Life As A Multiple Intolerant: Not As You Know It!

Allergy image for websiteA comment from our friend Michelle at Foodsmatter on this blog post the other day got me thinking about just what our daily life is like as severely multiple intolerants. At the same time I was thinking about that, I noticed a thread on the FB groups about how difficult it is to explain to family and friends how you feel and that you are not just being picky! Now, I know Michelle and many people do ‘get it’ but only someone who has really experienced it will truly understand the way your brain works about food!

I normally keep it to myself just how hard this can be but actually thought this time it might be useful to give you a flavour (pun intended) of the life of a multiple intolerant.

Food is like Sex…

One of Michelle’s comments was that food is such a small part of life, like sex is. I hooted at that. For one thing, I don’t know about you, but I don’t need sex at least 3 times a day or even every hour or so in the same way as I need food! Blimey. I’d never be vertical! A multiple intolerant is ALWAYS hungry! It never lets up. You can keep sex, thanks; I’d rather have a bagel. I SO wish 😉

Hunger is a primal feeling that we have absolutely no control over really. It’s a survival instinct in much the same way as our needs for shelter and love are all-consuming and must be met. Any hint of those primal needs not being met causes massive anxiety, not just at a conscious level but at a deep, subconscious level and in the central nervous system. When the brain isn’t getting enough glucose, it makes you hungry. When someone isn’t getting enough nutrients from food – and they may be eating loads but not absorbing much, remember – the brain will just create hunger the whole time. If you then don’t have snacks or many foods to turn to, you constantly worry about where the next ‘hit’ is coming from, and what it will do to you if you have it.

The same goes for thirst, of course. It’s a primal need. We can’t survive without water. One of my most fearful moments, in fact, was realising that I was reacting to not just tap water, but my reverse osmosis-filtered water! A whole other story, actually, because this started the light-bulb moment that my brain was doing the reacting rather than my body or immune system because physiologically it is pretty impossible to react to RO water; it is so pure.

We all tell ourselves that, logically, food shoudn’t be so important; as Michelle says as long as we have enough to keep alive, that’s all we really need. But food is MUCH more than that isn’t it?

P and I often think about Quentin Crisp who only ate Complan, and then later peanuts and champagne meals because he was too busy to do otherwise:

Quentin Crisp  His diet consisted of the low-cost food substitute Complan. He didn’t eat food because he couldn’t be bothered with shopping or cooking. “I don’t get involved with shops,” he said, and washing up was just “nonsense” – “you’ll only have to do it tomorrow, why bother?” After he became famous and moved to New York in his later life, he switched to a diet of peanuts and champagne, which were both readily available at the functions he attended. “If you can cope with peanuts and champagne, you never need to shop again,” he believed. Source.

I so wish I could do that. However, quite apart from all the social and cultural elements of eating that people normally write about – the way food evokes memories and emotions like nothing else – a multiple intolerant will simply worry about becoming intolerant to it because they are eating too much of the same thing. One of our biggest worries is trying not to eat the same things all the time so that the body doesn’t become sensitive to those foods too, leaving us with even less to live on.

When you only have relatively few foods (less than 20 in many cases), you worry constantly about losing them. About what will happen if you lost your only carb or protein, couldn’t consume enough calories or were forced to continue eating the foods despite symptoms because you would die otherwise. It sounds dramatic, but, trust me, it is a very real worry for some multiple intolerants like me.

I know many of us who have had dramatic weight loss – I have gone from a 14 to an 8 and am still losing, despite eating every hour or so and as much as I can. Wild fish with some fruit and veg is just not that filling or calorific. You have to eat huge amounts. I know others who are below a size 6.

I know still more who are so malnourished because they haven’t enough foods to eat and can’t tolerate meal replacements, meds or supplements to sustain them – they then not only have to cope with the diet constraints but also suffer fatigue, pain, neurological etc symptoms even though they follow such a restricted diet. These are the very real consequences of malnutrition: systems, organs and glands just don’t work that well so we get adrenally-shattered, our thyroid nose-dives, inflammation levels rise, autoimmune processes get triggered, guts complain, yada, yada, yada.

It becomes a double whammy – nutrient deficiency symptoms overlaying reactivity symptoms – plus a boring, very restricted diet, constant hunger, never-ending anxiety about the symptoms and future food loss, social isolation and lack of real medical and often emotional support to cope with. That is the real life of a severe multiple intolerant!

Every time they put something in their mouths, they worry what the consequences will be. Will it be the same symptom as last time, will it be better, will it be worse? There is the anxiety of knowing you have to eat this food to survive but that it will make you ill plus the anxiety of not knowing how bad the symptom will be this time: will this be the time it really gets bad so you have to let go of this food? It’s a fear-filled process.

Social Pariahs

Most multiple intolerants, and even some ‘simple’ intolerants (1-3 foods in my book!), just don’t go out to eat at restaurants – especially not at restaurants! – and avoid family and friends’ houses too. The recent allergy catering laws might help with that but the vast majority still won’t risk it. This has an enormous impact on quality of life. As I said in my previous post, life becomes ever-smaller as you just stay in and try not to make anyone else’s life feel awkward.

First, you just get sick of explaining the problem and knowing that people don’t understand it. Second, people feel awkward around you as they tuck into wheat and dairy-laden goodies; it makes them feel guilty that they are not maybe looking after themselves as well as they might but also guilty they can have it or simply sorry for you that you have to sit there and watch them eat or drink it. Some of us, of course, are desperate to join in and go against our better nature’s to be part of things. Here is one comment from many on the TGF FB group, for example, to illustrate the point:

“I hate it when family ask me out for a meal. My husband comes from a very large family who enjoy nothing more than a big get together with a meal as often as they can. If I don’t go, I feel I am being unsociable, but if I do go, then I really suffer. In fact, the last one I went to, I thought I was going to have to go to hospital,…It lasted 9 hours all through the night, so I didn’t get any sleep either. I haven’t been for a meal since then, but have another one lined up in July. To say I am dreading it is understatement..”

In fact, whilst I’m on this point, I really like the way people are getting the support they need on the FB groups – people who ‘get it’ are very helpful. Here’s a comment from the same thread:

“You guys give me strength to feel able to say no to eating things just to make other people happy. If they really understood, they wouldn’t want me to be that ill. Since they often don’t, I just have to care for myself and say no, whatever the looks are that I get from others.

I hope they don’t mind me sharing their (made anonymous) comments! But. I think they make the point here better than I could.

Anyway, to summarise: this is so not about being bored with the same diet or being sad about missing out – not that those aren’t ever-present too; it’s just that the other fears are even worse. Most of us would love not to think about food so much but we are programmed to as we get so hungry so have no control over it. Most of us would be delighted to have an albeit low number of safe foods we could stick to – but we live with the constant anxiety of losing some of those foods if we eat them too much. Put the hunger and that fear of eating foods too often together and you have a tiny inkling of our fear-filled life. It’s no wonder that we get stuck in a fearful vicious cycle.

My last post was, of course, about recognising this fear and the hold it has on us, about trying to let it go and teach the body that things are not as unsafe as our brains are making us feel they are. I know this is a real toughie. I get it, I am a 20 foods person. But, I resolve not to let this fear control me and, as Michelle agrees, make a switch in focus to other stuff that is safe to try and teach my errant brain and body that life – and food – can be safe again for us. I SO hope so.

Anyway, I could witter on and tell you loads more but I am trying not to focus on the fear and food as you know. I just wanted to pen that really quickly as it was on my mind. I hope it helps someone. Don’t forget to read the Healing Series if this sounds like your life – I hope not!

8 Replies to “Life As A Multiple Intolerant: Not As You Know It!”

  1. Hmmm well I have a few things to mention on this one and you got me screaming in the first few para’s. First of all food is a MASSIVE part of my life for all the reasons you mention above and others. I could easily get an eating disorder because when I react to a food my body actually loses hunger. I actually feel sick at the thought of eating sometimes, because my body doesn’t trust me any more. It thinks I’m a dumb ass who can’t even learn to fee itself so it tries to stop me feeding any more of what it doesn’t want. I can go a whole day not feeling hungry. I have to FORCE myself to eat. And I also LOVE food. It is a HUGE part of my life. I love eating it, cooking it for me and others, I love finding new foods I can eat and eating out with friends (when I plan it carefully).

    The other point, sex is a small part of your life. I’m not sure I agree with that either but that might just be me. My hormones or something. It’s a really important part of life I think, another primal urge. And I hate bagels – I’d much rather sex than a bagel 😛

    But to your other points yes, yes, yes, yes. (sorry that came out all When Harry Met Sally) – it’s all so much in the mind. I have dealt with some pretty major stuff lately, stuff that was messing with my mind, deep stuff and my food issues have improved massively. Not the allergies but the intolerances, the underlying IBS which plagues me. It’s not gone, but my skin is healthier, my mind is happier, my asthma is better, I feel so much better. The mind takes some beating but if you can get on top of these internal issues it’s so important. Great blog post Micki.

    1. Yay, I am so glad Ruth that you are on the up then and that you resonated with some of this. I typed it so fast I noticed the second quote had gone missing so I’ve just added that back in! And just to be clear: I’d rather have sex and a bagel, lol! Not at the same time, although…

      1. I just was thinking about your comment about loss of hunger too, Ruth. Very interesting; I hadn’t thought of that because I get starving hungry! Good point. I bet loads of you get that. I wonder how many people do actually get eating disorders or issues related to that because either of a reaction loss of hunger or sheer fear of putting stuff in our mouths. Must be a lot I would think. Is it a control thing in some cases, even; I wouldn’t be surprised.

  2. From CA on FB group:

    “Very good! One other thing I would just like to add, is that most of us here, at least, have to make our own food. A lot of the time we have to order in supplies & seek out things. We then have to cook, so if we get hungry & tired, it is difficult to then raise the energy to cook something. The other day I made a batch of sugar free, grain-free flour cakes & was so hungry that I could quite easily have eaten them all up there & then, but I knew that if I did that, I would then have to turn round & cook more, so I have to restrict myself, as I don’t have the energy to keep cooking all the while. I feel that the energy I gain from eating the food all goes straight back into cooking & preparing the food! I can’t just go & buy a takeaway if I feel too tired to cook or go and buy some sandwiches from the supermarket like other people do. We have to constantly think about food, to make sure that what we are eating won’t make us feel ill, so food does play a VERY important part in our lives. I seem to spend all my time looking for new recipe ideas, ordering in new supplies, cooking & eating. I eat loads but seem to still lose weight & have no energy. This life is very different from a lot of peoples these days who tend to eat on the run (I can’t even raise the energy to run, let alone eat on the run!!!)

    I have to plan meals in advance to make sure the FODMAPS are not too high, the histamine is not too high, the oxalates or salicylates are not too high, the sulfur is not too high (as I don’t do well with sulfur) & that no intolerant foods are included. It’s a full time job!

  3. I really deserved that – and I am sorry!! Although possibly not quite as sorry as I should be because it also provoked you into that post!!! (which I will now blog about….)

    But although the sex/food analogy was just a touch off the mark…… I do still have a little wonder (as someone who has never had to cope with this so know I am sticking my neck out further than a giraffe….) whether ‘diverting’ the fear may not be as, if not more, important than actually dealing with the food issues…….

    And before you shout at me again…. I have worked with – and supported for some years – someone with maxi anxiety/OCD so I do know how totally and completely irrationally consuming such fears/concerns can become….. I just wasn’t at that moment connecting it with food!


    Michelle Berriedale-Johnson

    Director: FreeFrom Awards Editor: FreeFrom Matters sites

    5 Lawn Road, London NW3 2XS Tel: 020 7722 2866

    1. Oh ha ha, I hope it didn’t come across as me being angry with you (I’m not!), I was amused actually but had been thinking of writing about it anyway; you just sparked me into it. Re the diversion thing, I am with you there. I have shifted massively from biochemically trying to solve the physiological problem to now addressing what I believe is a probable psychological issue at least at some levels. Not sure which comes first and not sure if it really matters; all I do know is that the mind is far more powerful than we give it credit for so if we can use that to help us heal, that would be fab too.

  4. From J: Spot on with how we can be feeling. Very good. I’m getting my husband to read it. He’s the most understanding though, only cos he’s the one that lives with me. X

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