Coeliac and Me: An unconventional love story

One hot, sunny afternoon in May 2019, I sat in the back garden of our quaint little cottage in South East England, with a burning secret. Bees hummed happily in the mint, lavender and sage plants which I had haphazardly planted in the borders and pots around me, and the incredibly invasive bamboo plant we had inherited with the property rustled gently at the merest whisper of the summer breeze, making me feel like I was in somewhere exotic, rather than in Twyford just off the A4. Our elderly, bald Staffordshire Bull Terrier lounged at my feet, sprawled on the hot patio, panting and grunting like a pig to show his simultaneous pleasure and near-expiration due to the heat. I was awaiting the return of my partner from a half-day at work, and I was going to tell him that, after much trying - months of temperature tracking, ovulation strips, pineapple munching and legs-in-the-air determination, I was pregnant.

It was an idyllic scene, and it should have been one of the happiest moments of our lives. But, as my partner stepped out onto the patio, squinting in the sun and giving me a cheery wave, I could barely muster a smile. Before he could open his mouth, I spat out “I’ve got something to tell you and I don’t know if it’s good or bad but I’m pregnant again but the line is still faint, it shouldn’t be faint if I’m 6 weeks, it should be strong and I don’t know if it’s a dodgy test or if it’s going to be another miscarriage…” grinding to a halt to try to swallow, despite the enormous lump in my throat, and to take a breath despite my heart feeling as if it was about to break through my ribs. It was not quite the adorable surprise reveal that we are used to seeing on YouTube or Instagram; the lovingly designed, personalised baby grow in a tiny box, the joyful tears, the warm embrace. My partner, being the unwavering pillar of goodness that he is, sat me down and told me to just take it for what it is; a positive pregnancy test, and, until we know otherwise, good news. “But I don’t feel like everything is OK”, I choked out. “I feel like it’s going to happen again.” And I could tell from his face, despite the smile he was attempting to hold, that he felt the same.

This was our third pregnancy. It was the third time I had seen those miraculous two lines appear on a cheap strip test, the third time I had run to the shops to buy an array of hideously expensive ‘proper’ tests, and the third time I had collected my precious morning pee into a plastic cup (which had become the ‘pee cup’ and lived hidden in the bathroom cabinet apart from for a few days each month where it sat proudly atop the cistern, awaiting its contents and the ensuing scenes of devastation or elation). It was the third time I had spent an hour dipping assorted tests into said pee and, with shaking hands and eyes straining so hard that it felt as if they would explode in some awful Looney Toons-esque manner, the third time that I had watched those life-changing signs appear. A blue cross. Two red lines. ‘Pregnant - 3+ weeks’. ‘Pregnant’. ‘Yes’. And twice before, I had felt a tell-tale tug in my abdomen. A pain, spreading like a glow across a slowly smouldering piece of paper, which eventually set alight and disappeared into ash. Twice before I had experienced the awful, awful moment which so many of us know all too well; the wipe, that moment which lasts an eternity as we pluck up the courage to look, and that crimson flash which signals the beginning of the end of that particular dream. Red, stop, do not proceed, danger. Twice I had laid in bed, curled up, alternating between sobs which felt as if they would tear me in two and stifling silence, frozen with grief, with a wall between my partner and I as we struggled to process what was happening. 

And twice I had said goodbye to a tiny life; not even classed as a person by the wider world. Just ‘products of conception’ gathered into a towel and held for a brief moment while I Googled what to do; what on earth do I do. How do I do this. How do I do anything, now that they’ve gone.

And so I knew, this third time, not to expect a happy ending. As we sat in that hot garden, on that beautiful afternoon, I felt as if I was suffocating; helpless in my inability to help the tiny life inside me to hang on, just hang on, just stay. Please, stay. In the UK, typically you must have had three miscarriages before you receive any investigations into why it might be happening. I felt resigned that this was it; this was our third tick of a box, a sacrificial lamb which should never have had to be sacrificed. But I tried to be upbeat; we went to the cinema and, drowning in hormones and fear, I sat in the darkness and barely dared to breathe, trying to feel the vibration of every cell in my body and to predict what they might do. Every time I went to the toilet - which was a lot, because I’d been drinking so much water to provide for the multiple tests - I held my breath, and felt dizzy with relief when there were no signs of my fears being realised. We drove home, and before bed, I did another test; pregnant. But the line was still faint. I went to sleep, after a tearful chat with my partner, and awoke hours later to a little tug in my tummy. I got out of bed, sat next to our sleeping, snoring, hippo of a Staffy, rubbed his velvet ears, and waited.

48 hours later, my baby was gone. I was numb. The tsunami of cramps that had threatened to render me unconscious just hours before had abated, and their waves had swept away all emotion. I was empty. The third box was ticked, but I decided there and then that I would stop trying for a baby. I couldn’t do it. Physically, mentally, in every way, I couldn’t do it. I had done everything right; I’d eaten so healthily, I’d avoided alcohol and caffeine, I’d minimised stress. I’d researched supplements - I was taking an array of pills which promised to improve egg health, my health, the baby’s health. I had done what felt like a degree's worth of study on ovulation and fertility; I’d tracked my cycles, I had apps full of data and a good old-fashioned notebook bristling with carefully dated ovulation strips taped into it alongside scrawls tracking any notable symptoms. I’d researched how to prepare an elderly dog for the arrival of a baby, I’d studied our finances and made a long-term plan, I’d even checked school catchment areas. We were so ready; but my body said no. Three times. It was screaming at me; NO, NO, NO.

I was furious. Three times we had fallen pregnant; a miracle in itself, when you look at the long list of things that have to fall into place for an egg and a sperm to come together and make magic. The timing, the temperatures, the egg itself, the sperm, the implantation, all of it; we had done it. Why couldn’t my body do what it was supposed to do? Why couldn’t it just let those little lives grow inside me? And that’s one of the many crushing parts of infertility and baby loss; sometimes there isn’t an answer. I was fully prepared not to know; to move on and try to convince myself that maybe things would be better if we remained childless. Think of the money we would save! All that unbroken sleep! Our house would stay clean when we cleaned it. We would get more dogs, loads of dogs, all of the dogs. We would be OK. I sold my Ava bracelet - the expensive, high tech gadget that I wore every night to help me figure out when I was ovulating - and I scraped the piles of ovulation strips and pregnancy tests into a drawer, deleted my fertility apps, gave my CoQ10 and folic acid pills away to a friend and tossed the pee cup into the bathroom bin, with a couple of choice words which rhyme with ‘cluck shoe.’

And so, life went on - it has a habit of doing that, even when you can’t fathom how it possibly could. When people asked if we wanted kids, I scoffed and said no. They didn’t know what we had gone through - what we continued to go through - and I wasn’t going to tell them. I was ashamed; I had failed, and I don’t like failing. I had held three tiny lost lives in my hands and disposed of them, feeling like a criminal. I wasn’t going to tell people that. I was going to move on, and we were going to be happy, and my stupid, hostile body would win. But that stupid, hostile body didn’t seem satisfied with its triumph; despite being left in peace, supplement-free, back on the hormone-regulating pill and left to its own devices, I continued to be plagued by abdominal distress. It was nothing new to me; I’d struggled since my teenage years with nausea, vomiting, weight loss and joint pain. I’d cut out gluten while at University for a while, and it had helped - then I’d reintroduced gluten (because a life without gluten was, at that point, not worth living- you’ll know if you’ve ever choked on a gluten free croissant, and trying to persuade my drunk twenty-one-year-old self that I shouldn’t eat that pizza after a night out was pointless) and things had been fine for a while. But in my late twenties, I’d started suffering again; and, consumed by the trying for, conception and loss of three babies over the last couple of years, I had lost touch with how my body should feel. I was showing some tell-tale signs that I may be suffering from at best a gluten intolerance, and at worst, coeliac disease; a condition where your immune system attacks your own tissue in the presence of gluten, a dietary protein found in wheat, rye and barley. Genetic testing had shown that I carry the gene responsible for coeliac disease, and an endoscopy and colonoscopy (now there’s a story for another day) showed major inflammation throughout my digestive system. So I decided to cut out gluten again and to do it properly this time; no gluten in the house, no occasional Krispy Kreme donuts, not a single trace of the much maligned structural protein which I suspected could be responsible for the amount of time I was spending doubled over the toilet. If I was going to be childless for the rest of my days, my God did I want to look the part. I wanted to glow with health and energy. I wanted to be the most rested person in the room. I would be the glamorous, fun, free Auntie. It might sound like vanity, but it came from a place of near-total mental destruction; I had to be something, if I wasn’t going to be a Mummy.

Within a couple of weeks, I started to feel better. I was surprised; my body and I weren’t on speaking terms, and I had expected it to continue to ignore my wishes and my nurturing and to continue to make me feel awful. I was no longer nauseous 24/7 and - at the risk of oversharing - I started to have slightly more normal bathroom habits. I wasn’t having to check for the nearest public toilet when out and about, nor was I using the repurposed gardening knee pad which I kept next to the toilet for long nights of vomiting. The constant simmering headache I had been living with for years lifted, the recurrent mouth ulcers I’d been experiencing disappeared and, as the weeks continued to pass, my energy levels rose. I couldn’t quite believe it; my body, that useless vessel which had let me down when I needed it most, was actually responding as I wanted it to.

I threw myself back into life with renewed, if emotionally constipated, vigour; we partied the summer away, quaffing Pimms at Henley Royal Regatta, celebrating friends’ weddings, getting nowhere near enough sleep and drinking far too much booze, living as a young, childless couple can. I slowly learned which gluten-free products to avoid and which ones actually tasted pretty good. I baked gluten-free bread (before that was a normal thing to do - we had never even heard of a coronavirus at this point) and I felt my body level out; I felt, for the first time in many years, pretty normal. And so it was that, as that long, hot summer neared its conclusion, I awoke one morning with a shock of realisation. The previous night, I had eaten only broccoli and tuna - a bizarre dinner, but it was all I wanted. I’d had the same for lunch - all I could think about were huge, green florets and tins of flaky fishy goodness. I’d come home from work and passed out for an hour, fully clothed. My boobs were sore. I was very, very hot, all the time. And - by my half-awake, nauseous, frantic calculations - my period was late. Very late, in fact - 3 weeks. I’d stopped tracking it, determined to leave our baby-making days behind, and somewhere in the midst of very intentionally not thinking about it (which, as many of you will know, translates to thinking about it all the bloody time) I had actually stopped thinking about it.

I was due to catch a train into London to begin a 3-day course that morning. I walked through to the bathroom, squeezing my (definitely bigger) boobs, trying to figure out whether what seemed to be so incredibly obvious could really be true; could I be pregnant? We hadn’t been trying - we had been actively not trying, in fact. I’d been drunk - good grief I had been so, so drunk - on several occasions, especially within the last couple of weeks. I wasn’t getting anywhere near enough sleep, having thrown myself into a new job. I scrambled through a couple of drawers and found a cheap pregnancy test strip from a pack of 100 which I had bought off Amazon a year ago. Cursing myself for throwing away the infamous pee cup, I peed all over my hand and the strip, set it on the side, and jumped into the shower. I was in such a rush to catch my 7.03am train into central London that I forgot to look at the strip when I got out of the shower; my brain had fully shut down at this point, overwhelmed with the sheer terror of the situation, and I’d gone into autopilot. Undies on, dress on, find some tights without holes in, hair up. It was only as I reached over the toilet to grab my makeup bag that I glanced down at the strip and - you guessed it - saw two blazing pink lines. No faintness about that second line; it was, if anything, darker than the control strip. That was was a fourth, and a first.

And so it was that our final - and most terrifying - pregnancy came to be. By the time I found out I was nearing 8 weeks, and I was able to book a private reassurance scan within days, where we saw a flickering heartbeat in what looked like a langoustine; fuzzy and strange but very much there on the sonographer’s screen. Despite the 12 (yes, 12) Aperol Spritzes, copious champagne and ill-advised tequila shots I’d downed just the weekend before at a friend’s wedding, despite it all; this was the pregnancy that stuck. It turns out broccoli is high in folic acid, which is what my body needed as it - unbeknownst to me - desperately tried to grow a perfect little spine for our baby. Oily fish is, as we all know, great for most pregnant people - hence my strange tuna obsession - and the strange, comatose naps I’d been taking had been my body’s way of forcing me to slow down as it grew our little miracle. As I write, my wee girl is brushing my hair (which is both excruciatingly painful and excruciatingly cute) having recently turned two years old. She is everything I ever dreamed of, and everything I came so close to pig-headedly persuading myself that I didn’t really want. She is perfect; the result of a thousand little miracles, of things just happening to come together, and other things just happening not to happen this time. But, having spoken with my doctor since, I truly believe that me removing gluten from my diet was a major factor. I know I am one of the lucky ones - to have an answer, and to have been able to so flippantly fall pregnant again without trying. But I curse myself and the medical world every day for the fact that, had I known about the effects that undiagnosed coeliac disease can wreak on fertility, I wouldn’t have had to have endured those three miscarriages. My ignorance and the failure of the multiple specialists I saw to inform me of the fact that me eating gluten could cause such heartbreak is a tough pill to swallow. After falling pregnant with my daughter, I threw myself into researching the links between coeliac disease and fertility. Undiagnosed coeliac disease can lead to poor absorption of some nutrients including folic acid, zinc, iron and selenium. These are all crucial for the development of a healthy baby and for a healthy reproductive life. Coeliac antibodies are produced in untreated coeliac disease, which can negatively impact the viability of early pregnancies. Lower BMIs and hormonal imbalances due to weight loss and systemic inflammation can severely impact fertility. Women diagnosed with coeliac disease aged between 25 and 29 were found to have a 41% higher incidence of infertility than women without coeliac disease, and in those lucky enough to get pregnant, the rates of recurrent miscarriages were higher.

It makes for grim reading, but the good news is that there’s a simple way to stop coeliac disease’s ravaging effects on the body; stop eating gluten. In making that one relatively simple change, I was able to have a full-term pregnancy (albeit one blighted by severe hyperemesis gravidarum, but that was just a bit of bad luck rather than a coeliac thing, and severe anxiety - that’s pregnancy after loss for you) and live a far more comfortable life than I did during my gluten-guzzling days. I know that, again, that’s a privilege; for many with other chronic illnesses, there’s no such quick fix. Indeed, for many, there’s no fix, quick or otherwise. Experts now advise that anyone with unexplained infertility should be offered testing for coeliac disease, as links between the autoimmune condition and infertility and pregnancy loss are ever-growing; and that’s all I want to convey to anyone reading this who suspects they might struggle with gluten. If you get a niggly stomach after a pizza, or a beer, or your morning porridge; if you suffer from mouth ulcers, unexplained fatigue or bloating; it might be worth asking your doctor to run some investigations. I learned the hard way, and I don’t think the trauma of losing our three little people will ever leave me; but I count my blessings every day. Our daughter is worth every dry, crumbly slice of gluten-free bread and every member of restaurant staff that I annoy by asking 17 questions about how their kitchen guards against gluten cross-contamination. And my body and I are back on speaking terms. In fact, I’d go so far as to say I’ve fallen in love with it again. No, it didn’t do what I wanted it to do when I wanted it to do it, but it couldn’t; and I’ve learned to be a lot kinder and more patient with it now. I just had to listen to it. In the end, it gave me everything I ever wanted. I’m never going to be the one with the six pack abs or the most rested looking one in the room; I’m the one with the c-section scar, the stained top, the split ends and the eye bags big enough to carry the entire gluten-free aisle of Tesco, and I wouldn’t have it any other way.