Newly diagnosed after 11 years, been advised to go on... - NRAS

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Newly diagnosed after 11 years, been advised to go on AIP diet

Edgie97 profile image
15 Replies

Hey, I’m a spring chicken at 21 years old but have had the symptoms of RA for 11 years, was finally diagnosed when I moved to a different doctors (sometimes makes a hell of a difference) thanks to a flare of bursitis and a health check (and a doctor who takes me seriously)

I’ve been doing my research since diagnosis, and have seen the AIP diet mentioned here and there, but I’ve had a message from someone who says I really should go onto this diet to see what triggers my flare ups.

Has anyone here gone on the AIP diet before? Did it help? Is it pricey?(I live with my boyfriends mum, so she does the shopping and I pay board, but we are saving for a mortgage)

Would just love some advice from those who have tried it before cutting out so much food, I’m a foodie so would like to avoid if possible!

Thank you in advance x

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Edgie97 profile image
Edgie97
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15 Replies
helixhelix profile image
helixhelix

Waiting 11 years for a diagnosis takes the biscuit!

Debates on diet can get a bit heated on here, it's a subject we all feel quite passionate about and is quite polarised. But if that happens don't take it personally.

My personal take on it is that there are some people where what they eat makes absolutely no difference at all (like me), amd some where the difference is huge. Unfortunately no way of telling which you are in advance. I also think that it is not the only priority, as not smoking, being normal weight, taking regular exercise, getting enough rest and avoiding stress all make a significant contribution to getting this under control. So it's looking at your whole lifestyle not just foods to avoid.

But at your age it's worth a try. It doesn't have to cost you more if you are sensible and don't get tempted by the pricy alternative "free from" stuff. I tried all sorts of things and have ended up with a pretty natural diet - lots of cheap vegetables and fish. Then everything else in moderation. So start perhaps by seeing if you can adjust your weekly meals to avoid all processed food. Then try takimg out a particular food group for several weeks to see if it makes a difference. There's loads of free information available so no need to pay to join programmes either.

Edgie97 profile image
Edgie97 in reply to helixhelix

This was a great response... and just in time as my heart was breaking looking at my Tesco delivery basket at £30 after just adding the essentials!!

Maybe I will take your advice and up the fish and veg, cut out the cr*p and see where it goes.

The diet recommends cutting out everything then reintroducing... I think, for the sake of my bank account, I may do it the other way around and cut out certain things one at a time and see what happens!

Thanks for the inspiration ☺️

N x

Simba1992 profile image
Simba1992 in reply to Edgie97

Hello Edgie97,

I think you are on the right track looking into foods you eat. There is no longer even a question that food wouldn't matter in AI diseases. Not only food but also lifestyle. But this is just part of the puzzle and finding what foods support your metabolism the best possible way, is often not easy.

When I was diagnosed three years ago, like you I did my research and found AIP. Yes It did decrease my symptoms 80% but for only 6m after this my pain was creeping back and I wasn't feeling well. After more research I did identyfy the problem which in fact had to do with my lazy thyroid function and hormonal imbalance that was in fact increased by the diet. It has taken me a long time to get over the metabolic stress that the AIP diet had caused.

Because in RA you have a metabolic dysfunction you really need to be careful before you go to extreme diets. You are in a much safer place if you have a compleate thyroid panel as well as test your estrogen/ progesterone level before you start any diet. What seems to be safe is to eliminate all gluten and dairy for three weeks and see if there is a difference. It may be that in your case it will.

I am still controlling my RA with diet, supplements and additionally LDN something you might be interested in looking into. At present my diet supports my cell respiration and energy production helping my immunesystem to cope with the existing metabolic imbalance. I have quite a lot of energy, sleep well and do excersize in gym 3x week.

Edgie97 profile image
Edgie97 in reply to Simba1992

Amazingly informative, Simba!

I think you have given me a great idea there, cutting out gluten. I honestly don’t think I could cut out dairy unless extremely necessary... I love cheese and milk so much! But if gluten doesn’t do anything, I may have to *internally cries*.

I will research LDN, I haven’t heard of that.

I will delay the dieting idea for now and try more simple, less damaging methods first!

Thanks for your response!

Simba1992 profile image
Simba1992 in reply to Edgie97

Good luck! Take one step at a time and listen to your body. I eliminated dairy and gluten first. Have now reintroduced dairy since it has so many beneficial nutrients, very hard to get enough calcium without it, has high quality protiens as well. Gluten will stay a no no since such an abundance of research also on its ill effects.

spzgirl51 profile image
spzgirl51 in reply to Simba1992

Hello Simba1992 , and Edgie97

I have had Ra since 2013 so am still learning. I heartily agree that healthy eating and avoiding processed food came be hugely beneficial. I have never heard of the diet you mentioned. Could you explain what you mean by metabolic inbalance? And cell respiration?

I am a 50 + lady , I like to try to stay trim and exercise when I can . But there is always scope for improving our choices? I believe in 80/20 healthy food to slightly less so it's better to eat small potions of well made natural food and think about good nutrients not calories. This has worked quite well for me . But recently, some o f the medications i have to take has made me.more prone to weight gain. The best thing about this forum is that we can share experiences which have helped.

best wishes to you both .

Edgie97 profile image
Edgie97 in reply to spzgirl51

Hi Spzgirl51!

It’s so happy to hear you are healthy and fit despite RA, you hear too many stories of people who give up trying to stay fit and healthy and the weight piles on :(

I think what Simba meant by “cell respiration” is related to what RA does, which is your immune system attacking the lining of your joints, so am I safe to assume it means the lining is returning/healing?

In regards to metabolic imbalance, I’m not quite sure. I’ve done some research into LDN but I didn’t see this mentioned, hopefully Simba can shine some light on this.

The diet I mentioned is AIP, autoimmune protocol, and it’s basically where you cut out all food types which can trigger flare ups (dairy, gluten, nuts, alcohol etc) and then once it has been 4-6 weeks, you introduce them back in your diet one by one, seeing which food types affect your RA.

It sounds interesting and a good way t do it, but after some window shopping on groceries, it also looks VERY expensive...

Wish you the best of health x

Simba1992 profile image
Simba1992 in reply to spzgirl51

It has been shown in research that those suffering from RA have high levels of oxidative stress which effects metabolism in many desruptive ways. It is also shown that glucose metabolism as well as hormonal balance is affected, leading to mitochondrial dysfunction and decreased energi production on a cellular level, in other words the metabolic stress is much about a lack of energy needed. My approach has been more in understanding the dysfunctions and trying to find ways of supporting cell respiration ( mitochondrial function) through supporting thyroid function by increasing progesterone, dietary modifications, supplements and through this decrease oxidative stress. It's taken some time for me to understand this biochemistry and it is quite impossible to explain it in a few sentences, and I can imagine this may sound a bit cryptic, sorry:( I do however encourage you to do your own research. Understanding better what is happening inside us,I feel, is just as important as what we can see in the symptoms we experience. It is also crucial when searching for different ways to make us feel better as well as in understanding how different meds work and effect our bodies.

If you want to learn more about AIP diet there is really a lot on the internet if you google. I hope this was of some help.Simba

helixhelix profile image
helixhelix in reply to Edgie97

Something else you might find inspiring is the experience of Lucy11. She's a little older than you, and worked hard at finding her path to remission. Have a read of her posts, here's one

healthunlocked.com/nras/pos...

AgedCrone profile image
AgedCrone

I can only speak from my personal experience. I was diagnosed 20 years ago & way back then there was not much discussion about diets....so I didn't have to make a choice which one to try. Today, I'm sure you will get lots of suggestions here

I have always eaten exactly what I like. I rarely eat processed foods, I don't have sugar in anything from choice .....I am not overweight & I don't smoke......but I will scoff the odd donut! I rarely eat red meat because I don't like it . I stick to chicken & fish, plus fresh or frozen vegetables, not tinned...& lots of fruit. I don't like chocolate, but if I did I'd have the odd choccie.

I also drink wine in moderation ....but not spirits.

I have never been able to put a flare down to eating anything in particular.

But common sense will tell you if you eat....say cereal a few days running & you feel a flare coming on, it's certainly worth not eating cereal,& if things calm down .- . don't eat cereal & see how you go.....obviously substitute xxxx for cereal if you think another food might be a problem.

I have been on umpteen Dmards & am now on a Biologic. I have a few dodgy fingers ...but that is OA.....not RA ..have had no joint replacements, & on the whole, once I got settled on the various meds that suited me, have led as normal a life as I think I would have had without RA.

But that is me....you might be fortunate & be the same....do hope so.

Edgie97 profile image
Edgie97 in reply to AgedCrone

Thank you for your insight!

Apparently it is different for everyone, I guess that’s why they created the AIP plan! Funnily enough, I have a bad flare today and it came on a couple hours after eating noodles... I had a couple sweets (left over from before I read into this) as well, so could be either! Both are potential triggers.

A previous commenter made a good suggestion of doing the opposite of the AIP plan, and instead cut out one food group at a time. I may do this and leave dairy until last, dear god I hope dairy doesn’t trigger me! I’ve always said if I ever become lactose intolerant I would keep having dairy and live my life on the toilet... oh how ironic if it triggers my RA!!

I’m glad to hear you live a normal life with RA despite having it for 20 years... it does make me feel better about having it so young. My worry is because I have had it since a very young age, it gives my body more time to be affected by it.

But hey! PMA and all that, you’ve made me feel better for sure!

Thank you x

AgedCrone profile image
AgedCrone in reply to Edgie97

And don't overthink yourself into believing it really is food that triggers your flares.

I think stressing over what you are eating is as likely to cause a flare as actually eating something!

Although unless those noodles you ate were home made...I bet if you read the packet they are full of NoNo,s....but they are tasty!

Also have you investigated what you are going to give up if you go Gluten Free?

If I were you, I'd soldier on as you are.....& launch yourself into whatever eating regime you decide on after the Turkey & Christmas Pudding!

Edgie97 profile image
Edgie97 in reply to AgedCrone

You’ve got me there... stressing about all of this may be the cause lol!

They were probably massive no-no’s... but they’re my favourite noodles and were on offer!😂

I’ve researched all the foods with gluten... wow. Just wow. All I’ve got to say! It will be hard... and now you’ve reminded me of Christmas I think I’ll just start slowing getting rid until Christmas!!

AgedCrone profile image
AgedCrone in reply to Edgie97

Good idea!

MandiS profile image
MandiS

Hi Edgie97

When I got diagnosed in 2017 I attended the Institute of Nutrition as a patient for a student. It was free they took my history set up a plan for me. I was told to follow the AIP and I can say it did work for a while i did however get lazy and did not remain disciplined.

As a result after a few months I had a terrible flare that lasted almost 3 months. I do definitely think diet can help relieve symptoms. I have now been off all meds for 2 months and again have been trying to watch my diet lots of veggies cut out wheat and have limited my cheese intake drastically. I also am not having any red meat or alcohol. I have found this has helped. I really don’t want to go back on the meds and am going to see if I can try and alleviate symptoms with diet. One interesting thing I noticed is on days when I hardly eat anything I have no / very little pain this leads me to believe that diet does play some part in RA. Best of luck.

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