| Desperation and desire for control over condition and its management |
When you’ve got gout, you will try anything, and I mean anything, and I’ll eat cherries, I’ve had baking powder, I’ve had cider vinegar, er, honey, er, that type of thing; they’ve only got to mention it on the Internet that it might help, then you try it, you will try it, honestly, and, for the pain. And, er, you know, the baking powder I have it every day for quite a while, I could never prove that it helped, I could never prove that it did me any harm, er, it might have helped, I don’t know, but, er, if you think it’s doing you good, like cider vinegar, you will take it and, er, you might convince yourself and the gout that it’s working [laughs]. (William) My doctor is lovely. He does not demand. […] He’s very open to talking to you about it, and he accepted and allowed me to do—to go down the path I wanted, which was to try and avoid medication and, as I say, watch my diet. He allowed me to do what I was comfortable with. (Gail)
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| Perception that successful management of gout through (individualized) dietary modification is possible |
I’ve gone nearly two-and-a-half years without an attack. So, when I had my last one I was really surprised I’d got it, but then thinking back, I’d introduced another foodstuff that I’ve never took and now I’m aware of it. I’m really thinking, ‘I’m going to spend the rest of my time and never get it’. I’m very positive about that—never get an attack of gout again. […] I think the best thing would be […] not to just say, ‘Well, I’ve got gout; the tablets will sort it out’. Without actually trying to say, ‘Well, what’s actually causing it in the first place?’ Really, if you look at it, I think for the majority of people, if you could find out what’s caused it in the first place then it probably will prevent you from having gout, or if not prevent, then reduce the number of attacks you have. I’m sure all of us have got some trigger factors. That would be my advice, to be sort of—to attack the disease and not just accept it. (Graham) |
| Weight loss not a central aim of initial dietary modifications |
And, of course, there had been a change in my routine, which was that I stopped taking serious exercise, and […] I put on weight and all the rest of it. And I, I now discovered, through talking to one or two other people, I’ve only got a small sample, but this was their experience as well. Having done jobs—a gamekeeper, for instance, who used to walk, you know, miles and miles every day and then suddenly he retired and he had gout, almost within weeks. […] I’ve now got reasonably fit over the last few months and I’ve lost a bit of weight, although you’ve really got to do serious things to lose weight seriously and change your diet and everything. (Male focus group participant) Because I think deep down, it’s started developing maybe the issue when I was heavy […] so I know full well I’m going to have to keep—keep my weight down definitely, and watch my diet. I can’t sway […] you’ve always got to be mindful of eating and drinking the right thing, I think that’s the important thing. (Georgina) I’m now over 20 stone, don’t exercise, can’t exercise, other conditions. I don’t particularly cut any food out. I don’t know what caused the gout to come. I’ve—nothing I’ve done different in the last 15, 20 years before the gout came. (Male focus group participant)
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| Experimenting and following self-imposed dietary rules or restrictions |
The other day I was checking on the Internet and there was somebody who said ginger ale helps, so I went down to Waitrose and bought 3 litres of ginger ale and I’ve been drinking that ever since [laughs], but actually the gout started to go, whether it was going on its own accord or because of ginger ale I don’t know. But that’s the sort of thing I do, yes. (William) The trigger foods are just hard to pin down, for me, anyway, you know. And I don’t think there’s a definitive list. I don’t think there’s an actual top 10 list that these are the worst things. It’s, it’s, it’s kind of a process of, ‘I’ve had an attack. Okay, what did I eat in the last 2 days that might have triggered it? Is it shellfish? Is it…?’ If it’s you’ve had a lot of beer, the night before or whatever, you know. I don’t know. (Andrew) One thing I don’t eat anymore is oranges […] or lemons or grapefruit, I’ve packed them in […] I’m not chancing it […] it’s in my head that they might do something, just the thought of “might” will do for me– I’m not doing it. (Steve) You can get from herbal shops—cherry, you know, tablets based on those kinds of fruits and whatnot. I took those for a while to see if those would help at all. (Henry) We bought, we, myself and my partner, we got, you can get gout recipe diet books, so, so foods that are low in purines. (Adam)
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| Successful management with urate-lowering therapy removes perceived need for dietary modification |
Interviewer : And have you tried any other remedies at all, or did you try anything else other than…? Paul: I’d no need to, that [allopurinol] was the remedy for me, and it works. Male focus group participant A: Well I’m still eating mussels and king prawns and everything like that. Male focus group participant B: The allopurinol, I suppose, is to let you do that isn’t it?
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| Dietary modifications perceived as unrealistic, unmanageable, unproven in effectiveness, or irrelevant |
I’ve tried, oh, all sorts of herbal remedies […] I’ve tried literally dozens of them; they don’t work. They don’t work. They’re all expensive. And I think if anything they just make you feel sick. So … it—they didn’t work for me, the alternative medicines. And I tried dieting, and that didn’t work either. It didn’t seem to have any effect at all, what I ate. […] My view was that if they work, all the GPs would know that they work, and they would prescribe them for you. And so, I thought, waste of my time here. (George) I have looked up on the Internet, obviously, the causes of gout, but basically, it can be caused by practically everything you eat. You know, it’s either stop eating [laughter] and, hopefully, your gout will go away, or I don’t know. (Dorothy) The diet sheet said, […] these are the things to try and avoid, and it was things like herrings, tomatoes, anything acidic, and as I don’t like anything acidic anyway it’s not really a problem because I don’t eat acidic foods or drink acidic drinks, because I don’t like them. […] It wasn’t really of much use, was it, in the end? (Sandra)
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| Contradicting and confusing information |
I think the gout, because it’s […] a bit like mercury. It’s very hard to pin down exactly, and everyone’s different. So, if it was a definitive—if it was more definitive, and said, ‘If you have gout you should not drink, or do not drink, or, you know, in—research has shown that, you know, in 80% of people who stop drinking, their gout went away’. If there was more definitive facts and figures like that, I think it would be easier for people to make life choices and make decisions, but I think it’s—because it’s, it’s vague, you know, understandably, it’s vague for various reasons, that people can take out of it what they want, you know, and it’s open to interpretation. (Andrew) |
| Dietary modification as a patient-led process |
So, I think with my doctor it’s sort of looking to give me a painkiller, they don’t sort of give you the information that you can get on the Internet telling you what food can bring on gout and things like that, and that’s what I find has helped me a lot, going onto the Internet and understanding it more, and if you understand it, it’s less fearful. […] That’s when I learned more than ever, more than the doctor could ever tell me, and it was the diet that I started with, going on the Internet, yeah, it was that, that started it all. My doctor’s a superb doctor but, as he said, he’s got very little knowledge of gout and […] all they want to do is try and relieve you of the pain, not the cause, and that’s what I did find out yes. (William) You’ve got to do it yourself. (Female focus group participant) The gout websites […], they are a good support mechanism for people who use them. […] It’s good to be able to read about it and just see other people’s experiences. […] It’s a story, isn’t it? People can relate to it more and […] just understand it more if it’s coming from the horse’s mouth. (Andrew) My dad’s friend who’s been diagnosed with gout, he swore by cherry juice, so I tend to have a couple of glasses of that during the week. (Georgina)
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