Posted , 9 users are following.
I am awaiting an appointment with a specialist but wondered if any changes to my diet might help? Any foods to avoid? Etc.
Thanks
Caroline
0 likes, 39 replies
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TreatMeGently caroline90579
Posted
I'm 48 and have been gluten free for 22 years now.
don't believe anyone who says that gluten free is a fad - because there is are so many studies now that prove that autoimmune diseases are not just our bodies attacking us for no reason.
All current research is now focused on the gut - and the bodies processing of proteins (both bacterial and food).
For Gluten - Professor Alessio Fasano has proven that gluten creates a chemical to be released called zonulin in all people (not just celiacs) - this chemical opens up the gut lining to allow proteins to pass in to the body.
For Bacteria - Professor Ebringer has sequenced genes from certain bacteria that pass in to the body from the gut and has aligned them to genes in people that develop RA - and my own AS.
Do some searching yourself and look at sites such as ncbi free medical sites that contain a history of medical studies in to arthritis.
Also Lookup -
Fasano Rheumatoid
Vojdani Rheumatoid
Barbara Allan Rheumatoid
Rheumatologist - Dr. Gail Darlington
Then look at the Roadback website - where many people are being treated for RA with low dose antibiotics - so we are in a position where doctors continue to say "we don't know what causes RA" - but there are some out there who are on track.
Happy to help with any more advice -the Doctor that saw me at age 19 for my arthritis was a famous allergy specialist call Dr. John Mansfied - who specialised in elimination diets so this was the beginning of my journey.
CA-Lynn TreatMeGently
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Light CA-Lynn
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But the approach to all alternative treatments, whether diet or supplements or mysterious snake-oil potions is always the same: experiment, experiment, experiement.
Some things work for some people some of the time...some for some people all of the time.
The only way to find out is to try it.
mu111 Light
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helen263490 TreatMeGently
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CA-Lynn caroline90579
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TreatMeGently caroline90579
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If people say that something does not work then it means it did not work for them.
I do not say that gluten free is the be all and end all for helping arthritis. It is almost certainly multifactorial.
CA-Llyn has quickly replied regarding Fasano without research in to his full studies beyond celiac - Alessio Fasano's research extends to Diabetes, RA, AS and even certain brain conditions including Autism. Perhaps they read Wikipedia ?
There is a good paper by Thorne research - if you search for "thorne lamb corn" on the Internet that highlights other foods that are commonly linked to arthritis. This paper actually shows that Corn is the number 1 food that people with RA reacted to in their study. So it's not cut and dried.
Light is 100% correct - experiment and you might find that any required drug regime for your RA will be reduced.
There is other research too that the profile of protective gut bacteria "wax and wane" in line with arthritis flares - which is why people that do low carb diets or temporary fasting can get relief.
I am not just gluten free - I am also corn free, and greatly restrict cows milk (it flares my skin and eyes).
Lastly -and sorry to ramble - but certainly at first avoid the gluten free isle in the supermarket. Much of it is heavily processed. It is no wonder to me that a gluten free diet does not work when they are promoted highly processed corn products - which contain a protein called zein that is so similar to gluten that it effects many celiacs.
Best diet start points IMHO are
Paleo
Specific Carbohydrate Diet
Weston A Price
CA-Lynn TreatMeGently
Posted
No, it might surprise you but I only read credible medical literature, which rules out Wikipedia as a source. I actually did read some of Fasano's studies as they relate to RA.
I am very aware of his hypothesis of the triad of conditions that he believes triggers RA [genetics, environmental, and leaky gut]. The genetics concept is not new. The environmental concept is not new. The leaky gut concept has been tossed around by others over the years. But I'll say it again.......there are far too many people with RA who do not have leaky gut.
And just so you know, I've been researching RA for over 20 years.
The takeaway point is: this is a serious disease that requires serious meds. If you delay with the idea of using alternative medicine, you run the very pronounced risk of irreversible damage to the joints.
TreatMeGently CA-Lynn
Posted
Who said to just use alternative remedies? Not me!
Who is advising people to not bother with gluten free or any diet changes ? You!
How do you know how many people with RA do or do not have leaky gut or raised anti-gliadin antibodies?
If you read Fasano's research carefully - it says that -
'...we concluded that gliadin activates zonulin signaling irrespective of the genetic expression of autoimmunity, leading to increased intestinal permeability to macromolecules'
Just to explain - if you cannot understand, gluten opens the gut to become leaky in everyone regardless of whether they have celiac or not! He explains in a youtube video that the body sees gluten as if it is a bacteria.
I am sure if you asked Fasano directly - he would say that eating gluten when you have any autoimmune disease is a very bad idea. In fact he was asked about Sjogrens in the video.
Top rheumatologists visited a parlimentary health comittee a few years ago...
Associate Parliamentary
Food & Health Forum
The links between diet & arthritis
5-6.30pm, Tuesday 8 February 2011
Committee Room 17, House of Commons
Minutes.. words spoken by the doctors at that comittee -
'We do not treat patients well. We give them anti-inflammatory medicine which is expensive, only partially successful and which has side effects. We could help a lot of people by suggesting they try an elimination diet and, if it does not help them, they could try the drugs.'
They would like the policy to be diet changes first then assess the drugs required.
Why just switch off the immune system at the first referral with powerful drugs! They might work, until you need another one - but all the time your taking them it is impossible to assess any underlying possible causes.
I wonder sometime if drugs companies plant people on to forums to muddy the waters!
The young lady asked for ideas that might work for her not what didn't work for you. What is a forum for?
helen263490 TreatMeGently
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susan342 caroline90579
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Be careful not to make too many drastic changes to your life, in the hope they will work. You need to be able to get on with your life and fit in with others.Try to teach, your partner and those closest to you about RA by giving him or her sound information from accredited sources based on the best available evidence. Fad diets may appear to be of benefit, because you belief they will work. Coeliacs have bowel abnormalities which are corrected by a completely gluten free diet. RA is not Coeliac disease. Personally I would keep to clincally proven treatments, by this I mean medically peer reviwed research that has been confirmed by other researchers. As new drugs are discovered you may be asked to take part in trials. Weigh up the possible advantages and risks to you. It is vital that sound unbiased evidence can be obtained, but it is also important that you are in charge of what happens to you and that you are confident about the skills and knowledge of those treating you. Try to become a member of a national rhematoid arthritis association who will give you support, keep you in touch with research.
TreatMeGently susan342
Posted
I am careful to say do not forget that drugs can help RA - but you have to be aware that these drugs that "work" are still in some means experimental.. Take sulphasalazine - they dont even know why it works for RA - yet they do know that it is an antibiotic (which they seem to put down to coincidence). Methotrexate too was a Cancer drug that stops cell divsion - and disrupts bacterial growth.
Celiac disease sufferers do not have bowel abnormalities - their bowel and gut lining are attacked by there immune system because the tissues in their gut and other parts of their bodies are similar to a protein called (gliadin). Celiac is not just gut / bowel based - it is whole body like RA - take Gluten Ataxia (brain), Dermitis herpeteformis (skin).
Non-Celaic-Gluten-Sensitivity is the hidden iceberg in autoimmune diseaes - a gluten reaction is not specific to just Celiac disease.
My personal view is that the various offical charities and agencies are not looking at all the research - this is a multi-billion pound industry for drugs companies - and they are set to lose out if "cheaper" antibiotic therapy or diet change works. The research IS there - it is just ignored.
I have little faith in my NHS doctors to treat my arthritis - with NSAID that will tear holes in my gut and make my arthritis less painful in the short term but put me on a treadmill of different drugs for the rest of my life. My Dad had his health ruined by drugs - with NSAIDs and still has a fused spine, sternum and 2 replacement hips. Despite serious pains from age 19 to 26 - I have remained, luckily drug free - not 100% cured by 75% better nearly all the time.
Listen to your medical team yes - but it costs nothing to try diet change that is helping many thousands of people.
I will post some links to official / accredited research - then you can decide if your doctors have ever mentioned this to you - but here is an assesment of what I believe the research says -
If you have RA then it is still an autoimmune disease - regardless of whether you are sero-negative or positive.
Some with RA go on from seronegative to become positive over time. The seropositive test is for RF (rheumatoid factor) which is an antibody created against a particular protein.
With an auto-immune disease the "initial spark" is not our immune sytem suddenly wanting to attack us - it is the presence of too many foreign proteins from bacteria (or foods) that cause the immune system to get overloaded.
When a foreign protein is presented to the immune system it is either encapsulated by part of the immune system called a macrophage or is captured (linked to) by a dendrentic cell that presents the protein as "bad".
All this "hoovering up" gradually weakens the immune system and uses resources which makes the immune system less efficient at differentiating between the bacterial proteins (Proteus or Mycobacterium) and other good proteins (us) and in it weakened state leaves behind "incorrect" antibodies to attack those proteins us - and so on - and so on. This is called "Epitope Spreading" - the various Circulating Citrulinated Proteins "building up" that are present years before are a sign of this.
With Seropositive the spread has gone as far as identifying a protein that is used by our own immune system (part of IGG) - so it's in effect a civil war with the immune system attacking itself.
Proteus and Mycobacterium are specific bacteria contain proteins that are similar to the tissues that get attacked for those with RA. In my Arthritis the bacteria that has been studied is Klebsiella.
THERE IS PROPER MEDICAL RESEARCH ON ALL OF THIS.
Light susan342
Posted
I'd be interested to know more about those experiences with alternative treatments you're referring to when you say "I have been there my self and some decesions made were detrimental."
It's the "detrimental" ones that it would be good to hear about.
As far as I know (but I am not an expert) alternative treatments are largely not detrimental, (there are notable exceptions of course).... even those with a placebo effect, which in itself is not deterimental if it works. The placebo effect is as valid as any other, as long as it affects the symptoms.
Pharmacological drugs, on the other hand – especially those we have to take for RA – we know can be detrimental.
The detrimental effects of alternatives presumably lie in the fact that they're largely taken without medical supervision.
I may be way out of line here, so I'm happy to be corrected.
As far as I see it, one of the modern day medical tragedies is the divide between regular medicine and the growing body of knowledge that has claimed success in alternatives.
Take acupuncture, for instance. Forty years ago it was considered hocus-pocus. Now it is broadly accepted as a viable alterative treatment for certain kinds of problems.
If GPs also studied alternative therapies, even very broadly, the link between traditional medicine and those with a wholistic viewpoint could lead to far more accurate treatments for many more people.
So I repeat, it might be helpful for all of us on this thread to hear about which alternatives you personally experienced as detrimental, so we can be alerted.
TreatMeGently Light
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First the motto of the medical profession is - First Do No Harm
GP's only get a two week module on diet in there many years of training - many GP's I have seen are hugely overweight. I would bet that this module is outdated too!
It is easier for docs to have a standard toolkit of drugs that to have to treat each case differently.
Diet research has been studied for arthritis for about 100 years - I have uncovered medical papers online that are cited in other recent diet studies -
http://www.nejm.org/doi/full/10.1056/NEJM192409041911003
Same doctor was treating people with dietary changes 20 years later !
http://link.springer.com/article/10.1007/BF03011637
mu111 caroline90579
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