicious cuisines known to man, but honestly reporting is easier when you’re not also trying to throw up in I’d rather not take the handbag and the risk. Other than that, the best gluten free bread I have ever tasted, without exception, was in Bethlehem.

If you’re reading this because you’ve recently been diagnosed, please don’t worry. You will feel healthy again! You will enjoy eating again! It will be a bit different, but after a few years you won’t even notice it anymore. It will be normal. In the shops there is a huge selection of gluten-free foods that celiac sufferers would not even have dared to dream of 30 years ago. The M&S Made Without Wheat range is a personal favourite, although it doesn’t come cheap, and I recently discovered Leigh’s Gluten Free Bakery, which makes deliciously good focaccia and delivers celiac-friendly donuts to my door: the dream! Oh, and I know I didn’t say soy sauce – but actually, tamari is just as good.

Even if it doesn’t feel like it at first, you can still eat a wide range of foods on a gluten-free diet: fruit, vegetables, legumes, potatoes, rice and, depending on your diet, dairy products, meat and fish. If anything, my diagnosis has resulted in us cooking more from scratch and healthier as a family. Our children are raised in the details of the gastrointestinal tract: the five-year-old is known for doing a highly dramatic full-body imitation of the villi of my small intestine collapsing, defeated by the deadly enemy: wheat. I’ve found the best gluten free bakery in Paris and have mastered the art of a gooey toffee pudding with GF.

One day I might even dare to have afternoon tea again. But not so soon; I still have flashbacks to that tote bag.

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