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…

 

 

 

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6 replies
  1. lesleygcooper
    lesleygcooper says:

    Wow, powerful piece. My brother is coeliac, my daughter allergic to mushrooms and we are all sensitive to caffeine in various ways and degrees, so I know a little about the issues. Daughter is currently having lots of reactions to we don’t know what yet, so interesting times ahead.

    I too get peed off with people saying they are allergic to wheat or whatever when they are following a fashion. It was bad enough when I was vegetarian for many years having to justify and explain every time we ate out

    It sounds like a flipping horrible thing to live with, I thought being coeliac was bad enough, this sounds even more restricting. I would hate to be so involuntarily dietarily restricted, as it sounds like you do. I had never heard of fodmaps until you started talking about it. It’s such a broad area of food affected, I wonder if lots of people have it mildly (is that even possible?) and often feel unwell without knowing why

  2. Kavey
    Kavey says:

    To be so honest, so open, so searingly blunt about your experiences, I applaud you. I lie and obfuscate about several of my health issues because, as you have recognised, sometimes it’s hard even to share with friends let alone have to explain yourself to strangers, acquaintances or colleagues. It doesn’t help that health professionals are so keen to dismiss as a psychological issues even when it must surely be obvious that just can’t be the case. I’m going to try and be more mindful and sensitive to the fact that others may have very good reasons to simplify and use the word allergy or intolerance rather than share what they don’t wish to share. P.s. Fancy Korean (or anything that suits better) soon?

  3. Janice
    Janice says:

    Thnks for the enlightening information. I have friends with ME, none of whom could be described as malingerers, it makes me angry that where diseases are predominantly female they are seen as psychological. I wish you well on your limited diet and hope it brings you relief from pain.

  4. HedgeComber
    HedgeComber says:

    I hear you, especially on the whole being bored to death of thinking, analysing and explaining everything that happens to and because of my gut.
    I especially hate being ‘that person’ when eating out and having to question every dish I order. To be able to walk into a restaurant and just pick something I fancy eating would be so novel 🙂
    Janie x

  5. misspiggy
    misspiggy says:

    I have to admit I used to pooh-pooh people with allergies and intolerances, because didn’t everyone spend hours doubled over on the loo when they ate certain foods, or vomit when they ate other things? When more people started talking about how they avoid certain things because of x reaction, I had a bit of an enlightenment moment and started managing my diet a bit better. So the more discussion of these issues the merrier, in my view.

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