One of the weirdest and most frustrating aspects of this whole nasty adventure for me is the area of food intolerance.
I have been dealing with ME/CFS for more than eighteen years now, though it was not until the third year that my food intolerances really kicked in. And it began in kind of a strange way.
I was dealing with a relapse, it was probably the year 2001, I was struggling. I got a cold which I could not shift. Someone suggested that dairy products can contribute to the formation of mucus, at that time I had wheezing and a heavy cough that I could not seem to recover from.
I was eating normally at that stage, dairy, wheat, gluten, the usual stuff of a European diet. I gave up dairy for a month, went on to soya milk and margarine. It didn’t really help my chest, so I started eating cheese and milk again.
Within a day or two I noticed some bad stomach symptoms, diarrhoea or constipation, cramps, bloating. I eased off on the dairy, and the stomach symptoms improved. I tried on a number of occasions to reintroduce milk and cheese and butter into my diet, but each time I had the same experience.
My mistake, in retrospect, was to try and return to my previous diet straight away, without building it up slowly. If I had just taken a little butter, milk and cheese the first week that I returned to it, I could probably have gotten away with it and gradually returned to eating dairy as normal.
Instead, what happened was a kind of avalanche. I soon found that my digestive symptoms returned, and after a process of elimination I realized that it was bread that was causing them. Soon it wasn’t just wheat, but all gluten that was implicated. Then this was linked to yeast and corn, and in fact anything that I had previously consumed with dairy products. It was as if some trigger had been turned on, and now I was hypersensitive to certain foods, and also liable to react to certain others.
And that has been the case for the last fifteen years. I still cannot eat any real quantity of dairy or gluten, though I can get away with a slice of apple tart occasionally, or some dairy mixed in with a soup. Yet they continue to cause me digestive problems (though in general food doesn’t seem to effect my energy levels and general health).
I also then began reacting to certain medications and supplements. To this day I cannot take D-ribose or any of the detox supplements like Spirulina. Any time I start a new supplement, it has to be on a tenth or a twentieth of the normal dose or I get extreme digestive reactions.
The next major food area that I began to lose was an unusual one. I began to have real trouble digesting oils. I had been living in Portugal for the three years previous to my falling ill, and had taken to using olive oil on salads, potatoes, and even bread at times. I used it a lot. Within a few years I found that olive oil was now out too, it caused me a lot of discomfort with only a small amount.
So I branched out. I ate a lot of salads as I was trying to eat healthily, and so tried a succession of cold pressed oils in salad dressings. Hazelnut oil, pumpkin seed oil, sesame oil, rapeseed oil, avocado oil, I was able to use some of them for a while, but I always ended up becoming intolerant to each one.
The processes by which these intolerances developed were so bizarre that I still have to question whether they were real. For some oils, like avocado, as soon as I tried it I reacted to it, and was never able to eat it. In the case of avocado oil, after I tried it and reacted to it, I also found that I was reacting to avocados themselves, something I had never had a problem eating before.
Others seem to become “infected” by other problem foods. Once or twice someone else cooked something in olive oil without me realizing, and I used whatever oil at that time I was not intolerant to, let’s say sesame. It I used enough of it, and if it mixed with an already problematic oil like olive, then I could develop a sesame intolerance too, and this would never go away. One instance of eating an oil in conjunction with another problematic substance could leave me intolerant to that oil for life.
The last way of forming an intolerance is connected to taking a break from the particular food for a while, and then trying to eat it again. This first happened with dairy, as I explained above, I didn’t eat it for a month, then when I started again, bam! intolerant.
This has happened in the last two years with my last two cold-pressed oils. A couple of years ago I went to Spain for six days. At that time I was eating Hazelnut and Walnut oils on salads. I took some walnut oil with me on holiday, though not hazelnut. When I came back, I tried some hazelnut oil on a salad, only a very small amount. Immediately I reacted to it, bloated stomach, cramps, diarrhoea. At that stage I hadn’t eaten the hazelnut for about ten days, including a couple of days before the holidays. And that was that, having eaten it regularly for years, once I laid off it for a week and a half, as soon as I tried it again it was like swallowing acid.
And so two weeks ago I lost my last oil. Again, holidays in Spain, eight days. I took some walnut oil with me but was eating out a lot and so didn’t use it at all. I came home, tried a couple of drops on some food, then tried to increase it that week and….Bam! again. Bloating, cramps, diarrhoea. Ten years of eating walnut oil and now I can only stomach tiny amounts.
So now I am having dry salads. Vinegar is a problem for me too, so there is really nothing left I can put on lettuce, tomatoes, cucumber. I suppose I can try lemon juice. At least I have found goat’s butter, so I can cook with that at times. But this business of losing foods is absolutely infuriating. It is one of the things that has most depressed me about this fucking plague, among a long list.
The thing is, I thought that I had improved, in terms of intolerances. In recent years I have been able to stomach small amounts of previously very problematic foods. I can cook with small amounts of olive oil (I think it is the cold, raw oil that gives me more problems), and can also eat small amounts of dairy and wheat, though not without a little discomfort and not in anywhere near the same quantities as before.
And I have not developed a new intolerance to anything for a while. Until now, of course, until losing my last cold-pressed oil a couple of weeks back. I have been doing well in general, working close to 70% or 80% of a full week, still struggling but less than in the past. But the shadow of food intolerance is always there, just as the condition as a whole is constantly lurking behind a seemingly normal life.
Losing the walnut oil depressed me for a few days. It is the finality of the experience that is so hard to take, all of these foods that I have become intolerant to in the past have never been able to reappear in my diet. As far as I can see, once a food gives me symptoms then that’s it. I may be able to sample small amounts in the future, but as for eating it regularly, that’s no longer an option.
It is all so fragile. My painstakingly constructed semi-recovery is real, but it is not secure, and it does not exempt me from this bizarre, dispiriting experience of finding – for no good reason – that something I have eaten and enjoyed for years is now doing me harm.