Coeliac disease is so painful it’s worse than being in labour

Ali Walsh, 47, lives in Bristol with her husband Tim and their two children, aged six and seven. She first became ill aged 20, but a diagnosis took three years. She now works full-time educating and supporting people with coeliac disease.

The first attack came completely out of nowhere while I was on a university exchange in Texas. Just as I was getting ready for bed, the most agonising stomach pain I’d ever experienced seemed to take over my whole body. I was doubled up, knuckles white, yelling out in agony. This torture made me gasp in shock with each brutal contraction, then followed horrific diarrhoea, me sat on the loo for several hours, praying my flatmates couldn’t hear every undignified noise coming from the bathroom.

It was October 1996 and I was 20, so well used to dealing with bad periods by then. But this was completely different, like menstrual pains – times a hundred. I took ibuprofen and tried a soothing hot water bottle but nothing touched the sides.

Amazingly though, the pain had gone by morning, when whatever it was, had passed through my system. I knew it wasn’t food poisoning, I’d suffered from that before and it came out violently from both ends, this time I hadn’t vomited. But a few weeks later, I suffered a similar episode. And then another.

Hospital dash

By May 1997, it was so bad I had to stumble out of an exam and a friend took me to A&E, or ER as it’s known in the US. There, they suspected a stomach ulcer and advised against eating rich foods.

Despite following their instructions, it kept happening, and I kept going to A&E and having my health insurance contested. I successfully fought not to pay, but it was humiliating.

I carried on with life, going interrailing with friends that summer where, after eating at a Bulgarian fast food joint, I turned physically green. The waitress, in broken English, said, "I don’t think you’re eating dinner now." We later laughed about that, but at the time my worried friends rang for an ambulance and I was wheelchair-ed into hospital. The doctors discharged me with some Smecta salts, a diarrhoea treatment.

Weeks later, while travelling on a train to leave Bulgaria, I spent an hour gripped in agony squatting over a loo consisting of just foot plates and a hole in the ground. Wanting to die, it felt like all of my insides were emptying out.

Wrongly diagnosed

I returned to the UK for my final year at uni desperate for answers.

"But you’ve never had any food or stomach problems before?" said Mum, concerned. I certainly hadn’t, growing up with my two siblings we’d all happily eaten everything. I was neither fussy nor sickly. But now these episodes were happening every couple of days and it wasn’t related to my menstrual cycle.

Being back home meant I could see NHS doctors for free, which I did, repeatedly. One declared I had ovarian cysts, and prescribed the Pill, to stop my ovaries releasing an egg each month. However the Pill’s excess oestrogen can react badly with coeliacs. I became hyperactive with a strange energy, questioning my own sanity. But when I returned to the doctor, insisting these new symptoms had only come recently, he shrugged: "Lots of girls suffer on the Pill." I felt dismissed and threw the pills away.

Then I was misdiagnosed with endometriosis in 1998. I had a laparoscopy operation (where a video camera is used to check your pelvic organs) supposedly to confirm this. All it confirmed was there was no endometriosis. I had no answers, just a small scar instead that made my belly button look odd.

Avoiding going out

I stopped living the life of a normal 20-something and began making excuses not to leave the house. I had boyfriends, but when you’re feeling that low, a night with a hot water bottle and a kilo of chocolate is more appealing than going out.

At 5ft 4ins (167cm) tall, my weight had crept up to ten and a half stone (66kg) through comfort eating. I was only size 12, though technically ‘overweight’ which possibly contributed to my late diagnosis – historically coeliacs were expected to be underweight from malnutrition. Whereas I looked permanently five months’ pregnant, dressed in Empire-line dresses, belted under my boobs to hang loose over my bloated stomach.

After my grandmother died, I moved to Bristol to renovate her old apartment. I tried a different GP there, and after doing my own research asked, "Do you think I have Irritable Bowel Syndrome?" He suggested I try a diet of Weetabix, wholewheat bread for lunch and wholemeal pasta for dinner.

Well, you can imagine how well that gluten-fest went for my bowels: horrific cramps and loo dashes. Luckily, I always made it in time – I know of other coeliacs who don’t and my heart goes out to them – but the 20 minutes of cramping always allowed me enough time to find a toilet. IBS was quickly ruled out.

Another doctor suggested my kidneys were the problem. Mum paid £150 to have them privately scanned. Again, nothing.

"You can’t go on like this Ali," Mum urged me.

Discovering the truth

I started thinking it was just psychosomatic. But finally, in 1999, three years and over 10 doctors after my initial episode, I returned to the surgery. A different doctor on duty (thankfully) immediately said, "This could be coeliac disease."

One in every 100 people has it, yet I’d never heard of it. Many sufferers have 'silent' symptoms, but now I’m actually grateful mine were dramatic because it made me seek answers.

A blood test indeed confirmed my result. Finally, I knew I wasn’t just going mad. I’d waited this long, it was time to take back control of my health.

I read everything, learning that coeliacs aren’t just ‘intolerant’ to gluten, they have a lifelong autoimmune disease caused by a reaction to gluten. Symptoms include diarrhoea, constipation, vomiting, stomach cramps, mouth ulcers and fatigue.

Untreated coeliac disease carries a greater risk of complications including anaemia, osteoporosis, and neurological conditions such as damage to the brain and the surrounding nerves and spinal cord. Although rarely, there’s even an increased risk of small bowel cancer and intestinal lymphoma.

It sounded frightening and there is currently no cure. But there was encouraging news: it can be kept under control by following a gluten-free diet. From that moment I ditched all gluten – and the instantaneous results proved my diagnosis.

Changing my diet

A year later, the doctor put me on a 'gluten challenge' – consuming gluten twice a day for a week – which you have to do before a biopsy, aiming to check if I still had symptoms. Buying 'forbidden foods' (such as cookies and pizza) felt exciting again, but the following bloating, cramps and diarrhoea proved they weren’t worth it and reconfirmed my diagnosis of coeliac disease.

I’ve educated myself on what is safe to eat: fruit, vegetables, fish and meat are fine if ‘clean’. But most processed foods contain gluten. Cooking from scratch still needs care. For example, with shepherd’s pie you can’t use a regular stock cube. Soy sauce and gravy are no-nos, like pearl barley in soups or sauces. But you learn to adapt. I make my own gluten-free bread. Happily, my favourite tipple, whiskey, is fine because of the filtering process.

I’ve lost 20lb (9kg) and weigh around nine stone (57kg). That’s through just better eating, not sharing cake at work or raiding the biscuits. I started running which boosts my mental health and helps ward off osteoporosis. I did the London Marathon in 2023, dressed as a banana (as you do!) fundraising for coeliac disease.

Today, I am absolutely fine unless I’ve ‘been glutened’ as I call it. I married Tim, a computer analyst, 10 years ago, and he’s so supportive he even stores his beer outside to keep the entire kitchen gluten-free.

Managing the condition

We’re very strict about ordering in restaurants. In 2017, when I was pregnant, a restaurant served me the wrong pasta. I was so worried for my unborn daughter I made myself vomit five times. Thankfully, she was fine. I’ve now had two natural births and can say that the pain of coeliac disease for me was worse than labour.

My daughter, now six, and my seven-year-old son have a 10% chance of being coeliac like me. Our home is gluten-free, but they enjoy normal school dinners and children’s party treats with no issue so far.

About once a year there’s a mishap. People either at their home or in restaurants and shops can cross-contaminate accidentally, such as cutting salads with the breadknife, peppering it with crumbs unwittingly.

It’s much easier these days to get diagnosed. There is a simple, 98% accurate blood test your GP can arrange. If that comes back positive, a quick hospital biopsy of your stomach lining is done to be sure.

There is so much more support available. Today, I can honestly say that being diagnosed with coeliac disease has actually made me look and feel healthier than ever.

You can follow Ali's gluten-free lifestyle on her website: Life on a Rice Cake. For more information on coeliac disease, visit Coeliac UK.