Please indulge me; this autobiographical tome has been a long time coming. It’s self-centred, as it’s about me, about my life, my family, my career. It may strike you as indulgent and self-obsessed and I apologise, but what it isn’t is a niche piece for diagnosed and undiagnosed coeliacs.
Hopefully humour and personality will shine through, even in its darker moments and there’s a few of those along the way.
Let me start then with the opening gambit, explaining what gluten is, what a food allergy has done to me for 51 years of my life.
Gluten is the protein found in wheat, rye, barley and oats (when they’re cross contaminated). Gluten free oats are free from gluten obviously but contain Avenin, a similar toxin, which some diagnosed coeliacs can tolerate, others can’t.
I’ll leave oats for the minute though and tell you about gluten.
Julius Caesar and Aristotle allegedly suffered from eating gluten – so it has a long history. It only came to prominence though in World War 2, when bread was rationed, and in Holland a connection was made between improving gastric conditions of children and gluten, once bread was eliminated from a daily diet.
Speaking in broad terms, it’s the glue that holds grains together – hence why gluten free products often fall apart – without this Pritt Stick protein.
This innocuous sticky protein though is a major allergen around the world – 1 in 100 just in the UK suffer from coeliac disease yet only a tenth (1 in 1000) are medically diagnosed.
I’ll come on to diagnosis later in chapter 9 but now I’ll focus my memory on birth and early childhood.
I don’t remember my birth – who does from those heady hippy days of the mid 60s before selfies, Instagram and Snapchat. A polaroid self-developing camera was seen as avant garde back in the day and I don’t think we owned one.
I was born into a solid working class family in Doncaster, South Yorkshire, born at home I think at a healthy weight of 9 and a half pounds so the theory of gluten ingestion as a foetus did not impact I recall on my weight – though it did with our daughter.
Born as the middle of what would become three children: older brother, younger sister.
I wasn’t breast-fed – I have no visions of my mother’s mammaries in my subconscious. I’ve spent most of my life since sucking on bottles however – but that’s a story for later.
Childhood to five was pretty uneventful.
I recall being an avid reader, with zero energy.
Lying on the bed, sofa, tucked into an Enid Blyton tale of childhood sexism and casual racism, was my Utopia. I had no desire ever to leave the comfort of books behind to kick a ball around with my older brother, or play outside.
It was the inertia that came from eating gluten daily.
Bit more science here at this point.
Those allergic to gluten see ingestion of said protein as an assault on the villi. Villi are the microscopic hair-like projections that line the intestines and absorb nutrients from food.
Except, when allergic to gluten, they flatten and go into hiding, leaving the body listless and the bread roll abandoned, causing gut rot and pain for the villi’s owner.
My diet was fairly typical from 1965 to 1970. It wasn’t carb rich, gluten loaded, it was balanced and quite healthy.
But I failed to develop physically in those formative years.
I remember my mum being so concerned about my skeletal frame and non-existent zest for life that she approached a doctor about me.
You see, I consciously rejected gluten from birth.
Beans on toast saw me eat the beans, but not the toast.
Fish fingers led me to peeling the breadcrumbed batter away.
A ham sandwich resulted in the ham being eaten but not the bread.
You get the idea.
As a result, I have a photo from Green Top first school, which was posted to me by a class mate on Facebook and my physique with stick insect legs and arms caused much recent merriment. I was easy to spot and easy to carry. I was all skin and bones. The villi, you see, were flat, leaving me with no fat, no muscle tissue, just a taut frame.
Sad looking back.
As are all my photos until 2002.
I remember distinctly the walk from the classrooms down to the primary canteen where 8 sat around a “server” who’d dish out the two courses and pour the metallic water from the steel jug into the Duralex glasses, which we tipped over before filling to “check our ages”.
The server, the dinner ladies, the teachers, knew little about food allergies and I compliantly ate everything without question as it was expected and I did as I was told at school.
Again, Physical Education or Games, perturbed me in reception and year one.
Physical movement, hand – eye coordination was not something I was capable and it immediately marked me out as odd as playing out, playing sports, was the norm in 1970, when there was little else to do, at school or at home.
One memory does resonate though.
My mum worked flexibly, seasonally on the land, and with a door-to-door credit company.
My dad spent all his working life at International Harvester / Case tractors in Doncaster.
I remember distinctly being left in the care of my older brother for 5 minutes whilst my mum “popped out” to ring my dad from a neighbour’s phone, leaving a sixpence with me and my brother, for ice-cream, should the van turn up.
I think she was pregnant with my sister.
Anyway, the ice cream van did a no show, so I did a very natural thing – I swallowed the coin. It was gluten free, so no big deal I thought.
I’m still not sure why I did this, at the age of four, but I did.
The upshot was I was taken to the doctor’s – these were the days when you could show up and not spend 90 minutes ringing from 8 am praying that the line is not engaged. The doctor was as non-plussed as everyone else, but prescribed an action plan.
Get him on a potty.
So I had to excrete in a potty to add to the ignominy of being a stick insect child with no energy, whilst my mother went through the motions.
It was sloppy. I remember that clearly. The sixpence when it had worked through my system, came out blackened from its intestinal trek.
My mother still has that blackened coin to this day – but we’ve been estranged so long now, I can’t show and tell with it.