Diet and long-term conditions

A healthy diet is one which consists of an appropriate balance of protein, carbohydrates and fat as well as other essential ingredients such as vitamins and some minerals. It is also important to of include plenty of vegetables and fruit in one’s diet. This dietary advice applies to everyone and, if carefully followed, then there is no need for extra vitamin and mineral supplements. People with certain long-term illnesses such as cystic fibrosis and kidney diseases need to have a high calorie diet to prevent weight loss. Some others need to avoid or include particular foods because of their condition – which can cause problems when you want to eat with friends or pick up a take-away.

Many of the young people we talked to were well aware that a healthy diet in combination with exercise, not smoking and drinking little or no alcohol would help their bodies to be strong, fight infections and stay well. Although no one said that their diet was ‘perfect’ some did say that if they ate chocolate or a piece of cake they would make up for it by having a piece of fruit afterwards.

One young woman with scoliosis said she makes sure she eats things with enough calcium to help strengthen her bones.

Has a diet that is rich in calcium to help keep her bones healthy. Is careful about her calorie…

Age at interview 22

Gender Female

Age at diagnosis 16

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In which way do you think a good healthy diet will benefit you?

Well, I make sure, well, for my own, because it’s, like with my bones, I make sure I eat enough calcium. If I put too much weight on, it does put a lot of pressure on the spine as well. So I have to keep an eye on that. Not too many take-outs. But I mean my diet is far from perfect. I must try harder on my diet. But I, if I eat a chocolate bar, I’ll eat an orange, and I’ll try and tell myself that, ‘That’s okay. I have eaten an orange. But, yes, I mean I’m not perfect. I’m far from perfect, but I do try.

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Most young people said they don’t take vitamins, minerals or any other kinds of supplements and prefer to rely on getting what they needed from the food they normally ate. Some do take specific supplements because they believe it has a beneficial effect on their symptoms or condition. One young woman started to take cod liver oil after reading an article which suggested it was good for people with arthritis.

She decided to eat everything but in moderation. She takes cod liver oil and vitamin D but…

Age at interview 21

Gender Female

Age at diagnosis 12

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With food and with fashion no, no, I’m not, I wouldn’t say necessarily with fashion, with food and shoes probably I will say, ‘No, I’m going to wear what I want and I will eat what I want. And I’m, I’ve heard of these things about cutting out dairy’s supposed to be good for arthritis an cutting out wheat and I remember we were discussing it in Tai Chi and she was saying, ‘Cut out dairy and you cut out wheat and you cut out red meat. You cut out citrus fruits. And I was thinking, ‘So what do I eat? If I cut out all of those things, I really don’t know what I would eat.

I will eat whatever I want to eat within a certain extent. I’m not going to eat unhealthy food all the time. But if I want red meat I’m going to have red meat because there are certain things that I will put up with but I won’t let it take away my food. That’s, that’s one thing that I’m always going to enjoy. I love restaurants, I love eating out and I’m never going to stop myself from eating. If I didn’t have wheat and things I don’t know, I mean I love bread. I absolutely love bread and I don’t think I could do it. And if I can feel well and still eat those things, then I’ll do it that way. I think sometimes if you cut out something you believe it will work and then it will. So for me I believe that eating everything will be fine for me so it will.

I take cod liver oil because not, I was never advised to by my doctor or anything but I read a study on an arthritis, I can’t remember which arthritis website it was but one of the major charities for it and it said that they’d shown that taking cod liver oil regularly can prevent the disease from progressing and even reverse some of the, the joints that you’ve had, the, the joint problems, it can reverse them. So I decided, I take the strongest ones I can. I have to take Nutrataste because they repeat on me. I’m, I’ve got a very funny stomach like that. Everything repeats on me. So I have to take the Nutrataste ones and I take them at night still because even they repeat on me. So I have to take them right before I fall asleep.

So I take those and of my own free will I don’t take any other supplements because I was on calcium but it wasn’t doing enough so now I take Vitamin D and I have to have as much calcium in my diet as I can. I do change that part of my diet. I have as much calcium as I can and I, I try and eat as much you know, natural minerals and things like that but, like I say, I’m quite fussy, I vary from day to day. I love vegetables and things but I just, I can’t have too much of anything really because I just get sick of it and some days I’m just not hungry at all. Especially in the heat, I hardly ever eat anything. But I don’t take any, I don’t take any sort of vitamin tablets or anything like that. I’ve always been of the opinion that you might as well just eat loads and get it from that rather than take it in tablets. So I do, I try and, I try and eat, eat my way through [Laughs] instead of having any supplements.

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Being able to eat what they want gave some young people a sense of control over their bodies. Several young people suggested that they don’t follow their doctor’s advice regarding diet. One young man said that when his arthritis was bad, food was the only thing he had to look forward to. A young woman said that she is willing to compromise on other things but not on her food because she loves food and eating out.

Says that he eats what he wants because he has always enjoyed his food particularly when his…

Age at interview 17

Gender Male

Age at diagnosis 7

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I don’t think so. I’ve always been told that I shouldn’t eat this, shouldn’t eat that. If I eat that that’ll make this worse. This, that’ll make that worse but I’ve always said, ‘I enjoy my food. I’m going to eat what I want. And I’ve always done that and it’s never done me any harm. So I, I’m not saying ignore advice on diet but I have [laugh]. I’ve never wanted to restrict my diet because I’ve always said, ‘I’ve, I’ve enjoyed my food. It’s something I enjoy particularly when I was ill. I said, ‘If I’m going to enjoy something I might as well enjoy my food. So I’ve never really followed a strict diet.

So what have they said regarding diet?

Well they said, ‘Miss out’ I think it was, ‘Red meat and some, eat more of this and eat less of that. And it’s just I never yeah bothered to miss out things I enjoy [laugh]. Drink less fizzy drinks and don’t eat things with acid in them. And I’ve always said, ‘I’ll, I’ll eat what I want. [laugh].

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When you leave home or go to university it can sometimes be hard to eat enough of the right type of food. One young woman in her first year at university said that she realises the impact that a bad diet and lack of rest has on her cystic fibrosis.

At university she found it hard to get the balance right and ended up not eating the high energy…

Age at interview 19

Gender Female

Age at diagnosis 8

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But when I’m, started at uni I think it wasn’t the whole balancing. Well it wasn’t the whole doing my medication and preparing it myself that I found to be much of a problem. It was because I was like cooking for myself and kind of it was getting the balance between. ‘Cause, ’cause everything I did was kind of, I could do what everyone, whenever I wanted I could have mealtimes when I wanted. I could eat when I was hungry and not when it was ready. I could go to bed at whatever time you wanted. Like no, you know you could do whatever you want.

And I found it difficult like managing, getting a balance between everything and like. Anyway after about six weeks I got, I started to get quite run down. I hadn’t been eating that well because I was. I wasn’t in catered accommodation. I was in self-catered which is what I chose ’cause that’s what I wanted to do. But I didn’t really enjoy cooking that much and I wasn’t eating a good diet. So I started to lose a bit of weight and I wasn’t getting enough energy from my food and I was still doing a lot of sport and exercise so I started to get quite run down.

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Young people with type 1 diabetes face particular issues when it comes to diet. Getting the balance right between insulin units and the right amount and kind of food can be tricky particularly just after diagnosis. This balance is very important because it helps control the occurrence of hypos (hypoglycaemia or low blood sugar) or highs (hyperglycaemia or high blood sugar). (For a more detailed discussion see our section on Type 1 Diabetes in young people). One young woman was initially put on a set number of units of insulin for each meal and found herself eating a lot. She was particularly worried about her weight gain. Another girl with diabetes said that eating chocolate and not doing the insulin injection sent her blood sugar levels sky high. A young woman living with cystic fibrosis as well as type 1 diabetes told us that she finds her diabetes more difficult to control.

The only – and best – way to have sweets is after a meal, as a ‘treat. At one point she was…

Age at interview 17

Gender Female

Age at diagnosis 6

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Now hows your diet? You mentioned chocolate [laughs].

Yeah.

You mentioned sugar.

Around the same time that my insulin started to get out of regime I did start eating a lot more sweet stuff and it’s, it is hard in school because a lot of people that, like, you have, we have cake lessons occasionally in school and that’s right the end of the lesson whoever made a cake in the lesson hands out their cake and you go off to your next lesson eating the cake, and that was, that was quite hard because it was something to keep you going to school but it was like you couldn’t really have the cake, that’s, things like, you see other people having sweets and you think, ‘well I’ve gone five, six years without any sweets [laughs] and I really want to have sweets’ and it’s, it’s very hard to, to say no to sweets, but you should [laughs] say no, it’s like good to have, like one every now and again, like, when I was younger I did eat a lot of Skittles and they, they are very nice if, if you don’t eat them a lot at time, if you eat them a lot at time you’re not used to eating sweets and your blood sugars will go high and you will be sick [laughs] but in the end, what I’ve started doing is saying I can have ten individual little Skittles after a meal, provided I eat like all the meal that I was supposed to eat including my vegetables, and all like, you, you can have a piece of chocolate cake if it wasn’t like totally, completely covered in sugar, you can have some chocolate cake after a meal and that wouldn’t be as bad as just having chocolate cake in the middle of the day, sort of thing, [noise] for no reason so. But it’s really important that you do eat the meal before you have the sweet stuff and, one thing that I was very upset with when I first got diabetes was the fact that I used to love grapes and grapes have a lot of natural sugar in and you can’t eat, actually eat that many grapes [laughs] any more. But, a lot of people have fruit for breakfast and that’s not always the best way, thing to have for breakfast, a fruit can sometimes, like grapes and other fruits can be more sugary and therefore cause problems with sending your bloods high and they don’t have that much starchy food in them so, with breakfast it’s best to have like your toast or your cereals and at lunch you can have your main meal but you can possibly, sometimes have something sweet like you can have, you can have for your fruits or, might even have like something small like a little piece of cake, but not anything majorly big ’cause that’s gonna probably be, put your blood sugars up and, once they were up from there at dinnertime you’re gonna have high blood sugars but you’d need to eat at dinnertime and, if you don’t eat because you’ve got high blood sugars and you’re feeling sick it’s not the best thing because, blood sugars then gonna crash later and you’re gonna go very low because you haven’t eaten you’re gonna feel very hungry so it’s probably best to have your sweet at the end with your dinnertime meal.

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Does not need a high fat content diet for her cystic fibrosis because her weight is fine but she…

Age at interview 21

Gender Female

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I was actually, I see someone, Professor [name], who I was referred to, from Doctor [name] who is my current consultant, and she specialises in diabetes but also people with CF, so she has a history of how to treat, and it was quite hard to start off with, it was basically, someone with diabetes eat more long acting sugars, so potatoes, pasta, things like that, and to try not to eat sweet things, so it was, I was, tracked the same way, but there was, it was kind of, no restriction on the amount. To take in more, more carbs, don’t stop eating the amount you have and don’t diet, just take more insulin to counteract this. That was the’

Okay. How long ago, do you think it took you to ‘

Quite a while. I’m still adjusting. I mean if I get a little bout of cold or any flu than I see my sugars go up higher and it is quite awkward, it’s a bit frustrating because you’ll just get it settled and you’ve got it all even where your blood sugars are alright, and then you’ll get an infection and its really hard to keep them down and get it right, because it just, I mean last week I’ve just finished exams and I haven’t slept much and I’ve been stressed so I’ve had a bit of a, a bit of a cough, and it’s been really hard to get it back, I’ve had to increase my insulin just to keep it at normal rate, but when I’m fine in the house alright I’ll probably take it back down.

How do you find, because you need to eat very regularly, when you have diabetes, do you manage to do that?

I tend not to eat in the morning, but later on in the day I do eat, so I, because its such a low dose that I’m on, I don’t tend to get hypos, things like that, it’s very rare.

What about your diet. Hows your diet?

Certain things, as I’ve grown I haven’t eaten. Diabetes I’m not supposed to eat Jellies, or Jam, my favourites, and I’m not much of a chocolate lover, but I love jellies and jam. I don’t eat jam anymore, I do eat jellies now and again, and that’s really bad, but I’m not bothered really. It’s only now and again. I don’t drink fizzy pop, I can’t drink pop because of the acid, anything that’s really high in acid I have to take more lansoprazole, or make sure I’ve taken it, oils, fats, carbonara, anything with double cream is a no, just because I don’t take Creon I just don’t digest it, and I’ll know if I’ve had anything like that, next day because I’ll just be home bound, can’t go anywhere. Or if I can keep it like that, it puts us off, I can’t eat, I’ll be feeling sick and, so I have, because I don’t take Creon I have to adapt my diet which is technically a lot more healthier because its got less fat in it, and it tends to be more, more carbohydrates or for my diabetes, on that side its good as well.

And the reason you don’t take Creon is because your weight is.

Fine.

‘it’s fine.

I’ve never had any problems, but the first nine months of my life; I’ve never had any problem putting on weight. As soon as they put me on Creon I was fine and then I’ve never had any problem where I had infections where I was losing it, so I’ve never, I’ve always been able to maintain it, as I say I don’t, if I ever get an infection where my weight plummets I’ll have no qualms about going back on.

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In a few cases young people have had to adjust their diet either for a short period or permanently. This can be difficult to get used to. One young woman with kidney disease said that she was put on a high calorie diet and was not allowed to eat dairy products or foods containing potassium, such as bananas. She found it hard at first but her dietician gave her lots of advice and information.

She had to make a lot of changes to her diet because of kidney disease. Her dietician gave her a…

Age at interview 18

Gender Female

Age at diagnosis 13

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What did the doctors say about what you should eat, or you couldn’t?

There was a lot that I couldn’t eat, but the things that I was to eat was plenty of things with calories in. They liked us to eat doughnuts with lots of, icing on top and things like that. So that used to help bring certain blood levels down which make us feel better, and they got a bit sickly after a while. The things you weren’t allowed to eat was anything with potassium in, so I wasn’t allowed chocolate, potatoes, I wasn’t allowed chocolate.

So you had to learn a lot about food what you could ‘

Yeah, tomatoes was a definite no.

No.

I wasn’t allowed phosphates, I wasn’t allowed cheese, milk, things like that. So, yeah it was really hard, when it came to meal times and when I was hungry you can’t just pick up anything. Also anything with fluid in because I was on a fluid restriction, yoghurts, even an orange and things like that. I was allowed oranges, but simple things like that which have juice in, even bananas I wasn’t allowed them. So it was quite hard.

Did you have some help from a nutritionist, you or your Mum have help from the nutritionist, or leaflets that explained’

Yeah, I had a dietician and she gave me a little booklet with lots of leaflets in saying what I wasn’t allowed, and it was also giving me meal ideas as well as what I could do. Which was quite helpful. So, and they used to, every now and then we would have to write down what we’d been eating, for like say two or three days, and they’d look at that and see whether I was eating what I was allowed or what I wasn’t allowed, so they’d change little bits here and there.

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One young man was diagnosed with coeliac disease after being screened for the condition (a condition where people cannot eat anything with gluten in it – such as wheat, barley and rye). Type 1 diabetes and coeliac disease sometimes occur together and therefore patients with diabetes are usually screened shortly after diagnosis for coeliac disease. This young man is restricted in the choice of carbohydrates he can eat because he needs to follow a gluten free diet.

He was diagnosed with Coeliac disease and had to change his diet to a gluten free diet. A…

Age at interview 16

Gender Male

Age at diagnosis 11

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Okay. Tell me, went so, you were 14 when you were diagnosed with coeliac?

Yes.

Can you tell me a little bit about it?

I was having a lot of stomach pains and other problems, and, I had a routine blood test, as with my diabetes I have quite a few blood tests because Coeliac Disease is quite closely related to diabetes and they picked it up from that. So I had an endoscopy, and they found that I did have coeliac disease, and I was informed then, I kind of slowly changed my diet. So I have a completely gluten free diet.

Gluten is found in wheat, oats, barley and rye. So I have to avoid them, but I’ve got a book of foods I can and can’t eat, which really helps. It’s from Coeliac UK. That’s great, that helps a lot. There’s a lot of things that contain gluten there is good alternatives for, so there’s not many things I can’t actually eat, because there is a gluten free alternative.

And how do you manage with lunch at school for instance? Do you have a packed lunch?

I have sandwiches, I pack my own lunch. For school, yeah. I think the school canteen could probably cater for me but I’ve always taken sandwiches anyway so there’s no point in changing that.

There have been times when it’s been a bit overwhelming, but I think I just get used to it really all the time, now I don’t really think about it. If I’m going out with friends or something that’s the only time that it can be difficult, I’ve found somewhere that does gluten free food and caters for me, but most places manage to make something gluten free.

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He says that there are a number of gluten free things he can get on prescription including bread,…

Age at interview 16

Gender Male

Age at diagnosis 11

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So you buy gluten free bread or?

We make it ourselves, we have a bread maker, its gluten free setting up, we just get flour on prescription and other ingredients and just put it in. It makes really nice bread.

Okay, so you get the flour on prescription?

Yeah.

Okay. What else can you get on prescription?

In the past I’ve got biscuits, crackers, I think you can get bread as well, but it’s not very nice compared to what I can make.

I don’t eat, I think I just eat the same amount as anyone does really, try and eat a reasonably balanced diet.

What is a reasonable diet?

Just good portions of five groups, carbs, proteins, fats, so.

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Sometimes when you are really quite ill it is not possible to eat through your mouth. A sixteen year old with a kidney condition told us what it was like to have a nasal feeding tube (a plastic tube through the nose passage that goes down your oesophagus into your stomach) and about his concerns about having a tube so visible on his face. When he found out that he might need a permanent tube he decided that he didn’t want to have to explain it to friends. He asked for alternatives and decided to have a feeding tube inserted directly into his stomach instead.

He had a nasal feeding tube but asked to have one inserted in his stomach instead because he didn…

Age at interview 16

Gender Male

Age at diagnosis 11

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And then I decided that I didn’t want the nose tube anymore. I had a choice. I could swap the nose tube.

Yeah that’s fine.

The, I could swap the nose tube for a feed tube in my tummy. It goes directly into your stomach and no one, no one sees it. ‘Cause a feed tube coming out your nose and strapped to your face is really noticeable.

How did you feel about that?

Well I thought, you know, I’ll go for the, the one in my stomach, you know, because I was told it. At, at that point we had discovered that I would be on the feed long term. And with the nasal gastric tube you have to change it every month. Plus when you’re sick you have to change it. So it’s like you could change it two or three times a month. So I thought if you have it in your stomach if you throw up it’s not going to come out and it stays in. It’s permanent.

But to have the nasal tube was it bothering you?

It wasn’t bothering me at the time but when I was, when I was told long term I knew I couldn’t have that then.

Why?

Because having a tube in your face 24 hours a day every day is ok when, you know, when you tell your friends, ‘Well it’s not permanent, because those tubes aren’t permanent. It’s like it’s not permanent. These things will come out. And they’re like, ‘Oh alright.

When you know you’re going to be on it for a very long time, for years. Then it’s like, ‘Ok it might be a bit less than semi-permanent, a bit more than semi-permanent. You know it’s like, maybe permanent is the word. So I thought ok, plus I don’t have to get it changed. When I throw up it’s not going to come out.

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Getting on with your healthcare team

Consultants, nurses, physiotherapists and other health staff can all play a very important role in helping young people understand their condition and how it needs...