Autoimmune protocol diet: Has anyone got any experience... - NRAS

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Autoimmune protocol diet

Blacksheep83 profile image
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Has anyone got any experience of the above? I am supposed to be running a marathon on April 2nd but having been newly diagnosed with RA I am struggling with pain and fatigue 😩

I also wondered if anyone found something like herbalife helped or is it too processed?

Please help my question keeps getting declined on other support groups for some reason?

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Blacksheep83 profile image
Blacksheep83
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medway-lady profile image
medway-lady

I hate to be brutal but if diet worked then no doubt the NHS would be prescribing that and not the medications we are taking. It is true however that eating healthily helps everyone and not being overweight is good for not putting too much stress on the joints. Has your GP referred you to a RA Consultant ?

nomoreheels profile image
nomoreheels

Hiya Blacksheep83, welcome. As a newcomer you won't have happened upon previous posts asking about diet, including this type. It may be the reason your question is being declined on other support groups, it would make sense as it is usually divisive. I'm afraid to say that anyone suggesting such diets are pie in the sky, the only diet recommended is following a Mediterranean type diet, health eating basically, that & exercise nras.org.uk/resource/diet/

Your symptoms are typical of being newly diagnosed, the meds haven't had long enough to work, they aren't quick reaction meds I'm afraid. Fatigue is only helped by resting but the pain can be medicated until you're under better control. To be running a marathon, well I couldn't do that anyway, but only you know if you should, or talk it over with your Rheumy, see what he can advise.

Sorry to be so negative but I really do think it's something you should talk through with your Rheumy when you ask about running a marathon, take the opportunity to ask what is best as far as diets go for you personally.

nomoreheels profile image
nomoreheels in reply to nomoreheels

Just to reiterate what others have said about supplements or nutritional support. If you are formally diagnosed (not by your GP but by a Rheumatologist) it is important to discuss any you are considering with your Rheumy first, even vitamins. Being newly diagnosed you may not know that anything which could interfere with or increase effects of your medications could be potentially a real issue, also & particularly with renal or hepatic clearance. It could mean the difference between how a med is affecting your or even a successful med being stopped when it may not be the culprit. Also they may even have been proven to not be beneficial for RD & you're wasting your money, the Herbalife plan being just one expensive waste.

EmmaS-NRAS profile image
EmmaS-NRASNRAS

Dear Blacksheet83,

Whilst it is helpful to hear of others experiences with complimentary therapies (including diet), sadly RA is such a complex syndrome with a number of different sub-types that what works for one individual is unlikely to work for the whole RA population and that is demonstrated in drug therapy too. There is some evidence for Mediterranean and general healthy, balanced diets and you can find this information on our website: nras.org.uk/resource/diet/

As you mentioned you are newly diagnosed and are probably still trying to take in all the information that is out there - our Diagnosis section of our website is a good place to start and our New2RA booklet (available to download or have posted) may answer some of the questions you might have

nras.org.uk/resource/diagno...

Don't forget our Helpline team are available on 0800 298 7650 if you have any questions at all. In the meantime, we hope that your marathon training is going well.

Kindest regards

Emma-S

helixhelix profile image
helixhelix

good on you for thinking of running marathon! I hope you make it.

Like others I am sceptical of set diets as they are too restrictive. I tried a load them when first diagnosed without doong much apart from makimg me miserable.

But food can make a difference. To me it really depends on your starting point. If you are a runner you probably have quite a good diet. However I didn’t and found improving me diet helped my overall health, which helped my RA.

Basically all I’ve done is cut out all highly processed foods, such as biscuits, amd limit all very fatty and sugary food. So lots of fruit and veg, plus protein such as fish.But really eat what I want within that framework.

HappykindaGal profile image
HappykindaGal

apparently fodmap can help people with RA, but it’s incredibly restrictive particularly if you have a social life that involves restaurants.

I tried for three months and it made me even more miserable than I already was. It didn’t change a thing. But, it might for you as we are all different.

Being newly diagnosed, I suspect you’re being given many suggestions to try xyz. The people are well meaning, but they don’t understand RA and are selling MLM products such as Herbalife, forever living aloe Vera, just juice, among a myriad of others . None of which do anything for RA.

I hope you are able to do your marathon and wish you lots of luck

Katie-Mag profile image
Katie-Mag

Hello Blacksheep,

Sorry to hear of your diagnosis. I’m also a runner and was diagnosed 3 1/2 years ago.

In my experience it takes a while to get your medication right (nearly two years for me!) and I found it almost impossible to train for anything ‘serious’ in that period. However keeping as fit and mobile as possible was still important to me and I’m sure it helped.

Diet wise, agree with the other responses. Alas it’s very serious drugs that ‘fix’ RA not diet. As others have suggested NRAS are a great source of guidance.

I hate to pour cold water on anyone’s marathon plans but be kind to yourself. Newly diagnosed RA and marathon running really don’t sit comfortably together. Could you defer your place to next year when you’ll hopefully be feeling much better?

Promise that RA doesn’t necessarily mean the end of your running career but it’s a serious condition. Maybe for now listen to your body.

🤞 Good luck.

I have found going gluten free helped with energy levels ( I cheat occasionally with the odd croissant or toast). I also started taking muti-vitamins and omega 3.. Vit Bs and calcium are needed and trace bits of things. I also restarted on red meat to keep my iron up (once or twice a week).

Gnarli profile image
Gnarli

I'm so sorry you've had to join us here and wish you all the best

Mmrr profile image
Mmrr

Like the others have said, if there was a simple fix for RA such as diet or supplements then the NHS would be offering them rather than meds that cost £10k per individual per year (I'm on advanced therapies). You will most likely be inundated with advice from others around you, but the sad fact most people have no idea what RA is. The advice about diet / supplements although well meaning is generally not useful, and in some cases supplements can interfere with RA meds, so always check with your rheumatologist before taking anything. It takes a while to settle onto the correct medication keeping healthy, eating well, keeping your weight in check all contribute to your overall health. But RA medications are the way to control your RA.

Having a chronic illness can also take a while to adjust to mentally. Most of us on the forum have had our lives altered in some way, some more than others by RA. It can take a while to adjust, but getting the correct mediation is the key, and that takes time I'm afraid.

cpt13 profile image
cpt13

Hi

I understand your dilemma. First of all I don't recommend Herbalife. There are better products in Holland & Barrett. Like you I was diagnosed with RA in 2013 and I was in training to do the Paris Marathon. I did not know what to do but I was determined not to let all my training go to waste. I was given a prescription of Methotrexate in tablet form and it was making feel sick. So I decided not to take them until I completed my Marathon. When I arrived in Paris my body was very stiff prior to to event. I still did not know whether I could run or not? The day before I started to take very hot baths to ease my stiff joints. Anyway I arrived on the starting line and off I went. Following a pacing group for the allotted time i was aiming for. At the 30KM mark my body started to seize up and started to walk for a while. I thought! Shall I pull out or carry on? Than I came to a drink station, took some oranges and sugar lumps. I don't know why I picked the sugar lumps? They caught my eye and I am glad they did, it worked wonders. I suddenly had a burst of energy, looked at my garmin watch, and with about 7 KM to go; I realised I could at least get under 4 Hours, and I did. I may not have achieved the time I wanted but I was happy I finished. It was not a total disaster. I hope that helps and encourages you to prepare well and 'Feel No Fear and Do it Anyway'.

Celticdancer profile image
Celticdancer

Like others have said what works for one may not work for another so you have to find what works for you. I`ve kept a food diary and noted down everything I ate and drank for several months to see what foods, drinks my body could accept and what my joints and back reacted to by flaring up with pain. I eat alot of oily fish like salmon, use turmeric in my cooking which are good for joints. I avoid fast food, ready meals, processed foods including white sugar, white rice, white flour, white bread etc and avoid fizzy drinks and limit my alcohol intake. I take pure and full spectrum CBD oil for the pain and inflammation and take regular vitamins and minerals such as Vitamin B, C, D, K2, zinc, magnesium, krill etc. I exercise regularly usually walking, swimming, cycling and physio exercises to help my back as I have Ankylosing Spondylitis (arthritis in the spine) as well as other arthritis. I have regular massages, hot baths as well. Thinking positively also helps. I`m not on any medication and all of the above help me alot.

There are some RA, AS patients etc who run marathons but not many as running is very hard on the joints especially on tarmac. I`m afraid Rheumatologists don`t have alot of knowledge on diet and nutrition as they`re mainly trained in pharmaceuticals and getting referred to a Nutritionist, you have about as much chance of going to Narnia and finding Unicorns if you`re in the UK and relying on the NHS.

NRAS have limited information on diet and nutrition but you could check out RA facebook groups to see what diets other RA patients use as you will be able to chat to people from all over the world. Do lots of your own research and don`t be afraid to make full use of your Rheumatology appointments and ask your Doctor and Nurse lots of questions. They`re not gods so don`t let them intimidate you.

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