Killing me softly: Breaking up with gluten – and waving goodbye to my family

Another weird week of weather and working out what’s wrong with me as my psoriasis, flared despite my best efforts to eat an anti inflammatory diet – fasting and broths – that I almost didn’t notice that bread may have been the main culprit all along. I’ve been low carb so long that I forgot why I started in the first place – and it wasn’t to lose weight, though this is, of course, a fantastic side effect.

After all, bread is cheap and delicious. Gluten creeps back in when you are feeding a family of five, and on high days and holiday – a slice won’t hurt! – what harm can it do when it’s rye topped with avocado (whoops – histamine releasing!), or homemade – or worse, served in a pint glass on a sunny, or a steaming bowl of fresh egg pasta. Well, a lot, if you’re me and suffering from autoimmune disease that probably has at its heart, gut inflammation from years of antibiotics, weird childhood environments (like formula milk and antimicrobials) and sneaky Neanderthal genes that make me fantastic at foraging but less good at sitting still in an office while my life ebbs slowly away.

Luckily, that’s no longer a problem for me as I join the ranks of the long-term unemployed (no sign of a PIP yet!, nor yet a job in the doldrums of Rachel’s Reeves tanking economy) meaning I can host my sister, Katie and her ailments on a weekday, and visit my stepmother, ailing in hospital, on a trajectory resembling the Alpine ski centre in Hemel Hempstead, where once I broke my nose.

Jane, bless her, (just 72) may not have mad cow disease, but in fact a similar condition, Pick’s dementia, where proteins build up in the frontal cortex of the brain, leaving her rapidly degenerating into a shadow world of fear and suspicion and immobility.

I may not have her genes – my own grandfather had ankylosing spondlilysis – but I’m increasingly inclined to believe she was autistic all along, which explains her weird control freakery, hair twiddling, endometriosis and occasional explosive meltdowns.

I love my stepmother, madly, it turns out, now she’s rapidly leaving us – she is already unable to speak and her mind is wandering to another plain of existence. Witnessing her catlike, ears pricked, watchful but wary in her hospital throne, with her incredible bone structure and still thick hair piled up on her head, she strikes me more like a otherwordly queen – part Gladadrial, occasionally Jardis – who was never quite at home in on this planet. I wonder, now, if her partiality to rich tea biscuits and English crumpets may have been part of the problem all along.

After all, gluten’s been implicated in autism presentation since Jonah was young – and he goes to uni on Saturday. But day-to-day, it can be hard to stick to, especially if, in small amounts, it causes no bother.

Over time, however, the gut inflammation builds up, causing autoimmune symptoms (I’ve been chasing a diagnosis for a similar amount of time, finding that a low carb diet and regular GAPS cleanse worked well for me most of the time.

Not so, cometh the menopause – and I haven’t had a period in months, though loads of cramps and monthly moodswings (joy!). My histamine intolerance has ratcheted up as my hormones sink (and yet, I’m all over the HRT) and it feels like I’m intolerant to everything – wine, stress, people in general, my husband.

Anyhoo, after singularly failing to get up on my daughter’s Ava’s 17th birthday, yesterday, following the depressing hospital visit and commiseratory meal of said sausage and kale pasta, I realised, for once and for all, that I have to break up with gluten for good. It’s worse for me than red wine, chocolate, avocado, processed ham (cancer!), workplace stress and unsuitable men. I messaged her at midday to say I was unable to bake a cake or wrap her present which hadn’t arrived.

I feared I was going to fail motherhood on account of my stiff joints, bellyache and swollen eyes, until I was forced by necessity and a boiler problem to scrape myself out of bed in time to head to the shops to buy gluten free flour, whereupon I made a beautiful chocolate cake that everyone agreed tasted nearly as good as a standard one – likely on account of the luxuriant butter and sugar content.

This morning, despite cake and wine, my hives were receding, the oozing cracks behind my ears sealing up. I may never had worse skin in my life, but like every time I make a breakthrough, I am boyed with the sense that this time I have solved #whatthefuckswrongwithme for good.

My fingers are already showing signs of psoriatic arthritis that my father has suffered with for years and I’m keen to avoid the fate of my rheumatic mother (a fully compus mentis 78-year old) who can barely walk a mile with her knees splicing bone on bone. My sister Katie, short in stature, mighty in HR knowhow, is herself, post-surgery to mend her upper digestive tract from the bile that plagued her alongside her collision with long Covid and early menopause some years ago. Now, some three stone lighter, she still suffers with neck problems and itchy skin – both on the list of gluten-driven ailments, but with one AFRID (that’s avoidant food restrictive intake disorder) daughter who eats mainly beige food, an another non binary plagued with sleep problems and depression, giving up gluten is low on her list of priorities, even though it could be the key to solving many of her problems.

As my Jonah packs up to leave home for the first time, there is a little bit of relief inherent in no longer being responsible for his meals (the laundry went two years ago, but he’s never got in the habit of keeping his room tidy )- and situated as he has been, above my head, his late night creakings have been a source of some contention for a while now. I’m happy for him that he leaves home with a bunch of great friends, some real achievements under his belt (none of which include a part time job!) and reasonable mental health, but try as I might to convince him that PB on toast may not be in his long-term interests (for his joint health as much as anything else), I’m afraid my maternal authority has long since gone the way of his high notes. With an older Italian girlfriend now calling the shots (and writing him a recipe book – he’s never shown much interest in cooking!) -and a pragmatic need to spend as little of his student load as possible, I think pasta will remain on the menu for him until he realises its too late to reverse the damage.

So, as I enter this new phase of life, my nest emptying while my elders need increased support, the dough of my vitality will be stretched in new and testing directions. Giving up gluten feels like a fair way to fight my own physical and mental decline so I have more in the tank to give back to my loved ones – and hopefully stop sniping at those closer to home, now they understand my gluten intolerance is no longer optional, but may in fact have been hiding in plain sight all these years – much like my own father’s autism.