Rhumatoid and food

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bitsinabag
bitsinabag Member Posts: 30
edited 20. Nov 2018, 06:53 in Living with Arthritis archive
Hi out there, my old man and me have found what for me is a reliable way of eliminating the pain and other symptoms of diagnosed and suffered chronic rhumatoid arthritis. I suffered for several years, (knarled joints, awful pain, steroids, splints, morphine, etc, etc.)
To trim the tale to a digestible size, in spite of the relentless symptoms I felt worse some days than others. The old man,who believes that we are each responsible for our own health and that doctors admit that they are only `practicing`decided to log everything I ate, drank and did as well as, 1-9, how I felt each day to see if there were any patterns. He set up a spreadsheet with daily entries many of which amounted to ticks in a box, and over a period of a couple of weeks some patterns emerged.
The key items pointed strongly toward what I ate rather than what I did.
Specifically (for me) that bread, pastry, cakes and the like had a worsening effect on my symptoms. Specific allurgy testing via the GP showed no indicators. Still no better with GP/specialist advice we went our own way and eliminated those foods and within 7 - 10 days the symptoms and pain disappeared as if by magic. Obvious coincidental remission says the specialist. However in the 8 1/2 years since, if I avoid wheat & gluten in my diet I get no pain or other symptoms of RA, If I eat so much as a `normal` doughnut the joint pain begins again within the hour! For the record if I unkowingly eat wheat or gluten the same is true. eg friends go to the trouble of getting GF bread and other foods and the add flour to a sauce or what have you.
I now live a normal life and the knarly knuckles have largely recovered. Managing the food is nowt compared to suffering pain.
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Comments

  • [Deleted User]
    [Deleted User] Posts: 3,635
    edited 30. Nov -1, 00:00
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    Welcome to Arthritis Care Forums bitsinabag from the moderation team

    As mods we are here to help with any problems you may have on the message boards.

    There are lots of lovely people here with a wide range of experiences with arthritis and the problems of living with the condition. Just join in wherever you like you will be made very welcome.

    I look forward to seeing you posting on the boards.

    Best wishes

    Mod JK
  • stickywicket
    stickywicket Member Posts: 27,731
    edited 30. Nov -1, 00:00
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    Hello bitsinabag and welcome to our forum. I'm very glad you've managed to find a diet that works for you and it's kind of you to come on here to share it with others.

    Different people seem to find different food triggers for their arthritis of whatever ilk. The nightshade veg can be a trigger for some. Cutting out meat certainly helped me. I can see how eliminating carbs might help because it is known that junk food makes inflammation worse and a lot of junk food is high in carbs. Pain free, though? Not since my first pregnancy 45 years ago :lol:

    Have you considered that you might have a gluten intolerance? The normal tests for coeliac disease can give false results if you also have an IGA deficiency so a different test must be used. It can be dangerous to omit an entire food category so I hope your GP is on board with your carb-free diet.

    It would be lovely if carb-free meant pain-free for all of us and I do agree, to some extent, that “we are each responsible for our own health”. We shouldn't just rock up at the GP's surgery and demand that they do all the work while we continue to lead unhealthy lifestyles. However, having wasted much time and energy in the past on all sorts of supposed 'cures' I'm now immune :lol: If your diet helps you I'm very pleased. Long may that continue.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • barbara12
    barbara12 Member Posts: 21,281
    edited 30. Nov -1, 00:00
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    Hello bitsinabag and welcome to the forum
    Im so glad you have found something to help your pain, I started a food diary a while ago, but gave up on it, but have decide to do another one and really keep it up to date..I find it interesting that quite a few people on here are gluten intolerant..so maybe thee is something in this ..hope it continues to work for you..
    Love
    Barbara
  • bitsinabag
    bitsinabag Member Posts: 30
    edited 30. Nov -1, 00:00
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    Hello bitsinabag and welcome to our forum. I'm very glad you've managed to find a diet that works for you and it's kind of you to come on here to share it with others.

    Different people seem to find different food triggers for their arthritis of whatever ilk. The nightshade veg can be a trigger for some. Cutting out meat certainly helped me. I can see how eliminating carbs might help because it is known that junk food makes inflammation worse and a lot of junk food is high in carbs. Pain free, though? Not since my first pregnancy 45 years ago :lol:

    Have you considered that you might have a gluten intolerance? The normal tests for coeliac disease can give false results if you also have an IGA deficiency so a different test must be used. It can be dangerous to omit an entire food category so I hope your GP is on board with your carb-free diet.

    It would be lovely if carb-free meant pain-free for all of us and I do agree, to some extent, that “we are each responsible for our own health”. We shouldn't just rock up at the GP's surgery and demand that they do all the work while we continue to lead unhealthy lifestyles. However, having wasted much time and energy in the past on all sorts of supposed 'cures' I'm now immune :lol: If your diet helps you I'm very pleased. Long may that continue.
    hi stickywicket thanks for the response. I do not follow a "carb free" diet, I eat many carbohydrates - just wheat and gluten free.
    The point of my post was that analysis by simple means has both for me and 8 or 10 others who have followed our lead to identify their own RA trigger. I make no claims beyond that.
    A simple record on a spreadsheet enabled identification of the culprit easy, and gave me a life free from the most assertive symptoms of RA - pain and distorted joints. It is cheap, risk free, and enables me to feel in control , and thought that the approach could help others - hence joining the forum.
    Arthritis in it`s many forms is a bitch and if one or more people benefit from our experience then I`m happy.
    I sincerely hope that you find your own way forward.
    Thanks again
    bitsinabag
  • ichabod6
    ichabod6 Member Posts: 843
    edited 30. Nov -1, 00:00
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    Hello Bitsinabag,

    Your post is the most sensible one I've read on
    this forum for years.
  • PetiteN
    PetiteN Member Posts: 87
    edited 30. Nov -1, 00:00
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    Hi bitsinabag,

    I'm glad you've found an approach that helps you, that's great.

    I've suspected I'm coeliac for a long time, stomach/gastrointestinal symptoms were the clue for me, but i imagined if i am it would quite likely be exacerbating my general inflammation too.

    So just in the last month or so I have cut out wheat and gluten. Like you, I still eat carbs- I buy gluten free pasta, bread, cereals etc and eat more potatoes now.
    It has definitely helped my stomach issues (cutting out lactose in the summer last year first helped with this alot initially.).
    I noticed a pattern between eating dairy and pain and increased lethargy within half hour.

    I've also heard severe autoimmune disorder friends say that cutting out gluten has reduced their pain levels alot, not eradicated completely, but an improvement makes it worth it.
    My condition has done a lot of damage over thirty plus years so at this point I don't expect diet to 'cure' things or eradicate completely, there's too much damage done, but if pain and inflammation can be just improved it's worth it to me.

    I'm looking at reducing the sugar in my diet going forward (not cutting it out, obviously, but reducing it to healthier levels).
    Sugar is one of the most inflammatory things around, that is well known.
    That one will be quite tough for me as I think I'm a sugar addict!!
    I've relied on it so much as a coping strategy to combat fatigue, but I bet it makes my pain and inflammation worse.

    x
  • stickywicket
    stickywicket Member Posts: 27,731
    edited 30. Nov -1, 00:00
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    :oops: :oops: :oops: You're quite right. I'm confusing carbs and gluten. I blame incipient senility and trying to prepare for a month in L.A. while also having the house on the market and having to keep vacating it for viewers :lol:

    I really am pleased it works for you and your friends and, who knows, it might for others on here. I did diet / weather / activity and goodness-knows-what-else charts way back. Only meds and surgery have worked for me but they have worked well.

    I do know that some people with coeliac can get arthritic-type pain and stiff joints. There are still many medical mysteries around.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • frogmorton
    frogmorton Member Posts: 29,655
    edited 30. Nov -1, 00:00
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    Thank you bitsinabag

    (love the name by the way!)

    for sharing your experience. It makes very interesting reading and I am really pleased to hear your results.

    Love

    Toni xxx
  • bitsinabag
    bitsinabag Member Posts: 30
    edited 30. Nov -1, 00:00
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    barbara12 wrote:
    Hello bitsinabag and welcome to the forum
    Im so glad you have found something to help your pain, I started a food diary a while ago, but gave up on it, but have decide to do another one and really keep it up to date..I find it interesting that quite a few people on here are gluten intolerant..so maybe thee is something in this ..hope it continues to work for you..
    Hi B12,
    thanks for the encouragement and comment.
    I will to underline my experience detail the key points of our approach as I know them and originally listed by my old man!.
    1 Change in wellbeing+.- = opportunity to discover why.
    2 The log of inputs / change of wellbeing = key indicator of what
    3 Be ruthless in avoiding what (for a week at least)
    4 Re-introduce what to confirm if
    5 Monitor and log throughout on a single A4. (Full picture view)
    While this is not a one size fits all cureall it puts You back in the driving seat with little or no risk in the process.
    I hope this makes sense.
    All the very best.

    bitsinabag
  • ichabod6
    ichabod6 Member Posts: 843
    edited 30. Nov -1, 00:00
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    Hello BinB,

    It gets better and better.
    You definitely have the right approach.
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
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    I agree with Ichabod in you have the right approach for you. It's time-consuming but not rocket science to work out what helps or hinders and learning to avoid the triggers is a useful skill to master. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • bitsinabag
    bitsinabag Member Posts: 30
    edited 30. Nov -1, 00:00
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    Hello again everyone,
    my favourite subject - how specific foods can make you unwell and more importantly how avoiding them can improve your wellbeing to a startling extent.
    For those that dismiss this view as either a 1 off or the conclusion of a deluded soul check this out ;-
    Somerset King story Inspire mag
    http://portfolio.cpl.co.uk/inspire/2015-autumn/real-life/
    Alt link;
    http://goo.gl/794zLe
    Somerset reached her own conclusion her own way as did I, however the outcome is the same.
    From personal experience I believe that recording and reviewing inputs and wellbieing is both simpler and risk free. The total of an hour a week for a few weeks to get your life back is the best value transaction that I have ever made.
    Please give it a try - the worst outcome is no result. The best is lifechanging. Check Somerset`s story!
    All the best
    bitsinabag
  • [Deleted User]
    [Deleted User] Posts: 3,635
    edited 30. Nov -1, 00:00
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    Hi bitsinabag
    I am glad you found Somerset Kings article inspiring, diet certainly has helped her and you. We understand that diet does work for some people which is why we featured Somerset King's experience

    However please bear in mind that diet is a very personal thing and it does not work for everyone as arthritis is very complex and and there are many forms.
    Best Wishes
    Moderator Sharon
  • stickywicket
    stickywicket Member Posts: 27,731
    edited 30. Nov -1, 00:00
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    Check this out.http://www.arthritis.org/living-with-arthritis/arthritis-diet/anti-inflammatory/gluten-free-diet.php

    It makes sense to me that those who have both coeliac and an autoimmune arthritis will experience the pain and inflammation more severely as the coeliac inflammation has repercussions elsewhere. This doesn't mean that all of us with an autoimmume arthritis will benefit from a gluten free diet though the undiagnosed coeliacs would. The article does recommend a coeliax test for rheumatoid patients but doesn't suggest q gluten free diet will do anything other than removing the coeliac aspect of the pain and inflammation

    You mention previously taking steroids and morphine ( :shock: Morphine?) but which DMARDS / biologics were / are you on?
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • bitsinabag
    bitsinabag Member Posts: 30
    edited 30. Nov -1, 00:00
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    moderator wrote:
    Hi bitsinabag
    I am glad you found Somerset Kings article inspiring, diet certainly has helped her and you. We understand that diet does work for some people which is why we featured Somerset King's experience

    However please bear in mind that diet is a very personal thing and it does not work for everyone as arthritis is very complex and and there are many forms.
    Best Wishes
    Moderator Sharon
    Yes thanks for the help Sharon,
    while Somerset`s experience in so many ways mirrors my own, and I am so pleased that she has identified her triggers by other more radical risky?(total change of diet) means.That she reaches the same conclusion is encouraging to those who might doubt that it is possible. My key message is that recording and reviewing one`s own symptoms against changing inputs gives anyone with the ability to try the opportunity to identify `cause and effect`. It may be food or drink it might not. Good days and bad days are seen as driven by luck. Utterly daft. Such change is an opportunity to find out why. Simple record keeping is the `how`. Analysis/review is the way to identify `what`, no preconceptions please.
    thanks again for your responses.
    All the best
    bitsinabag
  • stickywicket
    stickywicket Member Posts: 27,731
    edited 30. Nov -1, 00:00
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    bitsinabag wrote:
    Good days and bad days are seen as driven by luck. Utterly daft.

    Please be careful. The implication of what you are saying is that the remedy is in our own hands and, if we don't go along with what you are saying we are choosing to have arthritis. That is upsetting for many of us. And untrue.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
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    I too have been wondering why you haven't mentioned any meds in the NSAID and DMARD groups which is the usual first port-of-call once diagnosed by a rheumatologist. I presume you were?

    I know what constitutes a good day for me, it's when I can properly wipe my feet on the door mat. The meds are controlling my PsA but even so it can still have a bite, especially in high- pressure and high humidity weather which is out of my control. My OA doesn't like the cold and low pressure (again beyond my control) but I know that if I eat pickles or chutneys, or over-do things on the physical front, then it will remind me it's there. Those aspects can be controlled and I know the 'risk' I run if I ignore the 'rules'.

    You are very fortunate (as are the many others who have told us about their dietary habits leading to a major improvement or even a total eradication of their arthritis) that you have found such a straightforward solution to your troubles and I am genuinely pleased for you. I suspect you have some kind of auto-immune issue, which is why this has worked for you, but is it arthritis? DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • davey1943
    davey1943 Member Posts: 1
    edited 30. Nov -1, 00:00
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    As only being diagnosed some 12/14 months with R/A I found your report very interesting.I shall try to gather some information about my food and drink intake and see If it helps with my shoulder and neck pain.

    Many thanks,

    Davey
  • [Deleted User]
    [Deleted User] Posts: 3,635
    edited 30. Nov -1, 00:00
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    Welcome to the forums davey1943.

    You may wish to also take a look at our section on "Interaction between food and arthritis" on this page: https://www.arthritiscare.org.uk/managing-arthritis/diet-and-exercise/diet

    Also, whilst there is no definite connection between food and flare-ups, certain foods may help reduce pain and inflammation. You will find a link to Healthy Eating & Arthritis in the same section.

    I look forward to reading your posts on the forum.
    Best wishes. Mod Bryn
  • Numptydumpty
    Numptydumpty Member Posts: 6,417
    edited 30. Nov -1, 00:00
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    I'm a little confused (yes, I know it doesn't take much) after reading Somerset King's story, surely it was the meds that put her in remission, not the diet, that came later. I realise the diet may have helped her to stay in remission, once the arthritis was under control, but am I missing the point here?
    In the early days of my disease I tried all of the special diets going, one was no fruit what so ever! I tried the cider vinegar and honey thing for so long I got to like the taste. I did go gluten free for a time, it didn't help me, maybe because I'm not coeliac.
    If it works for you, brilliant, and long may it last.
    Wishing you well,
    Numpty
  • Numptydumpty
    Numptydumpty Member Posts: 6,417
    edited 30. Nov -1, 00:00
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    Just to add to my previous post, at the moment I'm in so much pain I could bite a nail in half! It's nothing I've done or haven't done, it's just the nature of my particular beast. It's horrible, traumatic, debilitating, but it's not daft!
    Numpty
  • LignumVitae
    LignumVitae Member Posts: 1,972
    edited 30. Nov -1, 00:00
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    I can sort of see where you are coming from and it's great you have identified such a straightforward relationship between certain foods and your disease activity. For me though I know that food isn't a trigger to disease activity. I know my trigger is when my body becomes run down through illness, tiredness or stress. I do aim to minimise those as much as possible but it isn't possible to avoid all illnesses, especially when you live with small children and a husband who works somewhere with a high volume of people who aren't always in the best of health. Similarly I can't remove all stress or tiredness from my life. As much as your food elimination may work for you I think suggesting that others are daft for not attempting it isn't necessarily accurate. RA varies massively between people and I think it's fair to suggest triggers may as well.

    As somebody who has recently been diagnosed as anaemic due to the arthritis which has caused my symptoms to become worse I think it would be quite dangerous to unbalance my diet by eliminating food groups which is something others should also be aware of. All official advice regarding diet and RA suggests a good balance or a Mediterranean diet rich in vegetables, fruits and fish.

    ((((())))) to Numpty, I hope you get some rest from such awful pain soon
    Hey little fighter, things will get brighter
  • bitsinabag
    bitsinabag Member Posts: 30
    edited 30. Nov -1, 00:00
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    davey1943 wrote:
    As only being diagnosed some 12/14 months with R/A I found your report very interesting.I shall try to gather some information about my food and drink intake and see If it helps with my shoulder and neck pain.

    Many thanks,

    Davey
    Hi Davey
    I am being mis-quoted left right and centre.
    I propose logging on a single A4 all of one`s inputs particularly food and drink as well as `wellbeing` 1-9, daily and look for patterns.
    If none appear over the course of 2 or3 weeks then no harm done
    If however there are patterns of corresponding improvement or reduction in `wellbeing` then dig deeper into those inputs to find if there is a particular ingredient they have in common .
    If you are fortunate enough to find an input that associates then either eliminate it for a week if the effect is negative on your wellbeing, or take more if the association is positve.
    A `portrait` A4 on Excel with days of the week as columns and a list of inputs as lines 25-30 is enough. The last line is `wellbeing`
    1-9. Both below and beside the columns leave space for notes.
    If this is not clear let me know.
    All the best
    bitsinabag
  • bitsinabag
    bitsinabag Member Posts: 30
    edited 30. Nov -1, 00:00
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    Just to add to my previous post, at the moment I'm in so much pain I could bite a nail in half! It's nothing I've done or haven't done, it's just the nature of my particular beast. It's horrible, traumatic, debilitating, but it's not daft!
    Numpty
    Sorry to hear of you current troubles. I genuinely hope you soon find relief.
    I am being misquoted left right and centre my post read;-

    " My key message is that recording and reviewing one`s own symptoms against changing inputs gives anyone with the ability to try the opportunity to identify `cause and effect`. It may be food or drink it might not. Good days and bad days are seen as driven by luck. Utterly daft. Such change is an opportunity to find out why. Simple record keeping is the `how`. Analysis/review is the way to identify `what`, no preconceptions please.
    thanks again for your responses.
    All the best
    bitsinabag"
  • ichabod6
    ichabod6 Member Posts: 843
    edited 30. Nov -1, 00:00
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    hello BinB,

    As a firm believer in self management I think I can see where you are coming from.
    If by keeping the records you suggest, you find that by eating or drinking foods or liquids (or by not eating or drinking foods or liquids) a pattern forms which you, as an individual, think it worth
    considering or not in changing your eating and/or drinking habits to whatever degree you may find suitable.
    If that is what you are saying I would have no problem or fear of having a go. At the present time I dont need to. The two major blips in my life are rheumatoid arthritis and crohns disease and the medication I take coupled with sensible eating and drinking is a self management technique which is presently working well. A bonus is that the medications, humira and azathiroprine, work against both conditions so I have a fortunate bogof situation.
    I'm bogging off for a glass of Jamesons now.