January's Topic of the Month - Diet and Healthy E... - LUPUS UK


29,870 members26,440 posts

January's Topic of the Month - Diet and Healthy Eating (We want to hear your tips and experiences)

Paul_Howard profile image
47 Replies

We will be continuing our 'Topic of the Month' series throughout 2017 and our first topic of the year for January will be, 'Diet and Healthy Eating'.

The start of a New Year is frequently a time when people try to make improvements to their lifestyle and wellbeing, so we thought it would be a good time to discuss this topic.

Good nutrition is an important part of leading a healthy lifestyle and managing your lupus. Combined with physical activity, your diet can help you to reach and maintain a healthy weight, reduce your risk for other potential diseases (like heart disease and cancer), and promote your overall health.

We’d really love to hear if you have any tips for having a good diet and eating healthily. Do you have any good techniques for sticking to your chosen diet? Have you found that certain foods make you feel worse/better? Did you receive any expert advice about your diet?

We would like to hear all of your tips and experiences and we’ll compile them towards the end of the month for an article. Please share in the comments section below, or email paul@lupusuk.org.uk

The article itself will be posted on the LUPUS UK Blog at lupusuk.org.uk/category/blog/

All submissions will be anonymised.

47 Replies

Just as i was asking questions about diet! I will report my findings when i have some evidence, so watch that space.


Paul_Howard profile image
Paul_HowardPartner in reply to

Great. Thank you Hidden . We look forward to hearing how you get on.

Buffy14 profile image

I would love to know what type of diet I should be on for lupus nephritis , I have had this 15 years and never been referred to a dietician . Today was told my potassium level is 5.8 , they are putting it down to over indulging with Christmas cake or chocolate at new year , blood test done on 4th Jan . I have read that drugs like ibersartan can cause high potassium levels yet she didn't mention that , they put me on ibersartan 9 months ago , I also read high potassium can cause kidney failure .

Paul_Howard profile image
Paul_HowardPartner in reply to Buffy14

Hi Buffy14 ,

Have you been given any advice about foods to avoid due to your kidneys? I would recommend asking your consultant to refer you to the hospital dietician.

Buffy14 profile image
Buffy14 in reply to Paul_Howard

Amazingly I have never been given advice about diet I will ask when I see new kidney consultant who specialises in lupus.

quirkytizzy profile image
quirkytizzy in reply to Buffy14

I have nephrotic lupus as well. Six months later, I and my boyfriend are finally getting a handle on the diet required to treat this particular form of lupus.

What you should be looking at is what's called a "renal diet."

It focuses on foods and beverages that are easier for the kidneys to process. It's a difficult diet, as it's low protein, low potassium, low phosphates, low dairy, and low sodium - but it's not impossible. Spices have become our new playground with food, and it turns out you can get pretty creative with them and make good tasting meals.

You'll learn what foods have what effects on you pretty quickly. I've found too much sodium will either nearly immediately make my edema flair up and/or give me the flaming poops. (Invest in baby wipes, they can be a butt saver, lol.) Too much phosphates gives me headaches. Too much dairy makes me nauseas. That sort of thing.

It might seem really depressing at first, how strict this diet is. I still struggle with it, cravings and even on an emotional level. But it gets better and after a while, once your kidney baselines improve, you'll find you can indulge without too much damage.

I can't advise on your medication, as I'm not on that, but I can say that after six months of fighting and fussing and trial and error, I've found that following the renal diet is way, way easier than dealing with the consequences that come if I DON'T.

You can ask your doctor about specific numbers to hit and/or avoid with the renal diet. For instance, I am to try not to hit more than 400 mgs of sodium in one meal, for a total of about 2,200 altogether. 61 grams of protein, no more than half a cup of milk a day, etc. I imagine these numbers might be a bit different for you, depending on where your kidneys are.

Paul_Howard profile image
Paul_HowardPartner in reply to quirkytizzy

Thank you for sharing your experiences on this quirkytizzy .

Fennella02 profile image

My appetite isn't great and often one Cuppa Soup per day is all I feel like. I also often forget meals. I'm a strict vegetarian so I eat lots of cheese, quorn and fresh veg and drink plenty of milk. Fatty foods and spices give me awful GERD so I avoid, always. When my swallowing is bad, I need to avoid anything that sticks ('danger foods') so I turn to thick, homemade soups. I never snack between meals (against the advice of my NHS nutritionist) but I wouldn't manage the meals if I did. I also have some prescription high protein supplements to add to soups & shakes.

Paul_Howard profile image
Paul_HowardPartner in reply to Fennella02

Thank you for sharing your experiences Fennella02 . Have you experienced any weight loss because of your poor appetite or do the supplements help to negate this?

Fennella02 profile image
Fennella02 in reply to Paul_Howard

I am a bit underweight although the supplements help to stop my BMI (17) dropping much lower. I never experience hunger in the way that other people do.

PMRpro profile image
PMRpro in reply to Fennella02

That reminds me of a friend's daughter who had some quite obscure syndrome that meant she was never hungry so every night she had a nasogastric tube for continuous feeding. When she was about 20 she suddenly developed renal failure - and her mother did a living kidney donation. After the operation and a slightly rocky recovery - suddenly she could eat for Britain! No-one has any idea what the difference was but she finally put on some weight.

Silvergilt profile image

My diet is pretty good usually - but I have a very poor appetite and sometimes really find eating to be a huge struggle. I tend to keep things around I can graze on throughout the day - making sure to get protein and not just carbs. I make protein balls and bars to keep on hand when cooking (and even chewing) is difficult, but I have to be sure to get animal protein into my diet regularly as I don't digest plant protein well at all. I don't worry so much about certain foods, but try and concentrate on nutrients I'm lacking with advice from my rheumy, bloodwork, and a bit of trial and error.

With all the other pressure of function while ill, I follow more of a HAES (health at every size) way of doing things. I've got enough worries, so obsessing about my weight or my diet isn't something I want to add to that. I give myself what my body wants/needs and try to be a little kinder to it, and myself; it's going through enough as it is.

Paul_Howard profile image
Paul_HowardPartner in reply to Silvergilt

Hi Silvergilt ,

Thank you for sharing your experiences. I think that it is wise to not have an aggressive diet that can cause stress. Giving your body what it needs and listening to it is a good idea.

Lupiknits profile image

I'm in the can't manage to eat much state, which is getting worse. NHS dietitions seem to specialise in those struggling to lose rather than gain weight, in my experience. On my initial consultation I was given a booklet with advice based on eating a full english breakfast, then snacks like doughnuts and pork pies. My sons would be thrilled to get medical advice to eat like that! The nutrtional supplements they offer taste extremely artificial to me. I can only eat a little and very slowly, so get to "savour" every sip of it. I'm trying protein shakes I buy myself, which taste better, but just one of those is very filling. Doesn't leave room for much more.

Love to get any advice that would help. I'm malnourished, which prevents activity my mind longs for, but the dysphagia and sheer boredom of how long it takes to eat puts me at a loss.

Paul_Howard profile image
Paul_HowardPartner in reply to Lupiknits

Hi Lupiknits ,

Thank you for sharing your experiences. I hope that some other members of the community will have some good advice that they can share with you.

Do you have a very poor appetite, or do you struggle to eat for other reasons (can't swallow, nausea, etc.)?

Lupiknits profile image
Lupiknits in reply to Paul_Howard

I have both, Paul. On the rare occasions I do feel really hungry, I have to hold myself back as much as poss, because if the food get's "stuck" and has to come back again, I really go off eating whatever it was. Over time, the very slightest acidic/ spicy food is just like battery acid once I swallow.

custardpot profile image

I follow Slimming World Healthy Eating and lost 7 Stone. Unfortunately I stopped going and put on 1.5 Stone but am back at meetings now to lose that.

I would recommend Slimming World to anyone. It can help anyone even if they are on Steroids or other medication. You don't need to exercise either, I cannot do any exercise.

Paul_Howard profile image
Paul_HowardPartner in reply to custardpot

Hi custardpot . Thank you for sharing your experiences. You lost a lot of weight through slimming world!

Lupiknits profile image
Lupiknits in reply to custardpot

I lost an incredible amount of weight with Slimming World back in the day. Can't recommend it highly enough! Healthy, lots of choice and no need to feel hungry.

Well done custardpot on a brilliant achievement. Love your name! Oh, and that reminds me I have some Ambrosia in the cupboard which should slide down well. 💐

PMRpro profile image

For those who have the problem of gaining weight when on corticosteroids: cutting carbohydrate significantly does work to help avoid weight gain (especially the fat deposits in the usual places) and helps you lose weight when you have already put it on, even while still taking the steroids.

Paul_Howard profile image
Paul_HowardPartner in reply to PMRpro

Thanks for sharing this tip PMRpro . This is very relevant to a lot of people.

4373 profile image

Diet literally saved my life! I am seventy-three and have had allergy induced asthma since I was two. Back in those days very little was known about asthma, but in order to breathe I was on heavy meds which probably no longer exist, having been replaced by different ones. Used to live in ER until I literally got fed up with everything. Yes, the drugs saved my life, but they kept me sick. Started reading everything I could get my hands on from well known, highly regarded sources to those out of the box, fringe thinkers.

I cut way back on meat and animal products in general and do not eat processed food period. No asthma attacks for five years. No, I did not out grow it! Latest problem was bruising and chest pain. Peanuts were the culprit, as I was eating way too many. Got rid of the peanuts or should say I now eat them in moderation. My reaction was such that ANA test showed positive and I was sent to a rheumy due to indications of Lupus. Ended up having a lovely conversation with him and he telling me I was fine. Have been treated for dry eye and the opthamologist, whom I admire, indicated he thinks diet plays a role, but it has never been proven. At this point I decided to experiment by cutting back on animal products, especially meat. Dry eye gone. Red eyes gone. I can hardly wait for my annual wellness exam with him. Morning stiffness gone. I don't take pills of any type except for some vitamins. My senior restorative yoga instructor says I have the flexability of a thirty year old!

My doctor cannot believe these miracles as when I first went to her I was very, very ill. Yes, it takes work on your part, but it is worth it! When I went for my colonoscopy the doctor gave me a high five when I told him I was pill free! Enough! All medicine, even vitamins, have side effects. Listen to your body. Do they feed race horses garbage?

PMRpro profile image
PMRpro in reply to 4373

My granddaughter has brittle asthma - has been in resus several times with doctors panicking because they can't control it. She was permanently on high dose steroids as the only thing that kept her alive and went from a UK size 6/8 to UK 18 - at the age of 14. About a year ago she decided to go veggie out of conviction - and a few months later decided to go the whole hog and become vegan. The asthma has improved out of sight - hasn't gone entirely, she was in for a couple of nights before xmas as the result of an infection that triggered an attack. She has lost a fair bit of weight as well,

I've always been a bit sceptical about claims diet "cured me" - but there are places where diet definitely can make a major difference.

4373 profile image

So glad to hear your good news. We also clean our house with white vinegar and am always on the look out for healthy skin products. Just found one named Badger in the US. Just think of all the crazy things our bodies are subjected to from toxins in our clothing, drinking water, air, food and furniture, especially mattresses where we have heavy exposure. I would never go so far as to say there is a miracle cure with diet, but I will say this improvement will take a lot of hard work and education on her part. Listening to one's body is very, very important. The rheumy really is a believer in Transcendental Meditation and I am now trying to practice it. I am also aware of the huge amount of stress in our daily lives, so limit myself to only TWO duties of problem solving per day. Most things are just not that important. However, not wanting to be stupid about my asthma, I always have an emergency inhaler with me. Haven't used one for over five years, but......If the generic one by Teva pharmaceuticals doesn't work for her, it didn't work for me, the HFA system is different and this was proven to me by tiring of arguing with pharmacists and doctors that Ventolin by Glaxo and Teva's brand were the same. A chemist at Glaxo explained that the delivery system is different. I cannot use Tevas (many people can), but Ventolin by Glaxo is great for me.

lupie46 profile image

I've been vegetarian 34 years. Since diagnosis, I have developed an intolerance to chilli and alcohol. Other than that I eat healthily. If my skin flares up, I have to avoid tomatoes and caffeine. It's a complex condition we've been dealt!

Paul_Howard profile image
Paul_HowardPartner in reply to lupie46

Thank you for sharing lupie46

SquarePegGuy profile image
SquarePegGuy in reply to lupie46

Interesting... Chili is mostly Peppers and Tomatoes, which are both nightshades, which can aggravate (or cause) problems for some people. Two other popular nightshades are eggplant and white potato. paleoleap.com/nightshades/

littleeffie profile image

I have mentioned in replies to posts that I am and have been unable to eat any food stuffs for approx 8 months.It took a while for this to be taken seriously and given the "ask your next or other consultant" type of answer.

I was prescribed nutri complete type shakes twice daily by my hero of a GP while investigations have been on going.After no help from other depts or answers my GP referred me to dietician who has increased this to 3 shakes a day.

Still no closer to finding solution although more tests have now been requested.Previous gastroscopy and barium swallow.

I was previous to this year a happily healthy vegetarian at a spot on weight/bmi .l did however have to avoid fatty foods and spices or pay the price.Started only tolerating soups or bland soft foods before body rejecting anything but milk.

I have just about stopped losing weight but have a bmi of 15 having lost over a third of my body weight.

I believe the real problem i am up against is having multiple conditions that may or may not be causing it so no singular department can or has to deal with it.

The above is a big part of the reason I have been a little quiet on here lately.

Lupiknits profile image

Big hug littleeffie x

littleeffie profile image
littleeffie in reply to Lupiknits


The hug really helped😊

Elfie1 profile image

Hi ,we are vegetarian in our house almost vegan no milk (which causes a lot acid) I find any of the milk substitutes e.g.. almond or light soya is very gentle on the stomach.otherwise we never mix protein with carbs. So protein and veg or pulses or veg or pulses with carbs.seems to be much more digestible.And lots of water daily .oh and don't forget a regular treat ha ha otherwise life would be. pretty miserable . Elfie

Paul_Howard profile image
Paul_HowardPartner in reply to Elfie1

Thank you for sharing your experiences Elfie1 . Have you noticed an improvement in your lupus since you stopped mixing protein with carbs? Did you notice this solution yourself, or was it suggested to you by somebody else?

Elfie1 profile image
Elfie1 in reply to Paul_Howard

Hi paul ,i've always been interested in food and could never tolerate eating a big meal . I read about seperation diets in a german magazine and tried it .Icertainly dont feel bloated or too full anymore ,but then we've always eaten little and often. I can't say that it's made any difference to my Uctd.or APS. Thanks Elfie

Isme profile image

I tend to suffer from Lupus fatigue, about a year ago I made some changes to my diet. I cut out as many processed foods as I can and start the day with porridge with blue/red fruits I.e blackberries, blueberries or cranberries. I now go to bed and get up at the same times everyday and I started walking everyday too.

I feel much better, sleep better too. X

Paul_Howard profile image
Paul_HowardPartner in reply to Isme

Hi Isme ,

Thank you for sharing. It is great to hear that these changes have helped you to feel better.

LouLamb profile image

I don't have no problem eating food . I have a problem with if I think about food . If I think about food it makes me feel sick .

Paul_Howard profile image
Paul_HowardPartner in reply to LouLamb

Thank you for sharing LouLamb . Are there any particular foods that make you feel sick if you think about them, or is it all food?

LouLamb profile image
LouLamb in reply to Paul_Howard

When I think about all foods . A couple months ago it got so bad that I hardly ate . I didn't have dinner for ages just because of the thought

KRutherford profile image

My lupus symptoms began while I was following a vegan diet (coincidence, I think, not a trigger), followed by severe gluten intolerance, fructose malabsorption and leaky gut. I found that the steps necessary to slowly heal the intestinal lining also lowered my inflammatory load and helped slow the progression of lupus symptoms for a while. Now , some years down the road, if I stray too much from a non-processed, gluten free , lactose free diet I have increased symptoms .

I have poor appetite when flaring and difficulty controlling appetite while on prednisone. I have found that smaller portions of a Mediterranean gluten free based diet works the best overall. I also have benefitted from bone broth.

I have been recommended by various health professionals: Paleo, vegan, Ayurvedic, Mediterranean, gluten free/ nightshade free, low FODMAP. So... I go with the "listen to your own body" theory!

Paul_Howard profile image
Paul_HowardPartner in reply to KRutherford

Thank you for sharing your experiences and advice KRutherford .

SquarePegGuy profile image

Unfortunately my wife (who might have SLE) can't stick to a diet for very long. When you're battling fatigue, pain, brain fog, etc. it's hard to put the effort into making meals from scratch, which is necessary for most of these anti-inflammatory diets, such as the Amy Myers' diet. (amymyersmd.com/) Even if you stick to raw foods that don't require much preparation, it can be difficult to keep going to the store or farm stand for fresh produce.

Prepared / processed foods are ready-to-eat and have a very long shelf life -- so convenient -- but their ingredients may include GMO or other inflammatory foods.

I've heard good things from others about avoiding fruits/veggies from the nightshade family of plants. Also turmeric is good to include in the diet.

There's also a special version of The Blood Type Diet BTD that's specifically tailored to address auto-immune issues. Again, my wife has not been on it long enough to see results. All I can say is that I've heard good things about it. I've tried the standard BTD myself and found that some of the foods I'm supposed to avoid (wheat, corn, soy, dairy) actually cause brain fog and joint pain in me.

Paul_Howard profile image
Paul_HowardPartner in reply to SquarePegGuy

Hi SquarePegGuy ,

Thank you for sharing the experiences of you and your wife. Certainly sticking to a strict diet can be difficult, especially when combatting symptoms like fatigue and pain. It is important to listen to your body and do what you can to eat healthily. Sometimes preparing large batches of meals and freezing them can be a good way to cope better on bad days.

I would urge caution with fad diets like 'The Blood Type Diet'. The British Dietetic Association verdict on this is that it won't work. They suggest that the diet could lead to significant deficiencies such as calcium. You lose weight on this diet because your calorie intake is very restricted and this diet is not sustainable in the long term.

Dietitian Sasha Watkins says, "The diet involves cutting out food groups based on your blood type in the belief it will make your body more efficient at digesting and absorbing your food".

She warns, “There is no scientific evidence to support this theory and this diet is really based on pseudoscience.

“By avoiding nutritious food like dairy you have an increased risk of nutrient deficiencies which is not great for your health in the long term when you might get conditions like osteoporosis."

SquarePegGuy profile image
SquarePegGuy in reply to Paul_Howard

Thank you for your concern. Even blood type O is allowed a limited amount of dairy: ghee is beneficial, and some cheeses such as mozzarella, farmer, feta, goat are "neutral".

It may be true that there's no scientific evidence to support BTD, but that's because it hasn't been tested. Conducting a good double-blind study of any diet is nearly impossible. Show me a good study that supports the ADA diet recommended to diabetics. It's dominated by carbohydrates and forces the patient to stay on insulin. Before insulin, the way to treat diabetes was to avoid all carbs. Today, with home testing of glucose, patients can settle in to a low carb (not no carb) way of eating that minimizes their dependence on insulin.

Still I'll understand if you don't want to list BTD in your summary. I'm curious, then, what anti-inflammatory diet you'd deem appropriate, since they all call for dairy-free eating? Given a choice, I'd rather keep inflammation to a minimum with diet that eliminates dairy entirely and suffer from calcium (or whatever) deficiency (which I could correct by increasing leafy greens and taking a supplement). Isn't that a better alternative than taking prednisone or methotrexate?

Paul_Howard profile image
Paul_HowardPartner in reply to SquarePegGuy

I rely upon other organisations such as The British Dietetic Association to provide reliable information and advice about diets. It may be that there is no evidence to support the BTD yet because the studies haven't be conducted, but they also state that there is no scientific-basis for it to work.

With regards to diets for those with diabetes, there is a wide range of evidence to support these. Here is a report which collects some of this evidence - diabetes.org.uk/Documents/R...

The aim of this article will not be to advise people about which diet would be the most suitable for them. This is not possible for us to do and it also would not be appropriate. We aim to signpost people towards evidence-based information and share the experiences of some people who have tried various changes to their diets to try and manage their symptoms.

If somebody is able to manage their lupus symptoms through diet and lifestyle alone, then yes, that is obviously optimal. However, for many people with lupus this would not be possible and they are likely to require additional treatment.

PMRpro profile image
PMRpro in reply to Paul_Howard

Something at the back of my mind says that someone HAS looked at the BTD and found it's woo ... ER, sorry, not a valid theory.

Here's a link to the article reporting the study:


It is the subject's ability to stick to a better diet that is low in carbs that makes the difference.

Of course, if you have invested a lot (time and money) it is an incentive to stick to the diet/find evidence it worked for you. But it is nothing to do with your blood group.

elizaSunflower profile image

I've been following a Low Carb High Fat diet recently. It has helped tremendously with my brain fog, general energy level and mood. I have to be careful now because I feel so much better that I want to do more, which can bring about debilitating fatigue. However, this diet is making my skin issues and joints worse. I know I have increased my dairy intake, so I am going to experiment with keeping the same diet but cutting out dairy. I'm trying to follow the advice from a coworker and listen to my body as I make lifestyle adjustments.

Paul_Howard profile image
Paul_HowardPartner in reply to elizaSunflower

Hi elizaSunflower ,

Thank you so much for sharing your experiences. I hope that you are able to find the correct balance for your diet which will suit you personally. Please keep us updated with how you are getting on.

You may also like...