watching this programme … through a different lens now I know I have PA.
I always cooked from scratch, ate lots of fresh fruit and veg and different grains, very health conscious. Yet, I am not what I eat!
I wonder if we could raise awareness of PA with a programme called “when you are not what you eat”?
Yes, I have a clean, home cooked diet, rich in veggies, pulses, fruit. I have been a grass-fed meat eater, a vegetarian and mostly for the last 5 years, vegan. I have avoided wheat for nearly 3 decades and over the years, have discovered what doesnt work for me. YET - This made no difference to the PA seemingly, but now I'm questioning other health issues as yet undiagnosed.... thyroid..... Hmmmmm I cant seem to get a handle on my energy levels, but thats for another thread lol!
No one is what they eat. We are what we absorb and therein lies the problem for PA patients and those with other absorption issues.
Love this idea! Like you I try to cook from scratch. Like the title. I’m newly diagnosed with PA but have had symptoms for years . It’s frustrating when you try to eat healthily.
Hi Guys. Exactly we are told from childhood that as long as we eat in a certain way we will be ok but that’s simply not true for everyone - surely the message needs to be modified … but in some people there can be a lack of nutritional absorption.
I think one of the reasons I went undiagnosed for so long, the specialist estimates about 20 years, is because I believed I was eating well so there was nothing of concern and I was just overdoing it!
Thank you for replying.
There are so many illness that one can get , even if one does have a prefect diet . So there should be no complacency . There are over 100 autoimmune conditions , P.A. being one of them .
Yes, you are right of course. But TV programmes still promote that a healthy diet is a key factor to being healthy and it is not always the case as we have found out via the back door. I suppose I am still a little overwhelmed by the last few months and my relationship to food has totally changed now. I just need to start to feel comfortable in the new me and accept I have a different headspace now.
This forum is invaluable for that. Thank you all again - virtual hugs all round!🤗🤗🤗🤗🤗
Same here, I've had an organic healthy diet for over 10 years after getting an endometriosis diagnosis to manage what I thought was just endometriosis symptoms. Some may even call me a 'health nut'. Yet I have been so ill for so many years before my whole system came crashing down this October gone. SI B12 now and am taking HCL and pepsin as I've realised I've had no acid and food was fermenting rather than being absorbed. Why do I have low acid is another matter, still haven't got all the answers, I'm hoping to fix my lifelong stomach issues which I believe is the cause of So many illnesses but I'm glad to be able to live a semi normal life as I was bedbound with heart problems and dementia symptoms. You certainly are what you absorb, I think many of us have had to have such a good diet because if we ate like everyone else we would be incapacitated. Trudged along through life not realising how abnormal it is to feel so ill and exhausted
To be honest, I think the problems lie in society's overemphasis on healthy diets. We can become obsessed-as I did-with eating the 'right things'. But the body doesn't want to eat only the right things, it wants to eat everything.
Literally, the gut microbiome is the powerhouse of our health. And science now proves that a healthy microbiome leads to better mental health, less risk of disease, and less chance of autoimmune diseases.
For example, the world shifts its view quite often to tell us that broccoli is a superfood, or Manuka Honey will cure your ills, or we should all eat chia seeds. And yes, these things are true, but it does not mean we should exclusively eat these things, because that would be bad for our gut microbiome. So eating broccoli everyday is better than eating chips everyday, but it is still bad because your body is only getting one source of nutrition and bacteria in the gut is becoming imbalanced. More diversity - better health.
So the key is to eat whole foods, and not exclude food from your diet. Mix it up - have your meat, veggies, carbs each day but make sure you have something different everyday, or at least mix it up every week.
If we are not getting the right balance of nutrients, our body has fewer defences against disease. It is more likely to 'give out' to problems in the gut - like absorption - if, say, we're eating alot of inflammatory foods. Pizza, curry, that sort of thing.
Living is an art, based on science. The problem we have is Doctors aren't artists - they're scientists. And science can only tell us so much.
Slowly, medical science will have to move towards gut-related knowledge. It is so obvious to me when you think about it, that the gut--the engine for our body--is where all disease manifests. So, we must care for our gut. This includes diet, but it also includes proper rest - meditation is now proven to improve healthy bacteria in the microbiome. Stress is a pest that will increase homocysteine levels if we don't have enough B12, so B12 really is the most vital nutrient in our diet.
Despite this, the world keeps telling us that 'red meat causes cancer'. Well, if you eat it everyday then yes, it probably will. But if you eat anything every day you are going to become sick. Red meat in itself is not carcinogenic - it's overconsumption that's the problem.
So do eat red meat. And eat veggies. And eat fruit. Eat everything. Rest well, reduce stress, and find ways to relax. These are the things we can do to retain good health as far as possible. Of course, sometimes, there is nothing we can do - these things just happen.
Yes very true, I will always avoid packaged or processed foods as much as I can though. Home cooked food with fresh ingredients, whole foods if you will is what people are referring to when they talk about healthy diet with everything in moderation I think. We're fighting a losing battle anyway with the GMOS that are creeping in and geoengineering (no longer a 'conspiracy'!) The WEF want to stop people eating meat altogether and move us into bugs such as crickets locusts etc. With the push for veganism, looks like there will be more b12 deficiency than ever meaning a sicker world population and more demand for B12. Very scary prospect
Indeed, more B12 deficiency and never enough knowledge among doctors and medics on what to do about it.
I notice the government are now banning the sale of nitrous oxide. Most likely because the NHS is overwhelmed with young people showing up with highly toxic forms of b12 deficiency and they don't have any idea what to do about it.
I was just blessed to have found out about deficiency after a chance meeting on holiday ,a lady cut my hair and said I sound exactly like her before her pa diagnosis. I think I would have had a heart attack,stroke or ended up in a psychiatric ward if I hadn't took matters into my own hands as everything was declining so rapidly. Doctor did nothing for me when I literally was dying, now told him I SI and that's the only thing keeping me well and he turned a blind eye,doesn't want to know. Only thing Gps seem to want to do is prescribe ppis or antidepressants. I've got a gastro referral hopefully coming up and that's the best I can hope for. So much ignorance the topic, is it willful ignorance though when there is so much common sense evidence (b12 shot improving symptoms that they can't find a cause for) as well as medical evidence
So glad you managed to treat yourself correctly. I can relate to your journey and had multiple other health issues that would've warranted investigation for B12 but of course I'd forgotten that medics don't investigate root causes - they only treat symptoms. And it was extremely late when I found out my deficiency that I couldn't think straight or make sense of anything.
My GP was much the same as yours. He asked me where I got the B12 from, and then looked away and shook his head.
Personally, I think the reason for such poor knowledge is actually quite profound. And it's not really anyone's fault, it's just an issue with how we're taught to understand the human body. Since everything is segregated/delineated to body parts, there is never an holistic approach. That holistic approach should start at the centre of the body - the gut. We know that the gut is connected to the brain, so the gut is the centre and the brain is the top. The legs just carry us !😂
So, if the gut is the centre of the body, what goes into the gut must surely be of the highest importance? The gut needs a very careful balance of nutrients to operate in a correct way, and this includes B12. Sure, common sense says if there's not enough b12 we become deficient, but if there's not enough B12 we also disrupt the balance of our guts and create further dwindling levels. And this can lead to poor signals going to the brain in the form of mental health issues, or gastrointestinal dysfunctions, then a range of appalling symptoms when B12 levels are depleting fast.
The mental health issues I'd had before I treated the deficiency were completely unfounded. They were imagined problems. And when I treated the deficiency, they went away completely.
Doctors just haven't been trained to think about the body this way. And neither has society at large. We all have alot to learn about striking a careful balance in our bodies and relying on nutrition to give us what we need to live.
So if no-one has specialised in holistic medical science or the gut (not even a gastro looks at the influence of the gut on other organs) including nutritional science, then there is no-one to help us. Instead, Doctors continue to assume they are gods of the body and we assume they are too, which allows their egos to inflate to a point where they couldn't possibly be wrong about something and we must be anxious or mad.
So, in a cack-handed way of saying it!, everyone is doomed to be treated ineffectually when it comes to B12 deficiency. And that's because no-one is studying the gut or nutritional science in the way it needs to be looked at. Even though that is likely to be the root cause of parkinsons disease, fibromyalgia, dementia and alzheimers and probably MS too. Neurologists don't look at the gut as a causal issue - they look at the nerves and nervous system.
So since none of us are looking at the body holistically, how can we understand the right way to treat holistic illnesses?
We are literally stuck in a dark age of medical science. We have all this technology, A systems, and it's so simple--if we look downwards--it's literally staring us in the face. And just imagine if a neurologist prescribed dietary interventions for dementia? They would be mocked and ridiculed by society. But I would place money on the fact that the state of the gut and diversity of microbes will determine these types of sad outcomes.
So I am exhausted with feeling as though I should blame medics. They have been taught what they've been taught. But what I do object to is not being believed and treated as if I have an anxiety issue.
When B12 and gut issues do become a focal point of interest for medics, if ever, we could then live in a world where medics check vitamins levels when someone comes to a Doctor with mental health problems. Or any problems.
But they don't, since the system is set up to target areas of pain through the use of prescription drugs, where shareholders profit from each single prescription. But how else? This is the way we've set things up. We can't go back. It's too complicated to shift our thinking now, plus, the scientific world will feel so ashamed that they've ignored the gut they would never admit that 'we got it wrong'. If they do, no-one will trust Doctors anymore and it will be chaos in the streets.
Perhaps in the 21st century this will change. In my lifetime? Probably not.
you are right and choosing your battles is very important. I was born in Malaysia so experienced Chinese medicine throughout my life. They have nearer to a gut first approach and I usually go to Chinese medicine and herbalism before western medicine.
Where I went wrong this time round was that I attributed my decline in health to life events and aging so I never sought help. I was accidentally diagnosed with PA when my GP asked if I was feeling ok when I was accompanying my mum to a GP appointment. If she hadn’t noticed I looked excessively tired and suggested a blood test I would have just carried on.
I think things are changing but to be honest I thing there are bigger life challenges affecting far more people that are higher up the political agenda.
This forum is invaluable as we cannot rely on systems which are largely ignorant of our plight, underfunded and under so much strain. But I sense this forum is filled with glass half full people and so we will get through this together.
Yeah your so right Pickle, I often enjoy your posts on other threads as I can tell you help yourself and study to find answers. I'm a bit more cynical than you, sure it's how things are set up and doctors have to work within it but I do think it's all to do with money. After all, if you look into the world of medical reps and their relation with gp practices it's hard to think of it than anything other than a buisness. If you started helping people with the basics - the gut as well as nutrition et c , there's not much money in that ! We would have a healthier population and profits would go down. Sad but true
It doesnt speak to the lack of nutrition training but I found this rundown from a doctor of financial donations to medical schools, the medical system and doctors themselves to be on point:
Yeah it's definitely a huge factor. And I think the way the system has evolved, to offer prescription drugs, is something that money can be made from. Even though we're already supposedly paying for healthcare free at the point of service.
GP's certainly feel happy to hand out prescriptions here and there without investigations. But they won't do this if a blood test doesn't warrant it - maybe because it involves nurses time which is money.
I do just find it difficult to swallow that Doctors are not interested in solving our health complaints but only in money. I'm just not sure so many of them, many who are good hearted, would abide by a system that enforced financial gain over patient healthcare.
I think they do do it, but blindly. Because they're ignorant to the effects of B12, they don't 'buy' that it has the effects it has. This is the same with people around me - no-one would believe that a vitamin deficiency could cause such mayhem in a person.
So I think we're both right. Money is milking it. But it can do that because of so much ignorance, in the healthcare system but also with the general public. If there was knowledge about how severe B12 can be, I think many people would think twice about veganism. I just can't sleep at night with the thought that the healthcare system is solely about money over patient welfare - I think it is GP's ignorance and arrogance that they simply do not understand what it does to people. Hardly anyone does, in my experience.
An example of the type of information about B12 supplementation directed to vegans that concerns me, is this article:
nutritionstudies.org/12-que...
"Recently, there has been some evidence that large dose B12 supplementation may be associated with an increase in cancer risk in some groups"
and
"I suggest a dosage just high enough to give you a nice low-average level of B12.".
I had a low-average B12 some 2 years after neurological symptoms began so I completely disagree with the advice that a low-average B12 level is safe.
The scaremongering about high levels of B12 from supplements being associated with Cancer Risk is an ASSOCIATION and far more likely to be reverse causality - those with Cancer are much more likely than the general population to be taking high dose B12 supplements and we also know from other research that Cancer can cause high B12 in the absence of supplementation.
It would be better to point people towards the information on B12 supplementation from Registered Dieticians at veganhealth.org which is much clearer on the necessity of adequate supplementation and amount and not just vague advice to take a multivitamin which in theory could work but is needlessly risky.
Thank you PA!
PA tests negative... how accurate are they?
How do you know if you have PA
Functionl Neurological Disorder (FND) how many of you with PA have been labelled with this?
Might I have PA?
