Food: Does anyone else suffer from not being able... - LUPUS UK

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Food

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Does anyone else suffer from not being able to eat much? Also any suggestions on what to eat to help? In a rough patch of not being able to eat much atall lost alot of weight

12 Replies
MEW53 profile image
MEW53

Familylover,

Difficult problem but try and drink more, perhaps have some smoothies or protein drinks. Tuna (tinned) is one of my favourites, scrambled eggs, avocados are good too, lots of protein.

I lost 5 stone in 2014 when I got ill with Myositis/ Scleroderma. Swallowing was a problem for me, fortunately I got use to a more liquid diet and then starting adding more things into my diet. I tend to eat small portions and eat regularly, little and often seems to work for me. It’s a bit of trial and error and after I was able to eat better I put a stone back on within a year.

You start eating with your eyes so if the food looks tasty you may feel like eating it.

Good luck

Good reply from mew53. I recently lost an awful lot of weight following a period when I was particularly unwell. I went to my lowest weight for about 25 years and I am never overweight.

The problem is, as your stomach shrinks down, it makes it difficult to eat much at all. I was on saucer sized portions. I just couldn't manage more.

But you need to keep up with the bodies vitamin and mineral requirements to stave off further issues. So I started taking spirulina which is a food supplement.

As my body started to fight back against my infection my appetite gradually increased. And I am putting on a bit more weight again. So don't worry unduly but see if you can find a supplement that is right for you that can get you through the worst of it.

miccika1 profile image
miccika1

How is your motility in general? If you get bloated and digest poorly that might contribute to you not being able to eat much. I tested for SIBO as i was getting bloated from eating. After treating sibo i had better apetite. Make sure to take some elemental diet shakes to ensure you have all the nutrition even if you can't eat much. Then once you start eating normally you can stop...

HazelW profile image
HazelW

My appetite has shrunk too. I just eat things I like - even if sometimes the combinations are a bit weird. I do make it a rule to eat 3 meals a day no matter how small the portions are. I did lose a lot of weight but it has steadied now. So my advice is eat what you fancy - even if your menu choice seems a bit strange !

Lupiknits profile image
Lupiknits

Same problem. My BMI is 16.5 but none of the consultants or GPs have seen me at “normal” and I think they tend to assume I’m normal skinny.

I’ve just come to an arrangement whereby I invested in toddler plates to make the portions look less pathetic, and use a blender.

The best thing is to chew thoroughly and eat slowly. I’m afraid it’s eating in company that causes problems. We’re talking, and I unconsciously try to “keep up” with the other’s speed. That ends with food stuck in my oesophagus.

overnighthearingloss profile image
overnighthearingloss in reply toLupiknits

When that happens to me I stand up and rub my hands up and down over my oesophagus. I have recently had an endoscopy and was informed i had a hiatus hernia. I think that is what may cause me a lot of the swallowing issues.

Joy_1 profile image
Joy_1

Can you not be referred to a dietician?

Surely they will be able to recommend energy dense foods with high levels of vitamins and minerals. Or at least get you to keep a food diary for a week and then recommend supplements to make up for any losses in vitamins and minerals.

Lupiknits profile image
Lupiknits in reply toJoy_1

Referral was quite a let down. I was given ideas which consisted of a cooked breakfast, doughnut snack, pizza lunch, another snack then a pasta dinner with a milky drink before bed. I really felt they stated the bloody obvious, and I could possibly eat all that I would happily be tucking in.

When food gets “stuck” ( I have a narrow scarred oesophagus thanks to me attributing reflux to stress for months before I saw a GP) I stand up often and take sips of water to gently (sorry) regurgitate. Deflatine or Windeeze help, but it can be twelve hours before I start to hear gurgling and know it’s unblocking.

My stomach empties very slowly, shown by a barium swallow.

Joy_1 profile image
Joy_1 in reply toLupiknits

Goodness! I take it you were given a chance to detail why you were having problems? If not then if it were me I would go get another appointment.

Many moons ago I was going to become a dietitian but decided against it and became a food scientist instead. So I am no expert, but what about smoothies. There must be some amazing recipes online or books out there as smoothies are all the rage aren't they.

Lupiknits profile image
Lupiknits in reply toJoy_1

I do smoothies in the summer and soups in the winter. I’m waiting to see if anything shows up in my colonoscopy and what transpires from investigations into my extremely dry mouth before getting/asking for another referral. I may see if my pennies stretch to seeing a dietician privately.

I think the NHS expends most of its dietician resources towards the obese and eating disorders. My impression is that there aren’t enough of us in-betweeners.

Poshcards profile image
Poshcards

I have been same for ages now too, some days I just manage a sandwich, but, sadly no weight loss what so ever!! x

C-aches profile image
C-aches

Good morning Familylover, I have recently been diagnosed with Lupus following a particularly bad flare - I lost 10lbs in two weeks, and I have a small frame anyway. My greatest difficulty, apart from having no appetite was that taste sensation was altered. Everything tasted awful! This combined with having no saliva made eating things like bread impossible. My constantly supportive and very worried husband asked me to think of something I could fancy eating. My answer was fresh raspberries and good yoghurt, I found that I could eat a small bowlful and really enjoy it! As I have improved my appetite has returned and I am now enjoying food again, but the weight is slow to return. Try not to worry too much, eat what you can fancy as often as you can manage. I had a bottle of water in my hand all the time for a month and that helped too. Sending positive love for a speedy recovery x

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