Like many kids, I had a cast iron stomach. I could eat anything without thinking about it, and had a voracious appetite all the way through school and university. And I have always loved food in all its glory.
After leaving uni in the UK, I spent a year travelling around India and Asia, winding up living in Hong Kong for a few months.
My Dad is originally from Bombay, and in India I got to know many of our amazing family for the first time. In particular, a wonderful auntie, Mumtaz, who was a professional cook and cookery writer, and author of several cookbooks.
During that year and on subsequent visits we became close friends and I spent many months staying at her house in Pune sampling all the wonderful dishes she prepared, and talking endlessly about recipes and cooking. That first trip also took me to Japan, Thailand, Nepal and China, and everywhere I sampled the delights of the local cuisines.
A few times I became ill with what is euphemistically known as “Delhi belly” and I twice contracted dysentery where I was really ill and needed strong antibiotics to get better.
Once I got back to the UK, for at least a couple of years, my stomach would have a strange turn a couple of times a week. It just never seemed to settle back down to the way it had been before.
Still, it wasn’t terrible and I was liberally enjoying the huge restaurant, bar and club scene that London has to offer.
Around this time I was becoming increasingly interested in cooking. My Dad had had a triple heart bypass, prompting Mum to transform the way she cooked. Back then fat was the enemy and she turned completely to low fat cooking, becoming a disciple of cookbook writers like Sue Kreitzman and Gwyneth Dover.
As a result, I started to become much more aware of the nutritional value of food and not just its taste, and became an inveterate reader of food labels (something that persists to this day). My Dad, a distinguished surgeon, was always striving to understand more about the way his body reacted to exercise, yoga, meditation and food, and I started to follow in his footsteps, trying to figure out what worked for me.
Hiatus
I settled into what I thought were pretty good eating habits and tried to take as much exercise as I could. I even started delving a bit into yoga and meditation.
Everything worked pretty well for quite a few years, but eventually I started to notice I was bloated a lot. And I mean really bloated - like, pot-belly bloated. Alongside this, I started to carry chewable antacids with me everywhere, and always struggled with very acidic food and drinks. It got so bad that in the end I started seeing doctors and underwent various investigations.
After a gastroscopy, where a camera is inserted down the throat and into the stomach to take a look around (not pleasant), I was diagnosed with a hiatus hernia. Basically, that’s where part of the stomach protrudes through a hole in the muscle that separates chest from abdomen. It means it’s easier for stomach acid to escape into the oesophagus and it’s not an unusual thing, particularly in middle age.
To counter that, and deal with “over-production of stomach acid” I was prescribed Omeprazole, a very common drug to reduce the amount of acid in the stomach.
I also had Helicobacter pylori in my stomach (a bacterium that can infect and irritate the stomach lining), and was prescribed a course of antibiotics to kill it off.
Things settled down and I happily took the Omeprazole daily and was delighted to find I could eat tomatoes again, enjoy spicy food and even the odd glass of champagne with no problems. Amazing!
I also worked out that I didn’t do brilliantly with dairy, so I switched to plant based milk and limited my dairy intake to just a little bit of cheese and yoghurt now and again. Too much pasta or bread also seemed to trigger bloatedness so I tried to keep my gluten consumption to a minimum as well. I still enjoyed food and restaurants hugely.
Acid Attack
Fast forward to 2017, and I had spent a week in Portugal with friends eating lots of rich food and consuming quite a bit of alcohol. I came back and immediately spent another day eating and drinking liberally watching cricket, including lots of dairy, gluten, the lot.
That night I went to bed feeling a bit bloated but relaxed and content after my holiday and lovely cricket day in the sun.
However, I awoke with a start at 3am gasping for breath. I was choking. I mean, I couldn’t breathe AT ALL. Instantly wide awake, I leapt out of bed clutching my throat and staggered around my apartment desperately trying to catch a breath.
I was alone and all I could think about was how long will it take them to find me, how will they get through all the locks and bolts on the front door and oh I wish I’d done that washing up. Strange what goes through your mind when you think you’re about to die. I really did think I was a goner.
After about 30 or 40 seconds I made it to the kitchen and managed to splash water on my face. That seemed to trigger something and finally I was able to take a huge breath. Phew! I was sweating, my heart felt like it would pound out of my chest, all very scary.
I sat down, sipped water and tried to calm my body down. What had just happened? Was it a heart attack? I had no idea. Eventually I crept back to bed and managed to get a little sleep.
The next day I saw my doctor who sent me to A&E to get some tests done. They told me it definitely wasn’t a heart attack, my chest x-ray was clear and that it was probably some sort of spasm related to acid reflux. Really? Acid causing a spasm that nearly killed me?!
Over the next few weeks, I underwent all sorts of tests, including another gastroscopy.
I had a few more similar attacks but none as severe or long lasting as the first one. It was a really strange feeling - my throat would just close up so that I couldn’t breathe. Sometimes at night (scariest of all) but sometimes just going about my day.
For a long time I cut out very acidic foods like juice and anything with tomatoes which seemed to help.
Gradually things settled down and the attacks stopped. By this time I was taking more Omeprazole and two other prescription drugs to keep the acid down in my stomach.
The medical conclusion was that I was suffering from bad acid reflux and that stomach acid was getting into places it shouldn’t - particularly when lying horizontal at night - and causing a spasm in my throat which was blocking my windpipe.
Ehlers What?
After a particularly unpleasant 24 hour test that involves having a tube up your nose and down your throat that is connected to a little machine you wear around your neck (to measure the acid levels in the oesophagus), I was filling in a bunch of questionnaires in the clinic, waiting to have the device removed. They were mostly about what I’d eaten, what activity I’d done etc while wearing the device. But out of the blue one asked, was I double jointed? Could I amaze everyone at school by bending my thumb back? Have I suffered lots of joint injuries? I ticked all of the boxes on that questionnaire and wondered to myself what could all that be about?
A few weeks later I found myself in a gastroenterologist’s office at St Thomas’s Hospital here in London. What on earth, I asked him, were those questions about joint injuries and double jointedness? Ah, he replied, you probably have Ehlers-Danlos syndrome. Say what? He wrote it down for me.
Ehlers-Danlos syndrome (or EDS) turns out to be a group of inherited conditions that affect the body’s connective tissue. They affect different people to varying degrees but a common feature is very loose joints like mine (as a physiotherapist once said to me, laughing, “you have the floppiest feet I’ve ever seen!”) and are often associated with acid reflux problems and a hiatus hernia!
My GP later told me there is not yet a genetic test for the most common hypermobile form but he agreed it seems likely that I have EDS. My dad and sister both also have loose joints and probably have it as well, though my height and general gangly clumsiness has probably made me more susceptible to the many joint injuries I’ve had in the last 20 years.
It kind of explained everything that’s gone wrong with my body in my adult life: two major knee injuries (one of which required keyhole surgery), a broken foot, ligament sprains in both ankles, internal swelling in my shoulder that required steroid injections, the hiatus hernia, the acid reflux choking fits and most recently a ruptured ankle tendon that required a really big surgery.
So finally I was starting to understand a bit more about the things that had been going wrong with my body for years. However, learning how to deal with them is another thing entirely. That’s where part 2 of this story comes in!