8 ms·

I was diagnosed with lupus a few years ago. My mom also had it and passed away after 10 years due to complications. My initial symptoms were severe joint pains,

I was diagnosed with lupus a few years ago. My mom also had it and passed away after 10 years due to complications. My initial symptoms were severe joint pains, which made daily activities difficult. This happened during the COVID lockdown, which helped me maintain my job. I did a lot of research and tried various treatments. Functional medicines and expensive vitamins didn’t help. I read about long-term fasting and tried different routines at home. I did several 1-day, 3-day, and 7-day fasts. During the 7-day fasts, my pain disappeared, but it returned once I resumed eating. This led me to believe that food was causing inflammation. Previously, I ate a lot of lean meat and occasional red meat. I then cut down to eating meat once a week and ate mostly raw leafy vegetables the rest of the time. My pain would come back after eating meat and decrease over the week. I eventually stopped eating meat entirely and consumed a ton on greens, and within six weeks, I was pain-free. I also tried Benlysta for months, but it didn’t help much. Vegetables seemed to reduce my inflammation more effectively. I stopped taking Benlysta but continued regular blood tests. After a year, my doctor agreed I could stop the medication. I’ve been in remission for the last two years with no pain or inflammation. I hope this helps, though it’s just my personal experience.

wholinator2 2y ago
I have crohn's disease which is also autoimmune and directly related to ingesting certain things. I think a lot of autoimmunity has to do with intestinal bacteria and their relationship to our innate immune system. And to a lesser extent it seems that almost every aspect of life is effected by what we eat, how we feel, how we act, how we grow and die. Maybe in 100 years we'll have fecal tests and bacteria pills to catch and prevent a paradigm shifting amount of ailments. I know I've tried tons of different diets and exclusions and things. I've got a pretty good list in my head of what i can and can't eat but it seems to change q bit every couple years. I used to not tolerate bread but eat sugar and it seems to have switched some time in the last decade. Anyways, i wish you luck with your journey and I'm glad you've found something that works for you
- aroopchandra 2y ago
  I got fecal tests and used expensive supplements and vitamins as recommended by a functional doctor, but they didn't help. I looked into how immune suppression medicines like Benlysta work and tried to mimic their effects naturally to get relief and hopefully stop using medicine. I think food can help manage many side effects of immune-related diseases, even if it can't cure them.
  - lhoff 2y ago
    You might want to try the Wim Hof Method. I don't believe in everthing Wim Hof attributes to his method but when it comes to immune response, there is scientific evidence that it does indeed result in an increase of IL-10, which is anti inflammatory. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4034215/ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4034215/
- nanomonkey 2y ago
  Quite a few of my friend's that were diagnosed with chron's disease found out that the main culprit seemed to be flour and other foodstuff that had been treated with glyphosate (Roundup). After switching to sourdough bread made from organic flours, and similar choices for masa harina (nixtamilated corn) their issues went away. This was after years of not eating anything with fiber, gluten, or nightshades. Their theory was that the herbicides would kill off their gut's natural biome and cause an inability process carbohydrates, fiber and maintain a intestinal mucus layer. YMMV...but just passing along what has worked for a few of my friends.
  - skrebbel 2y ago
    > after years of not eating anything with fiber, You mean they avoided vegetables entirely?
    - blix 2y ago
      My doctor told me after an intestinal surgery that I would never be able to eat vegetables again.
      - deleted 2y ago
        [deleted]
    - nanomonkey 2y ago
      Yes, there is a whole subsection of the internet that seems to think that vegetables are a net negative. They site doctors that suggest that fiber causes irritation in individuals with compromised intestines (leaky gut syndrome, etc.). It's exhausting having conversations with them as a vegetarian as they seem to think the only healthy way to eat is bone broth, butter, mct oil, and meat.
      - woleium 2y ago
        it’s probably _a_ way. The Saami live like this, with some berries for vit c. I wouldn’t want to do it though!
COGlory 2y ago
I'm curious if you've looked into N-Glycolylneuraminic acid and whether that could be the issue? Does chicken cause an issue for you? I'm sorry to hear about your Lupus diagnosis, and glad it's in remission. My doctor wanted to diagnose me with Lupus due to the facial rash and arthritis/joint pain, but I came back negative in all the bloodwork, which I think means about 98% sure don't have it. I found that I can treat the joint pain effectively with SSRIs (Fluoxetine, 20 mg is enough to wipe it out after a few weeks). My mother has MCAS and my sister and aunt have UC, so I feel like I'm tripping through a minefield trying to navigate whatever autoimmune issue this is....and I have a PhD in biochemistry.
- aroopchandra 2y ago
  I haven't looked into N-Glycolylneuraminic acid specifically. For me, all types of meats, including eggs, chicken, and lamb, increased my inflammation levels. From what I understand, correctly diagnosing immune diseases can be quite challenging. My doctor once said it’s more of an art than a science. Because my mother had lupus it was easy in my case. While I’m not against medications, they often come with side effects. For example, immunosuppressants are necessary for high inflammation but can increase the risk of cancer. Even SSRIs have side effects. When I had pain, I tried both medications and dietary changes, using an engineering mindset to isolate variables. Although I listened to my doctor, I also took matters into my own hands and did my research. My doctor initially doubted that changing my diet would help but did recommend the Mediterranean diet. He still doesn’t believe that food helped since there’s no clinical research backing it, and it’s not something commonly taught in medical schools. The best part about experimenting with food is that it's easy and inexpensive to test on oneself. In my case, I was fortunate that my joint pains allowed me to observe the effects of my dietary changes within a week or less. Initially, I expected results in a day or two, but I soon realized that I needed to experiment for at least a few weeks to see the full effects. These days, I consume small quantities of eggs every few weeks and haven't noticed any significant increase in inflammation.
- tremon 2y ago
  I came back negative in all the bloodwork One of my friends has APLS (antiphospholipid antibody syndrome), which can also occur as a secondary symptom of Lupus. All of her blood tests always come back negative due to the way APLS affects coagulation -- unless the bloodwork is cultured for at least two days. So if you have reason to suspect the test results may be incorrect, ask them to re-do the bloodwork as a long-term culture rather than the normal fast screening.
maayank 2y ago
What do you eat for protein in the current diet? What was your experience with fish?
- aroopchandra 2y ago
  I eat a lot of legumes such as lentils, chickpeas, black beans, and peas. I also include tofu made from soy, and nuts like almonds, peanuts, as well as seeds like chia, flaxseeds, and hemp. I use plant-based protein powders too specifically (https://lovecomplement.com/products/complement-organic-vegan-plant-based-protein-unflavored https://lovecomplement.com/products/complement-organic-vegan...) when I drink green smoothies (3 to 4 meals a week). Green leafy vegetables also has a lot protein (Kale, Broccoli and Brussels). I use supplements for B12 which is missing from vegetable foods. I used to eat fish but when I stopped all animal products I gave up fish as well. I guess if I have fish once in a while it won't hurt me but I have a tendency to overdo it. The main thing for me was to reduce the inflammation when I had the imbalance. This meant stopping everything I thought might cause inflammation until it went away. My diet was also free of all salts, sugars and oils for few months though I do use them now.
  - bumby 2y ago
    >I use supplements for B12 which is missing from vegetable foods. Just in case you're looking for an inexpensive vegan whole food source, seaweed sheets (like those used in sushi) have a relatively high amount of B12. I took a look at the brand in my pantry and it has 60% RDA per sheet.
    - aroopchandra 2y ago
      Thats a good idea. I will for sure add it to my snacks as I actually like seaweed
    - throwaway2037 2y ago
      Wiki disagrees about B12 in nori: > A 2014 study reported that dried purple laver ("nori") contains vitamin B12 in sufficient quantities to meet the RDA requirement (Vitamin B12 content: 77.6 μg /100 g dry weight).[19] By contrast, however, a 2017 review concluded that vitamin B12 may be destroyed during metabolism or is converted into inactive B12 analogs during drying and storage.[20] The Academy of Nutrition and Dietetics stated in 2016 that nori is not an adequate source of vitamin B12 for humans.[21] Ref: https://en.wikipedia.org/wiki/Nori#Nutrition https://en.wikipedia.org/wiki/Nori#Nutrition
xdrone 2y ago
In the vegan community there is lost of discussion of animal products causing auto immune issues. A compromised gut lining will let intact animal proteins into the body. The immune sees the animal foreigners but also attacks our body; us being animals too. Type 1 diabetes, aka childhood diabetes, is thought to be from casein in A1 milk; where the immune system attacks the beta cells of the pancreas. Seems plausible to me; rates of dairy consumption seem to correlate with type 1. (see Finland).
- valgor 2y ago
  Funny enough, I mentioned not eating meat on another hackernews thread today and someone told me I'm going to get an autoimmune disease.
  - nativeit 2y ago
    This is a classic example, frequently paired with a bunch of pseudoscience and smart sounding nonsense. Even if it weren’t personally offensive to me as an MS patient (diagnosed in 2001, when I in my late teens, and not for nothing—a soccer player and vegetarian in otherwise very good physical shape) this kind of speculative alternative health stuff muddies the water so that when looking for legitimate, bonafide information for autoimmune disorders and treatments, one has to sift through vast torrents of frequently difficult to distinguish bullshit. They go out of their way to appear legit, spend tons of money to push dis-/misinformation, and/or poison the well of mainstream science and research. I’m not suggesting that’s what’s happening in all of these comments, but I’ve seen a lot already that absolutely is. It’s really disappointing to see, but I’ve learned HN comments are great…until the topic of discussion departs from the usual tech-specific ideas, then it’s Dunning, Kruger, et al.
- aroopchandra 2y ago
  I also read this in multiple places and trusted it. At least that's how I internalized my condition when I started the experiment.
- nativeit 2y ago
  So this is where the people come from who responded to my MS diagnosis with diet plans…I can tell you, despite their clearly good intentions, it was really annoying. Same kind of thing with faith healers. Come at me after you’ve got some reliable data from repeated double-blind controlled trials. Until then, I’m really not interested what kind of kale smoothies might help nerve pain and paralysis. They also used really unhelpful citations, like “see: Finland”. Feel free to continue this discussion here and within nutrition enthusiast groups, but please consider the perspectives of someone who’s struggling with a fresh, serious diagnosis before telling them all the hidden secrets of raw diets. Part of getting diagnosed is, at least for me, doing a shit ton of research to know better what my body is doing to me. Part of that research is sifting through all the scams and B.S. NaturalNews[TM] crap that, relevant or not, reads just like this thread. So when people tried to respond to the news of my illness with recipes it felt really patronizing and minimized my experience for the purposes of highlighting their hobby. Just for an outside perspective. If any of this is backed with reliable data, I’m happy to read it.
deleted 2y ago
[deleted]
loceng 2y ago
Did you ever do an Igg food sensitivity test-food panel to check if there were any inflammatory Igg markers from specific foods you were eating? E.g. they can test for 200+ most common foods, which you would of had to have eaten within the last 2-3 months for the Igg markers to still be present - otherwise they breakdown and obviously won't be detected. To note, you need to eat high fat meat in order to properly digest the meat. It's possible to also be allergic to certain types of meat, e.g. there's a protein in duck that bothers me. Another factor to seriously consider is if consuming high quality organic meat vs. whatever else. Also, meat requires a lot of energy to break down due to its [nutrient-calorie] density - of course you get back much more energy than it consumes, but it is an intensive process, so if there are other foods you're eating that are causing irritation then digesting meat could be problematic - and so then while of course reducing or stopping eating meat will then stop symptoms, it's possible that if removing the other foods that may be causing problems would then allow the meat consumption without causing any problems. There's really been no properly done research on diet.
carlmr 2y ago
If you look at "Goodbye Lupus" by Brooke Goldner it doesn't seem to only be your personal experience.
kukasmog 2y ago
what is your ethnicity/background? what is the traditional diet of your peoples?
blackoil 2y ago
Unfortunately, role of food in human health isn't studied properly because of won't make anyone money. Traditional Indian medicine and grandma's wisdom have a long list of foods to eat or not depending on disease/pregnancy/breast feeding etc. But there isn't enough scientific research on it. Unfortunately the Internet has made it worse now everybody is peddling something or other.

wholinator2 2y ago

I have crohn's disease which is also autoimmune and directly related to ingesting certain things. I think a lot of autoimmunity has to do with intestinal bacteria and their relationship to our innate immune system. And to a lesser extent it seems that almost every aspect of life is effected by what we eat, how we feel, how we act, how we grow and die. Maybe in 100 years we'll have fecal tests and bacteria pills to catch and prevent a paradigm shifting amount of ailments. I know I've tried tons of different diets and exclusions and things. I've got a pretty good list in my head of what i can and can't eat but it seems to change q bit every couple years. I used to not tolerate bread but eat sugar and it seems to have switched some time in the last decade. Anyways, i wish you luck with your journey and I'm glad you've found something that works for you

aroopchandra 2y ago
I got fecal tests and used expensive supplements and vitamins as recommended by a functional doctor, but they didn't help. I looked into how immune suppression medicines like Benlysta work and tried to mimic their effects naturally to get relief and hopefully stop using medicine. I think food can help manage many side effects of immune-related diseases, even if it can't cure them.
- lhoff 2y ago
  You might want to try the Wim Hof Method. I don't believe in everthing Wim Hof attributes to his method but when it comes to immune response, there is scientific evidence that it does indeed result in an increase of IL-10, which is anti inflammatory. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4034215/ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4034215/
nanomonkey 2y ago
Quite a few of my friend's that were diagnosed with chron's disease found out that the main culprit seemed to be flour and other foodstuff that had been treated with glyphosate (Roundup). After switching to sourdough bread made from organic flours, and similar choices for masa harina (nixtamilated corn) their issues went away. This was after years of not eating anything with fiber, gluten, or nightshades. Their theory was that the herbicides would kill off their gut's natural biome and cause an inability process carbohydrates, fiber and maintain a intestinal mucus layer. YMMV...but just passing along what has worked for a few of my friends.
- skrebbel 2y ago
  > after years of not eating anything with fiber, You mean they avoided vegetables entirely?
  - blix 2y ago
    My doctor told me after an intestinal surgery that I would never be able to eat vegetables again.
    - deleted 2y ago
      [deleted]
  - nanomonkey 2y ago
    Yes, there is a whole subsection of the internet that seems to think that vegetables are a net negative. They site doctors that suggest that fiber causes irritation in individuals with compromised intestines (leaky gut syndrome, etc.). It's exhausting having conversations with them as a vegetarian as they seem to think the only healthy way to eat is bone broth, butter, mct oil, and meat.
    - woleium 2y ago
      it’s probably _a_ way. The Saami live like this, with some berries for vit c. I wouldn’t want to do it though!

COGlory 2y ago

I'm curious if you've looked into N-Glycolylneuraminic acid and whether that could be the issue? Does chicken cause an issue for you? I'm sorry to hear about your Lupus diagnosis, and glad it's in remission. My doctor wanted to diagnose me with Lupus due to the facial rash and arthritis/joint pain, but I came back negative in all the bloodwork, which I think means about 98% sure don't have it. I found that I can treat the joint pain effectively with SSRIs (Fluoxetine, 20 mg is enough to wipe it out after a few weeks). My mother has MCAS and my sister and aunt have UC, so I feel like I'm tripping through a minefield trying to navigate whatever autoimmune issue this is....and I have a PhD in biochemistry.

aroopchandra 2y ago
I haven't looked into N-Glycolylneuraminic acid specifically. For me, all types of meats, including eggs, chicken, and lamb, increased my inflammation levels. From what I understand, correctly diagnosing immune diseases can be quite challenging. My doctor once said it’s more of an art than a science. Because my mother had lupus it was easy in my case. While I’m not against medications, they often come with side effects. For example, immunosuppressants are necessary for high inflammation but can increase the risk of cancer. Even SSRIs have side effects. When I had pain, I tried both medications and dietary changes, using an engineering mindset to isolate variables. Although I listened to my doctor, I also took matters into my own hands and did my research. My doctor initially doubted that changing my diet would help but did recommend the Mediterranean diet. He still doesn’t believe that food helped since there’s no clinical research backing it, and it’s not something commonly taught in medical schools. The best part about experimenting with food is that it's easy and inexpensive to test on oneself. In my case, I was fortunate that my joint pains allowed me to observe the effects of my dietary changes within a week or less. Initially, I expected results in a day or two, but I soon realized that I needed to experiment for at least a few weeks to see the full effects. These days, I consume small quantities of eggs every few weeks and haven't noticed any significant increase in inflammation.
tremon 2y ago
I came back negative in all the bloodwork One of my friends has APLS (antiphospholipid antibody syndrome), which can also occur as a secondary symptom of Lupus. All of her blood tests always come back negative due to the way APLS affects coagulation -- unless the bloodwork is cultured for at least two days. So if you have reason to suspect the test results may be incorrect, ask them to re-do the bloodwork as a long-term culture rather than the normal fast screening.

maayank 2y ago

What do you eat for protein in the current diet? What was your experience with fish?

aroopchandra 2y ago
I eat a lot of legumes such as lentils, chickpeas, black beans, and peas. I also include tofu made from soy, and nuts like almonds, peanuts, as well as seeds like chia, flaxseeds, and hemp. I use plant-based protein powders too specifically (https://lovecomplement.com/products/complement-organic-vegan-plant-based-protein-unflavored https://lovecomplement.com/products/complement-organic-vegan...) when I drink green smoothies (3 to 4 meals a week). Green leafy vegetables also has a lot protein (Kale, Broccoli and Brussels). I use supplements for B12 which is missing from vegetable foods. I used to eat fish but when I stopped all animal products I gave up fish as well. I guess if I have fish once in a while it won't hurt me but I have a tendency to overdo it. The main thing for me was to reduce the inflammation when I had the imbalance. This meant stopping everything I thought might cause inflammation until it went away. My diet was also free of all salts, sugars and oils for few months though I do use them now.
- bumby 2y ago
  >I use supplements for B12 which is missing from vegetable foods. Just in case you're looking for an inexpensive vegan whole food source, seaweed sheets (like those used in sushi) have a relatively high amount of B12. I took a look at the brand in my pantry and it has 60% RDA per sheet.
  - aroopchandra 2y ago
    Thats a good idea. I will for sure add it to my snacks as I actually like seaweed
  - throwaway2037 2y ago
    Wiki disagrees about B12 in nori: > A 2014 study reported that dried purple laver ("nori") contains vitamin B12 in sufficient quantities to meet the RDA requirement (Vitamin B12 content: 77.6 μg /100 g dry weight).[19] By contrast, however, a 2017 review concluded that vitamin B12 may be destroyed during metabolism or is converted into inactive B12 analogs during drying and storage.[20] The Academy of Nutrition and Dietetics stated in 2016 that nori is not an adequate source of vitamin B12 for humans.[21] Ref: https://en.wikipedia.org/wiki/Nori#Nutrition https://en.wikipedia.org/wiki/Nori#Nutrition

xdrone 2y ago

In the vegan community there is lost of discussion of animal products causing auto immune issues. A compromised gut lining will let intact animal proteins into the body. The immune sees the animal foreigners but also attacks our body; us being animals too. Type 1 diabetes, aka childhood diabetes, is thought to be from casein in A1 milk; where the immune system attacks the beta cells of the pancreas. Seems plausible to me; rates of dairy consumption seem to correlate with type 1. (see Finland).

valgor 2y ago
Funny enough, I mentioned not eating meat on another hackernews thread today and someone told me I'm going to get an autoimmune disease.
- nativeit 2y ago
  This is a classic example, frequently paired with a bunch of pseudoscience and smart sounding nonsense. Even if it weren’t personally offensive to me as an MS patient (diagnosed in 2001, when I in my late teens, and not for nothing—a soccer player and vegetarian in otherwise very good physical shape) this kind of speculative alternative health stuff muddies the water so that when looking for legitimate, bonafide information for autoimmune disorders and treatments, one has to sift through vast torrents of frequently difficult to distinguish bullshit. They go out of their way to appear legit, spend tons of money to push dis-/misinformation, and/or poison the well of mainstream science and research. I’m not suggesting that’s what’s happening in all of these comments, but I’ve seen a lot already that absolutely is. It’s really disappointing to see, but I’ve learned HN comments are great…until the topic of discussion departs from the usual tech-specific ideas, then it’s Dunning, Kruger, et al.
aroopchandra 2y ago
I also read this in multiple places and trusted it. At least that's how I internalized my condition when I started the experiment.
nativeit 2y ago
So this is where the people come from who responded to my MS diagnosis with diet plans…I can tell you, despite their clearly good intentions, it was really annoying. Same kind of thing with faith healers. Come at me after you’ve got some reliable data from repeated double-blind controlled trials. Until then, I’m really not interested what kind of kale smoothies might help nerve pain and paralysis. They also used really unhelpful citations, like “see: Finland”. Feel free to continue this discussion here and within nutrition enthusiast groups, but please consider the perspectives of someone who’s struggling with a fresh, serious diagnosis before telling them all the hidden secrets of raw diets. Part of getting diagnosed is, at least for me, doing a shit ton of research to know better what my body is doing to me. Part of that research is sifting through all the scams and B.S. NaturalNews[TM] crap that, relevant or not, reads just like this thread. So when people tried to respond to the news of my illness with recipes it felt really patronizing and minimized my experience for the purposes of highlighting their hobby. Just for an outside perspective. If any of this is backed with reliable data, I’m happy to read it.

deleted 2y ago

[deleted]

loceng 2y ago

Did you ever do an Igg food sensitivity test-food panel to check if there were any inflammatory Igg markers from specific foods you were eating? E.g. they can test for 200+ most common foods, which you would of had to have eaten within the last 2-3 months for the Igg markers to still be present - otherwise they breakdown and obviously won't be detected. To note, you need to eat high fat meat in order to properly digest the meat. It's possible to also be allergic to certain types of meat, e.g. there's a protein in duck that bothers me. Another factor to seriously consider is if consuming high quality organic meat vs. whatever else. Also, meat requires a lot of energy to break down due to its [nutrient-calorie] density - of course you get back much more energy than it consumes, but it is an intensive process, so if there are other foods you're eating that are causing irritation then digesting meat could be problematic - and so then while of course reducing or stopping eating meat will then stop symptoms, it's possible that if removing the other foods that may be causing problems would then allow the meat consumption without causing any problems. There's really been no properly done research on diet.

carlmr 2y ago

If you look at "Goodbye Lupus" by Brooke Goldner it doesn't seem to only be your personal experience.

kukasmog 2y ago

what is your ethnicity/background? what is the traditional diet of your peoples?

blackoil 2y ago

Unfortunately, role of food in human health isn't studied properly because of won't make anyone money. Traditional Indian medicine and grandma's wisdom have a long list of foods to eat or not depending on disease/pregnancy/breast feeding etc. But there isn't enough scientific research on it. Unfortunately the Internet has made it worse now everybody is peddling something or other.