I hope you're feeling ok today. If not, I hope you feel better tomorrow!
I read this forum every day and I noticed that a lot more people are starting to talk about Functional Medicine, Diet, Supplements etc.
I think this is amazing, but I also see quite a lot of dodgy information posted. If I see one more shameless plug for Clint Paddison's programme I am going to go crazy!!!
From now on I am going to try and share one thing every day that I learn as part of my research. This information will ALWAYS come from reliable sources.
I am deep, deep, deep, deep down the Rabbit Hole of Rheumatoid Arthritis and I have been for almost a year now. I read the latest Scientific studies every day and I am determined to find a cure within my lifetime or at least crack the code, which will enable me to put together a treatment plan that will turn Rheumatoid Arthritis into a minor inconvenience as opposed to such a cruel, life-changing disease.
Right now I am working on my first step towards this, which will be a website where we will translate the latest Scientific research around RA and Autoimmunity into layman's terms so that everyone can understand the information and implement it into their everyday lives.
Our amazing Rheumatologists, Doctors, and Nurses want to help us, but large organizations move soooooooooooo slow and I worry that it may take 10 - 20 years for some of the latest research to be incorporated into mainstream medicine. This is not good enough when we have millions of people suffering every day.
I hope to have this website launched sometime in 2018.
The second part of my quest to solve the RA puzzle will be to set up a private research facility. It will be privately funded, which means we'll be able to focus our research on what we believe the priorities should be. I strongly feel like the big RA charities waste a lot of time and money on research projects that will not bring us any closer to a cure. This is unacceptable to me. Hopefully, this research facility is something that I can start building in 2019.
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My first piece of information to share today is the actual Scientific link between Gluten consumption and Rheumatoid Arthritis symptoms.
At this stage, it is pretty well documented that Gluten has a direct impact on the severity of RA symptoms and disease progression, but you don't often see people do a reasonable job of explaining the Scientific process behind it.
I also want to reiterate that going Gluten Free is not a magic bullet. If you cut Gluten out of your diet, your pain won't disappear completely, but it will almost always improve. Arthritis.org have some information on this here:
But the big question is... What is the science behind this? Why does Gluten make our joints hurt?
So... I'll do my best to explain briefly one part of what we know so far...
Transglutaminase is an enzyme found in different parts of the body. The first kind was discovered in 1959 and so far we have discovered 7 different varieties of this enzyme:
TGM1 is found in the skin.
TGM2 is found in general tissues around the body.
TGM3 is found in the skin
TGM4 is found in the Prostate
TGMX is found in the skin
TGMY has been found in various locations but does not appear to be specific to any one area of the body
TGMZ is found in the lungs and testicles
There is a protein in Gluten called Gliadin that has virtually the same chemical structure as these Transglutaminase enzymes.
Gluten is toxic and the body sees it as a threat. It doesn't matter if you are Coeliac or not. Everyone experiences gut inflammation when they consume Gluten.
In the case of Coeliac disease, the immune system creates antibodies to Gluten, which then results in inflammation. Because the Transglutaminase enzymes have a similar chemical structure to Gliadin, the immune system mistakenly attacks our tissues which contain the Transglutaminase enzymes.
So to summarise...
Gliadin, a protein found in Gluten has almost an identical chemical structure to Transglutaminase, which is an enzyme found in different parts of our body. Gluten is toxic in the body and creates inflammation in the gut for everybody, even if you are not Coeliac. As a result, the immune system creates antibodies to attack the Gluten. Because Gliadin and Transglutaminase share similar chemical structures, the immune system mistakingly attacks Transglutaminase enzymes found in various tissues around the body because it mistakenly thinks it is Gliadin, which is a toxic protein found in Gluten.
Gluten is implicated as a probable cause of almost all modern diseases. It is heavily implicated as a root cause of Cancer and Autoimmune Diseases and there are thousands of Scientific research papers on this topic.
It has been estimated that up to 75% of Cancer cases are caused by Diet:
It is estimated that 70% of people diagnosed with Coeliac Disease also suffer from either Eczema or Psoriasis. These skin conditions often disappear when you eliminate Gluten from the diet. 3 different kinds of Transglutaminase enzymes can be found in the skin [TGM1, TGM3, and TGMX]. It doesn't take a rocket scientist to work out the strong links between Gluten and Autoimmune skin conditions.
Research has also shown that people suffering from Parkinson's and Huntington's Disease have elevated levels of Transglutaminase in their tissues. We also know that Gluten can create inflammation in the brain. Could Gluten be contributing to these diseases? The connections are certainly strong:
How does this information apply to Rheumatoid Arthritis?
The TGM2 and TGMY enzymes can be found in various tissues around the body. It appears that these enzymes are sporadically found in joint tissue, cartilage, and tendons etc. It appears that in the case of Rheumatoid Arthritis, the body creates antibodies to the Gliadin protein found in Gluten, which then mistakenly attacks tissue containing the TGM2 and TGMY enzymes found in our joint tissue. This would explain why the pain of Rheumatoid Arthritis often moves around the body on different days or weeks and why pain can appear in different locations for different people.
The first Transglutaminase enzyme was only discovered in 1959, so it's also possible that there are more enzymes in the body that mimic the proteins found in different foods that we haven't discovered yet. This would explain why eliminating Gluten from the diet only improves symptoms of RA, instead of completely making symptoms disappear.
However...
It does also give us some Scientific explanation for the reasons why fasting for more than 4 days often results in zero symptoms presenting for RA and why various different elimination diets are able to have a profound impact on disease progression and symptom severity.
Here is some more information on Transglutaminase and it's links to RA:
I also want to say that these posts I will be sharing are very basic overviews. There is a lot more depth to them. It will be easy to rip them apart and find holes in what I've said because I don't have the time to go into these topics in big detail.
I could probably write mini books on most of these topics, so I urge you to do your own research if you want more information.
For example, this particular post I have made on Transglutaminase is a perfect segway into what Anti-CCP actually is. Problem is... I can't even go there because it opens up another huge can of worms.
I will try to keep things as brief as possible with these posts. But I am also conscious that I can't give in-depth information and analysis on a forum like this because there are not enough hours in the day.
Please trust me that I have done due diligence on all of the information I share with you. This is coming from a place of Love. I don't like to see people suffer. My wife battles RA every day and I believe I have the resources to one day fix this problem. I am determined to do it.
When you are first diagnosed with Rheumatoid Arthritis they tell you that there is no cure. They hand you a bag of medication and send you on your way.
This is very, very, very poor service.
We can put supercomputers in our pockets, but we can't cure a Disease that affects millions of people? This is not acceptable.
In my profession, problems are only difficult to solve when we do not understand the root cause.
The causes of Rheumatoid Arthritis are well documented. There are thousands of scientific studies that have identified the environmental factors that cause the disease to develop. There is not any one singular cause, but we have identified all the factors that play a role in the onset of disease.
In my profession, when we know what causes a problem, we can reverse engineer a solution. It's standard practice.
With so much information available, the World Health Organization should be ashamed that they haven't already found a cure. But it will come soon. It has to with all the information available and I do feel like the current research is putting us in touching distance of a solution.
Please let me know if there are any specific aspects of Rheumatoid Arthritis you would like me to cover in future posts. I'll try and do one post a day from now on unless you guys don't want me to and then I'll disappear for a while.
At this point, I have a pretty good understanding of the Science behind RA, which is why I am so confident that we are close to a cure or at least a treatment plan that will significantly reduce the severity of the disease.
It also fills me with a lot of confidence that Pharmaceutical companies are pouring money into Microbiological research, instead of developing drugs that turn off critical processes in the body.
I am so sorry that this is such a long post, but there is so much to say about this disease. It could be 1000 pages and we still would not cover everything.
Written by
Allsopp
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I admire you for wanting to study this disease....but Please don't knock the WHO (World Health Oraganisation) These wonderful world wide scientists have been studing RA for almost 100 years....and you have been studing RA for only 10 Months now....having said that...... I've cured my seropositive RA.....how did I do this?...... Well, I've been misdiagnosed.....And, I'm sure that I'm not the only one in this big large world....I'd love to "CLAIM" that I have the "RA CURE", but I would be a liar. I need to look at myself in the mirror....so I would never claim I have the RA cure.... Please do not "Diss" the WHO because you've studied RA for 10 months.
I'vevhad RA since 1999 & have never gone Gluten free. I did toy with the idea, but every medical doctor specialising in autoimmune diseases that I spoke to said clinical tests do not show it would be helpful in RA.
I've got more to do with my life than second guess scientists who spend their life searching for a provable cure.
I'm sure a lot of people eat a miserable diet in the hope they will be "cured" ...I will not be joining them!
It is good that you are supporting your wife's management of her RA like this. It must be such a boost for her.
Your post is very long, with many possible additions, so there is no way that I have time to read it all. However the point I want to make is that what comes across overall to me is that you are being entirely human in the way that you are registering information that you read that supports your theory. And glossing over some of the rest. Do read Ben Goldacre's book called Bad Science. You are falling into some of these behaviours and loosing your objectivity.
For example you write that it is estimated that up to 75% cancer cases are causesd by diet, and provide a link to support that sentence. But your link does not say that! It makes clear that there is one study from the 1980's that gives a compounded estimate for the American population of 30-35%.
I do also have some difficulty with you placing yourself above the many thousands of extremely well trained and expert people who have focused their whole lives on understanding some of these complex aspects of science. And thinking that you understand the science behind RA as a whole - something that I doubt a single rheumatologist or related research scientist would say about themselves despite each having 20, 30, or 40+'years of study and experience. So I do find your post is rather rude.
I don't know what your profession is, but I guess it is much less convoluted and relies on a single science.
So yes, great to provide feedback on what you are learning as it is always of interest since no single one of us can read everything available. But next time perhaps a touch more concise and with a touch more humility?
My RD seems less a gluten response and more an infection related issue and a stress response. Before getting rheumatic fever as a teenager I had repeated strep throat infections and was going through an emotionally stressful time and the exact same thing happened prior to getting RD in my 50s. - so for some of us it might be a āgluten reponseā and for others a different trigger may be present.
Sleep quality has always been an issue for me - I am currently taking part in a study around sleep quality and RD related issues (fatigue levels, pain, concentration levels). Such a study would produce deeper results if supported with better research equipment because I am wearing a movement monitor and filling in a daily log but more understanding could be gained if I was wearing a heat rate monitor, if my breathing was monitored during sleep and if my blood pressure was measured at the same time using a worn device. A way of measuring inflammation levels with an externally worn device would give further info - lack of funds obviously prevents this and Iām not sure such a device even exists at present - to be able to wear a simple patch/implant that I then pass a scanner over to get an instant inflammation reading would give deeper understanding of how my inflammation varies day to day rather than a 2 monthly snap shot via bloods. If a follow up study after sleep treatment was established to improve quality of sleep in participants who need such an intervention would give further understanding of the relationship between sleep quality and inflammation and RD activity - not enough funding of facilities to do this!
Ultra sound devices used for making images of the baby in the womb can also be used to get images of bones/bone erosion and the images are instant but how many of us go to our rheumy appointments and start with an ultra sound of our hands, knees, feet etc, discuss what is seen to be happening/or not and then go on to discuss the effectiveness of our treatments - not me because my rheumy doesnāt use such a device - hand held sonography devices are readily available and are already used by some for this purpose and early RD diagnosis.
Genetics plays a role for some as to how predisposed they are to developing an autoimmune disease - an obvious study area.
Please remember, when you open your research facility, that good research does not set out to prove that something exists (proving an adopted hypothesis is right and you knew it all along) but sets out to show that there is no connection between factors (proving a null hypothesis). This stops researcher biases creeping in- how many pharmesuticals set out to prove that their new medication doesnāt work and after giving that their best shot give and honest report - only after they fail to prove that the med doesnāt work can they drop the null hypothesis of the med not working and scientifically say that the med does work (reclaiming the hypothesis). What I am saying is donāt go out there to prove that there is a link between gluten and RA but go out to prove there isnāt one because we often find what weāre looking for so you will look deeper and truer if your not looking for a connection - when you find a connection your looking for you go āthere I found it - told you so!ā And stop. But if you didnāt want the connection youāll go āmmm, that might be a fluke, Iāll keep looking to see where I donāt find this connectionā. heypresto a more robust study.
There is no scientifically done research that I am aware of around the CP diet and Palio diet so no one can scientifically say that they donāt work - and there is the open door to claims being made around their effectiveness and use of antidotal stories to back up the effectiveness of the diets for the potential client to be drawn in. If studies are done they need to be done by an unbiased research facility who sets out to prove that there is not a link between these diets and RD activity and only after the research has proven beyond a reasonable doubt that there is NOT a āno linkā between the diet and RD activity can the diets be stated as proven successful tool for managing RD. There is no point in CP diet or Palio diet purveyors doing the research as the robustness and validity of the study would be questioned just as we question the validity of claims made by pharmaceutical companies about their med research - theyāre researching their own product and well a wonder of wonders - itās fantastic!!
Well that was a long winded way of saying āwill your research facility and itās studies be truly unbiased or are you setting it up so that you can prove your own pet theories?ā
I really don't care about being right. I just think that we are very far behind where we should be when it comes to Healthcare. I hate to see people suffer needlessly. It kills me. I think a lot of people with Rheumatoid Arthritis are suffering needlessly and a lot more can be done to stop this from happening.
If you look at how much technology has improved in the last 100 years it is mind blowing, but Healthcare has not taken significant steps forward since the 1950's. It's not good enough. The research is out there, but it is not being used.
I think people really misunderstand my posts or I probably don't do a good enough job of explaining myself.
I am a forager.
I forage for information and relay what I have found.
That's why my initial post is full of links to sources of information.
I don't have an opinion on anything, I just relay the facts.
There is a lot of research out there on the individual aspects of what causes RA onset, Disease Progression, and Symptom severity. Problem is, there doesn't appear to be any central organization connecting all the dots.
Most research takes a singular approach to RA. It focuses on the Microbiome, Diet, Infections, Chronic Stress, Mitochondria, Genetics, DNA Damage, Childhood Trauma, etc etc etc etc. But all the research focuses on one aspect and they do not connect the dots between all individual aspects and look for trends and solutions. They are looking for a magic bullet, but they will never find it because all of these factors contribute to RA onset and progression.
All these aspects add up to paint the picture of RA. The cure does not lie in tackling one aspect. It lies in tackling all aspects.
When you start to look into each individual aspect of the research you start to paint a picture and tie everything together. There are so many connections and trends. I've only been researching this stuff for 1 year I promise you that the number of strong trends and connections are staggering.
Based on what we have learned so far collectively as a species, I cannot comprehend why we aren't much closer to finding a cure. There are so many correlations it is staggering.
My aim for a research facility will be to assemble a team of people that can become experts in every single factor that leads to the onset and progression of RA. We will then tie our knowledge together to form a treatment programme that systematically addresses each individual aspect of the disease, which is highly specific to the individual.
For example.
Someone that has suffered a lot of Childhood trauma may need more Psychological support than someone who has eaten a terrible diet all their life and needs to focus more on correcting nutrient deficiencies are a priority.
We will then acquire resources to run massive clinical trials that chip away at each individual aspect of RA.
This is what the current Arthritis charities SHOULD be doing. But they're not. This is what the World Health Organization SHOULD be doing. But they're not.
This will take a lot of time and cost a lot of money. But there are millions of people living in the world that would give anything to not have inflammatory arthritis anymore so I am sure that we can find a way.
We can't trust Pharmaceutical companies or corporate charities to have our best interests at heart. But collectively I think we have a lot of power.
Social Media gives us the opportunity to work together and fix problems ourselves. We no longer need to rely on Governments, Healthcare institutions or Pharmaceutical Companies to move us forward.
Every year the amount of information available online doubles in quantity.
I can't help but feel that Medical Science has not progressed much in the last 70 years because historically it has been very easy to keep a lid on information. Social Media and the internet has changed that.
Here is one example of what can be done with money and power:
$50,000 has never been a lot of money in the grand scheme of things. Imagine what Pharmaceutical companies and Governments could achieve with Billions of dollars of revenue at their disposal...
With respect, I genuinely find myself wondering about the foundations your āplanā, what itās actually based on? Iām sorry, It seems a bit pie in the sky to me- but good luck!
I don't agree. The last 70 years have had some stunning breakthroughs.. for example MRI's only started being used in the 1970's. Or in this century what about sequencing the human genome? A pretty major advance I feel.
And of course there are many correlations to be seen - we are talking about the single human body after all. But what is the most complex is not to note links but to correctly identify the causal relationships and potential consequences of interventions.
There seems to be an abundance of factors leading to different kinds of RA and AI diseases. If you are able to find the main causeative factors then really cure is possible. Here is an article that I found interesting where the central culprit was hormonal dysfunction and deficiencies. When these were corrected the RA did disappear.
How can you say there have been no advances in medicine ? Nanotechnology, genetics, laser tech ...there are new discoveries everyday it seems. One brilliant young man in Alberta recently developed arm bands/ sensors.with these arm bands a person with tremors can share the experience with someone else, like the doctor. Now doctors can experience it first hand. He developed this technology to better understand his twin with Parkinson's.
Nanobots can be injected in the blood stream to destroy cancer cells without surgery. The same for heart surgery, surgeons no longer need to open the chest. They can do laser surgery in remote areas using computers. Just to name a few. If this is not progress I hate to think what it would be like to work for you. I totally understand how frustrating it is that not a lot of progress has been achieved for RD. MTX and Biologics are great if they work but eventually fail. This is problematic in my view as is the lack of statistical research. Perhaps if you approach the study from a singular perspective you may gain some ground. It is an incredibly complex condition so will undoubtedly require divers solutions. I applaud all the doctors, researchers and scientists currently working towards that goal. As many have already indicated, the solution is a cooperative effort and an open mind and heart.
Many wonderful fantastic inventions in medicine but concerning the cure of chronic illnesses like cancer, diabetes, RA and so, very little has happened. Yes symptom control to a varying degree but no cure or even decrease. Here is a mindopening article on cancer and it's treatment accomplishments.
Thank you Allsopp, always encouraging and energizing. As you said RA is so very complex and can be looked upon and analyzed from so many different angels and levels of understanding. To combine all knowledge and see the interaction that defines RA, is an enormous quest where science is starting to take big steps forward. We as patient can follow this boom, we can use our bodies to experiment and make sense of new findings or we can just sit and wait at the side lines for "proof" not trusting the signals our bodies give or new science that has not been proven. The sad fact remains that meds and their effects have not been studied enough. What in fact is the proof on the meds? Many serious questions are still open.
It is quite understandable that we need something we can trust, especially when we are in pain and our brains muddled with fog. We need someone to make it better, give us our life back. Everyone of us would need a coach by our side like you who helps us to see the bigger picture and not make decisions concerning our treatment too hastily, someone to give us hope and has respect for our wellbeing, not just concentrating on symptom relief to a price not known.
Reflecting upon the effect of gluten is a central topic where inflammation is concerned and something that has been quite extensively studied. It is also something that we can test without being afraid of ill effects. Thank you for bringing it up and hope this will encourage those of us that haven't tried it to give it a goššš»xx Simba
Thank you, we need facts! I agree with much that helixhelix posted in response too.
Hoping you can bring fresh insight based on empirical approaches to good research.
Sorry, just not going to check out all those links, far too much all at one time when brain fog and fatigue are a 24 hour experience most of the time.
May I ask, what is this seeming 'vendetta' š³ you have towards, the Whole Foods Plant-Based Diet/ Lifestyle ā PP process (in particular), Allsopp? š¤
(PP is merely a WFP-BD/L process tailored toward RAers/ Autoimmuners. š š )
It's not only helped me, but many others. šāāļø š šāāļø š
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Those of us who've been helped by it, talk š£ š¬ about it/ refer š to it. š
Those of us who haven't been helped by it, talk š£ š¬ about it as well. š
Isn't that one of the purposes of a public forum? š¤
To share ā constructively ā what works for us & what doesn't work for us? š¤
Just as those who've been helped by any dietary/ lifestyle process and/or any medication š š , are allowed to freely, peacefully āļø speak about what worked them & what didn't work for them? š¤
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I believe that's what you're doing right now: freely speaking about what works for you & your beloved? š¤ š
Mightn't someone consider, mis-interpret, mis-construe that as promoting? š¤
Perhaps even 'self-' promoting? š¤ š
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WFP-BD/L is now recommended by Kaiser-Permanente, ( healthunlocked.com/cure-art... ) "Kaiser Permanente, the largest U.S. managed care organization, publishes patient education materials to help make plant-based diets the ānew normalā for patients and physicians."
ā¢ Dean Ornish, Neal Barnard, T. Colin Campbell, Caldwell Esselstyn, John McDougall, Michael Klaper, Michael Greger: healthunlocked.com/nras/pos...
ā¢ FREE Whole Foods Plant-Based Diet/ Lifestyle (WFP-BD/L) Info for Interested Autoimmuners/ RAers: healthunlocked.com/nras/pos...
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These reputable physicians are already helping people (via dietary lifestyle means, as well as medications) improve their spectrum š of autoimmune conditions. š š
Perhaps with your energy ā”ļøā”ļø & enthusiasm š āØ for seeking solutions, Allsopp, you'd appreciate perusing šØāš» / scrutinising šµļø š some of their works š š š ?
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Maybe their foundational work might contribute toyour research efforts? š¤
Maybe view it as "standing on the shoulders of giants" š“šæ rather than "re-inventing the wheel" āļø ? š¤ š” š¤
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Hmmm . . . wondering aloud š¤ š š¬ . . . if any of their work sparks š„ your interest (if you choose to explore their works), mightn't you consider contacting these folks & consider 'melding' your (months of) research efforts together with their (decades of) research efforts? š¤ š¤
Might save you a lot of time ā± & energy š ā”ļøā”ļø in the long run if you choose to create/ develop a 'private research facility' from scratch? š¤
Leap frogging šø might be a practical/ sensible technique to consider? š¤ š
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. . . . . . . . . . . . . . . . . . . . . šø
Leap frogging . . . šø . . . . . . . . šø
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š¤ š
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Aside, yet related topic:
Don't know if you recall 4 months back that you'd raised concerns about the PP process in: Dietary/ Lifestyle Considerations for Rheumatologists to 'Ruminate On': healthunlocked.com/nras/pos...
I'd taken time ā³ to research šµļø š & write answers your queries ā as best I could. š š
I'd looked forward to hearing š back from you & to learn š¤ if the response addressed your concerns. š¤
So far, I've not heard anything? š¶ š
If you've time š° , I'd like š learning from your perspective. š
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Of parallel interest/ curiosity š¤ , several days back, there was another fellow, Richard96816 ( healthunlocked.com/nras/pos... ), who also appears to have a negative š opinion/ attitude toward PP process as well, & also felt the need to share š£ š¬ that.
I'd also taken time ā³ to share with him what I'd learned š¤ / experienced š ā 1st hand ā ā over time š š š š š š . . . & to hopefully clarify misconceptions & encourage him (& his friend) on a course toward better understanding. š š
Yet, that too, (to date) has received the same non-response. š¤ š¤
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Don't know if people merely 'lose interest' š“ in a topic they were once impassioned š / curious š¤ about & thereby feel no need to respond š¶ , or they never see š the reply, or simply don't have time ā± to say anything in response? š¤
Dunno . . . š¤·āāļø š¤·āāļø
Don't know if you've any thoughts (on this 'bit of an 'off-topic' query') that you might like to share? š¤
I'd appreciate learning your perspective in order to better understand. š š
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Wishing you (your beloved wife š ) well, Allsopp. š
She is indeed fortunate having a loving spouse š¤µ vested in fully researching her š° recovery. šš
That's the beauty šŗ of a forum, where there's genuine š, substantive āļø , meaningful š discourse š£ š£ š£ , an open sharing of:
ā¢ Information š š
ā¢ Ideas š”š” š¤
ā¢ 'Thinking aloud' thoughts š¤ š š¬
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š š šŗ š
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Kind regards, āŗļø
Kai
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Aside, 'aside': Have recently heard an intriguing conversation with journalist, David McRaney: drdrew.com/2017/david-mcran... . Don't know if it's a type of topic that might interest you? š¤ Descriptive blurb reads: "[Dr.] Drew [Pinsky] welcomes podcaster and author David McRaney to the show, and immediately dive in and have a very in depth conversation about the Dunning-Kruger Effect. . . . " Maybe you'll find it of interest/ use in your current research. š¤ š š
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I've had RA for 30 years. Tried all kinds of 'diets' and medication and the only thing that helps me is following my Rheumatologists' advice. On the other hand my grandma, born in the late 1800s, also had RA. None of the treatments available to me were available to her. She didn't have a specialist to look after her treatment. She ate all natural food (grown in her own garden which was organic). She used no additives or what she called 'new fangled' diets. But her RA followed the same pattern as mine anyway.
There is no cure for RA, I will wait for God's Heavenly Kingdom to cure not just RA, but All ills. ā[God] will wipe out every tear from their eyes, and death will be no more, neither will mourning nor outcry nor pain be anymore. The former things have passed away.āāRevelation 21:4.
I did say in the original post that Gluten is not the magic bullet. It is only one aspect of RA onset, disease progression and severity of symptoms.
As you know RA, is caused by Chronic inflammation in the body, but there are a lot of things that cause Chronic Inflammation.
Gluten is highly inflammatory and has zero nutritional benefits. Eliminating it from the diet for someone who suffers from a Chronic Inflammatory condition is only a good thing.
I'm so sorry to hear that your Grandma also suffered, but there were a lot of things around in the 1800s that would have caused her to develop this horrible disease. Childhood Trauma, Chronic Stress, Infections and exposure to environmental Toxins are also huge factors in RA and they would all have been present in the 1800s. Gluten just exacerbates the problem because it is highly inflammatory.
I am just trying to give people something new to think about every day and break down the Science behind these factors.
This is a complex disease that can't be explained in a forum post.
It concerns me how some people still think that this kind of stuff is Pseudoscience.
Personally I would say that chronic inflammation is the core symptom of RA, not it's cause. No-one knows it's cause for sure. Many of the things you raise have standard scientific backing. What is pseudoscience is linking things together without proof of causal relationships.
As anyone who truly understands a d/l process ā through 1st-hand practice (experiential learning) ā a d/l process means not only implementing a food roadmap šŗ , but also implementing lifestyle changes simultaneously. š¤
Without fully grasping what a complete, accurate, quality 'roadmap' šŗ is, we easily get lost š¤¦āāļø š¤¦āāļø along the way. š
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Fortunately, today, there are useful roadmaps šŗ that guide š us towards healing. š
We each need to explore šµļøāāļø š, research šØāš« š , & discover š along the way š£ ā through experiential learning š¤ ā which of the various roadmaps suit us. š¤
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Whatever d/l process we land on, it's (unfortunately) hard work š šļøāāļø ā .
Yet, when we've moments of reprieve & we're 'up for' inching š forward š£ , we make effort. š
Provided we've 'a spark š„ of hope', 'a glimmer āØ of oomph' left us, we move forward at whatever pace we're comfortable. . . š . . .
It's very understandable, how with such long-term, life-long, chronic illness that we 'get the stuffing knocked out' of us. š¶ š¤¤ šµ
With each passing year, each passing decade . . . hope/ faith wane š , resignation/ acceptance wax š . . . š
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Think your grandma šµ would find 'pause for thought', (š“š“), at the experience of youngsters today, such as Katy š±āāļø & Cole š¦ ( healthunlocked.com/nras/pos... ) who are meeting with good fortune pursing their d/l regimes.
They're merely 2 anecdotal examples of what can be accomplished by people of any age, once they've found a roadmap šŗ that works well for them. š
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There are other improved 'anecdotal' people (old-sters & in-between-sters) who may also agree, there's NO CURE.
Yes, there may well be "NO CURE"!! šÆ šÆ šÆ . . . š š
Yet, for all (practical, day-to-day) intents & purposes ā 'cure' becomes moot when our QoL is significantly improved. š
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Merely additional thought:
Those of us who've actually had the experience (of improvement via d/l), never wish to go back to our previous debilitated states. š³ šØ š°
We do what we can ā to the best of our abilities ā to maintain wellness & avoid backsliding. š š
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It's a 'freedom', a 'removing of shackles' ā a 're-birth', a '2nd-chance', a '2nd-wind' ā sorta speak . . . š¬šØ
Once we've experienced our 2nd-chance, none of us are willing to give that up nor allow it to slip through our fingers. š
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If you ever have the opportunity to speak with actual implementers, (š“š“), who diligently follow an actual d/l process ā long-term ā (not a few days, or a few weeks, or a few months) but many months & even years . . . I think it would reveal the amount of diligent work/ effort required to achieve, maintain, & sustain wellness throughout each phase of a d/l process . . . š³
.
[A 'dirty little secret' ā just between us, (š“š“). (Shhh š¤ . . . kindly don't tell another living soul š» .) āŗļø Few people know this . . . it gets easier over time. Shhh . . . š¤ (Mums the word.). . . The hardest, most difficult part is the early phases . . . when trying to break old habits, establish new habits . . . š³ If you can get through the early phases ā along with your rheums. monitoring (of course) ā (however long it takes, weeks, months, even year(s)) it GETS easier . . . š¤ Yes, it gets easier & EASIER as time goes on & you 'heal'/ improve more & more . . . little by little . . . šÆ ]
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If you don't speak with an actual living autoimmuner who's gotten through the early phases & managed to breakthrough onto the later phases, you'll never know about how much easier it gets the further along you move through the process. š³ š±
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As with anything in life ā any new experience, any new med, etc.:
There's no guarantee.
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For some, the process doesn't (appear to?) work. š
For others it does work. š
How? Why? It's a mystery to me. š¤·āāļø š¤·āāļø
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And, the 'degrees of improvement vary'. š
Merely look round the forum, & you'll hear about the spectrum š of experiences.
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For some d/l is a useless 'dud', for other's it's a 'life-changer', & others fall somewhere in-between. š¤
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Any improvement is blessed improvement. š š
And, we fall to our knees in gratitude. š š
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Merely eye-bleedingly š tedious š ramblings š¬š¬š¬ . . . (from an actual d/l-er) that may have many a grandma rolling over š in their grave ā°ļø . . . not from upset š¤ , but from delight š¤ that there's realistic hope āØ šāØ nowadays . . .
Just read Kais answer and he does bring up a relevant question. If we are looking for answers through better understanding and new scientific research it is really quite interesting to understand how different diets affect us and what may be a curative factor in them, from a more science based view. I would also very much like to hear your thoughts on PP and what you find dubious. I am learning new things all the time and really believe we can learn from each other if we just share our thoughts and the research we have studied. Diets should not be holy cows, we should be able to disect them and understand them and why they could help us or then not. All the best. xxSimba
I did say in the post that eliminating Gluten is not the magic bullet. It is just one aspect of RA. It will effect some people more than others. But eliminating Gluten will almost certainly improve symptoms for everyone.
If you learn more about what Extreme Coeliac is then you will start to see that it is not always easy to completely eliminate Gluten from the diet because it is in everything and Pseudograins found in many Gluten free foods are also problematic.
The safe approach is to go grain free, but I don't want to stir up another hornets nest by talking about that.
Like I said. It's impossible to go into the level of detail necessary on a forum to explain these things fully.
My intention is to give people enough information that they go out and do their own research.
Also a few people have said that there is no proof that diet has any impact on RA symptoms. This is just not true. Go to the following website and see for yourself:
At this point it is pretty well documented that Gluten has an impact on RA symptoms and disease progression. Joint pain is also listed as a symptom of Coeliac disease.
These posts are just intended to try and explain the different aspects of RA in more detail for people that are interested.
There are at least 20 factors that appear to have an impact on RA symptoms and Disease progression, but they all share the common trait, that they all contribute to inflammation in the body.
Gluten is highly inflammatory for everyone. There are no exceptions. It also has zero nutritional benefit.
I wont post anymore on this thread, but I have to address comments when people say there's no research on this topic. This opinion is very dangerous because you could influence less experienced people from finding the truth. You are doing a lot more harm than me by holding this opinion.
At this point in time the research is overwhelming. If you don't believe it, then I really don't know what to say to you. Please go to the following website and see for yourself:
I cut out gluten ie all wheat products as gluten in wheat has been changed by centuries of modern agriculture.
I did best when following that path AND cutting out sugar in most foods, generally eating healthy, real foods.
Spelt flour contains gluten too but has remained unchanged for thousands of years. I bake non yeast (because I cannot knead and donāt yet have a bread maker) spelt bread, use spelt flour for all baking though I do very little baking now.
Do you know about crop desiccation methods of harvesting oats and wheat?
Practised in both UK and USA, it means crops are contaminated with glyphosate and soil is depleted so that plants are unable to grow properly after about a decade of this method.
I've been following your posts over the last few months and before you mentioned it I had no idea about the link between Mycoplasma and Autoimmune Disease.
It certainly makes a lot of sense.
I haven't had time to look into Mycoplasma yet, but it is definitely on my list.
Thank you so much for posting about it.
It's another big rabbit hole to go down and I can't wait to learn more about it.
Just signed up a month ago, started posting a week or so afterwards.
Thanks, I think mycoplasma is one of the keys, and perhaps points to one of the reasons Dr Brown had high success rates in treating RA with monocycline.
As you say there is an abundance of evidence and those who find this interesting will hopefully find this useful. There are always those of us that are not interested and that is certainly their right but see no point in trying to extinguish the enthusiasm of those who find looking for answers motivating and feeling energized by this.
It is a good idea to bring up one point at a time. Gluten sensitivity in AI playes a role that is perhaps best accepted even among medical doctors today. Waiting to hear about the next topic.ššš»xxSimba
Heaven preserve me from anyone who states that hypotheses are facts. The one fact that I know about RD is that it is an autoimmune inflammatory disease . ....and I have it. It affects people in many different ways, some people are lucky enough to achieve remission, others have massive on going problems.
I rely on my rheumatology team, who give me excellent care, and involve me in decisions about ongoing treatment, I have taken part in trials to extend knowledge, and I keep myself informed about current research and reputable new treatments, and participate in aiding research in any way I can.
Unless you are a multimillionaire, I assume that you are looking for funding to set up your facility? Have you any qualifications, other than having a spouse with the disease? In view of the massive advances in this field in the last 20 years, I find your arrogant dismissal of these achievements incredible.
I do hope your wife is having the best of treatment, and as well as possible
For sure there have been great strides in understanding and treating this and similar conditions- when I was diagnosed my mum was horrified and told my older sister Iād probably be in a wheelchair within 3 years - as a nurse of the 50s era that was her predominant experience of RD. 3 years in Iām still working full time - all be it with some fatigue dragging at my ankles and a degree of fog in my head! How come? Advancements in science that has enabled me to be diagnosed earlier than I would have been and provided me with effective medical intervention.
There is definitely a place for āfood as medicineā out there to assist my daily wellbeing but Iām not about to throw away my MTX just to test out a scientifically unproven diet because I canāt undo joint erosion but if my liver struggles I can temporarily stop my med to let it āregroupā - Iāve waved my med dose (from normal to low to no dose and back up to low, medium, normal dose over several weeks) when my liver bloods have started creeping up or WBC count dropping too low with no Iāll effect (my rheumy knows I do this). What do I do if that raw food diet doesn't stop the joint pain or stem that piranha nibbling at my bone? Eat another carrot or drop my goji Berry intake until the disease activity mysteriously disappears?
I am not with any diet program. My rheumies told me that RA has nothing to do with food, it is an auto-immune problem, so he said I can just eat anything I like.
Working closely with my rheumies, I am in remission after less than 2 years of treatment. I am very thankful to the advance in the medical field and the research all these scientists have done. I trust the scientists and my rheumies more than anyone who comes forward to just push a program or plan to cure RA.
I think it is really important to make a distinction between chronic diseases and other medical conditions, when we are talking about the efficacy of modern medicine and the treatment of patients. The best modern medicine has to offer the chronicly ill is relief of symptoms at best, we can not dispute that these medical interventions more often than not cause new problems and often in fact are the cause of death. The chronicly ill need a new approach where understanding better the root causes of the diseases and finding ways to help the body correct a dysfunctional situation. This is what functional integrative medicine is trying to do and this is why this approach gives you hope.
Merely calm, food for thought, Eiram50, said with thoughtful respect & considerate reflection š š :
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ā¢ Isn't it equally arrogant for a rheumatologist to declare: "RA has nothing to do with food"? š¤
And,
ā¢ Isn't it equally arrogant for new/ short-term RAers (or even old-time, long-time RAers) to proclaim those with different experiences/ different approaches (& those who've actually helped others improve/ heal) are "pushing a program"? š¤
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Yes, perhaps (youthful?) Allsopp in his exuberant, enthusiasm to find "a cure" (on behalf of his beloved wife š° ) has inadvertently 'rubbed people the wrong way'? š¤ š¤¦āāļø š¤¦āāļø
(Perhaps youth & enthusiasm can be 'cut a bit of slack' š , without 'cutting the legs out from under' šÆ ? š¤ )
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Yet, perhaps at the same time, he's hit upon kernels of truth š½ , which people are not ready (or willing) to hear? š¤ šÆ
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š š½ Perhaps rheumatologists are indeed mistaken & the current approaches to chronic diseases will indeed change? š³
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š What if our rhuems. are mistaken? šØ
š What if they do need to incorporate additional concepts/ approaches into their current practices/ protocols? šÆ
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ā WHY such seeming resistance to exploring the dietary/ lifestyle (d/l) fronts? š¤ š¤·āāļø š¤·āāļø
After all, d/l already has mounting examples of anecdotal success. (Surely these 'anecdotes' aren't ALL 'bogus' or '1-offs' or 'flukes' . . . attributable to mere 'misdiagnosis' or 'luck' or fanciful 'imaginings' or outright 'chicanery' . . . šÆ š š )
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ā Why continue to (willfully?) 'turn a blind eye š š' to what is helping many autoimmuners ā although it's not "proven" to rheums. satisfaction?
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ā Why not 'open the door' to new approaches with a successful 'track record' rather than slam it shut šŖin the face of people who are doing the hard work of helping themselves & helping others? š¤
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These new approaches have traction & may well be the next best thing to "cure" for those of us who aren't likely to be around to see a 'cure' in our lifetime? šÆ š¤
Yet, we sure as heck appreciate an improved QoL (Quality of Life) in meantime. š¤
Merely something to kindly, respectfully, reflect on. š š
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Again, perhaps Allsopp's 'manner of speaking' šÆ (phrasing š¬, word choice) offends ā is read as 'arrogant'.
But, perhaps it's the HEART ā¤ļø (the meat š, the core āŗ, the essence āØāØ ) of WHAT he's saying (the kernels š½ of TRUTH) that upsets people far more? š¤
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Merely an additional perspective for pondering š¤ š š š . . .
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Perhaps 'arrogance' is in they 'eye š of the beholder' depending upon where one sits. š¤
[Or, strangely š³, some (choose to) strike each other over the head šš with the paddle and poke holes šŖš³ š¦ . . .šŖš³ š¦ . . . in the communal boat š£āāļø . šØ . . . To what end? š³ . . . Sinking their own boat? š¤¦āāļø . . . šÆ . . . š š ]
Related Aside: AARA 's 'Microbiome/ Gut Health Book List' from AARA ( healthunlocked.com/cure-art... at the Cure Arthritis Community forum) has received acknowledgement & appreciation from the 'CureArthritis Administrator'. š
Once again, the food, gut, microbiome connection is acknowledged/ reinforced as the seat of the autoimmune system (the inflammatory response). š š
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Thus, Allsopp's attempts to draw people's attention to the significance of the microbiome, food/ gut, autoimmune system's inflammatory response connection is most relevant ā despite the (seeming) 'lack of awareness' (wilful?) ignorance of the rheumatologists that Amy_Lee (& many of us) receive our information (& guidance) from. š³ And, as well-meaning & as kind-hearted as intentions may be, inaccurate information gets perpetuated/ disseminated by even those with "the best of intentions". š³
(Apropos "The road to hell š„š„ is paved with good intentions." š³ š¤¦āāļø š¤¦āāļø )
thankyou again ... kai, allsopp, aara, dblehelix, and more.. let's keep the debate and info' sharing going! pleeease. Just discharged from respiratory clinic as lung damage from mtx has gone , via swimming and singing. only a rheumy to see now. the big irony y'day was that the pneumo specialist has now developed RA and asked for any info i had re paleo diet, microbiome etc ... so was able to summarise 4her the info etc i gained from the uni symposium/conference on AI, autoimmune, diet, etc etc. last May - and now it's being re-examined, criticised and discussed here again. [sorry, that's inaccurate ... don't recall much discussion or ???s back then.
Oh my, "With respect your Rheumatologist are wrong."...Did I really read that?..... How can Amy Lee's rheumatologist be wrong when she is in remission?
Where is the respect? .... Just gobsmacked at that arrogant & ignorent statement.
In this day & age (with the Internet & all) it seems remarkable (highly improbable/ highly unlikely) they'd be unaware of such research (simply skimming AARA's 'Microbiome/ Gut Health Book List' . . . ( healthunlocked.com/cure-art... ) with the abundance of accessible resources. š³
For anyone to not see that ā to willfully ignore, deny, or 'turn a blind eye' ā would appear to be ignorant š¤¤ , incompetent š¤” , or lying š¤„ . . . . š³
To state this 'untruth' ("RA has nothing to do with food . . . ") to patients is misleading, misguided. š š
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It's a gross disservice:
It prevents patients from exploring šµļøāāļø š dietary/ lifestyle approaches (in conjunction with their existing med š š regime) that can improve proliferation (& diversity) of 'good'/ gut bacteria in their gut microbiome. Thereby improving their overall health (including joint health via reduced inflammatory response from the immune system seated in the gut ā»ļø ). š“
[Merely my overly simplistic (non-scientific, non-medical) 'layman's lingo' š³ ).
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Nonetheless, despite those details being 'imprecisely known' ā that doesn't mean we cannot or should not attempt to improve our gut microbiomes via dietary/ lifestyle means. š“
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We should not be discouraged/ dissuaded from trying foods that feed our 'good' gut bacteriagiphy.com/gifs/30MPjZUuRDsM... . š“
And, for such a medic šØāāļø to tell an autoimmune patient (a patient with an inflammatory condition) to "eat anything they like" beggars belief. š³
. . . š§ Endlessly repeated/ propagated by 'the uninformed' who unwittingly spread false information amongst untold numbers of (innocent & equally uninformed) people. giphy.com/gifs/1iLoYLqLGFiL...
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Don't know whether to laugh š or cry š at proliferation/ dissemination of misinformation perpetuated by the well-intentioned, yet ill-informed. š
Blessedly š , old-bies š“ šµ (who've been around the block š š a few times) KNOW š far, far better & side-step š£ š§ these pitfalls š³ , these 'rookie errors' ā š« . . . š
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Unfortunately š, new-bies š¶ š¦ š§ š±āāļøš± (just starting out) are easily led astray š & readily fall headlong š into the pit š³ . . . šØ giphy.com/gifs/dyBE1JIkT7Ht...
Kindly š , please š , please š , be very thoughtful š¤ , reflective š¤ , pondering š¤ of anything you read or hear.
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. . . š Always "consider the source". š¤
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. . . š Always use your own mind šāāļø š , your own gawd-given š ability to reason š¤ ā to think things through logically ā step by step š£ . . . . 1ļøā£ 2ļøā£ 3ļøā£ 4ļøā£ š š”
Thank you for posting your thoughts and findings. I too have been doing research on possible causes, food and functional medicine.
I was diagnosed with RA at 55. There was no history of RA in my family and I was not a smoker. I scheduled an appointment with the local rheumatologist and based on my RA factor alone was prescribed mobic and MTX. I nevet used the MTX. Instead I stumbled upon articles by Dr. Mercola and Dr. Amy Myers. Cutting back on glutens and the taking of supplements has reduced my RA factor and C-RP numbers by 50 percent. Another significant diet change for me is the elimination of artificial sweeteners. I may occasionally cheat and eat a gluten (hamburger with a bun) but I have absolutely ridden my diet of artificial sweeteners. I have the occasional joint stiffness but use an NSAID as needed. I will continue to fight the good fight and greatly appreciate your research.
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RHEUMATIOD DISEASE......
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