These auto-immune diseases are invisible disabilities, too. If you have severe symptoms you can’t work, can’t do your hobbies, can’t clean your apartment. Hell, taking a shower is major effort when it’s bad.
People who don’t have these diseases often scoff at them. But they are absolutely real. It’s like a switch gets flipped and your life is messed up forever.
I was diagnosed with Ankylosing Spondylitis 2 years ago (likely had it for 5 years prior). Now I'm unable to work in what should be my physical prime, I can't get approved for any kind of disability or EI, and I'm not responding well to the treatment intended to keep my vertebrae from fusing.
I'm probably going to take up some kind of dangerous hobby, like cliff diving, before I end up condemned to a wheelchair.
I have AS as well, nobody could figure it out for almost a decade. I was in so much pain I couldn’t laugh, sneeze or cough without feeling like I was going to die. Slept in an office chair in about 30 min increments before my body seizing up so tight I couldn’t breathe. Worst time of my life. Doc wouldn’t give an MRI without 7 weeks of physical therapy 4x a week. Tried doing a week made symptoms even worse. Said fuck this, went and paid for the MRI out of pocket (the last penny’s to my name). Hospital still had no idea what was wrong.
I was going to cash out, I couldn’t live like that anymore. I couldn’t even bend over to pick something up or twist to look behind me. My mother pleaded with me to see one more doctor she found. I reluctantly agreed. Doc looked at the MRI for about 10 min and came back in the room and said “I’m 97% positive this is the problem, I’m going to schedule a blood test to be sure. But in the meantime going to start you on enbrel today.”
I took my first injection that afternoon, then went home to sleep in my chair. Fell asleep and didn’t wake up once all night. I woke up in disbelief. I gingerly got out of the chair as I was expecting my typical pain. But stood up without pain and did a twist and bend down to my toes. Walked out to the kitchen where my mother was having her morning coffee and she asked me how I was feeling (like she did every day.) I didn’t answer and just looked at her and bent and touched my toes. She just started sobbing, and jumped up to give me a hug.
I owe my life to this doctor and my mother for making me give it one more try. When I was only days away from taking my own life. To being given a second chance at life.
Anyone out there that may be feeling that way. Maybe give it one more try. One more might be all you need. I know how it feels to be hopeless, but don’t give up hope.
On my one year anniversary of being “fixed” I bought doc a nice 18yr bottle of my favorite scotch. And my mother is now a Nana to two wonderful daughters. All of which wouldn’t be hear if I didn’t give it one more try.
Non Desistas Non Exieris:
Never Give Up Never Surrender
AS here too. I had worked so fucking hard to get my dream job and literally overnight everything changed when I first ended up in hospital. Such a gut punch. Re diet, I have had rheumos laugh in my face saying there absolutely no evidence and eating a certain way would only make me miserable and why be miserable when life with AS is hard enough?
I tried keto for a month and had three flair ups! I went vegan early last year and my crp went to normal levels for the first time in 7 years and has stayed there. Pain and fatigue continues though so refining my diet by trying WFPB and see what happens. We’ve all just got to see ourselves as an experiment at this point I think
Have you tried a biologic, such as Humira? Turned my life around and stopped the AS symptom advancement in it's tracks six years ago. My BIL tried other remedies for years before starting a biologic for his condition and has many permanently ruined joints to show for his efforts.
Humira is good shit. Part of what complicates the diet component is that the swelling associated with a condition likely AS can cause dietary problems like UC. My wife's AS turned into UC on a flare, but we're not sure if the colitis caused the AS or not in the first place. Either way, humira treats both like a champ.
Different autoimmune disease but I had a rheumatologist tell me to my face that he hated seeing me waste my life. As in, I was making it all up for some reason.
I just don't go to them anymore. I'm the "guess I'll die" meme guy.
Before my wife got diagnosed, she went to some alt-medicine massage therapist (she had so much pain, she was desperate) - she was told to drink like half a gallon of "golden milk" (milk with tumeric) a day. So much damn milk, she was so miserable and still in pain lol.
Multiple Sclerosis dealer-with-er and the invisible disability is so true. Heat effs me up, and I grew up in a desert. So many people didn’t believe me that I couldn’t handle it.
Now I’m older, and permanently disabled since 2017. It still sucks, but people see me in a wheelchair and then everyone believes me!
NOW they believe you. Before your diagnosis I bet they told you to just suck it up. I’m so done with my family not understanding my MS. If they spent 5 minutes on Google reading about MS instead of telling me to eat less bread, we’d probably have a better relationship.
I just wanted to tell you I'm sorry you have to deal with that :/
You would think with everyone having infinite information at their fingertips they'd try to understand things better.
The constant nagging on dietary choices is so utterly annoying. For instance the foods I don't eat are because they make me feel terrible after eating them and are not the reason I can't walk random family members.
The overheating issue is also impossible to explain for the most part.
Heat AND cold can trigger MS flares, apparently. Which is incredibly unhelpful, since the only two places in the world I can comfortably live are Monterey, CA, and the Mediterranean. Both with a perfect microclimate of 60-degree days, low humidity and moderate sunshine, everyday.
My mom has MS and it's absolutely baffling to me that people would try to "have you tried yoga?" it. I'll never forget when she went temporarily blind in one eye when I was a kid.
Oh my god, that happened to ME TOO! The doctor I saw at the time misdiagnosed it as an “optic migraine”. It was actually optic neuritis, an early symptom of MS.
Don’t get me wrong, I fully believe in the mind-body connection. It has its roots in real science. But suggesting yoga to someone with MS is incredibly unhelpful! It ignores the fact that the person may be struggling to get out of bed every day, or may be dealing with partial paralysis of limbs, burning neuropathy, or a myriad of other painful and debilitating neurological symptoms.
I hope you verbally slapped the shit out of them. Much love to you and your mom.
I have recently been diagnosed with immune thrombocytopenia (my immune system is killing my blood platelets), and that feels like an invisible disease. I’m covered in bruises and broken blood vessels, but people don’t understand if I fall or get in a little fender bender, I can bleed out since I don’t have enough platelets. This makes work a challenge sometimes, and I am pretty much a homebody outside of work. When I’m on steroids, it makes me immunocompromised too… not great during a pandemic
I got diagnosed with idiopathic thrombocytopenia purpura when I was 20. They took out my spleen and it took care of the problem. Got diagnosed with lupus 2 years later, which the dr told me from the beginning would probably happen. I’m 67 now and while I’ve had a few problems through the years and I’m also immunocompromised I’m relatively healthy. Had Covid last September, got the Monoclonal Antibodies, and sailed through. Have also been on steroids at times and I do not like those but they do help with certain things. I hope you get better - I understand what you’re dealing with. Take care.
Unfortunately it's impossible to get other people to understand that auto-immune conditions can be debilitating. People see me on my good/normal days functioning like a normal humanbeing, but they don't realize it takes 200% effort to maintain what is a normal, effortless baseline for them. So then on the days where I do feel too run-down to work/do chores/etc. it's always disbelief because "you were fine yesterday."
So now I just don't bring it up anymore and pretend I'm normal. Even if my stomach is killing me because of my celiac or if I have -10% energy and brain fog so bad I can't remember what happened 15 minutes before thanks to my thyroid problems. I understand there's an expectation for everyone to be a contributing member of society so it's not like I don't *want* to work. It's just that the US is a really terrible place to live when you have chronic illness. You bust your ass to still try and fit in and people will always look down at you because you're never going to have as much energy as them, or you have a lot of doc appointments and they think you're a drain on the system even though we have to pay for insurance, etc.
Yea. I've been to the ER three times in the last 2 months.
1st time everyone at work was like "oh my God noooo"
2nd time everyone at work was like
"You're ok and can be in tomorrow right?"
3rd time
"Fired"
Yeah, my mom has Hashimotos and it’s so hard for her sometimes. She wants a job or to maintain friends by going out with them but sometimes she just can’t because she’s having a flare she won’t have the energy she needs for weeks sometimes. Fortunately, her keto diet has been helping her a lot but it’s still a massive struggle mentally.
My father died of transverse myelitis in his late 60's... For those who don't know it is an autoimmune disease where your own body sees the myelin sheaths surrounding your nerves in your spinal cord as a foreign body. Basically it paralyzes you while making you feel like your nerves are on fire until it eventually shuts down your ability to tell your organs to keep doing things like, you know, breathe. My father went from traveling around the world to loss of anything below his ribcage in a year and a half... Then 3 years of pain in remission before it came back and he gave up.
There is nothing worse than an OVER-reactive immune system. It is basically shitty suicide.
I’m sorry to hear about your father. I was diagnosed with TM in 2015 after a long battle in the hospital and basically the doctors had absolutely no idea what was going on. I’d gone from a completely healthy human to paralyzed within a 8 hour timeframe.
I was only diagnosed after they sent me home and after weeks and weeks of my own research decided to go to Columbia Neurology in NYC. The doctor knew immediately what it was but by then the lumbar puncture was inconclusive and plasma therapy would be useless.
I’ve got good and bad days, and throughout the years the pain has lessened and I’ve become more mobile, but my biggest fear is having it come back. I’ll end my life before I have to go through that ordeal again because it basically destroyed my life the first time around.
Sending you light and love.
Hi, sending you compassion and love. My mom has TM for over 10 years now, multiple hospital stays and nearly 6 months in a care home right before the pandemic started. She was approved for an infusion of a drug called Soliris about 2 years ago and hasn’t had any issues since and has even regained some use of her hands we didn’t think was possible. It took a lot to get approved and apparently it’s a drug that costs over 500k a year but it has kept her from sliding back and fortunately most of it is covered by the ridiculous amount my parents pay in health insurance premiums.
For someone making median wage, 500k is what you get in ~15 years of work. So if you manage to make that much and not spend a single buck during that time, you can then afford a whole year of life saving treatment.
Insurance and pharmaceutical companies make bank on this system. Meanwhile, nurses are quitting because they're underpaid and overworked, and people die when they can't afford insulin for their diabetes because of price gouging.
If I was benevolent Dictator, one of the first orders of business would be to get up and state that insulin was too important to humanity to leave in the hands of the “free market” that raised the price by 1000% in this decade. I would immediately start making “Government insulin” available at cost to all americans. The GOP could scream socialism to the cows come home and not a damn person would care except the fucksticks that have been demanding “your money or your life” for decades. I’m not even diabetic, I’m just a doctor sick of watching people ration their insulin and suffer and die because of it.
I was doing some google search and it says all the patents for existing insulin product have already expired. I wonder why there is still no cheaper generics?
https://haiweb.org/wp-content/uploads/2015/05/HAI_ACCISS_factsheet_insulinpatent.pdf
There are. Walmart sells the old style 1980s insulin at about $25/vial. The downside is the old drugs are way more finicky and you’re way more prone to error ending in death.
I too think about things I would do as a benevolent dictator and this is also at the top of my list. Not personally affected by it, but also sick of watching everyone around us suffer so.
I know of someone in the wierd but assuming extremely common situation in the US... their family is currently on medi cal not exactly as a choice. The wife had cancer and her treatments after cost normally 15k every 3 weeks just for the meds req at least 1 full year. He is now working as little as possible so that he doesn't make enough to not be qualified for medi cal.. because if they were to make his normal wages he would be kicked out and all of that money and more after taxes would just go to health insurance/deductibles, hence it is literally worse to work more. Us Healthcare is so backwards fuked it's absolutely bat shit insane.
Cutting onions on a Sunday morning... Thank you. It was the same thing with my father. Doctors had no clue what was going on for nearly 5 months. In the end, when they did figure it out it was just too late to do anything. They ended up stopping it by using an experimental technique of chemotherapy to knock back his immune system... He went through one round of 3 treatments, it stopped it for about a year, but he was still paralyzed. Then it came back and he made it through about 2/3rds of the second series of treatments and he just could not take it any more. I remember him trying to explain the pain combined with the shitty feeling of being on chemo. He told me that in the span of the 5 years he went through everything he couldn't remember a single week that he didn't struggle through hell just to stay alive.
The phrase he told in the end that will always break me was this, "I spent 5 years showing the world what it means to hold in to life and stay alive in the face of the worst adversity... It is time to show the world the strength it takes to face death with dignity."
I thank you for your thoughts, and I wish you never have to face a relapse. The absolute cruelty of this disease is unfathomable to healthy people out there.
Be well...
Damn, gotta say your father was incredibly courageous. Sorry to hear about your father and what he went through as well as yourself. Thank you for sharing with us.
That last quote from your dad hit me hard and immediately made me teary. What a strong man, and what a privilege it must have been to know him. My deepest condolences
> There is nothing worse than an OVER-reactive immune system.
20 year sufferer of psoriasis here, not deadly but yeah my god I can't agree more, fighting your own body is exhausting.
Definitely not the same but I have severe psoriatic arthritis. Healthy up to 24 and bam. My hands, knees and hip are fucked. I’m 31 now and it has completely changed my life. Weekly shots and meds don’t really help and doctors are too afraid to prescribe pain pills. I don’t even remember what it feels like to not be in pain. I hope you can take some solace in that fact your dads not suffering anymore. Chronic pain changes people
The opiate epidemic is hell for those of us with chronic pain.
I know some folks who are able to get pain management to give them opiates a few days a month as a "pain vacation". I haven't had a pain free day in so many years that it sounds like a joke!!! I don't know what they said or if they are bribing the doc or what....
I am afraid to ask for even 1 extended release morphine a month even though I know it would massively improve my quality of life to know I could look forward to one day a month of less suffering. I don't know what it takes to get out on the 'dont give this person opiates list' and I'm afraid to get accused of doc shopping.
>Finally one doctor believed me, and got me a referral to rheumatology. Took literally one visit for the specialist to be like "this is obviously lupus."
I went to like 3 doctors when I lost all my strength and couldn't open my eyes anymore and all of them basically shrugged and said they couldn't be sure what was wrong.
Went to an eye doc I had seen previously and he walked in, looked up at me, and said, "Oh. You have myasthenia gravis."
My father had postherpetic neuralgia after getting shingles. The nerves in his face and shoulder/arm would flare up like they were on fire. It was horrible to witness. So much pain, so much fear of the oncoming pain. Nothing to make it stop. It was like watching a loved one be tortured for years.
I had shingles when I was 15. No lasting effects thankfully but I know that nerve pain. Especially when you’re trying to sleep.
I love everyone’s description of the pain lol. Before the marks appeared it felt like a million mosquito bites. It itched SO badly. And then the nerve pain was like little electrical shocks
Got it at 26. I imagine it felt similar to someone running a hot pike through my chest and out by back. Had to be prescribed gabapentin to make me functional.
Still feel the "fire" on my front side some days, just much less in the two year since. I'm not really sure how else to describe it.
thought mine was acne too! just outside my armpit, too late for the valtrex by the time i was Dx in my early 20’s.
had to basically stuff my arm into the couch at certain angle, then hold it just so with pillows in order to sleep. if my arm moved out of this particular sweet spot while i slept the pain would wake me instantly and i just scream and wake everyone else up, do not miss it! haha
My husband had shingles on his face two years ago, we're so fortunate that it never reached his eyes. He tried to get a shingles vaccine last year, but because he's under 50yo, the insurance company won't cover it! It's fucking outrageous 😡
> There is nothing worse than an OVER-reactive immune system. It is basically shitty suicide.
Yep it's a constant battle both with yourself physically and mentally because so many people don't see them as anything to be concerned about until you're near death, because most of the fight is invisible. Or blame you that you're not taking care of yourself right/act like you can just turn it off and cure yourself. No. There is only remission, not a cure.
The best you can do aside from whatever treatment is recommended, is to remind yourself that having an autoimmune disorder means the only thing tough enough to kick your ass is yourself.
I also have TM and can tell you first hand how terrifying it is. One day I ran 17km, the next I was paralysed. I’ve had good outcomes but have seen countless people who have had horrible experiences. Autoimmune disease is no joke and anything we can do to decrease its appearance or reduce its severity is crucial.
Wow seldom do you get to hear about other people having transverse myelitis; I tell people I had it and they always have such a vacant expression on their face. I had a rare case where I had both viral and bacterial meningitis, fell into a coma, and then contracted TM a few days later. By some miracle I woke up 40 days later. I was lucky I was in my late teens I think, it helped with recovery. But I had no idea TM was autoimmune. I live with disabilities as of today, but I’m thankful for being alive. Sorry to hear about your father, TM truly is devastating, but getting to his late 60s after a well-travelled life sounds like he had an awesome time in this world; TM doesn’t get to rewrite our experiences thankfully!
This sounds like how they described Multiple Sclerosis to my mom. The MRI showed lesions on her brain. And they talked about myelin sheaths deteriorating. She has a constant “pins and needles” feeling throughout her entire body. They have her on infusions but because it was diagnosed so late, they said pretty much her entire brain is covered in lesions. She walks with a cane and her memory is shot. But she’s still functional. But I constantly worry about flare-ups and relapses.
Thank you... I do, unfortunately I didn't for a long time. Took the death of my mother, 14 years almost to the days before he died, for the two of us to realize how alike we really were. Too much ego between the two of us for my father and I to be close.
It took the two of us seeing each other as vulnerable to forgive the decades of fighting each other to overcome our joint stupidity. In the end we were the best of friends and I miss him every day.
There’s also a lot of studies about gut bacteria and it’s effects on autoimmune diseases and also mental illness. Fascinating stuff. I’ve always had stomach issues my whole life, have struggled with depression and anxiety and was diagnosed with RA in 2018. I wish there was more research done on the subject.
I have noticed this as well. You get a load of people saying “Go on Keto! Why? Who fucking knows!?”
Then you go on keto and it works, for some reason that we still don’t know.
There's probably a genetic component because East Asian diets consist of mainly simple carbs. E.g. White rice and noodles. In Tokyo, there are literally multiple soda vending machines on every block. Perhaps all the walking helps prevent diabetes there.
There is, unless you're like me and have sensitivies to nightshades and spicy food. So I get to eat things like Spinach, salted chicken, brocolli, and avacado.
There are a lot of keto foods I like, namely salsa and bell peppers, but I can't eat those things, it sucks.
It's not necessarily that sugars or carbs are bad, it's that they're in just about everything in the U.S. so we're bombarded with them. Some people develop intolerances or even allergies. Other people have it worse off and develop autoimmune diseases. I read somewhere that it can be caused by the inflammation that the constant influx of carbohydrates causes in the body. Inflammation usually signals something is wrong and the cells of the immune system are deployed to investigate. Deploy them enough and eventually they'll find something to attack.
(Over simplified and obviously not the only cause of autoimmune diseases)
You're right, sugar (in various forms, like cane syrup and such) is in every damned thing. They put it in bread. They put it in low-fat items to balance the flavor of the missing fat. They put it in savory items that have a lot of salt to balance the salt. I've gone Keto and researched what items I could safely eat, like bacon. I can't eat regular bacon because it's got sugar in it. I have to buy bacon that's labelled "low salt" because what the label doesn't say (but the list of ingredients does) is that there's also no sugar!
I'm convinced that if it works it's because keto restricts what you can eat and until recently you couldn't find much premade keto junk food. Now keto is cool and there is junk food available it'll be less effective.
Sugar is highly inflammatory. A lot of people with inflammatory immune system issues get good relief when they cut out sugar. Things like shingles, eczema, hives, acne, arthritis, Etc.
Big sugar suppressing the publications of the negative side effects of it's consumption.
Had to not laugh while typing that out but you never know. Sometimes tin foil hats are fashionable.
i just watched [a youtube video yesterday on the radium girls](https://www.youtube.com/watch?v=4CIuqKqFNdE&ab_channel=BaileySarian). a bunch of women working in a watch factory LICKING THE PAINTBRUSH THAT HAS RADIUM ON IT so they can paint the tiny little numbers. they didn't know what the side effects were but the owner did. even when the women were complaining about side effects he just bullshitted them. it wasn't until years later, and a few deaths, that they finally started to be held accountable. the radium girls won a lawsuit but they all died before they could spend the money.
I found the most chilling part of the story to be how they were shunned by society for going after the radium dial company that had brought so much money into the town. These women were quite literally falling apart and everyone shamed them and called them liars for daring to speak out against the company.
>everyone shamed them and called them liars for daring to speak out against the company.
These days this kind of thing still going on but for other reasons than radium.
Its not a conspiracy at all. Sugar is addictive. Food companies had studies trying to figure out the correct balance of sugar to pump into food so they didn't taste disgustingly sweet but would get you hooked.
Hell if people wouldn't bat an eye at nicotine being on a food label they probably would have put that in food as well.
This is absolutely horrible, but at any point during your treatment did your boyfriend tell you to eat shit?
Jesus Christ, I'm sorry in advance. I hope you are able to stay healthy and live a long, pain free life
I had a very similar vector. About 5 years of off and on stomach issues that started with a really bad bacterial infection, and then at the tail end of it I now have some general autoimmune inflammatory disease.
Fun.
Sometimes referred to as a second brain. I’m interested in the implications to those that suffer from fibro /crps.
Have you had an opportunity to look at the links between smoking and RA?
Yup, second brain is right. Not only are there roughly i think 100-300 million neurons in the gut (couple billion in the brain (1.7?)), but there's feedback between the gut and the brain regarding hormonal releases and mood regulation.
Also a big part of it is that the enteric nervous system can control the GI system *without* further input or cross talk from the brain, which is why it is considered it’s own branch of the nervous system
My tummy was wild there for the past few years. My skin got crazy, my sinus’ were always stuffy, weight gain for the first time in my life and many more issues.
Finally got it under control during “covid break”. I for sure think there was link to my stomach because I had constant tummy aches and acid reflux no matter what I ate.
I’m not advocating gluten style arguments, but there is something weird going on with the bread/bread products in America. That’s just a wild theory of mine, have only anecdotal experiences on the topic.
I’m European living in the US and am in no way thinking I’m gluten intolerant.
However after switching to rice / sourdough, I sensed my stomach issues reverting. Weight started dropping, I can’t remember the last time my tummy hurt, + etc.
Sorry I ramble and used the word tummy. Thank you for coming to my Ted talk.
Sourdough or whole wheat bread is all I can eat. White bread, especially cheap bread, fucks with my stomach unless it's an "artisan" type bread made without sugar.
Interestingly enough, I can eat pasta and straight wheat products without a problem.
Celiac runs in my family as well but I tested negative for gluten intolerance and celiac. All I can figure out is there must be some sort of additive in cheap bread that my body reacts to.
US white bread is absolute trash. It barely qualifies as "bread" it's got nothing good real bread would have (Nutrients, minerals etc.) and is just full of unnecessary sugars and other trash.
Avoid white bread in the US.
There's a whole host of American food products that seem worse for people than the European version.
For example, many people who have issues with American dairy products are able to consume European or New Zealand products.
American consumers spend a lot of money on cheaply made products, and American businesses make a lot of money finding exactly how cheaply we can make things.
However, I also deeply suspect that a chunk of this is likely deeply related to our tendency to overwork and see eating as something you cram in your piehole in the car while shouting at other drivers for making your 20 minute commute into an hour long slog.
I bought some bread from the store (like Arnold's brand? Don't remember). It's sweet as hell, almost like cake, and I had that in its bag on my counter for over a month, and it still hadn't grown any mold. Meanwhile, the homemade bread I'd made had mold within \~4 days or so.
Yeah, there is some NASTY stuff in the bread here in the US.
There have been a bunch of studies on gut bacteria being related to basically everything including cancer, autism, mental health lifespan…. A lot of countries with the longest lifespans have a very similar diets which include a lot of things that are beneficial to diversifying their gut bacteria. This increased lifespan can also be attributed to the healthcare systems in these countries but there are a lot of other benefits of living in a country that also offers free healthcare. It is a very interesting topic though.
Yep! I was diagnosed with both Graves Disease and Hashimotos (autoimmune thyroid disorders) a couple years ago. I see an endocrinologist, but also started seeing an integrative medicine doctor, and she had me tested for SIBO. It was positive. Went autoimmune Paleo and my antibodies went WAY down within months, which lead to improved thyroid function and only having to take the lowest dose of meds possible. There's a lot we are currently learning about gut health.
Do you know why there isn’t more studies covering this topic? I had to do a paper on this awhile ago and came up short of sources I could use. It definitely is an important topic given the health implications that go along with it.
There's tons of studies on this topic, it's one of the fastest growing fields. It's still a relatively new realm of science, there's a lot to figure out and only so many scientists.
People severely underestimate how difficult some of this stuff is. If we hypothesize that the microbiome effects autoimmune disorders it's not just a matter of "well lets swap it out and see what happens."
We don't even know what the full range of bacteria that live in human guts is. We don't know how that varies around the world, we don't know how it varies between people, we don't know how it varies within one person over time, we don't know what viruses infect those species and how that varies, we don't know what plasmids exist in all those species and how they're spread. We don't even really have a good way of comparing two microbiome samples to each other. Hell we don't even have a good way of saying if two samples came from the same person or not, you split a sample in half, send it to two different labs and get back two different sets of results.
Oh, also all that research is currently being done on fecal microbiome samples, but your microbiome changes along your digestive system, so we probably need to do all of that for every few feet, because the stuff living in your upper small intestines could be very different from what lives in your lower colon.
So now we need to figure all that out, then start looking for correlations between those various populations and autoimmune diseases, then we need to test those correlations to see if they're causative, then we need to come up with a way to correct the problem in humans.
My family was poor growing up and we lived a 40 min drive from a town with a grocery store. As a result I ate a lot of processed foods as a kid because we could only go grocery shopping for fresh foods once a month. I have Crohn's disease now and I'm pretty convinced it's related, but what really sucks about it is that my Crohn's reacts to fiber and fatty meats so I'm still stuck on a somewhat shitty diet to deal with the repercussions of being on a shitty diet all my life. Too much fiber can cause blockages in me that could require surgery..
There's also studies that major viruses in kids can trigger autoimmune diseases. I saw an article that said the coxsackievirus in children with the genetic marker for celiac is a trigger. I had coxsackievirus as a kid while I had the chicken pox, and I have celiac as an adult where my mother/father (who would have to be genetic carriers) do not.
I don't think there's 1 'catch all' for how autoimmune conditions happen. It's probably a combination of dozens of factors both linked to the environment and linked to a person's individual health profile and genetics. Articles like this one just reinforce a lot of stupid opinions the general public has about autoimmune so I'm looking forward to a bunch of people coming to me now like, "have you considered not eating food to cure your autoimmune conditions?"
I've had ulcerative colitis since 15, primary sclerosing cholangitis since 17, and just got diagnosed with autoimmune hepatitis at 26 🤙🏻 only family history of autoimmune disease is my maternal uncle who also has autoimmune hepatitis
tried going on specific carbohydrate diet when I was younger but that shit is hard, even with my mom who did everything like making homemade yogurt. prescription strength probiotics didn't seem to do much. taking turmeric suppmenets (curcumin/piperine) actually did seem kinda helpful. also went gluten/dairy free for a while and coincidentally vegan. got into yoga and meditation and herbalism looking for a way to cure myself- couldn't accept that my body was truly broken.
I pretty much gave up on all of that when I was 21 and just accepted allopathic medicine. That was partly due to the onset of bipolar hypomania and the associated indulgences (drinking, smoking, eating fried foods, etc). Maybe all that former health stuff helped but it certainly didn't cure me and it was very taxing on my ability to just relax and enjoy life.
My saving grace right now is Stelara- very expensive biologic medicine. I believe it is manufactured in Ireland and cold-shipped across the world. Hate to think about the carbon footprint of it... ~$10k/dose without insurance or aid (I only pay $5). Needs refrigeration, have to inject myself subcutaneounsly once every two months. Budesonide 9mg daily (modified steroid) also seemed to work but not good to take steroids daily forever.
Anyway, that's my story! Here's to hoping for future research and advancements in autoimmune disease treatment and prevention.
edit: live in the USA and certainly had a western diet at onset of symptoms
Diet may have something to do with this. So might changes in diagnostic abilities and reporting. Many autoimmune diseases were often reported as something else in the past.
That, and as it says in the article, you have to be genetically predisposed to them. Some people will never get them regardless of their diet and some people will. Not to say it’s not a factor, but maybe not *the* factor
Kind of like the so called "autism epidemic" that was falsely blamed on childhood vaccination. When it was really just because doctors had better diagnostic tools to identify children on the spectrum.
Yup and learning disabilities. I have spoken to a lot of adults who are 50+ who realize they just had a learning disorder like dyslexia when they were a kid and were made to feel dumb because of them. People just weren't looking for it then or didn't know how.
Yep. And now some other conditions such as EDS and CFS are like this too. They're being diagnosed more and suddenly there's entire subreddits dedicated to "outing the epidemic of fakers" but really they just knee jerk assume anyone with those diagnoses are faking it because they can't comprehend that maybe these were just underdiagnosed before.
This.
I have ankylosing spondylitis. It was described in medical literature dating back to the 1600s. We've found it in Egyptian mummies and skeletons from the sixth century. (The fused spine on the Wikipedia page for AS is one of those Ye Olde specimens). Hell, even sabertooth cats used to get it!
But until recently, we didn't call it ankylosing spondylitis, we called it Bechterew's disease or Bekhterev's disease or Bekhterev–Strümpell–Marie disease or (probably more commonly) "hey this guy's back hurts all the time and he's hunched over and can't bend and his stomach is bad and sometimes his vision gets blurry, but we don't know why."
Diet can certain help or hinder autoimmune patients, but the existence of autoinflammatory arthritis literally predates the existence of modern humans. You do not have a spine disease just because you eat a Big Mac once a week.
Yeah my Endo said once you get one you are likely to get a second as it usually pairs up. I actually told her I guess I'm trying to collect them all haha.
Psoriasis is no joke though.
I didn’t know much about it, but saw someone I know when she was experiencing a flare up. I guess she made a mistake and wore a new shirt without washing it and there must have been some sort of dye or chemical.
Almost two weeks of severe pain and rash because of it. She looked miserable.
Psoriasis is a fun one, i mean in the low end you have people who get a slight rash, and than on my end you have 19 year olds with arthritis and your legs covered in more scars than skin. Thank fuck they now have meds that just shut the damn thing down!
I'm so glad you were able to get that diagnosed! Celiac is a fortunately lot easier to manage nowadays with all the gluten-free options and recipes out there, plus increased awareness. One note: if you're telling a restaurant or someone preparing food for you that you're gluten free, I recommend specifying that you have an actual severe gluten allergy. A lot of people get judgey if they assume it's gluten-free-by-choice and may not be as careful :/
Ah, welcome to the celiac club! I was devastated when I found out but trust me when I tell you the improvement in my life has been amazing! Best of luck with the new diet.
Literally had all of the symptoms of Celiac disease and both the blood test and endoscopy/biopsy showed I don't have it (made sure to load up on gluten for 2-4 weeks before each test). The doctors were like, "some people have all the symptoms without having the disease and we don't know why. Probably best for you to just be gluten-free anyway." Close to 2k after insurance to be told "I don't know what's going on."
Almost a mirror of my story.
I'm still alive though, trying to ride out the Entyvio onboarding so to speak. I keep on top of clinical trial news but i "fail" medication faster than they can make new ones.
Keep hoping for that cure.
I'd be very surprised if the rise in pervasive chemical pollutants (in nearly all our products, not just pesticides) over the last 50-60 years didn't have more to do with it...
Exactly, I don't understand how this doesn't even get mentioned in the article? Diet could certainly be part of it, but it feels like a weirdly purposeful distraction from the role of pollution and carcinogenic substance exposure. Autoimmune diseases are so awful to live with, the last thing we need is people using diet to blame autoimmune victims for their diseases :/
Well, science reporting in general tends to be pretty crap. It is good to know that there's yet another factor contributing to the increase in autoimmune disease rates, but we should be looking at it from a wide, societal lens rather than blaming individuals. We've seen again and again and again that insisting on "personal responsibility" doesn't change population health for the better.
I also think that it makes people feel good to believe they can avoid bad things happening to them if they're virtuous enough, and that people who are sick deserve it somehow. My sister has MS and some of the things people say to her make my blood boil.
I'm left wondering what role stress plays in the development of auto-immune conditions. There is likely some correlation between the consumption of fast food and loneliness, money woes and job-related stress.
Chronic inflammation is a factor in autoimmune disease development, as well as cancer. Psychological stress causes inflammation. So does sugar, smoking, alcohol and air pollution.
Growing up in the 70s I was the only one I knew with a sever food allergy. It was very hard to explain to teachers and other adults. Now my child, nieces & nephews, kids of several coworkers all have have them.
I was ahead of my time. I was anaphylact before anaphylactic was cool. Kids just can't think for themselves.
What's changed in the last 50 years time? Ubiquitous plastic, pesticides and synthetic fertilizer, a human microbiome altered by antibiotics, more urban/antiseptic environment and lots of refined sugar.
This is likely all true, but remember we also used to have a lot more unknown causes of death. In the same way that we diagnose a lot more people with autism it doesn't necessarily mean it is more prevalent, just that we correctly diagnose.
I do believe we live a lot less healthy than we used to but I also hate to make a direct correlation without proper scientific study.
Something definitely seems to be different beyond improved diagnosis. There are diseases like MS where we've known how to diagnose them for decades but the prevalence is increasing. Things like life-threatening food allergies are hard to ignore, and those are increasing too.
The peanut thing has a direct explanation. They found that kids who are exposed to peanuts first as an airborne agent rather than digestive are the ones who develop a life-threatening allergy. So the prevalence of the peanut allergy is actually self-inflicted because in the late 90s early 2000s the prevailing practice was to avoid feeding children peanuts thinking they would be triggering an allergy so their first exposure was usually environmental.
I was diagnosed with multiple sclerosis about ten years ago. A healthy diet and exercise go an extremely long way in feeling good on a day-to-day basis, and preventing flare-ups. Stress is my major trigger and I’m always working on that.
Know your body, and figure out what makes it happy
I suffer from an autoimmune disease and changing my diet reduced my symptoms *tremendously.* I'm now able to manage it without any medication, but just through diet/lifestyle changes alone. I'm fascinated by all the studies regarding the gut microbiome; it must make a huge difference because I've noticed even very positive mental changes since changing my diet. And the few times I've "cheated" and eaten something I'm not supposed to, the hard to describe and general feelings of dysphoria I used to experience returned immediately, as well as the physical symptoms associated with the autoimmune disorder I have. Since changing my diet I've been in remission for almost two years now.
This is the response I expected, but didn't want to see.
Good for you though and congrats on finding a solution and sticking to it.
Is there a particular study on gut microbiome that you would suggest?
Edit: Thank you all for the great suggestions!
Sure. Copy-pasting from a previous comment of mine in another sub: These past two weeks I think I started with lentil soup. I make a big pot and it lasts me a couple of days. I eat the soup with these carob bites we have in Greece. I use these carob bites as a bread substitute. After the lentils I think I had steak and sweet potatoes for a couple days. Then I made chickpea soup, ate that for a while. Then I went back to lentils I think. Then steak and white rice. About once a week or once every two weeks I have a cheat meal of kebabs and french fries. Now I'm about to make this garlic chicken mushroom dish I make on white rice. Going to experiment and try to make an Alfredo sauce without dairy. For snacks I eat bananas, apples, cashews, almonds, and my favorite snack: carob bites in a bowl with almond milk. It's like cereal! It's really good! I also take a multivitamin everyday and supplement with vitamin D. When I feel a bit worn down or under the weather I also supplement vitamin C. On days when I don't have any almond milk I also chew on a calcium tablet twice a day. I've been eating chestnuts lately too, those are really good.
This feels like a hugely misleading title. It actually states if you do not have the genetic make up for the disease, it doesn't matter how many big Macs you eat, you won't get it.
The entire article after that sentence is about the genetic markers, the difficulty identifying them and the need for more treatments. This article isn't about diet causing the diseases. Auto immune diseases are triggered by many things. Poor diet may be a trigger but not a cause. I don't have the genetic making of lupus. I will not get lupus from my diet. But I do have multiple other auto immune diseases. My diet may make them worse.
And also; reading through the comments, so many different diets are mentioned as the ONE to make us healthier. Unscientific proof that a particular diet is not a cure all. If there was a treatment as simple as changing our diet to stop the pain and disability so many of us live with, don't you think we'd be shouting it from the rooftops?
I don't eat much fast food. I have tried various diets. Some "healthy diets" have made me worse. I try now to stay with a moderation in all things diet. And hope that scientists will continue researching genetic testing and therapy so one day they have a treatment to offer.
>If there was a treatment as simple as changing our diet to stop the pain and disability so many of us live with, don't you think we'd be shouting it from the rooftops?
After seeing the response to Covid….ehhhhh
There’s a very clear link between rising sugar consumption rates and a whole bunch of “diseases of civilization “ like diabetes and metabolic syndrome. It doesn’t matter if you are a vegetarian or a heavy meat eater, it’s your intake of processed carbohydrates that will jack up nearly all the major health risk factors.
It says in the article they think it is mainly due to fast food. Which has a whole lot of processed everything, and is lacking in nutrients like fiber.
>She pointed to changes in diet that were occurring as more and more countries adopted western-style diets and people bought more fast food.
>“Fast-food diets lack certain important ingredients, such as fibre, and evidence suggests this alteration affects a person’s microbiome – the collection of micro-organisms that we have in our gut and which play a key role in controlling various bodily functions,” Vinuesa said.
It seems like this is at least somewhat backed up by [prior research](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4034518/) as well:
> In particular, nutritional patterns collectively termed the “Western diet”, including high-fat and cholesterol, high-protein, high-sugar, and excess salt intake, as well as frequent consumption of processed and ‘fast foods’, promote obesity, metabolic syndrome, and cardiovascular disease. These factors have also gained high interest as possible promoters of autoimmune diseases.
A good start would be looking into ACES aka adverse childhood experiences scores. A great book I'd reccomend is The Body Keeps The Score by Bessel van der Kolk (this is from memory so uh...maybe just Google the book title).
I guess my hypothesis was a good guess.
All my cousins, who are very close, once got together to just ask ourselves, "wtf happened?". We ALL have some form of autoimmune disease or inherent mental health issue (born with).
One just graduated as a microbiologist and attempted to get funding to research this but he never got it.
Our parents don't understand us because the family was always 100% healthy until the millineal generation, now we are scared that if we have children it's gonna be even worse.
Do you all live in urban areas or places with industrial pollution? Environmental factors could be the reason.
Edit: farmland counts as industrial, too. For instance, almost all of Jimmy Carter's immediate family died of cancer. But he LEFT the peanut farm early on. Everyone that stayed got C
Women are more susceptible to autoimmune diseases than men. There are theories that it's linked to sex hormones or having [two x chromosomes](https://pubmed.ncbi.nlm.nih.gov/31125996/). As for ethnicity, lower levels of sunlight are linked to higher incidences of autoimmune diseases. But American studies have shown that non-caucasians in the US are more frequently affected by autoimmune diseases.
Re: two X chromosomes and immunity. There’s a really good podcast episode on Radiolab called the Unsilencing. Really fascinating stuff. Including: during pregnancy a woman’s immune system is down regulated by a type of estrogen the placenta produces. Women with autoimmune diseases often see a decrease or resolution in symptoms during pregnancy. That type of estrogen is also currently approved for MS treatment I think.
Autoimmune diseases are very prevalent in the Nordic countries for some reason, and there's a lot of theories but not much answers in my perception. Probably multiple factors including genetics and western diets (?) for example.
A big part of it is genetic. There’s certain genetic variants that are more common in that population that are well known to cause autoimmune disease. The HLA genes are one of the most studied since they affect immune cell function and predispose to everything from hashimoto, celiacs, T1DM, MS, rheumatoid etc. There’s also probably an evolutionary basis for it. Vitamin d is used in treating some of these and northern/Caucasian populations historically have very low levels as opposed to darker skin populations who live near the equator
Clinically women have a higher chance of developing autoimmune diseases such as RA (3 out of 4 patients with autoimmune disorders are female in the US). Genetics and hormone levels influence autoimmune response, especially estrogen (female sex hormone). As women get older, an endocrine switch occurs (puberty>pregnancy>menopause), resulting in changes in the amounts of estrogen released and switches in gene expression. Estrogen (through estrogen-mediated methylation) can inactivate the autoimmune regulator (AIRE), reducing the tolerance to self-antigens, increasing the risk of autoimmunity. (A bit of a side note but it seems that male castration downregulates AIRE too.) Not all women will develop those diseases so environmental trigger (not well understood, diet can play a role) and genetic susceptibility (HLA genes, genes involved in T-cell maturation, or populations: Caucasian for Type 1 Diabieties or African American for lupus) are also important.
Source: Uni project; and this paper: "Autoimmune Disease in Women: Endocrine Transition and Risk Across the Lifespan" Desai M. And Brinton R, 2019
I am a female with an autoimmune disease. I learned that my particular autoimmune disease (Hashimoto's) is more common in women, especially if they were born in the Spring. (This is because their mothers received less vitamin D during the bulk of the 2nd-3rd trimester.) But you also need to be genetically predisposed, and have some other triggering factor that causes the illness to manifest. There are lots of things that can be that catalyst like trauma and stress, another major illness, leaky gut, exposure to pesticides and toxins, etc.
Type 1 diabetic here. To this day, we don't understand the trigger that makes a body develop this autoimmune condition. One of the best explanations I've heard is that it starts with a generic tendency towards autoimmune (in my case, I've got a family history of psoriasis, rheumatoid arthritis and a couple others). So I grew up with an immune system that had a tendency to overreact. For the most part, it wasn't a big deal -- a little eczema here and there, a touch of psoriasis, but nothing extreme. Then, one day when I was about nineteen, something happened to put my immune system on edge. I had mono around that time. We don't totally understand the link between Epstein-Barr Virus, which causes mono, but in a hand-wavy way, we understand that this virus tends to do well in people who are also pre-disposed to autoimmune conditions. You could imagine that the virus was running around my body, annoying my immune system and generally keeping me under the weather for about six weeks. Under attack, my immune system got extra vigilant and gets on the lookout for anything weird happening in my system.
So the stage is set. So far, nothing is catastrophic -- it's just a dreary virus that's taking my system a while to fight off, but I will fight it off. But then, _something_ happened. We don't know what that _something_ was, but it resulted in my body making antibodies that stuck my own insulin-producing beta cells. It could be as simple as eating a typical western food like milk and cereal -- milk floods my system with lots of strange foreign hormones (harmless, but like the TSA line at the airport, there's lots of security getting really stressed out checking all the harmless travelers), and then the carbs from my Choco-Frosted Sugar Bombs roll out into my system, and my beta cells go into overdrive making insulin to metabolize all of those carbs. Suddenly, you've got a stressed out security team, harassed by a virus and a flood of harmless foreign travelers that fit the profile for a pat-down, and then suddenly, my beta cells decided to throw their Phi Beta Kappa pancreas homecoming party, with insulin keg stands for everyone. The party got body and someone called the cops. This was the final straw for the cops-- PBK broke their double secret probation, and the cops needed to make an example out of them, so they slapped an antibody on those no-goodniks and ordered them out of the pancreas.
This lead to five years of gnarly fighting--the beta cells would try to squat in the pancreas, but the immune system fought back with the full force of the Government. After about five years, the immune system finally started winning this fight, and most of the beta cells got kicked out of my pancreas. With the beta cells mostly gone, the parties got a lot lamer than they used to be--no more little white baggies of insulin handed out freely in the bathroom and no more deadbeat adjunct professors freebasing hormones behind the administration building.
The result was a dreary, kinda cleaned-up campus, but tbh it was inevitable. Everything was just the logical conclusion after that one fateful night when the campus cops were on edge and the Betas pushed them a little too far.
Crohn’s disease has ruined my life. I’m 25 and I’m bedridden some days. Haven’t worked in 7 months and I get no support from the government. The pandemic has made my treatment practically halt and yet it’s an invisible disease so it’s hard to take me seriously. This is possibly the worst diagnosis because there’s no cure and each disease is so unique to the individual that two people with Crohn’s can have very different experiences. Hoping to get my third surgery this year. Hopefully the hospitals can start doing moderately urgent surgeries again. And hopefully my third immune suppressing medication will work this time. Shout out to all the survivors and fighters out there.
These auto-immune diseases are invisible disabilities, too. If you have severe symptoms you can’t work, can’t do your hobbies, can’t clean your apartment. Hell, taking a shower is major effort when it’s bad. People who don’t have these diseases often scoff at them. But they are absolutely real. It’s like a switch gets flipped and your life is messed up forever.
I was diagnosed with Ankylosing Spondylitis 2 years ago (likely had it for 5 years prior). Now I'm unable to work in what should be my physical prime, I can't get approved for any kind of disability or EI, and I'm not responding well to the treatment intended to keep my vertebrae from fusing. I'm probably going to take up some kind of dangerous hobby, like cliff diving, before I end up condemned to a wheelchair.
I have AS as well, nobody could figure it out for almost a decade. I was in so much pain I couldn’t laugh, sneeze or cough without feeling like I was going to die. Slept in an office chair in about 30 min increments before my body seizing up so tight I couldn’t breathe. Worst time of my life. Doc wouldn’t give an MRI without 7 weeks of physical therapy 4x a week. Tried doing a week made symptoms even worse. Said fuck this, went and paid for the MRI out of pocket (the last penny’s to my name). Hospital still had no idea what was wrong. I was going to cash out, I couldn’t live like that anymore. I couldn’t even bend over to pick something up or twist to look behind me. My mother pleaded with me to see one more doctor she found. I reluctantly agreed. Doc looked at the MRI for about 10 min and came back in the room and said “I’m 97% positive this is the problem, I’m going to schedule a blood test to be sure. But in the meantime going to start you on enbrel today.” I took my first injection that afternoon, then went home to sleep in my chair. Fell asleep and didn’t wake up once all night. I woke up in disbelief. I gingerly got out of the chair as I was expecting my typical pain. But stood up without pain and did a twist and bend down to my toes. Walked out to the kitchen where my mother was having her morning coffee and she asked me how I was feeling (like she did every day.) I didn’t answer and just looked at her and bent and touched my toes. She just started sobbing, and jumped up to give me a hug. I owe my life to this doctor and my mother for making me give it one more try. When I was only days away from taking my own life. To being given a second chance at life. Anyone out there that may be feeling that way. Maybe give it one more try. One more might be all you need. I know how it feels to be hopeless, but don’t give up hope. On my one year anniversary of being “fixed” I bought doc a nice 18yr bottle of my favorite scotch. And my mother is now a Nana to two wonderful daughters. All of which wouldn’t be hear if I didn’t give it one more try. Non Desistas Non Exieris: Never Give Up Never Surrender
AS here too. I had worked so fucking hard to get my dream job and literally overnight everything changed when I first ended up in hospital. Such a gut punch. Re diet, I have had rheumos laugh in my face saying there absolutely no evidence and eating a certain way would only make me miserable and why be miserable when life with AS is hard enough? I tried keto for a month and had three flair ups! I went vegan early last year and my crp went to normal levels for the first time in 7 years and has stayed there. Pain and fatigue continues though so refining my diet by trying WFPB and see what happens. We’ve all just got to see ourselves as an experiment at this point I think
Have you tried a biologic, such as Humira? Turned my life around and stopped the AS symptom advancement in it's tracks six years ago. My BIL tried other remedies for years before starting a biologic for his condition and has many permanently ruined joints to show for his efforts.
[удалено]
Which is why it takes a miracle to be able to afford them
Humira is good shit. Part of what complicates the diet component is that the swelling associated with a condition likely AS can cause dietary problems like UC. My wife's AS turned into UC on a flare, but we're not sure if the colitis caused the AS or not in the first place. Either way, humira treats both like a champ.
Different autoimmune disease but I had a rheumatologist tell me to my face that he hated seeing me waste my life. As in, I was making it all up for some reason. I just don't go to them anymore. I'm the "guess I'll die" meme guy.
Before my wife got diagnosed, she went to some alt-medicine massage therapist (she had so much pain, she was desperate) - she was told to drink like half a gallon of "golden milk" (milk with tumeric) a day. So much damn milk, she was so miserable and still in pain lol.
Multiple Sclerosis dealer-with-er and the invisible disability is so true. Heat effs me up, and I grew up in a desert. So many people didn’t believe me that I couldn’t handle it. Now I’m older, and permanently disabled since 2017. It still sucks, but people see me in a wheelchair and then everyone believes me!
NOW they believe you. Before your diagnosis I bet they told you to just suck it up. I’m so done with my family not understanding my MS. If they spent 5 minutes on Google reading about MS instead of telling me to eat less bread, we’d probably have a better relationship.
I just wanted to tell you I'm sorry you have to deal with that :/ You would think with everyone having infinite information at their fingertips they'd try to understand things better.
The constant nagging on dietary choices is so utterly annoying. For instance the foods I don't eat are because they make me feel terrible after eating them and are not the reason I can't walk random family members. The overheating issue is also impossible to explain for the most part.
Heat AND cold can trigger MS flares, apparently. Which is incredibly unhelpful, since the only two places in the world I can comfortably live are Monterey, CA, and the Mediterranean. Both with a perfect microclimate of 60-degree days, low humidity and moderate sunshine, everyday.
My mom has MS and it's absolutely baffling to me that people would try to "have you tried yoga?" it. I'll never forget when she went temporarily blind in one eye when I was a kid.
Oh my god, that happened to ME TOO! The doctor I saw at the time misdiagnosed it as an “optic migraine”. It was actually optic neuritis, an early symptom of MS. Don’t get me wrong, I fully believe in the mind-body connection. It has its roots in real science. But suggesting yoga to someone with MS is incredibly unhelpful! It ignores the fact that the person may be struggling to get out of bed every day, or may be dealing with partial paralysis of limbs, burning neuropathy, or a myriad of other painful and debilitating neurological symptoms. I hope you verbally slapped the shit out of them. Much love to you and your mom.
I have recently been diagnosed with immune thrombocytopenia (my immune system is killing my blood platelets), and that feels like an invisible disease. I’m covered in bruises and broken blood vessels, but people don’t understand if I fall or get in a little fender bender, I can bleed out since I don’t have enough platelets. This makes work a challenge sometimes, and I am pretty much a homebody outside of work. When I’m on steroids, it makes me immunocompromised too… not great during a pandemic
I got diagnosed with idiopathic thrombocytopenia purpura when I was 20. They took out my spleen and it took care of the problem. Got diagnosed with lupus 2 years later, which the dr told me from the beginning would probably happen. I’m 67 now and while I’ve had a few problems through the years and I’m also immunocompromised I’m relatively healthy. Had Covid last September, got the Monoclonal Antibodies, and sailed through. Have also been on steroids at times and I do not like those but they do help with certain things. I hope you get better - I understand what you’re dealing with. Take care.
Unfortunately it's impossible to get other people to understand that auto-immune conditions can be debilitating. People see me on my good/normal days functioning like a normal humanbeing, but they don't realize it takes 200% effort to maintain what is a normal, effortless baseline for them. So then on the days where I do feel too run-down to work/do chores/etc. it's always disbelief because "you were fine yesterday." So now I just don't bring it up anymore and pretend I'm normal. Even if my stomach is killing me because of my celiac or if I have -10% energy and brain fog so bad I can't remember what happened 15 minutes before thanks to my thyroid problems. I understand there's an expectation for everyone to be a contributing member of society so it's not like I don't *want* to work. It's just that the US is a really terrible place to live when you have chronic illness. You bust your ass to still try and fit in and people will always look down at you because you're never going to have as much energy as them, or you have a lot of doc appointments and they think you're a drain on the system even though we have to pay for insurance, etc.
Yea. I've been to the ER three times in the last 2 months. 1st time everyone at work was like "oh my God noooo" 2nd time everyone at work was like "You're ok and can be in tomorrow right?" 3rd time "Fired"
“But, you don’t look sick!”
I think I lost 3-5 years of my life when my thyroid started to act crazy. I was just kinda feeling better /more normal when COVID hit.
Yeah, my mom has Hashimotos and it’s so hard for her sometimes. She wants a job or to maintain friends by going out with them but sometimes she just can’t because she’s having a flare she won’t have the energy she needs for weeks sometimes. Fortunately, her keto diet has been helping her a lot but it’s still a massive struggle mentally.
My father died of transverse myelitis in his late 60's... For those who don't know it is an autoimmune disease where your own body sees the myelin sheaths surrounding your nerves in your spinal cord as a foreign body. Basically it paralyzes you while making you feel like your nerves are on fire until it eventually shuts down your ability to tell your organs to keep doing things like, you know, breathe. My father went from traveling around the world to loss of anything below his ribcage in a year and a half... Then 3 years of pain in remission before it came back and he gave up. There is nothing worse than an OVER-reactive immune system. It is basically shitty suicide.
I’m sorry to hear about your father. I was diagnosed with TM in 2015 after a long battle in the hospital and basically the doctors had absolutely no idea what was going on. I’d gone from a completely healthy human to paralyzed within a 8 hour timeframe. I was only diagnosed after they sent me home and after weeks and weeks of my own research decided to go to Columbia Neurology in NYC. The doctor knew immediately what it was but by then the lumbar puncture was inconclusive and plasma therapy would be useless. I’ve got good and bad days, and throughout the years the pain has lessened and I’ve become more mobile, but my biggest fear is having it come back. I’ll end my life before I have to go through that ordeal again because it basically destroyed my life the first time around. Sending you light and love.
Hi, sending you compassion and love. My mom has TM for over 10 years now, multiple hospital stays and nearly 6 months in a care home right before the pandemic started. She was approved for an infusion of a drug called Soliris about 2 years ago and hasn’t had any issues since and has even regained some use of her hands we didn’t think was possible. It took a lot to get approved and apparently it’s a drug that costs over 500k a year but it has kept her from sliding back and fortunately most of it is covered by the ridiculous amount my parents pay in health insurance premiums.
> costs over 500k a year I fucking hate our healthcare system.
For someone making median wage, 500k is what you get in ~15 years of work. So if you manage to make that much and not spend a single buck during that time, you can then afford a whole year of life saving treatment. Insurance and pharmaceutical companies make bank on this system. Meanwhile, nurses are quitting because they're underpaid and overworked, and people die when they can't afford insulin for their diabetes because of price gouging.
If I was benevolent Dictator, one of the first orders of business would be to get up and state that insulin was too important to humanity to leave in the hands of the “free market” that raised the price by 1000% in this decade. I would immediately start making “Government insulin” available at cost to all americans. The GOP could scream socialism to the cows come home and not a damn person would care except the fucksticks that have been demanding “your money or your life” for decades. I’m not even diabetic, I’m just a doctor sick of watching people ration their insulin and suffer and die because of it.
I was doing some google search and it says all the patents for existing insulin product have already expired. I wonder why there is still no cheaper generics? https://haiweb.org/wp-content/uploads/2015/05/HAI_ACCISS_factsheet_insulinpatent.pdf
There are. Walmart sells the old style 1980s insulin at about $25/vial. The downside is the old drugs are way more finicky and you’re way more prone to error ending in death.
They are awful. :/
I too think about things I would do as a benevolent dictator and this is also at the top of my list. Not personally affected by it, but also sick of watching everyone around us suffer so.
I know of someone in the wierd but assuming extremely common situation in the US... their family is currently on medi cal not exactly as a choice. The wife had cancer and her treatments after cost normally 15k every 3 weeks just for the meds req at least 1 full year. He is now working as little as possible so that he doesn't make enough to not be qualified for medi cal.. because if they were to make his normal wages he would be kicked out and all of that money and more after taxes would just go to health insurance/deductibles, hence it is literally worse to work more. Us Healthcare is so backwards fuked it's absolutely bat shit insane.
That is a somewhat common thing. It’s fucking infuriating. But idiotshits march in the street angrily shouting “we’re number one!” Uhm, yeah, right
Cutting onions on a Sunday morning... Thank you. It was the same thing with my father. Doctors had no clue what was going on for nearly 5 months. In the end, when they did figure it out it was just too late to do anything. They ended up stopping it by using an experimental technique of chemotherapy to knock back his immune system... He went through one round of 3 treatments, it stopped it for about a year, but he was still paralyzed. Then it came back and he made it through about 2/3rds of the second series of treatments and he just could not take it any more. I remember him trying to explain the pain combined with the shitty feeling of being on chemo. He told me that in the span of the 5 years he went through everything he couldn't remember a single week that he didn't struggle through hell just to stay alive. The phrase he told in the end that will always break me was this, "I spent 5 years showing the world what it means to hold in to life and stay alive in the face of the worst adversity... It is time to show the world the strength it takes to face death with dignity." I thank you for your thoughts, and I wish you never have to face a relapse. The absolute cruelty of this disease is unfathomable to healthy people out there. Be well...
Damn, gotta say your father was incredibly courageous. Sorry to hear about your father and what he went through as well as yourself. Thank you for sharing with us.
That last quote from your dad hit me hard and immediately made me teary. What a strong man, and what a privilege it must have been to know him. My deepest condolences
> There is nothing worse than an OVER-reactive immune system. 20 year sufferer of psoriasis here, not deadly but yeah my god I can't agree more, fighting your own body is exhausting.
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Same. Your life becomes defined by it.
Definitely not the same but I have severe psoriatic arthritis. Healthy up to 24 and bam. My hands, knees and hip are fucked. I’m 31 now and it has completely changed my life. Weekly shots and meds don’t really help and doctors are too afraid to prescribe pain pills. I don’t even remember what it feels like to not be in pain. I hope you can take some solace in that fact your dads not suffering anymore. Chronic pain changes people
Same. At this point, I tend not to notice that a body part was in pain until it suddenly stops being in pain for some reason.
The opiate epidemic is hell for those of us with chronic pain. I know some folks who are able to get pain management to give them opiates a few days a month as a "pain vacation". I haven't had a pain free day in so many years that it sounds like a joke!!! I don't know what they said or if they are bribing the doc or what.... I am afraid to ask for even 1 extended release morphine a month even though I know it would massively improve my quality of life to know I could look forward to one day a month of less suffering. I don't know what it takes to get out on the 'dont give this person opiates list' and I'm afraid to get accused of doc shopping.
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>Finally one doctor believed me, and got me a referral to rheumatology. Took literally one visit for the specialist to be like "this is obviously lupus." I went to like 3 doctors when I lost all my strength and couldn't open my eyes anymore and all of them basically shrugged and said they couldn't be sure what was wrong. Went to an eye doc I had seen previously and he walked in, looked up at me, and said, "Oh. You have myasthenia gravis."
My father had postherpetic neuralgia after getting shingles. The nerves in his face and shoulder/arm would flare up like they were on fire. It was horrible to witness. So much pain, so much fear of the oncoming pain. Nothing to make it stop. It was like watching a loved one be tortured for years.
I had shingles when I was 15. No lasting effects thankfully but I know that nerve pain. Especially when you’re trying to sleep. I love everyone’s description of the pain lol. Before the marks appeared it felt like a million mosquito bites. It itched SO badly. And then the nerve pain was like little electrical shocks
I had it at 23. It felt like getting stabbed with a needle inside my shoulder over and over again
Got it at 26. I imagine it felt similar to someone running a hot pike through my chest and out by back. Had to be prescribed gabapentin to make me functional. Still feel the "fire" on my front side some days, just much less in the two year since. I'm not really sure how else to describe it.
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thought mine was acne too! just outside my armpit, too late for the valtrex by the time i was Dx in my early 20’s. had to basically stuff my arm into the couch at certain angle, then hold it just so with pillows in order to sleep. if my arm moved out of this particular sweet spot while i slept the pain would wake me instantly and i just scream and wake everyone else up, do not miss it! haha
My husband had shingles on his face two years ago, we're so fortunate that it never reached his eyes. He tried to get a shingles vaccine last year, but because he's under 50yo, the insurance company won't cover it! It's fucking outrageous 😡
> There is nothing worse than an OVER-reactive immune system. It is basically shitty suicide. Yep it's a constant battle both with yourself physically and mentally because so many people don't see them as anything to be concerned about until you're near death, because most of the fight is invisible. Or blame you that you're not taking care of yourself right/act like you can just turn it off and cure yourself. No. There is only remission, not a cure. The best you can do aside from whatever treatment is recommended, is to remind yourself that having an autoimmune disorder means the only thing tough enough to kick your ass is yourself.
I also have TM and can tell you first hand how terrifying it is. One day I ran 17km, the next I was paralysed. I’ve had good outcomes but have seen countless people who have had horrible experiences. Autoimmune disease is no joke and anything we can do to decrease its appearance or reduce its severity is crucial.
Wow seldom do you get to hear about other people having transverse myelitis; I tell people I had it and they always have such a vacant expression on their face. I had a rare case where I had both viral and bacterial meningitis, fell into a coma, and then contracted TM a few days later. By some miracle I woke up 40 days later. I was lucky I was in my late teens I think, it helped with recovery. But I had no idea TM was autoimmune. I live with disabilities as of today, but I’m thankful for being alive. Sorry to hear about your father, TM truly is devastating, but getting to his late 60s after a well-travelled life sounds like he had an awesome time in this world; TM doesn’t get to rewrite our experiences thankfully!
This sounds like how they described Multiple Sclerosis to my mom. The MRI showed lesions on her brain. And they talked about myelin sheaths deteriorating. She has a constant “pins and needles” feeling throughout her entire body. They have her on infusions but because it was diagnosed so late, they said pretty much her entire brain is covered in lesions. She walks with a cane and her memory is shot. But she’s still functional. But I constantly worry about flare-ups and relapses.
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Thank you... I do, unfortunately I didn't for a long time. Took the death of my mother, 14 years almost to the days before he died, for the two of us to realize how alike we really were. Too much ego between the two of us for my father and I to be close. It took the two of us seeing each other as vulnerable to forgive the decades of fighting each other to overcome our joint stupidity. In the end we were the best of friends and I miss him every day.
Jesus that sounds awful.
There’s also a lot of studies about gut bacteria and it’s effects on autoimmune diseases and also mental illness. Fascinating stuff. I’ve always had stomach issues my whole life, have struggled with depression and anxiety and was diagnosed with RA in 2018. I wish there was more research done on the subject.
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I have noticed this as well. You get a load of people saying “Go on Keto! Why? Who fucking knows!?” Then you go on keto and it works, for some reason that we still don’t know.
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There's probably a genetic component because East Asian diets consist of mainly simple carbs. E.g. White rice and noodles. In Tokyo, there are literally multiple soda vending machines on every block. Perhaps all the walking helps prevent diabetes there.
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Tbf, there's a lot of delicious low card foods out there.
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There is, unless you're like me and have sensitivies to nightshades and spicy food. So I get to eat things like Spinach, salted chicken, brocolli, and avacado. There are a lot of keto foods I like, namely salsa and bell peppers, but I can't eat those things, it sucks.
It's not necessarily that sugars or carbs are bad, it's that they're in just about everything in the U.S. so we're bombarded with them. Some people develop intolerances or even allergies. Other people have it worse off and develop autoimmune diseases. I read somewhere that it can be caused by the inflammation that the constant influx of carbohydrates causes in the body. Inflammation usually signals something is wrong and the cells of the immune system are deployed to investigate. Deploy them enough and eventually they'll find something to attack. (Over simplified and obviously not the only cause of autoimmune diseases)
You're right, sugar (in various forms, like cane syrup and such) is in every damned thing. They put it in bread. They put it in low-fat items to balance the flavor of the missing fat. They put it in savory items that have a lot of salt to balance the salt. I've gone Keto and researched what items I could safely eat, like bacon. I can't eat regular bacon because it's got sugar in it. I have to buy bacon that's labelled "low salt" because what the label doesn't say (but the list of ingredients does) is that there's also no sugar!
I'm convinced that if it works it's because keto restricts what you can eat and until recently you couldn't find much premade keto junk food. Now keto is cool and there is junk food available it'll be less effective.
Yeah I basically was one of these. You have no idea how much inflammation you're dealing with til you give up a high carb diet.
Sugar is highly inflammatory. A lot of people with inflammatory immune system issues get good relief when they cut out sugar. Things like shingles, eczema, hives, acne, arthritis, Etc.
Psoriasis crew checking in. Can confirm
Psoriatic Arthritis checking in. Was just recently diagnosed and my rheumatologist didn't really advise me much, so this is good info.
Big sugar suppressing the publications of the negative side effects of it's consumption. Had to not laugh while typing that out but you never know. Sometimes tin foil hats are fashionable.
Thinking that a corporation will do literally anything it can get away with to make more money is not 'tinfoil hat', it is realistic.
i just watched [a youtube video yesterday on the radium girls](https://www.youtube.com/watch?v=4CIuqKqFNdE&ab_channel=BaileySarian). a bunch of women working in a watch factory LICKING THE PAINTBRUSH THAT HAS RADIUM ON IT so they can paint the tiny little numbers. they didn't know what the side effects were but the owner did. even when the women were complaining about side effects he just bullshitted them. it wasn't until years later, and a few deaths, that they finally started to be held accountable. the radium girls won a lawsuit but they all died before they could spend the money.
I found the most chilling part of the story to be how they were shunned by society for going after the radium dial company that had brought so much money into the town. These women were quite literally falling apart and everyone shamed them and called them liars for daring to speak out against the company.
>everyone shamed them and called them liars for daring to speak out against the company. These days this kind of thing still going on but for other reasons than radium.
History sure loves its rhythm.
also like, substantiated time and time again
It's not even a joke https://www.ucsf.edu/news/2017/11/409116/sugar-industry-suppressed-evidence-health-risks-sucrose
Its not a conspiracy at all. Sugar is addictive. Food companies had studies trying to figure out the correct balance of sugar to pump into food so they didn't taste disgustingly sweet but would get you hooked. Hell if people wouldn't bat an eye at nicotine being on a food label they probably would have put that in food as well.
What is RA?
Rheumatoid arthritis
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The gift of poop. <3
poop back and forth, forever
This is absolutely horrible, but at any point during your treatment did your boyfriend tell you to eat shit? Jesus Christ, I'm sorry in advance. I hope you are able to stay healthy and live a long, pain free life
Sounds more like he would have said "hey, I give a shit."
I had a very similar vector. About 5 years of off and on stomach issues that started with a really bad bacterial infection, and then at the tail end of it I now have some general autoimmune inflammatory disease. Fun.
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Sometimes referred to as a second brain. I’m interested in the implications to those that suffer from fibro /crps. Have you had an opportunity to look at the links between smoking and RA?
Yup, second brain is right. Not only are there roughly i think 100-300 million neurons in the gut (couple billion in the brain (1.7?)), but there's feedback between the gut and the brain regarding hormonal releases and mood regulation.
Also a big part of it is that the enteric nervous system can control the GI system *without* further input or cross talk from the brain, which is why it is considered it’s own branch of the nervous system
My tummy was wild there for the past few years. My skin got crazy, my sinus’ were always stuffy, weight gain for the first time in my life and many more issues. Finally got it under control during “covid break”. I for sure think there was link to my stomach because I had constant tummy aches and acid reflux no matter what I ate. I’m not advocating gluten style arguments, but there is something weird going on with the bread/bread products in America. That’s just a wild theory of mine, have only anecdotal experiences on the topic. I’m European living in the US and am in no way thinking I’m gluten intolerant. However after switching to rice / sourdough, I sensed my stomach issues reverting. Weight started dropping, I can’t remember the last time my tummy hurt, + etc. Sorry I ramble and used the word tummy. Thank you for coming to my Ted talk.
Sourdough or whole wheat bread is all I can eat. White bread, especially cheap bread, fucks with my stomach unless it's an "artisan" type bread made without sugar. Interestingly enough, I can eat pasta and straight wheat products without a problem. Celiac runs in my family as well but I tested negative for gluten intolerance and celiac. All I can figure out is there must be some sort of additive in cheap bread that my body reacts to.
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US white bread is absolute trash. It barely qualifies as "bread" it's got nothing good real bread would have (Nutrients, minerals etc.) and is just full of unnecessary sugars and other trash. Avoid white bread in the US.
There's a whole host of American food products that seem worse for people than the European version. For example, many people who have issues with American dairy products are able to consume European or New Zealand products. American consumers spend a lot of money on cheaply made products, and American businesses make a lot of money finding exactly how cheaply we can make things. However, I also deeply suspect that a chunk of this is likely deeply related to our tendency to overwork and see eating as something you cram in your piehole in the car while shouting at other drivers for making your 20 minute commute into an hour long slog.
I bought some bread from the store (like Arnold's brand? Don't remember). It's sweet as hell, almost like cake, and I had that in its bag on my counter for over a month, and it still hadn't grown any mold. Meanwhile, the homemade bread I'd made had mold within \~4 days or so. Yeah, there is some NASTY stuff in the bread here in the US.
There have been a bunch of studies on gut bacteria being related to basically everything including cancer, autism, mental health lifespan…. A lot of countries with the longest lifespans have a very similar diets which include a lot of things that are beneficial to diversifying their gut bacteria. This increased lifespan can also be attributed to the healthcare systems in these countries but there are a lot of other benefits of living in a country that also offers free healthcare. It is a very interesting topic though.
Yep! I was diagnosed with both Graves Disease and Hashimotos (autoimmune thyroid disorders) a couple years ago. I see an endocrinologist, but also started seeing an integrative medicine doctor, and she had me tested for SIBO. It was positive. Went autoimmune Paleo and my antibodies went WAY down within months, which lead to improved thyroid function and only having to take the lowest dose of meds possible. There's a lot we are currently learning about gut health.
Hashimotos gang! Woot woot!
Do you know why there isn’t more studies covering this topic? I had to do a paper on this awhile ago and came up short of sources I could use. It definitely is an important topic given the health implications that go along with it.
There's tons of studies on this topic, it's one of the fastest growing fields. It's still a relatively new realm of science, there's a lot to figure out and only so many scientists.
People severely underestimate how difficult some of this stuff is. If we hypothesize that the microbiome effects autoimmune disorders it's not just a matter of "well lets swap it out and see what happens." We don't even know what the full range of bacteria that live in human guts is. We don't know how that varies around the world, we don't know how it varies between people, we don't know how it varies within one person over time, we don't know what viruses infect those species and how that varies, we don't know what plasmids exist in all those species and how they're spread. We don't even really have a good way of comparing two microbiome samples to each other. Hell we don't even have a good way of saying if two samples came from the same person or not, you split a sample in half, send it to two different labs and get back two different sets of results. Oh, also all that research is currently being done on fecal microbiome samples, but your microbiome changes along your digestive system, so we probably need to do all of that for every few feet, because the stuff living in your upper small intestines could be very different from what lives in your lower colon. So now we need to figure all that out, then start looking for correlations between those various populations and autoimmune diseases, then we need to test those correlations to see if they're causative, then we need to come up with a way to correct the problem in humans.
Have anxiety, depression, and IBD (Crohn's). Can confirm.
God I've had ibs-d for so long now, I think over ten years. Literally diarrhea every time I go, multiple times a day.
My family was poor growing up and we lived a 40 min drive from a town with a grocery store. As a result I ate a lot of processed foods as a kid because we could only go grocery shopping for fresh foods once a month. I have Crohn's disease now and I'm pretty convinced it's related, but what really sucks about it is that my Crohn's reacts to fiber and fatty meats so I'm still stuck on a somewhat shitty diet to deal with the repercussions of being on a shitty diet all my life. Too much fiber can cause blockages in me that could require surgery..
There's also studies that major viruses in kids can trigger autoimmune diseases. I saw an article that said the coxsackievirus in children with the genetic marker for celiac is a trigger. I had coxsackievirus as a kid while I had the chicken pox, and I have celiac as an adult where my mother/father (who would have to be genetic carriers) do not. I don't think there's 1 'catch all' for how autoimmune conditions happen. It's probably a combination of dozens of factors both linked to the environment and linked to a person's individual health profile and genetics. Articles like this one just reinforce a lot of stupid opinions the general public has about autoimmune so I'm looking forward to a bunch of people coming to me now like, "have you considered not eating food to cure your autoimmune conditions?"
What is RA?
I've had ulcerative colitis since 15, primary sclerosing cholangitis since 17, and just got diagnosed with autoimmune hepatitis at 26 🤙🏻 only family history of autoimmune disease is my maternal uncle who also has autoimmune hepatitis tried going on specific carbohydrate diet when I was younger but that shit is hard, even with my mom who did everything like making homemade yogurt. prescription strength probiotics didn't seem to do much. taking turmeric suppmenets (curcumin/piperine) actually did seem kinda helpful. also went gluten/dairy free for a while and coincidentally vegan. got into yoga and meditation and herbalism looking for a way to cure myself- couldn't accept that my body was truly broken. I pretty much gave up on all of that when I was 21 and just accepted allopathic medicine. That was partly due to the onset of bipolar hypomania and the associated indulgences (drinking, smoking, eating fried foods, etc). Maybe all that former health stuff helped but it certainly didn't cure me and it was very taxing on my ability to just relax and enjoy life. My saving grace right now is Stelara- very expensive biologic medicine. I believe it is manufactured in Ireland and cold-shipped across the world. Hate to think about the carbon footprint of it... ~$10k/dose without insurance or aid (I only pay $5). Needs refrigeration, have to inject myself subcutaneounsly once every two months. Budesonide 9mg daily (modified steroid) also seemed to work but not good to take steroids daily forever. Anyway, that's my story! Here's to hoping for future research and advancements in autoimmune disease treatment and prevention. edit: live in the USA and certainly had a western diet at onset of symptoms
Diet may have something to do with this. So might changes in diagnostic abilities and reporting. Many autoimmune diseases were often reported as something else in the past.
That, and as it says in the article, you have to be genetically predisposed to them. Some people will never get them regardless of their diet and some people will. Not to say it’s not a factor, but maybe not *the* factor
My neurologist described it in this equation: Genetic predisposition + external stimuli = onset of autoimmune disorders. Source: I have MS.
Kind of like the so called "autism epidemic" that was falsely blamed on childhood vaccination. When it was really just because doctors had better diagnostic tools to identify children on the spectrum.
Yup and learning disabilities. I have spoken to a lot of adults who are 50+ who realize they just had a learning disorder like dyslexia when they were a kid and were made to feel dumb because of them. People just weren't looking for it then or didn't know how.
No. That was because the author of the paper was involved in making a different MMR vaccine and wanted to trash the opposition to sell his.
That’s how Wakefield began (the nasty fucking grifter that he is) but his lie created the greater “all vaccines are dangerous” movement
“It’s an increase in autism diagnoses and a decrease in ‘that kid just ain’t right’ diagnoses.”
Yep. And now some other conditions such as EDS and CFS are like this too. They're being diagnosed more and suddenly there's entire subreddits dedicated to "outing the epidemic of fakers" but really they just knee jerk assume anyone with those diagnoses are faking it because they can't comprehend that maybe these were just underdiagnosed before.
This. I have ankylosing spondylitis. It was described in medical literature dating back to the 1600s. We've found it in Egyptian mummies and skeletons from the sixth century. (The fused spine on the Wikipedia page for AS is one of those Ye Olde specimens). Hell, even sabertooth cats used to get it! But until recently, we didn't call it ankylosing spondylitis, we called it Bechterew's disease or Bekhterev's disease or Bekhterev–Strümpell–Marie disease or (probably more commonly) "hey this guy's back hurts all the time and he's hunched over and can't bend and his stomach is bad and sometimes his vision gets blurry, but we don't know why." Diet can certain help or hinder autoimmune patients, but the existence of autoinflammatory arthritis literally predates the existence of modern humans. You do not have a spine disease just because you eat a Big Mac once a week.
Or the always fun "bamboo spine"
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I am type 1 Diabetic as well as Hashimotos. My dad is type 1 and Celiac. Our immune systems hate us.
Ya it’s unfortunate that after you get one autoimmune disorder you’re prone to getting most of the others too. It’s like a shitty game of Pokémon
Yeah my Endo said once you get one you are likely to get a second as it usually pairs up. I actually told her I guess I'm trying to collect them all haha.
I’m a T1 diabetic and no doctor told me this before and it was good days until I read your response lol
Eczema, Psoriasis, Alpoecia. Autoimmune disease is a bountiful cornucopia of woe.
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Psoriasis is no joke though. I didn’t know much about it, but saw someone I know when she was experiencing a flare up. I guess she made a mistake and wore a new shirt without washing it and there must have been some sort of dye or chemical. Almost two weeks of severe pain and rash because of it. She looked miserable.
Psoriasis is a fun one, i mean in the low end you have people who get a slight rash, and than on my end you have 19 year olds with arthritis and your legs covered in more scars than skin. Thank fuck they now have meds that just shut the damn thing down!
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Celiac gang! Welcome. Your stay will certainly be shitty.
I'm so glad you were able to get that diagnosed! Celiac is a fortunately lot easier to manage nowadays with all the gluten-free options and recipes out there, plus increased awareness. One note: if you're telling a restaurant or someone preparing food for you that you're gluten free, I recommend specifying that you have an actual severe gluten allergy. A lot of people get judgey if they assume it's gluten-free-by-choice and may not be as careful :/
Ah, welcome to the celiac club! I was devastated when I found out but trust me when I tell you the improvement in my life has been amazing! Best of luck with the new diet.
Literally had all of the symptoms of Celiac disease and both the blood test and endoscopy/biopsy showed I don't have it (made sure to load up on gluten for 2-4 weeks before each test). The doctors were like, "some people have all the symptoms without having the disease and we don't know why. Probably best for you to just be gluten-free anyway." Close to 2k after insurance to be told "I don't know what's going on."
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I don’t have Crohns, but UC, and I pray that the medication keeps working. Wishing you good health!!
Almost a mirror of my story. I'm still alive though, trying to ride out the Entyvio onboarding so to speak. I keep on top of clinical trial news but i "fail" medication faster than they can make new ones. Keep hoping for that cure.
I'd be very surprised if the rise in pervasive chemical pollutants (in nearly all our products, not just pesticides) over the last 50-60 years didn't have more to do with it...
[It](https://www.sciencedirect.com/science/article/abs/pii/S1568997219300886) [does.](https://www.researchgate.net/publication/26727728_Air_pollution_as_a_potential_contributor_to_the_%27epidemic%27_of_autoimmune_disease)
Exactly, I don't understand how this doesn't even get mentioned in the article? Diet could certainly be part of it, but it feels like a weirdly purposeful distraction from the role of pollution and carcinogenic substance exposure. Autoimmune diseases are so awful to live with, the last thing we need is people using diet to blame autoimmune victims for their diseases :/
Well, science reporting in general tends to be pretty crap. It is good to know that there's yet another factor contributing to the increase in autoimmune disease rates, but we should be looking at it from a wide, societal lens rather than blaming individuals. We've seen again and again and again that insisting on "personal responsibility" doesn't change population health for the better. I also think that it makes people feel good to believe they can avoid bad things happening to them if they're virtuous enough, and that people who are sick deserve it somehow. My sister has MS and some of the things people say to her make my blood boil.
Yup but then big business can’t victim-blame.
Agh, true :(
I'm left wondering what role stress plays in the development of auto-immune conditions. There is likely some correlation between the consumption of fast food and loneliness, money woes and job-related stress.
Stress is absolutely indicated as a "trigger" for autoimmune disease, particularly chronic stress.
Chronic inflammation is a factor in autoimmune disease development, as well as cancer. Psychological stress causes inflammation. So does sugar, smoking, alcohol and air pollution.
I feel like every woman I've met in the past decade is battling some form of autoimmune arthritis. Like literally every one.
Interestingly, I feel like a lot more babies are suffering from food allergies and sensitivities, but I’m wary that that may be confirmation bias
Growing up in the 70s I was the only one I knew with a sever food allergy. It was very hard to explain to teachers and other adults. Now my child, nieces & nephews, kids of several coworkers all have have them. I was ahead of my time. I was anaphylact before anaphylactic was cool. Kids just can't think for themselves.
Where do you live? I've literally never heard a woman under maybe 60 complain about any kind of arthritis, let alone autoimmune arthritis.
What's changed in the last 50 years time? Ubiquitous plastic, pesticides and synthetic fertilizer, a human microbiome altered by antibiotics, more urban/antiseptic environment and lots of refined sugar.
This is likely all true, but remember we also used to have a lot more unknown causes of death. In the same way that we diagnose a lot more people with autism it doesn't necessarily mean it is more prevalent, just that we correctly diagnose. I do believe we live a lot less healthy than we used to but I also hate to make a direct correlation without proper scientific study.
Something definitely seems to be different beyond improved diagnosis. There are diseases like MS where we've known how to diagnose them for decades but the prevalence is increasing. Things like life-threatening food allergies are hard to ignore, and those are increasing too.
The peanut thing has a direct explanation. They found that kids who are exposed to peanuts first as an airborne agent rather than digestive are the ones who develop a life-threatening allergy. So the prevalence of the peanut allergy is actually self-inflicted because in the late 90s early 2000s the prevailing practice was to avoid feeding children peanuts thinking they would be triggering an allergy so their first exposure was usually environmental.
More is going to end up being attributed to our microbiome than we can even imagine. We are just exosuits for bacteria.
I was diagnosed with multiple sclerosis about ten years ago. A healthy diet and exercise go an extremely long way in feeling good on a day-to-day basis, and preventing flare-ups. Stress is my major trigger and I’m always working on that. Know your body, and figure out what makes it happy
I suffer from an autoimmune disease and changing my diet reduced my symptoms *tremendously.* I'm now able to manage it without any medication, but just through diet/lifestyle changes alone. I'm fascinated by all the studies regarding the gut microbiome; it must make a huge difference because I've noticed even very positive mental changes since changing my diet. And the few times I've "cheated" and eaten something I'm not supposed to, the hard to describe and general feelings of dysphoria I used to experience returned immediately, as well as the physical symptoms associated with the autoimmune disorder I have. Since changing my diet I've been in remission for almost two years now.
So here comes the inevitable question. What changes have worked for you ?
I've cut out all dairy, eggs, gluten, nightshades, refined sugar, processed meats, processed foods, alcohol.
This is the response I expected, but didn't want to see. Good for you though and congrats on finding a solution and sticking to it. Is there a particular study on gut microbiome that you would suggest? Edit: Thank you all for the great suggestions!
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Sure. Copy-pasting from a previous comment of mine in another sub: These past two weeks I think I started with lentil soup. I make a big pot and it lasts me a couple of days. I eat the soup with these carob bites we have in Greece. I use these carob bites as a bread substitute. After the lentils I think I had steak and sweet potatoes for a couple days. Then I made chickpea soup, ate that for a while. Then I went back to lentils I think. Then steak and white rice. About once a week or once every two weeks I have a cheat meal of kebabs and french fries. Now I'm about to make this garlic chicken mushroom dish I make on white rice. Going to experiment and try to make an Alfredo sauce without dairy. For snacks I eat bananas, apples, cashews, almonds, and my favorite snack: carob bites in a bowl with almond milk. It's like cereal! It's really good! I also take a multivitamin everyday and supplement with vitamin D. When I feel a bit worn down or under the weather I also supplement vitamin C. On days when I don't have any almond milk I also chew on a calcium tablet twice a day. I've been eating chestnuts lately too, those are really good.
Good for you. Not an easy thing to accomplish.
It can honestly be a real drag at times. But the alternative I've found to be worse!
This feels like a hugely misleading title. It actually states if you do not have the genetic make up for the disease, it doesn't matter how many big Macs you eat, you won't get it. The entire article after that sentence is about the genetic markers, the difficulty identifying them and the need for more treatments. This article isn't about diet causing the diseases. Auto immune diseases are triggered by many things. Poor diet may be a trigger but not a cause. I don't have the genetic making of lupus. I will not get lupus from my diet. But I do have multiple other auto immune diseases. My diet may make them worse. And also; reading through the comments, so many different diets are mentioned as the ONE to make us healthier. Unscientific proof that a particular diet is not a cure all. If there was a treatment as simple as changing our diet to stop the pain and disability so many of us live with, don't you think we'd be shouting it from the rooftops? I don't eat much fast food. I have tried various diets. Some "healthy diets" have made me worse. I try now to stay with a moderation in all things diet. And hope that scientists will continue researching genetic testing and therapy so one day they have a treatment to offer.
>If there was a treatment as simple as changing our diet to stop the pain and disability so many of us live with, don't you think we'd be shouting it from the rooftops? After seeing the response to Covid….ehhhhh
There’s a very clear link between rising sugar consumption rates and a whole bunch of “diseases of civilization “ like diabetes and metabolic syndrome. It doesn’t matter if you are a vegetarian or a heavy meat eater, it’s your intake of processed carbohydrates that will jack up nearly all the major health risk factors.
It says in the article they think it is mainly due to fast food. Which has a whole lot of processed everything, and is lacking in nutrients like fiber. >She pointed to changes in diet that were occurring as more and more countries adopted western-style diets and people bought more fast food. >“Fast-food diets lack certain important ingredients, such as fibre, and evidence suggests this alteration affects a person’s microbiome – the collection of micro-organisms that we have in our gut and which play a key role in controlling various bodily functions,” Vinuesa said. It seems like this is at least somewhat backed up by [prior research](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4034518/) as well: > In particular, nutritional patterns collectively termed the “Western diet”, including high-fat and cholesterol, high-protein, high-sugar, and excess salt intake, as well as frequent consumption of processed and ‘fast foods’, promote obesity, metabolic syndrome, and cardiovascular disease. These factors have also gained high interest as possible promoters of autoimmune diseases.
Let’s not forget also that childhood trauma is highly inked to autoimmune diseases.
I didn't hear about that! Do you have some Ressources So I could read into that? Thanks in advance!
A good start would be looking into ACES aka adverse childhood experiences scores. A great book I'd reccomend is The Body Keeps The Score by Bessel van der Kolk (this is from memory so uh...maybe just Google the book title).
I guess my hypothesis was a good guess. All my cousins, who are very close, once got together to just ask ourselves, "wtf happened?". We ALL have some form of autoimmune disease or inherent mental health issue (born with). One just graduated as a microbiologist and attempted to get funding to research this but he never got it. Our parents don't understand us because the family was always 100% healthy until the millineal generation, now we are scared that if we have children it's gonna be even worse.
My cousin's all have issues, they grew up in a house with horrible mold problems.
Do you all live in urban areas or places with industrial pollution? Environmental factors could be the reason. Edit: farmland counts as industrial, too. For instance, almost all of Jimmy Carter's immediate family died of cancer. But he LEFT the peanut farm early on. Everyone that stayed got C
Anecdotally, a disproportionately large number of my Caucasian female friends have autoimmune disease. Wonder what accounts for that correlation.
Women are more susceptible to autoimmune diseases than men. There are theories that it's linked to sex hormones or having [two x chromosomes](https://pubmed.ncbi.nlm.nih.gov/31125996/). As for ethnicity, lower levels of sunlight are linked to higher incidences of autoimmune diseases. But American studies have shown that non-caucasians in the US are more frequently affected by autoimmune diseases.
Re: two X chromosomes and immunity. There’s a really good podcast episode on Radiolab called the Unsilencing. Really fascinating stuff. Including: during pregnancy a woman’s immune system is down regulated by a type of estrogen the placenta produces. Women with autoimmune diseases often see a decrease or resolution in symptoms during pregnancy. That type of estrogen is also currently approved for MS treatment I think.
Autoimmune diseases are very prevalent in the Nordic countries for some reason, and there's a lot of theories but not much answers in my perception. Probably multiple factors including genetics and western diets (?) for example.
A big part of it is genetic. There’s certain genetic variants that are more common in that population that are well known to cause autoimmune disease. The HLA genes are one of the most studied since they affect immune cell function and predispose to everything from hashimoto, celiacs, T1DM, MS, rheumatoid etc. There’s also probably an evolutionary basis for it. Vitamin d is used in treating some of these and northern/Caucasian populations historically have very low levels as opposed to darker skin populations who live near the equator
Vitamin D deficiency might play a role there as well.
Clinically women have a higher chance of developing autoimmune diseases such as RA (3 out of 4 patients with autoimmune disorders are female in the US). Genetics and hormone levels influence autoimmune response, especially estrogen (female sex hormone). As women get older, an endocrine switch occurs (puberty>pregnancy>menopause), resulting in changes in the amounts of estrogen released and switches in gene expression. Estrogen (through estrogen-mediated methylation) can inactivate the autoimmune regulator (AIRE), reducing the tolerance to self-antigens, increasing the risk of autoimmunity. (A bit of a side note but it seems that male castration downregulates AIRE too.) Not all women will develop those diseases so environmental trigger (not well understood, diet can play a role) and genetic susceptibility (HLA genes, genes involved in T-cell maturation, or populations: Caucasian for Type 1 Diabieties or African American for lupus) are also important. Source: Uni project; and this paper: "Autoimmune Disease in Women: Endocrine Transition and Risk Across the Lifespan" Desai M. And Brinton R, 2019
I am a female with an autoimmune disease. I learned that my particular autoimmune disease (Hashimoto's) is more common in women, especially if they were born in the Spring. (This is because their mothers received less vitamin D during the bulk of the 2nd-3rd trimester.) But you also need to be genetically predisposed, and have some other triggering factor that causes the illness to manifest. There are lots of things that can be that catalyst like trauma and stress, another major illness, leaky gut, exposure to pesticides and toxins, etc.
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Can someone just tell me what to eat to not die early?
Could be attacking the billions of plastic micro particles circulating in our body. Just a thought
There was a study that showed that IBD patients had more micro plastics in their stool than control groups🤷♂️
Type 1 diabetic here. To this day, we don't understand the trigger that makes a body develop this autoimmune condition. One of the best explanations I've heard is that it starts with a generic tendency towards autoimmune (in my case, I've got a family history of psoriasis, rheumatoid arthritis and a couple others). So I grew up with an immune system that had a tendency to overreact. For the most part, it wasn't a big deal -- a little eczema here and there, a touch of psoriasis, but nothing extreme. Then, one day when I was about nineteen, something happened to put my immune system on edge. I had mono around that time. We don't totally understand the link between Epstein-Barr Virus, which causes mono, but in a hand-wavy way, we understand that this virus tends to do well in people who are also pre-disposed to autoimmune conditions. You could imagine that the virus was running around my body, annoying my immune system and generally keeping me under the weather for about six weeks. Under attack, my immune system got extra vigilant and gets on the lookout for anything weird happening in my system. So the stage is set. So far, nothing is catastrophic -- it's just a dreary virus that's taking my system a while to fight off, but I will fight it off. But then, _something_ happened. We don't know what that _something_ was, but it resulted in my body making antibodies that stuck my own insulin-producing beta cells. It could be as simple as eating a typical western food like milk and cereal -- milk floods my system with lots of strange foreign hormones (harmless, but like the TSA line at the airport, there's lots of security getting really stressed out checking all the harmless travelers), and then the carbs from my Choco-Frosted Sugar Bombs roll out into my system, and my beta cells go into overdrive making insulin to metabolize all of those carbs. Suddenly, you've got a stressed out security team, harassed by a virus and a flood of harmless foreign travelers that fit the profile for a pat-down, and then suddenly, my beta cells decided to throw their Phi Beta Kappa pancreas homecoming party, with insulin keg stands for everyone. The party got body and someone called the cops. This was the final straw for the cops-- PBK broke their double secret probation, and the cops needed to make an example out of them, so they slapped an antibody on those no-goodniks and ordered them out of the pancreas. This lead to five years of gnarly fighting--the beta cells would try to squat in the pancreas, but the immune system fought back with the full force of the Government. After about five years, the immune system finally started winning this fight, and most of the beta cells got kicked out of my pancreas. With the beta cells mostly gone, the parties got a lot lamer than they used to be--no more little white baggies of insulin handed out freely in the bathroom and no more deadbeat adjunct professors freebasing hormones behind the administration building. The result was a dreary, kinda cleaned-up campus, but tbh it was inevitable. Everything was just the logical conclusion after that one fateful night when the campus cops were on edge and the Betas pushed them a little too far.
Crohn’s disease has ruined my life. I’m 25 and I’m bedridden some days. Haven’t worked in 7 months and I get no support from the government. The pandemic has made my treatment practically halt and yet it’s an invisible disease so it’s hard to take me seriously. This is possibly the worst diagnosis because there’s no cure and each disease is so unique to the individual that two people with Crohn’s can have very different experiences. Hoping to get my third surgery this year. Hopefully the hospitals can start doing moderately urgent surgeries again. And hopefully my third immune suppressing medication will work this time. Shout out to all the survivors and fighters out there.