Anca vasculitis and diet: Hi everyone, my... - Vasculitis UK

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Anca vasculitis and diet

Christina1960 profile image

Hi everyone, my husband has anca vasculitis and I've been trying out Holistic approaches with him. Trying to use food as medicine

Since it's well known that sugar and carbs are inflammatory foods, do you watch how much you consume? And if you do, does it seem to be helping?

Do you have a certain diet regime that you follow? Please share

32 Replies

Hi Christina,

There is no evidence that diet can help in the treatment of Vasculitis. I suspect that's because they are exceptionally complex diseases with multi factorial causes.

Saying that there is evidence that a healthy diet with lots of veg, lean protein, complex carbohydrates, eggs, dairy and fruit benefits everyone.

Vasculitis can predispose to heart problems so as much exercise as your husband can tolerate and good blood pressure control is important. Prednisolone can increase both cholesterol and blood sugar as it can change the way we process carbs, extra weight can place pressure on joints.

I try and eat as healthily as I can but allow myself cake or chocolate every day too!

Christina1960 profile image
Christina1960 in reply to

Thank you Keyes, my husband also has damage done to his kidneys and I believe he should be careful with exercise. He does walk our fur baby a few times a day and hopefully that is enough to do some good. But I agree he should do more. I liked your diet suggestion also

Hope you don't mind me asking, but has your kidneys been affected? I feel in charge of keeping my husband healthy (it's a big job) and exhausting at times. Decisions aren't as easily made with supplements when was has to factor in CKD. He also takes Aranesp shots to keep his hemoglobin up, but the side effects are horrible. Heart disease is one. Now I'm hearing a lot of doctors are against it but that's another subject. I have someone helping me to figure out a more natural approach on that issue as well.

Due to my experience, I'm wonder if the lack of evidence statement came from a doctor. The more one researches holistic medicine the more we realize doctors are ignorant to it. I believe that what we eat and avoid has a huge impact on our health, no matter what the issue.

Since Vasculitis is an inflammatory autoimmune disorder, it makes sense if we can control the inflammation that It will help overall. ❤

in reply to Christina1960

I don't have kidney involvement and my Vasculitis variant is different to ANCA associated types. I do know that depending on the damage done a renal diet may have to be followed but a renal dietician is the best person to advise on that.

The lack of evidence statement is true, there is no double blinded placebo controlled trials to support the role of diet in Vasculitis. Anectdote has no place, what exactly is " holistic medicine " , what qualifications do practitioners have and how much understanding of Vasculitis, renal failure and drug interactions? I am afraid I am very sceptical as many " practitioners " charge an exorbitant amount of money to desperate patients who understandably want to find a cure or a way to avoid toxic medications.

I remember when Erythropoietin first appeared on the scene ( I used to be a nurse ) and the difference it made to renal anemia. I am not sure what natural measures can induce the body to produce erythropoietin when the kidneys are damaged. Unfortunately no medication comes without side effects and everything should be looked at from a risk V benefit stance. It's important to remember that ANCA associated Vasculitis had a 100% mortality rate before the advent of prednisolone etc.

I hear what you are saying about inflammation but there isn't a shred of peer reviewed evidence to prove that food can influence levels of inflammation in the body much as we would like it to.

Christina1960 profile image
Christina1960 in reply to

Keyes, Thank you for your reply. . I agree that western medicine plays a huge part in saving people's lives. There no doubt in my mind that Predisone and Rituxamib saved my husbands life.

SeaSongLyn profile image
SeaSongLyn in reply to

Just a note to say that "Anecdotal Evidence" is people telling their experiences that have not undone rigourous examination. It does not however mean that people's stories are invalid and should not be writen. If this were the case, such blogs as this would not exist, the whole idea is to share experience and learn from each other. ie take not of "Anecdotal Evidence".

It does not mean that we should stop taking medicine. If you want to know what Holistic Medicine is, I suggest you read about it, or do a course, or even a degree! The fact that some forms of Holistic Therapy are unsuitable for specific illnesses and indeed, would not be for me, does not all froms of Holism are as you describe. Dont go to a Chiropractor if you need a neurosurgeon and dont "throw the baby out with the bathwater"!

PMRpro profile image
PMRpro in reply to Christina1960

All "holistic" means is interconnectedness. The diet concept has a role to play - but it sure as eggs is eggs is NOT the entire story when it comes to potentially fatal conditions. I don't care what ANY "naturopath" claims.

I'm very grateful to western medicine and its chemical poisons - wouldn't be here, neither would my husband, either daughter or my granddaughter. Diet though contributes to the granddaughter's current improved state of health. But without the pharmaceuticals she wouldn't be here at all to be able to improve things with diet.

I got my kid to a naturopathy doc and the say cut out dairy

I'll let you know as I'm about to try it. Holistic all the way.

Christina1960 profile image
Christina1960 in reply to greg31

Hi Greg31, I heard to cut out dairy also. I heard Sugar and carbs are other foods to avoid since they cause inflammation. Just a thought. Unfortunately it doesn't leave much left to eat..I know

Please keep me posted on your sons condition. I'm very interested on how avoidance of dairy is helping.

Together in this group, we can help each other out tremendously

Ps. You gave me the idea to look for a naturalpathic doctor also. 🌻

in reply to Christina1960

Please see my response above.

in reply to greg31

There have been many peer reviewed scientific studies which have investigated dairy products as potential irritants, especially for people with respiratory conditions and there is absolutely no evidence of any benefit to removing them from diet.

For any patient who is or has been taking corticosteroids, reducing calcium intake could cause harm as large doses of oral prednisolone and methyl prednisolone are known to reduce bone density.

Evidence is emerging that some types of vasculitis may cause long term major organ damage (even when in remission) so a lower-fat diet is likely to be a sensible precaution to help combat heart disease.

There is a far greater likelihood that it's the agri-chemicals used in modern day food production that are causing issues from dairy products, particularly in the case of antibiotic resistance due to the drugs given to cows.

A well balanced, organic diet is far more likely to benefit a vasculitis patient than removing any dairy products.

PMRpro profile image
PMRpro in reply to

There is plenty of evidence nowadays to suggest the low fat diet is perhaps NOT particularly heart healthy. And while you may quote peer-reviewed studies, peer review does not mean the research is correct - it means that the peer reviewers were of a similar view. There has been a great deal of peer-reviewed epidemiological dietary rubbish published since Ancel Keys first published his hypothesis that that dietary saturated fat causes cardiovascular heart disease and should be avoided in 1958. If you didn't agree with that and support the concept of low fat/high carb as healthy you were ostracised - you lost your funding because of the very powerful food manufacturing lobby. No funding, no research...

I won't comment in general but my granddaughter turned vegan just over a year ago. She has severe brittle asthma and has been in resus on at least 4 or 5 occasions and circling the drain with doctors having no idea how to stabilise her and was admitted every couple of weeks. She was totally compliant with her medication - her mother is a nurse and worked on the chest ward - and on high dose steroids as the only way to keep her alive. Since becoming vegan she has had far fewer episodes, only 2 admissions to hospital, has lost about 20kg in weight and can do more than cross the road without being out of breath.

Don't tell me it isn't worth trying omitting dairy in pulmonary conditions. If it doesn't work, fine, go back to a general diet. If it does work - you are winning.

in reply to PMRpro

@PMRpro: I have to say find your tone is rather aggressive and unnecessary, especially as I'm not 'telling' anyone what to do other than suggesting to use an evidence base when making decisions. As a post-graduate biologist with a specialism in genetics, who happens to have AAV, I think I'm reasonably well qualified to promote the consideration of peer reviewed literature and when compared to the advice of so-called holistic therapists who have no medical, let alone scientific training, I know where I'll look to guide my decisions.

I happen to be vegetarian and keep my fat and dairy intake to levels that I feel is healthiest for me based on regular monitoring of my vitals. From personal involvement with the research into agri-chemicals in the human food chain, there's growing evidence that these may well be playing a part in many auto-immune conditions and may prove more damaging than dairy products per se.

As far as risk-benefits are concerned these are decisions which every person has the right to exercise and as a representative of V-UK, it would be wrong for any of us to promote dietary 'winners' without a recommendation for patients to liaise with their specialist before embarking on major change.

PMRpro profile image
PMRpro in reply to

I'm sorry if you find my style of writing "aggressive" - it wasn't meant to be. And I certainly wouldn't support the holistic nutritionist line either. However - you aren't the only person on the forums with a science degree - and I and my husband have come across a fair number of very dodgy peer-reviewed publications in our time.

xz3sgn profile image
xz3sgn in reply to

Hi Keyes,

I am writing to you to discuss my problem. I was diagnosed with MPO (AAV) and my kidneys are impaired. Serum Creatinine had gone up to 380 , Cyclophosphomide & Predisnolene brought creatinine down within 4 mnths to reasonable level. There was small amount of blood in urine which also disappeared in 4 months. The treatment started in Aug 2915. After three months the medication was reduced and Azathioprine replaced cyclophosphomide. Now I'm on 5mg Prednisolone & 100 mg Azathioprine. Luckily there had been no flare up in the last 2 1/2 years. I go for regular walk with no restriction on my lifestyle. The side effects of Predlisolene & Azathioprine surfaced when I had to get a lesion removed and had strong antibiotics to get rid of fungal infection on my finger nails. My consultant also debates when to start reducing the medication further. ANCA content has come down from 12 titre to 6. It remained low throughout. Creatinine is stabilised around 126 that was the reading way back in 2007. My body response and mind tells me that it is right time for me to go off medication ( weaning down will be slow for steroid ) . ANCA is still present and the disease is definitely in remission for more than 2 yrs but the consultant is reluctant. Presence of ANCA itself is not the only cause for the disease and there are cases when patients have vasculitis without ANCA. I wish to discontinue now to avoid the side effects and there is no disease and if there is a flare up I would go for Rituximab. What is your opinion ? I know that you are highly qualified and battling it for 17 yrs, your opinion will help me to put across my point strongly to consulatnt in my next visit

in reply to PMRpro

I am happy to hear that your granddaughter's condition has improved since she started to follow a vegan diet. But do bear in mind that as a vegan she will have no intake of Vit B12. Luckily, her body will have a vast storage from the time she was not vegan, but it will diminish over time. I am writing this as I have recently been diagnosed with very low level of Vit B12 and to say that the symptoms (and potentially permanent effects) are awful is to put it mildly. This creeps up on you, so it takes a while to diagnose.

Whatever diet option your granddaughter wishes to follow, I suggest she also takes Vit B12 supplements as long as she does not eat any fish, meat, poultry, eggs or milk produce.

PMRpro profile image
PMRpro in reply to

Good vegans know where they need supplements - and knowing both her and her mother that will be well in hand.

Another vegan friend went out and panic-bought Marmite when Tesco were messing about last year. It is the vegan standby for B12 - and it is, believe it or not, vegan!

Hi I drink fresh pineapple juice it has bromein in it which is a brilliant enzyme reduces inflammation. I take turmeric tablets as well , you can make a golden paste that's very effective in reducing inflammation turmeric, black pepper and coconut oil (recipe is on the Internet) I make up in the coffee bean trays and freeze them. You take one every 4/5 hours absolutely brilliant :) kind regards Diane x

Hi Reikiperson, loved your reply! I'm going to look into the pineaple juice. I heard a lot about turmeric also but I'm not sure if it's safe for someone who has CKD.

Are there any other remedies you'd like to share? 👍

Hiya Christina one of my favourite ways of reducing inflamation is grounding my energy using an earthing mat lots of information on the Internet about it. I bought the book Earthing by Clinton Ober and my husband and I have his and hers earthing mats :) You can also just put your feet straight onto the earth( bare feet ) or on the beach. Diane x

Thanks Diane, I've heard of grounding but not a earthing mat. Sounds like something I'd like for myself.m also. Do you notice a difference? I'm def going to look into it. Thank you so much for sharing! I look forward to any other ideas you have.

Just curious do you have anca vasculitis?

Yes after 3 months of using my pv came down to normal ranges it hadn't been like that for years ! I also self heal with reiki its brilliant at lifting both mental pain and physical pain ! I volunteer in a hospice and there is always a queue in the day care for reiki :) I'm so grateful for being able to use it on myself and others x

We all need our own healing tool box everyone is individual so you have to find whats right for you, medication, diet, I'm with you on a holistic approach for everyone . Diane x

Oh sorry missed that last bit I've got cerebral vasculitis had it since 2004

I use grape seed oil as a base and add essential oils. Lemon, carrot, tea tree and others as needed. I apply this to my legs to help with the scarring. Also, I agree that diet is extremely important. I noticed a huge improvement when I stopped eating animal products. This has been the China study. Best of luck

There is increasing scientific evidence regarding a relationship between our immune system and the gut (bacteria). You may want to read up about healthy gut flora.

I haven't been able to make my ANCA vasculitis go away with a specific diet but I (subjectively) feel less fatigued, more active and, since my version has hit the intestine and in the past, also the liver, have less digestive problems since I cut down/exclude sugar, processed food and alcohol.

Or the other way round: Generally, I eat lots of veg and fruit, whole wheat bread, brown rice, whole wheat pasta, porridge oats, low fat dairy in moderation, some fish, almost no meat, rarely eggs.

Lucky for me I am married to a dedicated veg/fruit gardener. I am not a diet fanatic and I do eat the odd sweet and dip a biscuits in my tea now and then.

Also, I take Vit B12 supplements and have my iron/ferritin checked annually.

For a while at first, I included all sorts of holistic stuff into my diet based on what friends and dr google suggested until my rheumatologist asked me to check with her first as some things can cause the immune system to be over stimulated which is not necessarily a good idea when you have an autoimmune disease (which is due to an out-of-line immune system).

One example was ginger tea which I drank daily in rather large quantities as I was told it had wonderful anti inflammatory and immune strengthening properties - which in my case resulted in a flare up.

What's with eggs. They are no good? Thanks for the info. Western medicine is amazing won't knock it but it's one sided. There is no balance. Going holistic or naturopath gives another outlook and hope. Therefore making one happier and less stressed. I strongly believe food has a role in people's bodies just like our environment and how we deal with life. It all plays a part in how our body runs. And I guess myself and everyone on here are living proof as vasculitis is still unknown territory for the most part. I'm curious to see what others do as well. Cause I'm getting wrinkly in this hot tub. And going to the beach really works lol. That's cool I am looking into the earthing mat.

in reply to greg31

Nothing against eggs, Greg, I just have a hard time digesting them.

One of the doctors along the way (I was first diagnosed 17 years ago) urged me to approach this challenging disease in three ways:

1 medicines: as little as possible but with the awareness that without it things could get tough pretty quickly

2 explore diet: whatever is good for you, find out as you go along without getting too hung up about rules but be alert and honest, don't use food to distract or compensate

3 look after your soul/mind

As for 3, I have explored mindfulness, the Kabat-Zinn method, and it helped to calm and focus my worried mind and now I am stuck with it.

I also cycle, not in a lycra-clad, obsessive sporty kind of way. I have always cycled as a means of getting from a to b and for me even a short slow dawdle along the river in the evening is glorious freedom and relaxation.

in reply to greg31

I'd just add a comment to your suggestion that going to the beach or anywhere sunny whilst taking MMF can be a dangerous thing to do without extreme protection.

Hi Christina good to meet you i am same but Wenegers Vasculitis but it scarred my Kidneys so i have Stage3/4 CKD so diet is important to me i had discussions with Dietician before i left hospital some 18 months ago and the main issues were i dont use salt any more firstly but other things like red meat,cheese,for example i have cut down to a minimum same with bacon and sausages.No processed meat at all.Eat chicken and fish now and loads of veggies.I also learnt that i can eat as much spicy food which was a bonus as i do enjoy this.I also enjoy Pasta which is good but in moderation.But now i have got used to it all and it has become second nature.Coupled with this i get as much fresh air as possible and walking helps.As a side issue i am having second round of Rituximab next week to hopefully keep me in remission.Take care guys hope this helps.

If your husband has significant kidney damage please do get advice from a renal dietician. Many things popularly perceived as "healthy" e.g. Muesli, pulses, fruit, dark chocolate, can be very damaging for people with compromised kidney function and are best eaten only in strict moderation. And there are weird anomalies e.g. Cream is better than milk or custard (!) So generally being "healthy" might not be the best idea for someone with severely compromised kidney function. Nb my husband is on dialysis awaiting transplant, after Microscopic Polyangiitis (an ANCA vasculitis) destroyed his kidneys last year.

Never said stop meds..... and bring an umbrella if it's sunny or raining. Enjoy life people. Be positive. Just try eating healthy.... which means try just try...for the love of life. No animal by products. It's the hardest thing I've ever done. Food is everywhere and majority of it is bad. Go back to the old school. No more of the crud. Hey if you want to be a negative Nancy fine. But all I'm saying is you are what you eat.......... it can't hurt to just eat healthy. My life until now I lived to eat. Now I watch what goes into my body and eat to live.

There is quite a lot of evidence that diet does impact your health including autoimmune conditions, though not specifically Vasculitis. Professor Tim Spector's twin study and the Zoe project investigating the gut biome and impact on health is a case in point. Another interesting angle is that of Dr William Li's book , Eat to Beat Disease. Whilst I don't follow any specific diet, I do try to take a variety of raw and cooked fruit and vegetables, and fibre daily (I don't exclude meat), with the view that if I am generally healthy, I can fight off infections and can cope with the Vasculitis better.

Hi Christina! Saw Your post was from 5 years back, just wanted to say, in case you are still following this thread, that I have done well on a vegan diet that is glutenfree, and mostly grain free. I also avoid gmos, like soy and Corn. Try to keep foods light and fresh, with a lot of fruits, and some veg ang greens ideally. Medical medium gave me some answers, though I was already pretty strict. I have IGA vasculitis, that affected kidneys and skin. Homeopathy was also important for my general health. All the numbers have been better the last years, except the creatinine was high last time, but that was during a strict cleanse, could have been I had been drinking too little. But my kidney dr is curious of what I have done, I don’t think they often see people being better after 10+ years of symptoms. Hope it can be of any help🙏🏻

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