Fun fact. Many autoimmune issues can be triggered / worsened by diet.
There is an auto immune protocol diet that is all about reducing inflammation.
Spend a few months on any of the support forms and you’ll see a pattern where people take years to be diagnosed. Most have a mystery illness for several years before it’s diagnosed.
Then they go through years of various medication options with mixed results.
Eventually many end up going to diet as a solution.
Many of the various low sugar tend to be fairly close. So a lot of people dealing with autoimmune via diet without realizing it.
While it is true that diet can have a big impact on inflammation, I would caution against pushing this idea too far in the context of auto-immune diseases.
I won't go into the details or talk about any specific condition because it's a complex topic, but you're better off combining a mediterranean / Indian / varied diet (the American diet is notoriously bad) with proper medication as prescribed by your treating physician.
If you have an auto-immune disease, do not try to replace drugs with diet changes.
I have Multiple Sclerosis, and there are slews of sham diets out there. None, of course, have been actually proven effective even though one specific person definitely claims to have cured their MS through diet.
It isn't even that I mind folks trying diets out - but the only thing (so far) that tends to lessen the disease over time are medicines. These medicines are expensive and tend to have side effects. There is no good reason health care systems (private or taxpayer funded) would cover the drugs if they could just pay for someone's diet and get results instead.
Note: Not saying diet will never be part of treatment, mind you, but we aren't there yet.
If you’re referring to Terry Wahls, years ago, she did mention starting trials for her diet for MS patients. Not sure where it went, but she mentioned positive early results.
I’ve tried a variation of her diet and can report feeling significantly better, but long term compliance is difficult because of everything that gets cut out.
Diet & exercise is most definitely a part of many medical treatments, eg reducing saturated fat intake for heart conditions, but because compliance is incredibly difficult for the masses, it’s never the main focus, it’s just highly recommended.
My doc friends lament that patients want a pill when they clearly also need lifestyle changes. (eg obesity)
It is one thing if you need to lose weight and we aren't exactly making lifestyle changes easy especially if you are poor in somewhere like the US.
That isn't the case for MS. So far, a diet does nothing to decrease disease activity. The risk for doing something not proven (at this point) is increased disability.
And honestly, there is really no reason that state-run medicine programs (like in Norway, where I currently live) would pay for expensive medication when they could simply provide food for folks. The area I live in has a central kitchen that cooks and provides foods for the area nursing homes and other similar places: Providing a special diet wouldn't exactly be a huge cost and definitely cheaper than the medication. Heck, I could feed and cook myself for the price of medication.
Similarly, there is really no real reason insurances in the US would pay the monthly cost for the medicines if they could control it with a diet plan.
I'm not saying that diet and exercise does nothing: It is easier to overcome things if you have the ability to stay generally healthy and I do what I can. That said, I'm not willing to risk independence for an unproven diet. Especially if the person selling it claims miracles.
I would like to let you know (if you weren't already aware, if you are please ignore) of low dose naltrexone (LDN). While it's certainly not guaranteed to work, for some people it certainly does. I'd highly recommend reading more about it as while LDN is helpful for autoimmune conditions in general, MS particularly has a "higher" rate of success with it.
Practical info - please do your own research, don't take my word and speak with your doctor first. I'm just here to make you/anyone else with MS aware of it's existence.
I started ldn 3 days ago. Spent 2 years trying to get a prescription. It’s all the rage on support forums.
None of my doctors had heard of it before, so refused to try it. Then found out I could just order online from a doctor.
So far very happy with it. Pain levels drastically lower. Energy levels in morning notably higher. Dreams are a bit intense.
Supposed to even get better as time goes by.
I'm not sure why I would go with something that isn't guaranteed to work when I can just go on a medicine that has a someone known outcome, which I have done. I pretty well just went on the medicine the doctor recommends, which is one of the drugs the overall medical guidelines here recommend. I have regular MRIs that monitor disease activity, and so far I've had no activity in the years since I started it.
The risk of doing something that won't work is too great, honestly. I don't have many day to day symptoms and pretty well do as I please. Disease activity means that I could have a much, much worse daily life. I'd like to keep walking and using my limbs and keep control of my bladder, thank you very much.
If the doctor recommends it as part of treatment, I'll do whatever they say. I'm not going to personally worry about it, though. I'd much rather just take a daily pill and go on with life, thank you.
Realistically, many forms of MS have symptoms that happen (suddenly), then heal up quite a bit, generally leaving differing amounts of nerve damage. In other words, if you do nothing, it will get better. Until it stops doing that, and if you aren't on medicine, your outlook isn't so wonderful. Unless you are lucky, that is.
I'm fairly lucky. I have few day to day symptoms. I was half blind once, though, and I've had fingers so numb that I had to inspect my hands after washing them to see if I did it correctly. Currently, if I bend my head down, I get an electric shock in my legs. It isn't really bothersome though.
If I go on a diet, I might not know anything changes. Well, until next year when I get my next MRI. I expect it to have no changes even if I don't diet, though, because modern medications are pretty wonderful.
There can be a 1-20 year timeframe between seeking treatment and getting a diagnosis and starting medication for autoimmune. Doctors constantly gas light people until it has progressed to late stages.
These are people that should 100% work on diet as a solution until they can get proper diagnosis and start treatment.
Instead I see the reverse. People scarfing on crap American diet. Trying drug after drug with mixed results. Some it’s enough. Others not. These are people that need to change their diet regardless of medication or not.
Then there are people like my sister who clearly has the same condition as everyone in family. Refuses to seek treatment. But got an early start on healthy eating and does better then anyone else. She really needs some tests, and probably does need some medication. But is mostly fine.
Something like cancer. Screw everything I just said and take the pills.
I, for one, live in the US and have absolutely been gaslit by multiple physicians. They are reluctant to order tests, to refer to specialists, and to try medications. They are not reluctant in the least to assume that any and all problems are in my head. Maybe they are. But it's an undemonstrated assumption they make because they see MDD on my chart. They're skeptical that anything is actually wrong.
It took over six months and five visits to two different doctors to get a referral to an orthopedicist. Turned out my cubital tunnel had collapsed on my ulnar nerve, crushing it. The surgeon said that I shouldn't have waited so long to see him, because the damage was so severe. Yeah, well, I tried. Insurance doesn't cover specialists without a referral from a generalist, and I am at their mercy.
It's been over five years now since that surgery, and I still deal with nerve pain and weakness in that arm. Nobody cares. Oh well.
I have a lot of personal theories on this but if you have what I think you might have I would highly recommend trying a Japanese fermented food called Natto. It is some real weird stuff in terms of texture and smell but the benefits are massive at least for myself. I tried everything out there and saw tons of doctors and while some things helped consistently eating this stuff keeps my immune system in check better than anything else I have tried. Most asian grocery stores will have it.
Please don't give medical advice on the internet, especially without specifying what the advice is for, or without knowing what condition the other person has. It's obviously well intentioned, but incredibly reckless.
It's not reckless to recommend someone try a food and see if it helps them feel better. Trying diverse foods is nice (as in, good for the variation in life) and in this case it may transcend the immediate niceness into a generalised well-being. Nobody here is recommending natto instead of whatever your doctor prescribes (which I guess you are implying) and you'd have to be severely mentally handicapped to assume this is what was written. In such a scenario you should not touch the internet unsupervised anyway, because all sorts of normal statements become potentially dangerous.
In short: Real life shouldn't have to be a ball-pit surrounded by rubber tiles. We're all adults here.
Do you really think someone is going to read that, start ignoring their doctors, throw all their medicine in the bin, and become some kind of natto evangelist?
It’s a common Japanese food and he just said give it a go.
Do you really think someone is going to read that, start ignoring their doctors, throw all their medicine in the bin, and become some kind of natto evangelist?
Most folks don't become an evangelist! The rest, though - yeah, it happens. People get sold sham cures and diets all the time and dismiss proven treatments. Even when folks do not dismiss modern medicine and are doing things that aren't actively harmful, alternatives tend to delay proven treatments.
Additionally, if you cannot afford medical treatment and you are presented with some "cure" that seems be a small fraction of the cost, it gets easier to justify whatever sham cure the person is trying to push.
'just try it out' comes with responsibility when you are talking medicine as it can snowball into something else.
I think what's funnier is that statins have become so cheap through generics, but they are demonized because of their purported side effects, so people are spending way more money for e.g. red rice yeast, which is just an unregulated statin.
Yeah actually, that would be an unsurprising (but clearly bad) layperson's reading.
If the last two years should have taught us anything, it's that even otherwise intelligent people will interpret perfectly reasonable, specific and precise health advice in the worst possible way.
It's far more reckless to tell people to do something specific because they supposedly have a very specific disease because it is very easy to misdiagnose symptoms.
There are so many symptoms that could either be something harmless (that can be fixed with a diverse non specific diet) or be cancer. If you spend too much time on medical websites trying to self diagnose you are at some point going to convince yourself that you have the worst disease of all the potential options.
Your point is valid. I would be dead if I hadn’t spent so much time researching. Doctors constantly dismiss symptoms as anxiety.
At one point I was in ER (second time) gasping for air coughing up blood. Totally chill from all the anxiety meds while Doctor was explaining how it was just muscle strain. He went white when x/ray came back.
I was on the AIP diet for a while, quite a long time ago. It wasn't the end-all solution for me that others proclaimed it was, but it was nice to have something new to try.
For what it's worth, I had a similar experience trying a strict AIP diet for a few months - some improvements in my autoimmune symptoms (some psorasis I've had since childhood), but nothing definitive. When I tried a strict carnviore diet, basically cutting out the vegetable and fruits allowed on AIP, my existing patches of psoriasis disappeared over a few weeks, and no new ones appeared.
Since then I've gone on and off of strict carnivore, but anytime I reintroduce vegetables and/or some other carb sources, I'll start to see new patches of psoriasis pop back up within a 2 or 3 weeks usually. So I usually balance on that line now, returning to carnivore if my symptoms start to bother me too much.
Spend a few months on any of the support forms and you’ll see a pattern where people take years to be diagnosed. Most have a mystery illness for several years before it’s diagnosed.
Then they go through years of various medication options with mixed results. Eventually many end up going to diet as a solution.
Many of the various low sugar tend to be fairly close. So a lot of people dealing with autoimmune via diet without realizing it.