Diet

I am very interested in finding out what kind of dietary changes people have made that have helped their lupus. I have tried Paleo diet, low-carb diet, But don't seem to be able to get rid of the heartburn and stomach upset. I gave up sugar completely for a while gave up caffeine wheat, and dairy. Nothing really seems to help. All the literature and you read on the most prestigious websites like Johns Hopkins and Cleveland clinic say that you should eat a healthy diet but that dietary changes or very strict gluten-free or extreme diets like Paleo or whole 30, don't really help symptoms all that much. What do you all think?

32 Replies

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  • Have always,had a 'funny' tummy for years before diagnosis, can't eat some foods etc. Post diagnosis many meds also upset my stomach, last year I developed gastritis and was put on Lansoprazole, a PPI. Must say have never had such a pain free year, some grumbles now and then but nothing like before and no heartburn, acid reflux. Might be worth asking about them.

  • Hello, I jus wondered what length of time did you make these changes for? I get upset tummys and don't seem to stop them completely but have changed things and they are defintely less frequent. I stopped eating bread all together and I liked an odd beer which I have also stopped...li gues tha cuts out a lot of wheat.

    I mainly eat oats for breakfast, healthy smoothies, light lunches...salads...and fresh fish and veg for tea.

    I don't really eat processed foods and very little red meat.

  • Nice healthy variety there. I take Lanzoprazole or omeprazole for my acid reflux. If I forget to take it and have my oats in the morning, or my Nutribullet smoothy I am very sick. Its interesting that 2 of your items in your diet (which is very good and healthy) really aggravate my acid reflux.

  • I would make changes for at least six months at a time, but always seem to go back to my old way of eating because with a fad diets like Paleo they are so restrictiveIt gets very boring after a while, I think just healthy eating and staying away from processed foods and other foods like chocolate and Colas which I know are really particularly hard on my stomach, probably much more sensible and easier to maintain.

  • You need to experiment what foods seem to be bothering you. Or it could be a med you are taking. If i were you make a food diary for a month. Write down basically what you ate and any symptoms you get. Also write down meds. I used to be sensitive to a med and had to switch for awhile. Eating a healthy diet will make your body trust you. I noticed that everytime I ate beef my stomach bothered me. And potatoes.

  • Good idea sgnitto85,A lot of the things I know I should be doing I just have to get serious about doing it. It's when I start suffering a lot that I really start to think about it.

  • Hi, I just try to eat as healthily as I can but just this week I've had to go for a food allergy test as my GP thinks I may be allergic to certain foods, particularly fresh fruits and nuts. This is a new development as I've always been able to eat these foods before. Will hopefully get my results next week.

    I seem to get awful tummy cramps first thing in the morning and I'm awfully 'windy' in the evening. My rheumy said that this could be caused by the hydroxychloroquine rather than diet. One of the many joys eh?!

    Hope you find something that brings you some relief soon xxx

  • Have you tried omeprazole? I take hydroxychloriquine and had awful burning and stomach problems but since taking omeprazole I can eat anything :-) hope you find something to help soon .

  • Yes unfortunately I'm taking it twice a day and it doesn't work very well. I can't tolerate a lot of the other medicines like Zantac and protonix. I keep thinking if I could only change my diet enough I wouldn't need the meds. I'm on hydroxy and prednisones so both of those probably irritate my stomach but I haven't had any problems with it until the recent past. Thank you for taking the time to reply. Nan

  • Doing paleo or only cutting gluten and dairy isn't enough. For this to help your gut you need to feed it the right food.

    I can't recommend enough The Whals Protocol. It is a combination of paleo, cutting stuff but also adding goodies for the body - fermented food, organ meat, coconut oil, seaweed, for example. I've been on it since October last year and it has been amazing in terms of impact on my gut, energy, brain fog, weight loss, etc.

    It has 3 stages. I've settled at stage 2 because it worked for me so far. It was devised by a doctor suffering with MS and it is for people with autoimmune diseases.

  • Oh, and you need to stick to it for a few months if you want results. You'll be amazed how your taste changes and food cravings disappear.

  • I'll have to investigate that thank you

  • Hi nanleighh,

    We have a booklet available to download for free from our website called 'LUPUS and Healthy Eating' that you might want to take a look at. That can be found here: lupusuk.org.uk/publications.

    The booklet explains that you should try to eat a balanced diet rather than something like a low-carb diet.

    George

  • Thank you very much George I will

  • Last year I changed my diet and have found that it has helped. I don't think we have to follow all the 'fad' diets that are around, a lot of it is commonsense and in fact I never say I'm dieting I just say I stick to a healthy eating plan. What I mean by this is trying to have a balanced diet so not too much of one thing, I try and avoid processed foods and where possible buy organic. I snack on carrots, raw cabbage, celery, humous and I have also started to use a juicer, there are several websites for recipes, they are quite good fun to try (grapefruit & beetroot being my favourite!!). I also eat lot's of fruit, mostly apples & oranges. I do have treats but only maybe once a week which is ok but again it's all about balance, I think the minute you say you cannot have something you want it even more, unfortunately this seems to be human nature! I don't eat a lot of meat but this is mainly because I don't like a lot of it, if I do have some it's usually chicken but I do eat fish which I enjoy. It really isn't too difficult but unfortunately we are bombarded with information about diets/healthy living etc. which quite frankly can be confusing & expensive. You may want to consult your GP but if you think about it sensibly you will find what suits you i.e. I hardly touch bread but the minute I do I get very bloated so I try to avoid it.

    Although my Lupus makes me tired I have found I have more energy since eating more sensibly and I have lost approx 14lbs during the past 12 months, I feel great and attend the gym 2 to 3 times per week which is an added bonus.

    I think the more you look after yourself the better you feel both physically & mentally, the latter being the most important part. Good luck :-)

  • Thanks Debra that makes so much sense to me, I do sometimes get caught up in the fad diets especially when people tout that it makes him feel so much better. I know I have to keep focusing on keeping processed foods out of my diet and trying to eat a whole foods as much as possible I think once I retire in a few months and have more time to cook for myself it will be much better. Thank you very much for taking the time to write back I really appreciate it. I have given up chocolate, And sodas. I'm working on it, you give me inspiration that it can be done. XO XO

  • You can do it, just give yourself a target to focus for 1 month then see how you feel? I'll be surprised if you don't continue after that, I think the first month is the hardest but once you start seeing & feeling results it spurs you on. And don't beat yourself up if you have a little slip, just get back on track the following day. I have every faith in you ☺

  • I agree with Hopkins. There is no dietary treatment specifically for lupus so all you can do is eat in a way that is compatible with your body's needs. However, chocolate is known to weaken the pyloric sphincter muscle that prevents reflux and may trigger heartburn. Wheat seems to increase my stomach acid so I avoid it. Also, stop eating two hours before bedtime and don't eat too much.

  • Thanks Jeff I've done all that. I really don't like taking proton pump inhibitor's but that's the only thing that gives me any relief. I'm going to retire soon from a very demanding nursing job, so maybe that will help!

  • I don't always believ in all these diets because there is no actual medical proof that they work.

    I have a hiatus hernia causing sickness & acid reflux, food allergies, including Lactolose intolerant & I have found that when my hernia makes me sick I can only eat chicken breasts & boiled potatoes or white bread & plain biscuits. I have tried various things but when it's bad that's all I can eat, so when it's settles I try to eat mostly what I can or feel like eating as I get fed up with bland food. My Rhumatologist & diiatician told me to eat chocolate for calcium & I eat lactose free yogurts & have skimmed milk in my tea. I don't really believe in this 5 a day as I think it's unrealistic & over the top, as long as you have a reasonable variable diet then it's up to your body to do the rest my motoe is to have a little of what you fancy every now & then lupus or what ever any one has is stuck with us for now until a cure can be found that the nhs will pay for, so enjoy a little chocolate before the government out prices it.

  • I started drinking small amounts of fruit smoothies in between meals and it has helped me some. I not sure if you have them where you live but here I buy naked juice or maybe make you own.

  • Great discussion nan👏👏👏👏👏. Maybe my story can be useful to someone:

    My mother raised us to eat Adelle Davis style (balanced diet, low in processed foods, caffeine, alcohol etc). But I always had difficulty swallowing & digesting meats & fatty food. So my diet was reasonably good from early on...aside from a passion for ice cream. As adult life progressed, my infant onset lupus went untreated except for emergencies. Meanwhile, I concentrated on the lifestyle management of multisystem symptoms. Upper GI problems were particularly bad in my case. These got me into intensive 'occupational therapy: no tight clothing around upper body & abdomen, sleeping in an incline etc etc

    + fewer & smaller meals: grazing....which all helped my health a lot + also regular fast days - both these patterns of eating equate to a popular dietary systems being promoted now, eg the 2:5 diet etc. but in order to cope with my unrecognised lupus + work, I did come to rely on caffeine too much😉

    Well, the year I turned 50 I hit a big health crisis in which my chronic upper GI became extremely severe, with resulting in depth NHS investigations. At that point, I began 6 years of daily high strength PPI + domperidone (for chronic gastritis + oesophagitis (pre Barrett's) + gastroporesis). AND launched into a big diet review. A nutritionist recommended a book on antiinflammation diet. I dedicated myself to 2 years following the recommendations very strictly (the biggest change to my previous diet was that I totally cut out all dairy, glutens, alcohol, caffeine, refined carbohydrates etc). Almost immediately I began to feel benefits. But eventually I discovered that I was allergic to soya (of all the milk alternatives, soya milk was the one I'd liked best). Which made sense when my infant lupus diagnosis was finally recovered 5 years ago when I was in my late 50s....as many lupus patients are allergic to soya products😤. And I discovered that fresh ginger is KEY for me: I make fresh ginger tea ever day & sip it 24/7.

    After those v strict 2 years, I was able to slowly reintroduce a bit of gluten, dairy, processed carbohydrates, alcohol & caffeine into my diet again. But I've continued to avoid any significant increase in that stuff: I now know eating that stuff really doesn't help me cope.

    So, today, following the recovery of my lupus diagnosis in 2012...and 5 years of effective pharmaceutical treatment of my version of immune dysfunction, the causes of my chronic upper GI conditions are much better understood and it's clear even to my medics that all my decades of lifestyle management have probably helped at least prevent my health from being even worse than it is. At the moment, my chronic lower GI issues are flaring more severely than they ever have, which means more close observation & investigation. My lower GI stuff has been an issue lifelong too...coaxed along reasonable well by the same techniques mentioned above. So I won't go into detail now on lower GI stuff😜, although for sure daily fresh ginger + no soya do help that dept. A LOT👍

    The only thing to add, is that as I've aged, the types of fruit & veg I can tolerate have narrowed considerably. There are some types I react so severely too that I must avoid them altogether: pears, melons, cabbage family....throughout the years, I've continued to read about diet & nutrition & the functioning of our GI systems...I try to stay up to date. Interestingly, I've found that aging bodies often do go through the sort of an age-related rationalisation of types of foods found palatable & digestible🤔. On the other hand, my SLE & SS treatment plan meds do put considerable pressure in my already compromised GI system...so listening to my bod while coaxing my digestion along continues to be a big preoccupation in my 60s...and now sjogrens is possibly more implicated in my GI stuff than my version of SLE...

    I could go on & on, but am sure that's enough!

    Thanks so much for giving us this wonderful thread

    I hope it's helped you & others as much as it's helped me

    🍀😘 coco

  • Hi Coco, thank you so much for taking the time to reply. I am really admiring you for being able to make such drastic changes and stick with it all these years. I too have been studying diet for years, and really know what I should be doing but it's so hard to change. It would've been better if I would've started years ago, I'm the same age that you are so I suppose that aging has something to do with the fact that my digestive system is changing as well. I'm going to try to be diligent about staying away from all the processed foods, and sweets. I was curious to know how you make your ginger tea. I know Ginger is very beneficial to the digestive system. If you could share I would really appreciate it. Thanks, Nan

  • Take heart, nan: you'll crack this, I feel certain. You just need to really truly get your head round the subject by sounding it out here on forum....my feeling is that starting this fab discussion is a great beginning...you've certainly helped me keep my belief in this aspect of lifestyle management....sometimes even I have my doubts...but, in the end, my body tells me what it really wants...and I carry on trying. Am so glad you liked the idea of ginger tea: 10 years since I started to sip it daily, I really cannot do without it...and last autumn I tried to take a break for a few weeks...boy did my bod insist I go back to it!

    - I buy a bunch of those nice plump roots from tesco where they did play them in a big tray.

    -I use one nice plump finger of root each day in my FORLIFE teapot from Amazon (these cheerful little pots have little removable sieve holders into which I put the chpped ginger to steap for hours so that I have a good concentrated tea)

    -remove the fine skin on each finger of root - you can rub it off but I cut it off with a fine hand knife that barely cuts into the flesh itself

    -then chop the finger crossways as thinly as poss into rounds (you can grate, but I always skin my knuckles)

    -heat the pot with a bit of boiling water, as you would for any tea, and put the chopped prices into the pot, filling with boiling water

    -you can use the tea straight within a few minutes. But if you let it sit for several hours, and then remove the ginger pieces, you can keep the teapot full of concentrate in the fridge, using the tea like a squash by topping it up in glass or mug with cool or hot water...as you like

    -I keep a glassful on the go all day long, and take one to bed at night

    Hope that makes sense...hope you'll let us know how you get on

    🍀XO

  • Thanks so much for the reply Coco, I'm going to try that, thanks for being so specific even tell me what kind of teapot you use that so great I hope you have a wonderful weekend.

  • 😂...it's the greatest teapot I've ever used😉❗️

  • Well, I was so seriously ill, I lived on a nutrient liquid diet for a year before changes started to happen.

    I was extremely lucky because I found remarkably good complementary practitioners especially a naturopath, kinesiologist, dietician and homeopath.

    The downward slope to ill health is complicated and for me, I am sure it was coeliac disease in the family that started the problem which eventually led to Crohn's and autoimmune disease because it wasn't picked up.

    I reached the point where I could digest nothing after surgery, the wrong diagnosis and drugs.

    I now use Hashimoto's muscle test (kinesiology) to test for what to eat - so far no grains, additives or preservatives, but for a long time I could eat nothing as I said, so have improved immensely.

    I find that I can eat only fruit in the morning with a little protein by lunch-time.

    I eat fruit and almond milk at tea time and then my meal in the evening of small beans - no large ones - only mung, aduki, chick peas and blackeye for me, but remember we are all different.

    I can eat a little high protein now of eggs, fish and occasional chicken, but no asparagus, advocado, cauliflower and others that we are told are so good for us; only small amounts of potato and tomato, but I can eat broccoli, spinach, sweet potato, carrot and sea veg.

    I would suggest you find a good kinesiologist who is also trained in nutrition and possibly healing because we are whole people and it is not just the physical or clinical being that has to be healed - the mental and spiritual have to be healed, too.

    Ask around in health shops, health fayres/shows, etc. and be positive that you will find what is right for you because it will happen if you truly want it to and to appreciate every little help that you get is very important. All the best. Cann X

  • Thank you for taking the time to reply Cann, i've been thinking about going to a naturopath. It's really inspiring to see it's benefited you so much. All the best XOXO

  • I am sure if a naturopath can't help you, they will know someone who may be able to - that is what happened to me, I saw quite a few before finding the right one - in fact I was so ill I needed more than one, but it was right for me. They are out there, so keep positive.X

  • No processed food, no gluten, only biological meat max once a week, once or twice fatty fish and the other days vegetarian food but without milk. Use plantbased milk instead.

  • My story is much the same as that of Coco and Cann.

    I avoid meat, dairy, gluten, most grains, sugar, anything processed or anything artificial. I only eat wholesome 'real' foods, and avoid anything that doesn't suit me that I've found out through years of trial and error.

    Timing seems to play a part in it. For example, I can only eat fruit later in the day - if I have fruit for breakfast, my tummy gets very upset. And even then, I actually eat very little fruit nowadays as it doesn't seem to suit me much. I can eat beans such as canellini, black beans, chickpeas, but I can't have yellow split peas or kidney beans. I can eat some root veg such as small amounts of potato and carrot, but not turnip, and only very small amounts of sweet potato. It seems quite arbitrary, but there is bound to be a reason why! I'm pretty sure it is something to do with sugar content.

    I struggle with protein. I don't eat soya, and none of those concentrated protein powders work for me - they come straight back up! Even the really high quality pea protein or brown rice protein - doesn't work for me. I can eat some nuts and seeds in small quantities. Almonds are tricky, but OK if I soak them for a good few hours first. So I can eat some nut butters, which is useful. Also, like Cann, I liquidise a lot of things, so I have a beautiful nut mylk most days which is made from brazil nuts, dates, sesame seeds, hemp seeds, chia seeds, raw cacao. It digests fairly well, keeps me going for hours, and is a good way to get some protein and good fats into me.

    I can eat oats! Oats are my saviour, along with buckwheat as you can get useful buckwheat crackers, and very good oatcakes. Unfortunately oats don't seem good in the morning for me though, so no porridge for breakfast! Porridge at lunch sometimes!

    I eat a LOT of veggies! For example, today I had a big lunch as I'd been out in the cold. I had a blended soup which was mostly broccoli and courgette, very easy to digest, and also had a few Nairns oatcakes, with some fermented cashew nut cheese. Delicious! So I also eat some fermented foods - but only now and then as while they are very good for you, it seems you can have too much of a good thing.

    Currently I am trying fasting in the morning. I have one cup of very high quality coffee (Bulletproof - to ensure it is free from mould toxins) (and it's the first time in my life I have ever had coffee!) and I don't eat anything until after midday. I'd read that fasting in the morning can trigger healing. It seems to be suiting me so far, and surprisingly I'm hardly hungry at all.

    I also have ginger tea every day like Coco does, first thing in the morning, and I keep it topped up all day. And lots of other herbal teas, which seem to be soothing on my digestion.

    I have also successfully used Kinesiology through the years as Cann has mentioned, and I've found it amazing. As long as you find a good Kinesiologist. Some of them are not so good. Often I have been able to re-introduce a food after long periods of avoidance. And I was luckily enough to find a Naturopathic Doctor in Scotland (sadly he's gone back to the USA now), and he put me on what I think is a very good vitamin protocol too, so I'm still getting the nutrients I need despite the absorption issues which have arisen from the digestion not working very well.

    Good luck!

  • Thank you Lucy for taking the time to respond. You have a lot of good information. I am slowly trying to make changes as it seems when I try something drastic it never seems to stick. It's a big change for me. I think I'm addicted to sweets. I have to get off of them as I know how bad they are for me. Thank you again, Nan

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