My experience of the correlation between food and fatigue/immune conditions (and whether a correlation is relevant in practical terms).

This is rather interesting, at least it is if you are someone, or know someone, who has a fatigue or immune-system-broken condition (ME, CFS, CFSID, Fibro, Behcets, Lupus etc etc).

I started this year on a low-lectin diet. Lectins are the stuff produced by plants to put animals off eating them. They’re poisons, in other words. Some are mild irritants. Some are powerful enough to kill people. Ricin – that stuff used to assassinate the fellow who was stabbed with the umbrella – that’s a lectin, from the castor oil bean. Many beans we think of as quite familiar have to be prepared very carefully, or they’re quite poisonous.

The big culprits as far as lectins go are all grains – everything in the grass family – (yes, including quinoa, oats – ALL GRAINS, yo); the “nightshade family” – which is potatoes, tomatoes, aubergines; and beans. And dairy. Yeah.

What was striking was how successful this diet was. I felt quite different – not cured, certainly, but tons better, and free of the “hellbox” periods I am so accustomed to “normally”. Unfortunately I then got ill for other reasons, and when I’m ill, I have the most desperate need to eat carbohydrates. Carbs means grains. Guess the rest.

I wasn’t sure whether lectins were the problem. The thing is, the low-lectin diet is identical to the low-histamine diet (which to my mind suggests simply that lectins may trigger histamine production, which would make sense, but I’m probably wrong). I did have a problem with histamine, before adopting the diet.

But by dint of excluding the whole grass family from the diet, a low-lectin diet is also gluten-free. So was that really the reason I felt better?

However, it’s worth mentioning that – similar to Esther’s daughter’s story – the other thing that was cut out of my diet at that time was carbohydrates. I had no sugar. Of necessity: most carbs involve grains or beans or nightshades. And chocolate is a bean. *sobs*

I know that when I am well-ish, a very low carb / organic / no grasses or nightshades or beans / simple food lifestyle seems to perpetuate my remaining well, and that – external stressors aside (you know, life events, or catching an illness from someone etc), I can trundle along like that reasonably comfortably. It doesn’t make me WELL. It just reduces my likelihood of plunging into relapse.

Well, over the last few days, having slowly wormed my way out of relapse, I have gone back on my limited diet, and I am already feeling vastly improved. So [INSERT TRITE CONCLUSION].

Actually, I’m not going to draw a conclusion. I am eating this way. I feel better at the moment. There may or may not be a correlation. If I were not already feeling better, I would not be able to eat this way. So it’s almost like: if your health is already trending up, you can adopt habits which will assist you in trending further up. If your health is trending down, you cannot adopt those habits and the tendency is for you to adopt habits which cause you to trend further down.

In both cases, in my experience, the trigger isn’t the diet, but the pre-existing trend.

Even if there IS a correlation between a low carb / no grasses diet and improved health, I know that if something stresses me or if I become ill (getting upset about something, or catching a cold etc), I will go downhill again, and when that happens, I will come off this diet and go back on the carbs, gluten and lectins of sheer necessity. Perhaps if you have someone who can cook (and go out and buy) healthy food for you when you’re trending down, it wouldn’t end in relapse. I wouldn’t know. I do know full well that if you’re ill and having to look after yourself unassisted, there is no choice but carbs, when you can’t stand. That’s just how it goes. Sometimes dried goods are the only food you have left in the house. Sometimes the biggest effort you are capable of is opening a packet of something (ha ha – with scissors – because when you’re in relapse you can’t grip anything), and tipping the packet. But it’s not just about availability: there’s also a powerful biological requirement for carbs during a relapse. My body just can’t process anything more tiring than straight glucose. It wants simple sugars. That is all it wants.

I should perhaps go and get tested to see if I am “Coeliac”. But my experience of the medical profession is so relentlessly pointless that I don’t really see what’s to be gained. If they slap another label on me, what changes? Either I am well enough to provide myself with a decent diet, or I am not. If I am not, the last thing I need is a doctor beefing on at me about what I “should” be doing, when I’m hanging off the cliff face by my fingernails again.

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About chiller

Rachel Coldbreath spent 20 years working internationally as a technical specialist on large data collections for law firms, before becoming disabled. She blogs on a variety of topics from the news and politics to gardening and how very annoying it is, being disabled. Habits include drilling holes about 1mm away from where they ought to be, and embarking with great enthusiasm on tasks for which she is neither physically nor intellectually equipped.
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7 Responses to My experience of the correlation between food and fatigue/immune conditions (and whether a correlation is relevant in practical terms).

  1. You know my story: Grave’s Disease, severe reaction to gluten. Post radio-iodine therapy, with my immune system calmed down I have much less of a reaction, but I still avoid it (though I’m thankfully able to have soy sauce, etc. when dining out now, which is good). Following the radiation though my gut flora got knocked around and I’m no longer good with dairy (esp. cow’s milk). Now I avoid cow’s milk have limited dairy the allergies that plagued me all my life have reduced significantly. I’m not cured, but my body is clearly less stressed.

    I don’t test as coeliac or lactose intolerant. All they could find was “abnormal gut flora” and they slapped on a diagnosis of IBS. Well my B is only I if I eat gluten or too much dairy, so that’s easily avoided. And yes, when I’m “up” I have the energy to cook and eat well, so my food makes me more well. When I’m “down” I’m all about the carbs and keeping myself moving any way I can.

    xoxo

    • chiller says:

      Very similar to me, except I don’t have a readily identifiable / dramatic gluten reaction – it’s just that foods which contain gluten seem to be part of an overall problematic picture that also includes excess sugars and a few other things. None of the things I have a problem with will cause me to suddenly experience OMG FAIL. But they will cause me to go downhill, and in some cases there’s an almost addictive behaviour I associate with them. I have no idea what that’s about. But that it’s a real thing? Yeah. I have to be especially careful to avoid the foods I am most drawn to, basically.

      Mind you, it’s the same way with men. ;)

  2. elaine4queen says:

    yes to the trending up or down.
    interestingly, i think, for instance, chocolate used to be thought of as a migraine trigger. the craving for it is now simply considered to be a sign of impending migraine – part of ‘aura’ like the sparkly lights and the vomiting.
    happily for me, i don’t get the vomiting. but i do recognize what you are saying. when i am more or less well i find it easy to eat whatever my version of ‘clean’ is at the time. when i am on the skids just tuck me up in bed with a potato, thanks.

    • chiller says:

      Hahaha! Yes, your last sentence there is precisely it.

      That’s very interesting, that the craving for chocolate is now recognised as a warning rather than a trigger. It has taken me a few years to really distance myself from that weirdo mindset we’re all brought up with, where what you eat is a moral judgement, an indication of whether or not you have “character” and “strength of will”. In fact, if you have a working body it requires no fucking willpower whatsoever to stick to a good diet. If you have a broken metabolism, dysfunctional gut and poor nutrient absorption, you’re basically trapped inside a machine that is desperately trying to cram in enough expendable energy to stay upright. Willpower has nothing to do with it. If you don’t give your body what it needs, that’s you in the darkened room for the next six months, trying to survive on what you recall of the world.

      My conclusion is: willpower does not exist. All that exists is conditions favourable for making decisions, and conditions unfavourable. Sick people have to learn how to spot the difference. Well people don’t.

      • elaine4queen says:

        i think you are spot on, here.
        so hard to explain to other people.
        (sorry for the disjunction of the previous comment, where i cut and shut the thing about vomiting with further comments, i am, as you might guess, super tired after today’s expedition to the opticians.)

  3. This makes so much sense of a pattern I had half seen out of the corner of my eye but not fully recognised!

    I have a EDS – a connective tissue disorder that brings the fatigue/pain with it – and then all I want to eat to manage to do the things I have to do is to eat ANYTHING SUGARY CARBY RIGHT NOW. I then collapse, too tired to eat my veg. I then spiral downwards, because I’m not eating well enough to keep myself better (I know the grainy things seem to upset my stomach when I’m tired and the sugar creates bad peaks and troughs, but I can’t somehow stop and eat a banana instead because when I’m like that a) my god, how hard are bananas to peel? And b) who wants a banana?), I put on weight which makes the strain on my joints more = more pain = more tired = spiraly crashy burny mess. I also then feel shit about myself because my clothes don’t fit/I’ve got rashes which often kicks off the mental health racket on top – the “urgh, you’re so useless you can’t even eat properly what’s the point” voices – the whole thing is a bloody great slow motion car crash until I somehow I kick off the bottom to start the uptrend again.

    It is so much easier to look after yourself and do the things that help you feel better when you feel well enough to do them. When you feel awful, it is almost impossible. As you say – an uptrend begets an uptrend, and vice versa.

    • chiller says:

      THIS THIS THIS. All of this. Is exactly what happens to me.

      One thing I have found helpful in a crash like that is glucose tablets. You know – the ones you can get from the chemist, made by Lucozade (or other people). I keep a drawer full of them. Glucose tablets are brilliant, because they are nothing like as bad for you as things that contain sugar (glucose is basically just giving your body an accessible form of energy it can use RIGHT NOW); and they don’t trigger the same level of risk of fatty liver. And they DO satisfy that craving, although I have sometimes chomped my way through half a packet. So for a bad day they’re brilliant – though they’re no use when you’re in proper relapse and all you want for a month or two months is carbs. When that happens, you just have to go with it, and hope you’ve learned something new about how to avoid the next relapse.

      However, when you start to get better and want to train yourself back off the carbs again, glucose tabs are brilliant – just use them (decreasingly) instead of sweet things for a few days as you habituate to a no-sugar diet again.

      Oh, and if possible, suck glucose tablets. Don’t chew.

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