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I Am Intolerant…

fodmaps

…Mainly to fodmaps, but increasingly to people making snippy little comments and writing comment pieces in national newspapers about ‘faux’ food intolerances because they aren’t allergies.

These kind of articles are clickbait pure and simple, based round the idea that endless amounts of people are saying they don’t like stuff by calling it an allergy instead, all written by someone who doesn’t know what an allergy is versus an intolerance. Even the good ones like this are designed to make readers sneer.

Here’s the Oxford English Dictionary definition of an allergy: A damaging immune response by the body to a substance, especially a particular food, pollen, fur, or dust, to which it has become hypersensitive.

1.1 informal A strong dislike: their allergy to free enterprise.

And here’s the one for intolerance: Unwillingness to accept views, beliefs, or behaviour that differ from one’s own: a struggle against religious intolerance an intolerance of dissent

1.1 An inability to eat a food or take a drug without adverse effects: young children with lactose intolerance [count noun]: he may have a food intolerance to dairy products

You’ll note that while they have some overlap, they aren’t the same thing. In very general layman’s terms allergies tend to cause immediate reactions such as hives, swelling of the throat and lips and anaphalyxis. Intolerances tend to have delayed reactions such as diarrhoea, nausea, vomiting, bloating, fatigue and joint pain.

People can be born with allergies or develop them as they age. They can also grow out of them as they age as is not uncommon with cow’s milk protein rather than lactose. Intolerances can be inherent like the billions of people who are lactose intolerant or be brought on by other things such as a virus or food poisoning or pregnancy. Both involve the human immune system which is a fiendishly complicated beast that even doctors and scientists barely understand in its complexity.

Medicine is a constantly evolving thing and for example only a decade ago fodmaps had never been heard of even though people were having issues with them. Nut allergies killed children for generations but people thought they had choked on the nuts rather than had anaphylaxis. Babies and children were labelled as ‘failing to thrive’ when they had what we now know as coeliac disease or allergies.

One big problem is that a little bit of information can be incredibly dangerous and leads to the cult of the Deliciously Ella style wellness bloggers attributing everything to gluten and woo. These people are actively detrimental when they suggest cashew nuts and avocados can cure cancer and I have no time for them at all.

But other people suffer from the too little information, too many opinions issue too and that’s the ones who read or write these clickbait articles and don’t actually read about about the subject beyond fleshing out an anecdote akin to the episode of Sex and the City where Carrie said she was allergic to parsley when she just didn’t like it. They never seem to speak to people with intolerances or learn about the complexities of living with them.

I first approached my GP about food making me sick and fatigued in 1992. That was the year that I developed chronic nausea. I haven’t had a day when I don’t feel sick at least some of the time since. That was also the year when I developed another period of mysterious fatigue attributed to glandular fever and missed an entire term of school.

I was told for the next four years despite missing more school than I attended, losing almost three stone in weight, vomiting and passing blood, regularly experiencing pain bad enough to black out and having my hair fall out, that it was all in my head.

A lot of it was explained by gallstones and the removal of my gallbladder. I stopped vomiting blood at least but eating was still like culinary Russian Roulette. I could find no rhyme or reason to why I constantly felt so ill and had diarrhoea so badly I had to be rehydrated on a drip on more than one occasion.

I saw doctors and and gastroenterologists and dieticians. It was complicated further by having a diagnosis of ME/Chronic Fatigue Syndrome. This is an illness with a tortured identity. Many doctors (and journalists) don’t believe it exists. It was known once as ‘yuppie flu’ and the NHS regards it as ‘psychosomatic’ at best and ‘malingering due to psychological issues’ at worst.

In the UK, 250,000 people have it (four times the number of MS sufferers) and is now believed to be an neuro-immune illness equal in severity to HIV and Parkinson’s. The only drug treatment to have had success so far is a drug also used for cancer patients . It affects more women than men and is heavily stigmatised with sufferers literally being told it is all in their head. In the UK, the only ‘treatment‘ is Graded Exercise Therapy and Cognitive Behavioural Therapy to challenge negative beliefs about your health.

I was 10 when I got it and went from running around everywhere to being bedbound. Quite the trick to keep up as a kid and then for another 27 years. It took me 25 years to get pain relief for the muscle pain that characterises the illness (the myalgia of the name and not unlike it’s close cousin fibromyalgia) because the disease is treated by psychiatrists in the UK, not neurologists.

Imagine then how difficult it was to get a roomful of shrinks and GPs who’ve only heard of ME as a made up attention seeking thing shrill women have to take my food issues seriously. (Food issues that also mutated into an eating disorder because I was so frightened of eating.) And that’s before you encounter the NHS issue of seeing each symptom separately in chronic conditions so joint pain isn’t connected to nausea.

It was quite literally the 15th gastroenterologist and 16 years after my gallbladder removal I saw who mentioned fodmaps and yes, I thought he was crazy when he said it might down to garlic and onions. It seemed like bullshit and wishful thinking. And then I did the exclusion diet with an NHS dietician and my life was transformed.

Not simplified though. On top of the fodmaps, I’m fructose malabsorbing (a fancy term for fructose intolerance) and my gut flora is destroyed by complications of the gallbladder surgery. I probably have ‘leaky gut syndrome‘ but the NHS doesn’t believe in it. I’m also having liver, pancreas and small bowel issues investigated.

It’s complicated and distressing and incredibly boring. It feels like 90% of my conversation revolves around my bowels and my diet. It feels like 110% of my inner thoughts revolves round my guts and my dinner. I have spent the last 6 weeks being so strict on avoiding my trigger foods that I thought I could cheat and eat some crab in garlic butter the other night and was thrilled to see that I didn’t even feel bloated. A refreshing change after the surprise dried onion in a burger one night that made me literally shit myself.

Except that the morning after the (amazing) garlic crab my joints were so swollen and tender I couldn’t get out of bed without crying and needing painkillers strong enough to be classed as a controlled narcotic. I still felt fatigued and shaky the next day. No more garlic butter for me clearly. You live and learn the hard way.

I know not everyone who has intolerances to fodmaps (one of which is wheat by the way) or lactose reacts that badly. I’m unlucky in that respect. But we also live in a society that sees illness as weakness and always viewed as something to be ‘cured’ not chronic. Auto-immune diseases such as ME/fibro/lupus and things like Ehlers-Danlos Syndrome are more prevalent now because modern medicine ironically makes us well enough to have chronic illness.

Nearly all these illnesses include gut issues such as food intolerances but are essentially invisible so they confuse healthy people because there might not be a crutch or wheelchair to indicate disability and they aren’t as easy to explain as say, a stroke. They fluctuate and they take a long time to be diagnosed and even then little is known about them and there’s little biomedical research happening. My practice nurse at the GP who gave me a flu jab this week had never heard of ME/CFS for example so I don’t expect the general public to be experts.

Sadly this ignorance doesn’t stop people who can’t even spell ME offering (often well meaning) advice when you mention it. Rest assured I have thought of trying yoga in the last quarter of a century, but unfortunately it doesn’t have magical abilities. If I had more energy I’d find it grimly amusing that people who insist that those food intolerances don’t exist, believe yoga and pilates and green juice can cure a disease that can be seen as altered spinal fluid in lumbar punctures.

But it’s exhausting dealing with all that repeatedly when I just want to order an appetiser. I appreciate genuine questions and thoughtfulness about my health more than I can tell you. But I want to talk about nice things over lunch. I don’t want to be forced tell a waiter or a friend of a friend about private, intimate, embarrassing, distressing things (that’s why I have a blog after all) just to choose soup or a salad.

Sometimes when people start to argue with you over what you can eat, you just want the whole subject to go away and you say you’re allergic to garlic because you cannot face this battle again. Allergy is a magic word that people don’t argue with and if like me you sobbed this morning while eating an egg because you are grieving all the foods you will never eat again, you need to avoid drama to survive with your sanity intact.

I do feel guilty about abusing the word allergy but when the option is argument, embarrassment, opiates or incontinence, then I can’t beat myself up too hard. The thing is that you can’t tell why someone is using the word without interrogating them.

They may call an intolerance an allergy to feel listened to after years of being ignored. They might tell you they are avoiding gluten or wheat because the Kardashians are doing it because that’s less shameful for most women than talking about their bowel movements. They may not know exactly what is causing their health issues and be in the reintroduction stage of an exclusion diet which is why they ate cake, not garlic bread. Or they are worried people will think they are a Kardashian loving airhead if they mention a dietary issue that’s actually causing great distress so they head the criticism off first self knowingly. Or maybe it’s a first date and not great timing to mention gassiness…

They might be feeling the peer pressure to order dessert because women are socialised to eat together to assuage guilt. They might be feeling left out because food is sociable. They might because of a lack of education or a brainfart, not realise the dish contains the thing they are avoiding. They may be having difficulty coming to terms with not being able to eat freely and sabotaging their diet. They may not really know the difference between an allergy and an intolerance themselves. They might just be tempted to see if they can cheat. They might not know what lengths a kitchen has to go to over allergies. Or they might just be human and thus illogical and imperfect and inexplicable. It’s very easy to expect perfection in someone else’s diet rather than our own.

We have a responsibility as decent human beings not make anyone else’s life harder. So if I lie and say I’m allergic to peppers when I just hate them, I’m harming other people. But if you insist on a full medical history and a quasi legal case as to why they ate X and not Y and sharing those clickbait articles then you are probably making a sick person’s life harder. If the person chooses to share their details with you that’s different but wait to be invited first.

I’m sure everyone is now going to rush to tell me about all the food related pisstakers they know, but in my experience it’s like claiming benefits. Bring up the subject and everyone knows someone their aunt’s friend’s co worker lives next door who is a benefit cheat. Yet the official figures don’t back it up and when pushed they’ve never actually met one for sure themselves because laypeople aren’t privy to medical details and have to go on a certain amount of trust instead…

 

 

 

Fodmap Friendly Chicken Liver Pate

pateA recent health glitch involving the gallbladder I had removed when I was 18 means I’ve been stuck in the house recuperating for the last week or so. In between Googling to see if I need to see a gastroenterologist or an exorcist, I’ve almost been enjoying being round the house so much. The last few months have been a whirlwind of activity and it’s oddly comforting to have the chance to start doing more cooking than I’ve managed recently.

Coinciding with the weather becoming distinctly autumnal, the slow cooker has come back into action for more than just a whole chicken or a shoulder of pork and I’ve been enjoying de-fodmapping recipes from Slow Cooked and rediscovering some old favourites. I’ve also been meal planning again rather just eating variations of meat, rice and spinach for dinner every night in a fodmap inspired food funk.

I’ve managed to roast a chicken, make soup from it and whip up a batch of ragu that filled the freezer and made some Tuesday night cannelloni so far in the slow cooker. I felt extremely organised in between naps until I realised I’d managed to forget to put the chicken livers I’d defrosted into the ragu…

Armed with a tub of previously frozen offal and the memory of having to chuck a bag of mince in the bin the previous week because I’d been too ill to eat it, I couldn’t bring myself to throw more food out and my mind turned to pate.

I love love love pate. One of my great comfort foods has always been pate on toast. It’s a thing of joy to have a good pate filled with duck or chicken livers whether you go for rugged and chunky or smooth as silk. I even like the ones of more dubious provenance piled inch thick on toasted cheap white bread. Pate is my jam.

Except that all pate one can buy contains alliums. It’s a festival of shallots/garlic/onions/delete as applicable and thus out of the reach of my sticky little paws now. Even my own slow cooker version uses shallot. And just to add annoyance, there is often dried fruit too. I needed to adapt it but not lose flavour.

I decided to go creative and try to use up leftovers. A half drunk bottle of red wine went over the chicken livers to marinate them and depth. Since I’m supposed to watching my fat intake so as not stress my gallbladder area out and I’m not up to going out to buy double cream, I roasted some pumpkin with caraway seeds and fresh thyme to use instead. I browned some butter and fried the livers lightly in it.

Everything got blitzed together with a splash of brandy and it all went into the slow cooker in ramekins. Once cooked and cooled, I covered the tops of the ramekins with clarified butter and froze the ramekins inside a bag. Each one takes about an hour to defrost so I can have no fuss, low energy allium free lunches with ease and extra smugness.

Fodmap Friendly Chicken Liver Pate (serves 4)

  • 250g chicken livers
  • 100ml red wine
  • 100g pumpkin (or sweet potato if not sensitive)
  • 150g butter (see below for instructions)
  • 1 tablespoon caraway seeds
  • 4 sprigs fresh thyme
  • salt and pepper to taste
  • 1 tablespoon brandy or red wine
  • dash lemon juice

Whether your chicken livers are fresh or frozen, it’s best to gently rinse them and remove any discoloured patches. Then carefully remove the gallbladders that are attached. These make the pate bitter otherwise. The irony of doing this to a chicken while my body was reacting to someone doing it to me was not lost on me. At least they gave me the good drugs at the same time.

Put the chicken livers in a non metallic bowl and put the red wine over them. Marinate for at least an hour or preferably overnight. This is the one time it’s appropriate to soak your liver in red wine.

While the livers do their thing, roast your pumpkin (or sweet potato or butternut squash if non fodmapping). I buy wedges of pumpkin in Brixton market and roast them chopped into chunks with the skin still on and then peel it off when it cooked.

You’re going to go through the cooking life cycle of butter next. Put all 150g in the pan, chopped into small cubes and melt it gently. Simmer it until it starts to foam and reduce and when the foaming dies down and it stops moving, pour half the butter through a sieve that you’ve lined with some muslin or a clean cloth into a bowl. The clear butter you collect is your clarified butter. Set aside until needed.

Then brown the remaining butter. Keep stirring it over a slightly higher heat and let it heat until the butter foams furiously again and turns brown and smells nutty but not burned. Watch it closely and take it off the heat at this point, pouring it into a clean bowl to cool slightly. You need to do this even though you’re going to cook in it because otherwise it will burn when you heat it again.

Heat the browned butter in a frying pan on a medium heat and when it bubbles slightly, add the chicken livers and the fresh thyme and caraway seeds. Keeping the livers moving the whole time, cook it all for 2 minutes. It’s fine if they are still pink in the middle.

Take the pan off the heat and tip the contents into a large bowl along with the cooking juices, add the pumpkin and lemon juice and with a handblender, blitz it all until it is smooth and silky looking. Add the splash of brandy and put into ramekins.

Set these in the slow cooker crock and fill it halfway with boiling water and put the lid on and cook on low for 2 hours. Or set them into a roasting tin, fill halfway with water and bake in the oven at 140℃ for 45 minutes. Either way when cooked, lift out of the water and allow them to cool.

Pour enough of your clarified butter over each cooled ramekin of pate to cover the surface well. You may need to melt it again first. You don’t want it an inch thick but enough to be noticeable. Allow it to cool and thicken. Pop the ramekins of pate in a freezer bag and seal. Freeze for up to 3 months or eat the pate from the fridge within 3 days.

I was delighted that I froze three quarters of my pate because when I started eating it in front of Don’t Tell The Bride that evening, it was so beautifully smooth and delicious I could have worked my way through the whole lot in one sitting. This way I got to feel smug that I was pacing myself and lying in bed eating pate instead of letting a man organise me a wedding I would hate. What a perfect evening.