Gut health and autoimmunity : Hi I'm new to the site... - NRAS

NRAS
26,231 members30,064 posts

Gut health and autoimmunity

Hi I'm new to the site and to RA - was diagnosed last November and have just started weekly methotrexate injections. I'm trying to help myself through diet (ultimately hoping to get off medication somewhere down the line - I can but hope!!). There's lots of info on the internet around healing the gut and the role the microbiome plays in autoimmune conditions so am wondering why RA doctors and nurses (I've seen 2 doctors and 3 RA nurses) are all completely dismissive of the idea that food plays a part in autoimmunity. There doesn't seem to be any research at all (please correct me if I'm wrong) into gut health and autoimmunity and I just don't understand why. It really frustrates me that we're just handed drugs (although I'm grateful for them) - the first nurse I saw literally said 'don't overthink it just take the methotrexate'. Does anyone else have any thoughts on this?

69 Replies
oldestnewest

I haven't tried any diet but some people say that the Paddison program works. You can get it online. Keep posting if you try it. Good luck.

1 like
Reply

Welcome Dobcross1!

A healthy diet really helps by simply maximising ability to cope with DMARD drugs.

There are also spices, minerals and herbs that help reduce inflammation or supplement the body with nutrients that might be lacking.

Worth searching online!

2 likes
Reply

Good up to date rheumies & nurses are aware of the importance of healthy living (it's not just diet). Mine certainly stressed this at my very first appointment, being clear that I had a role to play.

Her view, which I support, is that there is a heirarchy of things you can do to help yourself. And not much point focusing on number 6 if you haven't sorted 1-5 first. So number 1 is to stop smoking if you do. Then weight, then sleep, then exercise, then healthy food in general (ie no sugary fatty junk just nutritious stuff). And then you can delve deeper into the sorts of specific foods that suit you and work for you.

And there is some growing research on the microbiome & autoimmunity.

I think one of the issues for doctors is there has been so much about specific foods/supplements that is not supported by any evidence at all, that they now switch off at the word "diet". And their main aim is to get you into remission in the quickest, simplest (for them) way possible. So knowing how hard it is to get people to stick to even taking pills, there is no way they will spend time discussing the importance of eating or not eating pinapple pips. Sad, but the NHS doesn't have the luxury of being able to promote secondary options.

11 likes
Reply

I do not see that seeing the patients situation holisticly would demotivate people, on the contrary a doctor who would show a real interest in the patients whole health situation also and especially after perscribing meds with effects that in many ways changes the lives of patients, would motivate people more to be on top of their own situation and treatment.

True enough that the main target for doctors is to get the patient into remission as soon as possible, but solely by handing out meds may not be the most effective way since reality being that it usually takes a long time to find relief and not always remission.

2 likes
Reply

No, but the funding situation in NHS means that the approach that requires less of a doctor's time will be preferred. I have a huge respect for Dr Rangan Chatterjee, and even he says that he cannot apply functional medecine to many of the patients in his own practice.

It needs people to accept that a national health service of that sort will cost more.

1 like
Reply

Yes I understand that. I think that because functional medicine is quite new here (and really expensive) people don't know who to turn to. Perhaps if anyone has good experiences with such a doctor they could recommend.

Reply

There is a hospital in London for integrated medicine. In other words using a more holistic approach to RA as well as meds.It is under NHS so you can use their rheumatology department. Just tell your GP that you want to have a consultation there. There was someone on an other forum who was very pleased with her experience. Don't understand why more RA sufferers in London area are not using this hospital. ( It has been the hospital of the Royal family for a very long time).

3 likes
Reply

Oh great thanks. Also delighted to find out from another post that gut research in RA is being done. Encouraging!

1 like
Reply

Gut health is essential, no question about it. Looking at gut health from a wider perspective in RA is very important. More often than not our gut health is compromised by the inflammatory situation as such. It has been shown that our metabolism has been affected in many ways and we can no longer look at our dietary and supplementary needs the same way as in health. It has been shown that the inflammatory situation depleats certain vitamines and minerals and hormones and supplementing with these does have a positive effect on general health. For some RA sufferers food allergies are important to identify and foods that cause them eliminated, since these do accelerate and trigger inflammation. Also because of increased nutritional absorbtion problems and digestive issues one should take care not to eat foods the gut cannot manage properly.

It becomes even harder to maintain good gut health with the meds we are taking to control inflammation and pain since these are in fact a strain on the already compromised gut health.

There is a common misunderstanding that the immunesystem is especially strong in RA. The fact is that the immunesystem is dysfunctional and cannot stop the inflammatory reaction because the adapive and innate immuneresponse is out of sync. You could say that the innate immunereaction is overactive and the adaptive immunerespose can no longer help in calming the inflammation. This in turn causes an ongoing strain on the metabolism with different far reaching consequences. We can try to counteract these by supplementing depleated vitamines, getting enough nutrion, supplementing with hormones, excersizing and so on.

It is also a well known fact that certain enviromental factors are a big strain for our metabolism and should be eliminated as much as possible.

In short anything we can do to decrease stress on our organism is always good, supplementing is never bad when we understand what we are supporting in our body. There is no fear that this would affect badly on our immunesystem, just the contrary.

Yes it is really sad that rheumatologists have not incorporated all important information on how to take care of your body. There are however Functional medicine doctors that can help you with this. I think as it is at present this help you cannot get from rheumies.

11 likes
Reply

Many thanks for your reply, it was so informative. Thank you.

2 likes
Reply

I agree - and everything Simba 1992 said resonates with me. I had IBS years before the RA appeared and had already established a number of foods that don’t suit me - gluten, cow dairy, soya, beef etc etc. When the RA started I became aware of other things like citrus, potatoes, tomatoes that aggravated joint pain. I take turmeric, zinc and boron and I think they help the inflammation and general well being for me. Everyone is different so the problem is that you have to sort out for yourself what does and doesn’t affect you - that’s the tough part! Good luck!

3 likes
Reply

Thanks I appreciate your reply. Yes have had some tests and potatoes tomatoes, gluten and dairy seem to be a problem so I'm wading through it all!!

Reply

Great response simba. 100% agree with you. Some medications also deplete the body of nutrients. X

2 likes
Reply

My daughter has jia and we had her tested as I believe there is a direct link between what we eat and our health. She is intolerant to gluten dairy and soya. A dietitian told me all of these things would aggravate her ra. I don’t give her any of these things now but I know she has them after college! Since starting the new diet she is much much better. Occasional flare up but nothing like how she was. I think that the pharmaceutical business keeps turning the global wheels of commerce, as well as obviously making people better and that is unfortunately why many consultants and doctors are not too keen to accept it.

4 likes
Reply

Thanks for your reply. Yes the drug industry loses out big time if we start to use food to heal!! Glad your daughter is better.

3 likes
Reply

Well said and all the best to you both xx

1 like
Reply

May I ask how you got her tested? I've been thinking about getting this done but want to go to someone reputable

Reply

Hello there I did a lot of research and found a lab local to where I live. A good nutritionist will be able to advise and organise the best and most sensitive tests for you. Mine were not cheap! Around £1000 from memory but it was for our little girl and it was worth it to take the guessing out of what was causing her the flare ups. Good luck x

Reply

Thanks!

Reply

I believe this too!

Reply

Me too!

Reply

I have added/removed various things from my diet to promote my gut health as I have had to take IV antibiotics frequently since being a teenager.

I have noticed an improvement since taking probiotics in tablet for, I take vegan ones as I am dairy intolerant, not vegan.

I have noticed an improvement since making my own bone broth at home and drinking it or using it in soups.

There is very little research out there but people have definitely commented on how much better my skin and hair look since drinking broth and I feel like there is less inflammation. Its not good if you need a low histamine diet though.

Bottom line, what might work for one won't necessarily work for another. Its a question of finding out what works for you.

2 likes
Reply

Thanks. Have just started the bone broth!

Reply

Good for you, did you add in apple cider vinegar?

Reply

Am drinking broth that I've bought at the mo but planning to start making my own and will be adding apple cider vinegar.

Reply

Oh wow, I've never actually seen it for sale before. Well enjoy making your own. Beef broth makes a brilliant base for French onion soup if you like that. Good luck with it!

Reply

Thanks again for your help.

1 like
Reply

Hi there, I'm similar to you, recently diagnosed and just on my second week of Methotrexate. The Rheumatology clinic I attend (Nuffield Orthopaedic, Oxford) are researching it. I agreed to take part in their research, had to give extra blood and at some point they will want a stool sample 🙄 it's very interesting. So far they have just told me to eat healthily, which I do anyway. Will be interesting to see what comes out of their research programme.

Reply

Do you know exactly what they are researching on?

Reply

I've mislaid the research paperwork they gave me (came out with an armful of papers and booklets) 🙄 but part of it was to do with flora in the gut. I go back in March so will ask for another copy.

Reply

Oh wow that's fantastic and very encouraging- where do I sign up lol 😁

2 likes
Reply

Did it have to do with the effect of Mtx on gut flora, do you think?

Reply

I really can't remember! Will get another copy and let you know.

1 like
Reply

I think it's to do with this:

ndorms.ox.ac.uk/news/kenned...

Reply

Thanks that's really encouraging and hopeful. At least someone is looking at this. You must be really pleased to be taking part in the research - it would be great if, in the future, you wouldn't mind posting any updates on here as I think lots of people would be really interested. Thanks again

2 likes
Reply

Will do.

1 like
Reply

Thanks again for your help. Feel much more encouraged 😁

Reply

I agree with you. I do feel food plays a big part in it. Figuring out what foods is a problem. 😞

1 like
Reply

Dead right! And food intolerance tests are so expensive (I've had 2 which came back different) that's why it's a shame that more research isn't being done but I get that the NHS has other priorities too.

1 like
Reply

Hi

I am a food scientist. For many many moons it has come down to eating a well balanced diet and staying hydrated. I see it as feeding the good bugs in your gut and keeping the bad ones under control.

I have eaten a healthy diet for most of my life. On the odd day that I say go out for a pizza or something I end up with a 'food hangover' the next day. Prior to having RA this only happened when I ate Chinese food (MSG being the issue no doubt) now it happens with any processed/junk foods.

I'm no saint but I do try and keep the junk to a minimum.

Joy

2 likes
Reply

That's really interesting that you've always eaten healthily. I had a bad diet for many years and assumed that had contributed to my RA. I've cut out junk and am trying a Paleo type diet (after going vegan for 3 months and feeling worse) but it's trial and error it seems!

Reply

Mine is no doubt down to my genes. 5 of us female cousins on my Mum's side have an autoimmune disease.

Reply

I'm very sorry to hear of your recent diagnosis. Six years ago I was diagnosed and since then I've made it my mission to reverse this disease. I have a wonderful Rheumatologist and he helps me to understand the pros and cons of RA drugs, but that is all that he does. He is not concerned with my diet, supplements, or what I do in my life. I've come to accept this - it seems common where I live in the Northeast US that specialists have a very narrow scope. I've been working with another M.D. who also uses functional medicine protocols and it has made so much difference!! I enjoy this Dr. so much because she is helping me to determine why RA switched on for me, not simply reduce symptoms. The cause of RA is elusive, but, in my opinion, it is probably caused by several things including poor gut microbiota, heredity, mineral deficiencis, food intolerances, stress, etc. If you can, try to find a doctor who will help you solve some of these mysteries.

Because of the work I've done with functional medical providers, I've been able to live with well with RA. In health!

1 like
Reply

Thanks so much. It's so encouraging to hear that we can live well with RA and gives me the push I need to continue in the hope of reversal or at least a good quality of life. Thanks again.

Reply

I do believe that a cure will be found within our lifetime. Until then, keep exploring all of your treatment options. :)

1 like
Reply

Hi i agree that to eat a well ballanced diet is the best option for people suffering from RA. Not a fad diet but good wbolesome food and asittle junk as possible. I also would try the herbal route dont ovetdo it just sau tumeric if you can manage it. I also turned to reiki which i find helps me with the pain. Its not a cure but it definitely will help to keep pain levels down. Look for a good reiki practitioner one tbats recommended if possible. If its not and you want to try it let me know and i will give you a treatment so you can see if it works for you. Hope you manage ok. And thibgs are not too bad at the moment. Xx

Reply

oh sorry for butting in but please can you send me some healing, reiki healing? please

thank you xx

Reply

Yes of course where are you?

Reply

Thank you. all the help and support here is wonderful and really helps.

Reply

Hi dobcross1,

Thought I share this with you, very interesting and hope it’s helpful

🤗X

Reply

Thanks! - appreciate your help very much.

Reply

There is no evidence that a healthy gut can fix RA . I believe there are inflammation causing foods that can be avoided but diet alone will not fix the problem and that is why they dismiss it. Would be wonderful if we could eat healthily and cure ourselves but I think it goes a bit deeper than food.

Reply

More research is coming to light all the time.... Infection seems to be one of the main triggers of autoimmunity, along with allergies and toxins. What you eat is important as it determines how good your gut flora is. In addition, sugar management is vital as high carb diets feed microbes....

nih.gov/news-events/nih-res...

ncbi.nlm.nih.gov/pmc/articl...

2 likes
Reply

Fantastic research. Just wish some of it would hurry up and become reality! Thank you

1 like
Reply

No problem at all. The thing is, there are already ways to tackle underlying infections. Medicinal mushrooms and herbs have anti biotic, anti fungal and anti viral fighting abilities.

Functional medicine targets the root causes of disease. Some of the conventionally trained ones use either the natural remedies or a combination of natural and pharmaceuticals to kill underlying infection.

If you cant afford a functional medical doctor then i can recommend a very useful book. Its called the infection game by dr sarah myhill. It tells you what autoimmune diseases are linked to what types of infection and how to kill them (naturally and/or conventionally). This in combination with a good diet for gut health etc can improve peoples health and quality of lives.

2 likes
Reply

Thanks I'll have a look at that book. I've thought about a functional doctor but knowing what else is out there to help is vital.

1 like
Reply

It's really funny how the antibiotic treatment in RA that was put to sleep years ago is surfacing again in research. Even treatments where DMRDs together with tetracyclines are used and have given good results and Doxycycline shown as effective as MTX in early RA.

2 likes
Reply

I strongly believe underlying infections are a major player in chronic disease. They would also deplete the body of nutrients as they can affect the gut and put the body under severe stress.

Ps sorting out the underlying problem then reduces the need for pharma drugs.....

2 likes
Reply

Yes I do as well believe that infection is more often than not the triggering culprit. However I do also believe that before the break out of RA and the triggering infection there has been an ongoing subclinical inflammation where diet has had an important role but also a dysfunction of the hormonal regulation of metabolism. Had I known what I know today I would have started with Doxycycline and a diet that would adequately support cell metabolism. I would have supported thyroid function and supplemented with progesterone.and certain other supplements.

Dr.Brown who successfully treated thousands of RA patients with Minocycline also found that patients with right nutritional support had the best results. Can well imagine that once you kill the bad bacteria you need to restore the healthy gut. Unfortunately though it seemes like the illness that now is metabolic, seemes to keep up a gut situation where restoring healthy microbiome seems to be very hard and toxic bacteria finds new ways to infiltrate. I think this is the reason why the antibiotics need to be taken continuesly, like in Dr.Browns AP with Minocycline.

1 like
Reply

Yes i agree that diet can create a host of health issues. Once infection has established itself though, then in my opinion the diet must be tight in order to kill infections successfully and build a healthy gut microbiota. My dr says a good diet helps protect the gut during antibiotic treatment.

I do believe in the functional approach which entails nutrients that support the mitochondria, thyroid and adrenals etc. I think killing any underlying infection is of paramount importance but rebuilding the body with the above is absolutely vital.

I believe healing takes time depending on how ill someone is and also the duration of their illness. I also believe that the length of time treatment is required can be prolonged due to the above. Essentially, it depends how deeply entrenched these infections are. Not to mention the fact that co infections can also be present in a weakened body. I do think its entirely possible to get on top of these things. The sooner the better though.

2 likes
Reply

I've really really tried with diet and trying to heal the gut naturally with supplements, bone broth, fermented foods etc but no difference really (though I'll never know if I would been worse if I hadn't been trying to heal) so the infection angle is informative. Thanks to you and Simba.

2 likes
Reply

No problem at all dobcross1. Sometimes more things have gone wrong in the body and people do need more than just a good diet. Glad that you found the input helpful.

1 like
Reply

Simba you mention doxcycline and when I looked it up it's used to prevent Malaria - and so is Hydroxychloroquine I think - so as you say these things must be connected and their usefulness in RA considered. Was that what you were meaning?

Reply

Doxycykline is a tetracykline antibiotic like Minocyclin. Both have shown in studies to help with inflammation and progression in RA. Hydroxy is not the same but has a antibiotic effect. Doxy is as you say also used for prevention of malaria.

Reply

Oh simba, if you read my reply to dobcross that book might really help you too!

1 like
Reply

Thank you TOB for the wink. Have read a huge amount on the infection connection. Actually one book that may interest you comes to my mind: Rheumatoid Arthritis, The infection Connection, Targeting and Treating the Cause of Chronic Illness

Katherine M.Poehlmann, Ph.D

1 like
Reply

Thank you simba. Appreciate your posts too. I will definitely read that. Its lucky that we have the internet now. It gives us such valuable information. As long as your careful what sources you use lol. Obviously, theres some rubbish online too lol.

1 like
Reply

read online research injection gets into body 70 % better than pill - I agree !

Reply

I had a reaction with Methotrexate, all the Dr's are doing is experimenting with patients biddies. If there is anything wrong, address it immediately, or next time you see your rhumologist, they are quite helpful.

Reply

You may also like...