IIt all starts with a strange tingling sensation on my tongue as I board the tube in central London. After about five minutes, I start to wonder if I’m feeling a little faint (or is it just really, really hot in here?). After 15 I know: I will vomit all the contents of my stomach into a bag full of fruit from my friend’s father’s garden. “Get some apples and pears from Normandy,” she said charmingly just an hour or two ago as we sat down to my 40th birthday afternoon tea. She had no idea what horror was about to befall that harmless little bag.
A few minutes later, as I stood on the side of a road in north-east London, vomiting into a trash can in broad daylight, it occurred to me that people must think I was drunk. But alcohol has nothing to do with my current predicament. You can only blame the buns for this. Or maybe sandwiches. I certainly have my suspicions about the dainty little pie whose dough tasted so good, so buttery, so, well, not gluten-free, which I double-checked with the waitress. But the fact of the matter is that you suffer from celiac disease: you are often not quite sure who is to blame. You just know that there was a crime and your poor, long-suffering gut became a victim.
Near the end of a pasta-filled two-year stint in Italy as a Guardian correspondent in Rome, I realized that something was seriously wrong with what my mother would have called my “innards.” I remember calling her after a trip to Venice (I think it was to cover George Clooney’s wedding show – here’s a good contrast) convinced that the excruciating laryngeal spasms and debilitating fatigue I was experiencing were caused by giardia, a tiny parasite, spreading diarrheal diseases. “But it says on the Internet that usually Giardia only gets infected when traveling to remote places where there is no clean water,” my mother said or something, softly and dubiously. “I was in Venice!” I lamented stubbornly that the sharp waters of the Grand Canal had bedridden me. I didn’t cheat on any of us.
A few months later – after weeks of mysterious and relentlessly unpleasant gastrointestinal symptoms – I finally went to see a general practitioner in Britain. I went to the doctor on a gloomy vacation in the US, when I was practically unable to leave the apartment, but they prescribed antibiotics, which did nothing and stung several hundred dollars, so I was not optimistic. But I was in despair: my illness began to dominate my life. I lost a lot of weight. I was so weak that I ended up leaving Italy without telling a lot of people because I just didn’t have the strength – physical or mental – to call them, let alone meet. (If you are one of them, sorry.)
But this doctor was wonderful, and it was only in hindsight that I realized how extraordinary she was. When she heard about my symptoms, she immediately referred me for a blood test, and a few days later she called me at work to break the news: blood tests showed that I was severely anemic and had celiac disease. What did I remember saying, that gluten thing? Never! When I was really sick, the only thing I could stomach was these little salty wheat crackers; I’d eat them in packets and packets… Oh. The gears of my brain began to slowly turn.
I got lucky with my doctor. I have since learned that many people struggle with all the symptoms of celiac disease for years – bloating, diarrhea, vomiting, heartburn, brain fog: a veritable smorgasbord of pleasures – and have never been diagnosed. Whatever the case, I was told to continue eating gluten until I had a biopsy that would confirm my diagnosis by showing damage to the small intestine. And then? What treatment would I like to know? When can I get back to crackers?
A gluten-free diet is the only option for people with celiac disease. Photographer: Jill Meade/The Guardian
The answer was short and straight forward: never. The only way for a person with celiac disease — an autoimmune disease that, if left undiagnosed, can lead to slow organ damage and colon cancer — is to give up gluten forever. Now, given that this protein is found in wheat, rye, barley and, due to the high levels of cross-contamination, oats, this may seem like a giant problem. This means, obviously, no (regular) buns, cakes, sandwiches. That also means no beer, no Colman mustard, no soy sauce. Don’t try this street food, don’t risk a new chip, don’t linger at the holiday buffet.
This is the end of one era of your life and the beginning of another. Of course, there is a sense of loss. But by this point, many people are so excited to finally find the answer to their problems that they’re ready to start over. Of course I was. It was disturbing enough to hear about my anemia, which was so severe that my doctor said that in previous years I would have been hospitalized. (These days, commercial-strength iron pills have done the trick.) On top of that, a bone scan showed that I had osteopenia, a precursor to osteoporosis. I was in my early 30s. The consultant said that I had probably been suffering from celiac disease for about ten years without even knowing it.
So I was desperate to feel healthy and energized again – although I did wonder if it had been so long ago that I forgot how it felt. I rushed to decipher this new and unfamiliar world: one of looking at every label on every food to see if I can eat it or not (at first I was confused, but now I do it without even thinking about it, my brain is like barcode reader). Shopping took a lot longer. Eating out at restaurants was a minefield. (I’m lucky my partner is a fantastic cook – I’m hopeless.)
Going to visit friends was painful. It’s incredibly difficult, especially if you’re a chronic caterer like me, to tell a person who has struggled to make something gluten-free that you still can’t eat it because they added one banned ingredient or used the same the pan for regular pasta and pasta GF or got sprinkled with soy sauce at the last moment or, well, the list of annoying potential mistakes is unfortunately endless. It’s better for everyone if I just bring mine. I do the same thing when I travel abroad for work, which on the one hand is heartbreaking in countries like Lebanon with one of the most delicious cuisines known to man, but honestly it’s easier to report if you’re not trying to vomit in your purse and I’d rather not risk it. Having said that, the best gluten free bread I have ever had was in Bethlehem.
If you are reading this because you have recently been diagnosed, please do not worry. You will feel healthy again! You will enjoy food again! It will be a little different, but in a few years you won’t even notice. It becomes normal. There is a huge variety of gluten-free products in stores that celiacs could not even dream of 30 years ago. M&S Made without wheat the range is my personal favorite although it’s not cheap and I’ve recently discovered Leigh’s Gluten Free Bakerywho makes delicious focaccia and delivers celiac-friendly donuts to my door: a dream! Oh and I know what I said wasn’t soy sauce, but really Tamari also good.
While it may not seem like it at first, you can still eat a huge variety of foods on a gluten-free diet: fruits, vegetables, legumes, potatoes, rice, and, depending on your diet, dairy, meat, and fish. If anything, my diagnosis has made us cook more from scratch and healthier for the whole family. Our children are well aware of the gastrointestinal tract: a five-year-old child has been known to very dramatically mimic with his whole body the collapse of the villi of the small intestine, defeated by a mortal enemy: wheat. I found best gluten free pastries in Paris and mastered the art Sticky Toffee GF Pudding.
One day, maybe I’ll even be able to venture out for afternoon tea again. But not anytime soon; I still have memories of this bag.
