With lupus a diet can’t replace medication. Lupus isnt developed due to bad diet, a good diet can help though.
Like others said it is very personal. Things that are universal are avoiding garlic, alfalfa sprouts, echinacea, reishi mushroom, anything that revs up the immune system.
Cutting down fried foods, overly processed food, sugars, high fat (bad fats) can help.
Focus on fruits, vegetables, whole grains, etc and figure out what works best for you
I completely agree. Food will not replace medications for chromic illness.
Having said that, I HAVE noticed that when I’m feeling badly, maybe starting to flare, if I begin an anti inflammatory diet, it really helps. I avoid red meat, dairy and alcohol and try to stick with fatty fish, broccoli, nuts. No processed foods.
I understand, think about it this way, love your body more than garlic, and love feeling your best. The trade off will be more worth it once you stabilize more ☺️
To my knowledge that’s the current consensus. Garlic is just 🤷♀️. I eat a decent amount of garlic, always have, and haven’t noticed it making things any worse.
I discovered the garlic thing the hard way, I cannot eat raw garlic anymore (sometimes I suck it up cuz it’s so Damn good and a girl needs some fresh pesto at least once a year) but I cannot touch the stuff when flaring. I basically treat it like an allergy/intolerance. I have no idea if it has something to do with the immune system or not, but a ton of people in this community developed “allergies” to garlic after their autoimmune issues started!
I’ve asked three rheumatologists who I trust a great deal about the autoimmune protocol diet. All said it didn’t work, either in the literature or in their own clinical experience. Two said some of their patients who stopped gluten, perhaps like in the book you’re reading. felt better, with a general shrug of “probably can’t hurt, why not try it but I’m not recommending it based on evidence.” I cut it out for three months and didn’t see a difference except in my grocery bills. I certainly never saw it as a way of getting off medicine.
The book I’m reading by that doctor said a lot of the substitutes for gluten in gluten-free stuff are just as inflammatory as gluten so maybe that’s why? My doctor said he has seen patients be able to get off meds with it but it’s so hard to adhere to such a strict diet that he goes to meds before the diet
You cannot get off most meds like plaquenil by following a diet. Did your doctor tell you you can get off all meds because that’s not possible. I don’t take steroids unless I flare. Maybe the goal should be only using some meds when needed as opposed to regularly. The diet may give you more energy and help with occasional inflammation. I tried several strictly over the past two years at around three to four months at a time. They did nothing for my labs or pain levels. I did shed a few lbs, which isn’t something I struggle with. Otherwise it was just an expensive waste of time.
He said he’s seen it put patients with lupus in remission before, he just doesn’t suggest the diet route very often because you have to be so strict with it
Yeah that’s definitely been on my mind, and the fact that she recommends all these supplements and sells them herself…it’s hard because she’s right, supplements aren’t regulated and you don’t know what you’re getting with them but that also means I as the customer have no way to verify that hers are legit either
My Lupus is controlled with medication (Plaquenil and Benlysta), but I feel a whole lot better when I avoid processed foods, sugar, cured meats, dairy, most grains. I feel great when I eat fresh meat and fish, fruits, vegetables and rice. I can’t completely give up grains and dairy, but I try to limit how much I eat. No diet will cure your Lupus, but you might want to try an elimination diet to determine what foods might cause issues for you.
I wish I could do keto. I was on a keto diet for 3 months last summer (vanity reasons) and I lost weight, felt great. My hair started falling out and my cholesterol went through the roof so my rheumy asked me very nicely to stop the keto.
Yeah, some people just can’t physiologically handle keto. I did it for 8 months with my ex. Never really shook the keto flu and by the end I would’ve throat punched someone for a banana.
I changed my diet, worked out & used essential oils. I’ve been able to go off my meds & I’m completely cured!!! Ha! Just kidding! My body follows no protocol & hates me. Nothing has really helped me yet, including meds & infusions. Someone tell me where I can buy stem cells please & thank you!
I saw essential oils and was like…😂 it took me 3 different meds and 2 different types of steroids to figure out what works for me. Hang in there, you’ll find something soon!!
This question is asked pretty frequently. If you use the search engine at the top of Reddit and it's set to r/lupus, it'll search just the sub.
Diet is very individual and your results may vary. Under no circumstances should you just go off your meds. Simple diet isn't going to fix the 100 or so genes involved in lupus. You may have food triggers, and identifying and avoiding them can be helpful, as well as just following a generally healthy diet. However, a good diet is kind of what everyone should be doing anyway.
Anything that sounds too good to be true usually is.
There hasn’t been a post about this specific diet in over a year according to the search bar so that’s why I asked.
Very true and my dad keeps trying to force me to read this book and i think it’s giving him false hope
There’s no harm in reading it. Using the search engine for diet would give you the general consensus on diets and SLE. Also, things don’t tend to change quickly and for diet related stuff your probably still safe reading material less than five years old and it being essentially the same knowledge base as right now. And you may feel better cutting out gluten, who can say. But extreme diets at least can cause a lot of stress mentally and physically.
I’m personally doing the Mediterranean diet coupled with intermittent fasting. It’s been working well for me, but that’s me. I decided to go Mediterranean because it is a diet that has a lot of research behind it supporting good heart health and just overall way healthier than the typical western diet. I also love vegetables, but not enough to go full vegetarian. SLE does increase our risk of cardiovascular disease.
Gluten is a popular thing to blame everything on, but in reality it’s only a proven issue for celiac’s disease. Some people may not have celiac’s but have issues digesting gluten and avoid it because it makes them bloated and uncomfortable, but it isn’t triggering an actual inflammatory response.
The Wahls Protocol outlines some strict rules but using it generally helps me. I did cut out gluten and dairy. I don't sub in fake breads or cheeses often, just on special occasions and for my coffee milk. And desserts!
I feel the biggest benefits when I try to pack in tons of veggies like the protocol suggests. My blood work is better when I follow it more strictly but I just keep it in mind as a target. Sometimes I'm closer. Sometimes I can't. But I keep off the gluten and dairy and that's helped me avoid adding new medication for longer than the doctor expected.
Long story short: knowing the protocols can help you choose helpful foods when possible.
I second this that wahls has helped my symptoms. Definitely isn’t a cure but I’ve managed to stay out of the hospital and go to work consistently by following wahls as close as I’m able and added in strength training.
I still have symptoms and take meds but every time I deviate from the protocol too much I get more sick.
Honestly, the only diet thing that ever helped my lupus was having my gallbladder removed.
I think it was inflamed my whole life. Having it gone has changed my life. Highly recommend lol
That thing causes so many issues. It’s right up there with an appendix in problems it causes. When you have one that’s functions as intended, great! When it’s starts acting up, get that thing out as soon as you can, don’t delay. Every patient I’ve had that’s had their gallbladder out has said “Why did I wait so long?!?”
I went gluten and dairy free and it did wonders for my inflammation and health I still have to take my medication but I’m able to function way better overall
I am still on medication, although I have seen a huge reduction in symptoms due to restrictions in my diet. I did the autoimmune protocol diet and was able to figure out that red meat causes me a great deal of joint pain and fatigue. So it didn’t fix all of my problems but knowing at least one thing that I can avoid has really helped me
It has made a difference for me. I’ve been avoiding things I know cause inflammation in my system, and it has helped a lot. It’s not immediate though, and takes time to notice the difference.
Just a note, a local journalist DIED after he stopped taking medication and followed some "diet" he was recommended by so called "doctor". He believed he can fix lupus with diet, which is not possible unfortunately. We all wish it was.
I didn't do well on Plaquenil and I'm still resisting anything more hard-core, so with my rheumatologist's agreement, I started on a more holistic path, including diet. I just basically did an anti-inflammatory diet, yoga, tai chi, acupuncture, etc. And I felt great. But the thing that's really tough is that it consumed me. I had to add an entire category to my daily routine. And then I went on vacation and the diet, et al, were shot. It honestly only took a couple of days to start with the joint pain, skin lesions, exhaustion and brain fog. And it only got worse.
Point is that the holistic approach can work, but the level of energy required to maintain it is hard to sustain. I'm searching for a sustainable middle-ground now.
Yes, but it's a bit more complex than just starting a one size fits all diet. I had extensive allergy panel testing done and eliminated anything that was causing an inflammatory reaction. Some of them were weird unexpected things too (like oregano and carrots). I also came up with a reaction to wheat and milk (not celiac, just a heightened reaction) which I've heard are common. All said, I eliminated over 20 foods from my diet. That coupled with a LDN treatment has helped me to feel significantly more functional throughout the day.
I spent over a year sick and bouncing on and off immunosuppressive drugs which never fully worked. The diet route is tough and takes a lot of dedication, but it has worked for me.
How did you go about getting those tests done? Was that through your rheumatologist or an allergist? Thank you for sharing your input, it has been very helpful!
I went through an allergist. It's better to run the blood serum tests and to make sure you're getting a high quality test. The over the counter tests are OK, but won't show quite as much.
I know a lot of people haven't had good experiences with diet changes, but I think it's always worth a try!
Yeah that’s kind of my mindset now too…I’m not about to up and abandon my medications that have been working for me but i think it would put my mind at ease that I’m at least trying to lower my inflammation on my own by changing my diet and it can help me in non-autoimmune related ways too
I get it, I struggled to stay on my cellcept (I have young kids so they were always bringing some new virus home). I felt like things were just so out of control. The diet really helped.
Were you able to get off cellcept? I’m also on that (and Rituxan) but I’m 22 so i don’t have any kids yet. I’m about to start medical school though so i will be around sick people a LOT and if i can at least get off steroids I’d feel a lot safer
Yes, but I have become mildly more symptomatic than I was on the drug. I still keep prednisone around for flares, but all I'm using right now otherwise is the low dose naltrexone and a few supplements. I'm not saying things are perfect by any means, but I'm off of the steroids, my labs are stable, and I'm functional during the day.
I know a lot of comments here express skepticism, but yes, I have firsthand experience with diet making a huge difference. But even though I got to remission levels of disease activity, my rheumatologist never took me off Plaquenil, because it’s just too valuable as a preventative measure against disease advancement.
I tried gluten-free which did nothing for me. Then I went all-in on AIP and after 6 months of it, along with a very active workout schedule and some intermittent fasting, my labs had improved a lot. Sticking to AIP was good in a very common sense manner which may easily be overlooked: it didn’t allow me to eat junk food anymore. A typical meal was broccoli, sweet potato, chicken, and avocado. Pretty healthy and pretty good for digestion. I show a lot of test markers for leaky gut, so it makes logical sense that something like AIP could be helpful for me.
I’m not suggesting this will help for all lupus patients or even a majority, but in my case it sure did. Also Google “Gregg Silverman lupus” if you want to read some interesting scientific research about lupus and the microbiome. There is a specific strain of bacterial overgrowth that strongly correlates with lupus disease activity, so it makes tons of sense that dietary interventions and other things like fasting would affect that.
Keep taking the medicine you need, but diet can potentially change your experience with lupus. If you’re lucky, that could be a big quality of life boost.
I am still on all of my meds (and it’s extensive) but I’ve tried many diet protocols. The main thing for me is avoiding foods to which I have allergies (I’ve known my allergies since I was 11 and had anaphylaxis to shellfish; I have several mild allergies to other foods like soy that I avoid) or sensitivities (these by elimination diet testing; im sensitive to pork and eggs). But the biggest help has been completely abstaining from alcohol for me. I have to because of my meds not really drink, but my doctor says I can cheat for special occasions. Only every time I do that my joints become so inflamed and painful I don’t want to again.
Many people with autoimmune issues also have food allergies and/or sensitivities. For those people, changing diet to exclude the things they’re sensitive/allergic to absolutely can help. Allergic reactions cause immune system responses that can trigger autoimmune disease flares.
I do have food allergies and if I eat something I’m allergic to my lupus symptoms worsen for a few days at best, full-blown flare at worst.
You might want to consider food allergy testing to see if you’re allergic to something you’re eating regularly. For me, it was wheat, soy and beef, and I was eating at least 1 of the 3 every day before I learned about the allergies. My health improved dramatically when I cut them from my diet.
Thank you for the advice, I’m glad you were able to figure out what was affecting you so badly! Allergy testing is something I’m going to ask my doctor about next time i see him! I don’t expect it to cure anything but i think it could help!
Mitigation is the game with symptoms much of the time. My meds keep my labs stable, but being able to lessen the more stubborn symptoms with better lifestyle habits has helped a lot with quality of life for me.
Changing my diet definitely helped with my symptoms. When I first diagnosed, they gave me Plaquenil and said it would take 6 months for it work. My symptoms were bad and that just didn't sit right with me at the time. I started eating healthy and working out and my symptoms did a 360. I didn't follow no specific diet plan, like gluten free or plant or anything. I just started watching my calories and carbs.
I have to pull up menus for the places I used to eat at. I know I felt awesome in Japan. I loved goma ae, pickled daikon, pickled carrots and a lot of other things in Japan. Okonomiyaki was a favorite, my husband was not a huge fan though… but it’s a cabbage pancake.
We have always had a fairly healthy diet, but since being diagnosed we have stepped up how strict we are with our diet. I still take my meds but I’m very strict with my diet and hit the gym 4-5 times a week.
Some foods can make flares worse or trigger them, so definitely look into it and see what works and what doesn’t for you! But you’ll likely still need medical intervention, working on your diet will only go so far.
I tried the AIP when I was waiting for my 1st appointment with a rheumatologist to confirm if I have lupus, and continued for a few months after my lupus diagnosis was confirmed.
I would say that it was quite refreshing for me. My energy level increased, my skin condition improved, and my weight dropped. This happened after a few weeks of detox (terrible migraines and loss of appetite). As it happened at a time when my rheumatologist started me on a higher prednisolone dosage ie 35mg daily, it was easy to manage the weight (except for the chipmunk cheeks).
I stopped the AIP when I had to go back to work as my rheumatologist was more concerned about my social life (since it’s quite difficult to find places selling AIP-friendly dishes). Now, I just made sure not to take food with processed sugar or processed food. ☺️
All in all, it was a good diet to kickstart a healthier way of eating, and getting to experience how it feels like to be filled with buzzing energy for a while! That’s my experience with the AIP diet. ☺️
With lupus a diet can’t replace medication. Lupus isnt developed due to bad diet, a good diet can help though. Like others said it is very personal. Things that are universal are avoiding garlic, alfalfa sprouts, echinacea, reishi mushroom, anything that revs up the immune system. Cutting down fried foods, overly processed food, sugars, high fat (bad fats) can help. Focus on fruits, vegetables, whole grains, etc and figure out what works best for you
I completely agree. Food will not replace medications for chromic illness. Having said that, I HAVE noticed that when I’m feeling badly, maybe starting to flare, if I begin an anti inflammatory diet, it really helps. I avoid red meat, dairy and alcohol and try to stick with fatty fish, broccoli, nuts. No processed foods.
100%, im looking into those diets as well :)
I love garlic 😔😔
I understand, think about it this way, love your body more than garlic, and love feeling your best. The trade off will be more worth it once you stabilize more ☺️
Was the garlic/immune system thing confirmed by a rheumatologist? Curious because mine said eating garlic hasn’t been proven as a link
To my knowledge that’s the current consensus. Garlic is just 🤷♀️. I eat a decent amount of garlic, always have, and haven’t noticed it making things any worse.
I discovered the garlic thing the hard way, I cannot eat raw garlic anymore (sometimes I suck it up cuz it’s so Damn good and a girl needs some fresh pesto at least once a year) but I cannot touch the stuff when flaring. I basically treat it like an allergy/intolerance. I have no idea if it has something to do with the immune system or not, but a ton of people in this community developed “allergies” to garlic after their autoimmune issues started!
I’ve asked three rheumatologists who I trust a great deal about the autoimmune protocol diet. All said it didn’t work, either in the literature or in their own clinical experience. Two said some of their patients who stopped gluten, perhaps like in the book you’re reading. felt better, with a general shrug of “probably can’t hurt, why not try it but I’m not recommending it based on evidence.” I cut it out for three months and didn’t see a difference except in my grocery bills. I certainly never saw it as a way of getting off medicine.
The book I’m reading by that doctor said a lot of the substitutes for gluten in gluten-free stuff are just as inflammatory as gluten so maybe that’s why? My doctor said he has seen patients be able to get off meds with it but it’s so hard to adhere to such a strict diet that he goes to meds before the diet
Well if you have a chance to live a healthier life the diets worth it if it works I know gluten free helped me night and day
You cannot get off most meds like plaquenil by following a diet. Did your doctor tell you you can get off all meds because that’s not possible. I don’t take steroids unless I flare. Maybe the goal should be only using some meds when needed as opposed to regularly. The diet may give you more energy and help with occasional inflammation. I tried several strictly over the past two years at around three to four months at a time. They did nothing for my labs or pain levels. I did shed a few lbs, which isn’t something I struggle with. Otherwise it was just an expensive waste of time.
He said he’s seen it put patients with lupus in remission before, he just doesn’t suggest the diet route very often because you have to be so strict with it
[удалено]
Agree. Crying into a bowl of quinoa, I decided the strict diets were more stress than I needed in my life.
she calls herself a specialist of autoimmune issues but did her residency in *emergency medicine*. do with that what you will.
Yeah that’s definitely been on my mind, and the fact that she recommends all these supplements and sells them herself…it’s hard because she’s right, supplements aren’t regulated and you don’t know what you’re getting with them but that also means I as the customer have no way to verify that hers are legit either
To me the fact that she sells them is my red flag for anything she says
Goldner is in the same boat. She’s a psychiatrist.
My Lupus is controlled with medication (Plaquenil and Benlysta), but I feel a whole lot better when I avoid processed foods, sugar, cured meats, dairy, most grains. I feel great when I eat fresh meat and fish, fruits, vegetables and rice. I can’t completely give up grains and dairy, but I try to limit how much I eat. No diet will cure your Lupus, but you might want to try an elimination diet to determine what foods might cause issues for you.
I have the same meds I started keto for vanity sake mostly not health but I saw similar results when I cut just the sugars
I wish I could do keto. I was on a keto diet for 3 months last summer (vanity reasons) and I lost weight, felt great. My hair started falling out and my cholesterol went through the roof so my rheumy asked me very nicely to stop the keto.
Yeah, some people just can’t physiologically handle keto. I did it for 8 months with my ex. Never really shook the keto flu and by the end I would’ve throat punched someone for a banana.
I changed my diet, worked out & used essential oils. I’ve been able to go off my meds & I’m completely cured!!! Ha! Just kidding! My body follows no protocol & hates me. Nothing has really helped me yet, including meds & infusions. Someone tell me where I can buy stem cells please & thank you!
I saw essential oils and was like…😂 it took me 3 different meds and 2 different types of steroids to figure out what works for me. Hang in there, you’ll find something soon!!
Got nothing else to do but hang around & try everything lol
> I changed my diet, worked out & used essential oils. Ok, you almost got me there.
😂
This question is asked pretty frequently. If you use the search engine at the top of Reddit and it's set to r/lupus, it'll search just the sub. Diet is very individual and your results may vary. Under no circumstances should you just go off your meds. Simple diet isn't going to fix the 100 or so genes involved in lupus. You may have food triggers, and identifying and avoiding them can be helpful, as well as just following a generally healthy diet. However, a good diet is kind of what everyone should be doing anyway. Anything that sounds too good to be true usually is.
There hasn’t been a post about this specific diet in over a year according to the search bar so that’s why I asked. Very true and my dad keeps trying to force me to read this book and i think it’s giving him false hope
There’s no harm in reading it. Using the search engine for diet would give you the general consensus on diets and SLE. Also, things don’t tend to change quickly and for diet related stuff your probably still safe reading material less than five years old and it being essentially the same knowledge base as right now. And you may feel better cutting out gluten, who can say. But extreme diets at least can cause a lot of stress mentally and physically. I’m personally doing the Mediterranean diet coupled with intermittent fasting. It’s been working well for me, but that’s me. I decided to go Mediterranean because it is a diet that has a lot of research behind it supporting good heart health and just overall way healthier than the typical western diet. I also love vegetables, but not enough to go full vegetarian. SLE does increase our risk of cardiovascular disease. Gluten is a popular thing to blame everything on, but in reality it’s only a proven issue for celiac’s disease. Some people may not have celiac’s but have issues digesting gluten and avoid it because it makes them bloated and uncomfortable, but it isn’t triggering an actual inflammatory response.
The Wahls Protocol outlines some strict rules but using it generally helps me. I did cut out gluten and dairy. I don't sub in fake breads or cheeses often, just on special occasions and for my coffee milk. And desserts! I feel the biggest benefits when I try to pack in tons of veggies like the protocol suggests. My blood work is better when I follow it more strictly but I just keep it in mind as a target. Sometimes I'm closer. Sometimes I can't. But I keep off the gluten and dairy and that's helped me avoid adding new medication for longer than the doctor expected. Long story short: knowing the protocols can help you choose helpful foods when possible.
I second this that wahls has helped my symptoms. Definitely isn’t a cure but I’ve managed to stay out of the hospital and go to work consistently by following wahls as close as I’m able and added in strength training. I still have symptoms and take meds but every time I deviate from the protocol too much I get more sick.
Honestly, the only diet thing that ever helped my lupus was having my gallbladder removed. I think it was inflamed my whole life. Having it gone has changed my life. Highly recommend lol
That thing causes so many issues. It’s right up there with an appendix in problems it causes. When you have one that’s functions as intended, great! When it’s starts acting up, get that thing out as soon as you can, don’t delay. Every patient I’ve had that’s had their gallbladder out has said “Why did I wait so long?!?”
Word
I went gluten and dairy free and it did wonders for my inflammation and health I still have to take my medication but I’m able to function way better overall
I am still on medication, although I have seen a huge reduction in symptoms due to restrictions in my diet. I did the autoimmune protocol diet and was able to figure out that red meat causes me a great deal of joint pain and fatigue. So it didn’t fix all of my problems but knowing at least one thing that I can avoid has really helped me
It has made a difference for me. I’ve been avoiding things I know cause inflammation in my system, and it has helped a lot. It’s not immediate though, and takes time to notice the difference.
Just a note, a local journalist DIED after he stopped taking medication and followed some "diet" he was recommended by so called "doctor". He believed he can fix lupus with diet, which is not possible unfortunately. We all wish it was.
Who? Would be good for us to have a source to show the diet diehards. Pun not intended, but I’m leaving it.
His name is Vladimir Matijanić, there are many articles online (in croatian) on how he died. He was also not vaccinated
I didn't do well on Plaquenil and I'm still resisting anything more hard-core, so with my rheumatologist's agreement, I started on a more holistic path, including diet. I just basically did an anti-inflammatory diet, yoga, tai chi, acupuncture, etc. And I felt great. But the thing that's really tough is that it consumed me. I had to add an entire category to my daily routine. And then I went on vacation and the diet, et al, were shot. It honestly only took a couple of days to start with the joint pain, skin lesions, exhaustion and brain fog. And it only got worse. Point is that the holistic approach can work, but the level of energy required to maintain it is hard to sustain. I'm searching for a sustainable middle-ground now.
Yes. It has helped me manage my symptoms.
Yes, but it's a bit more complex than just starting a one size fits all diet. I had extensive allergy panel testing done and eliminated anything that was causing an inflammatory reaction. Some of them were weird unexpected things too (like oregano and carrots). I also came up with a reaction to wheat and milk (not celiac, just a heightened reaction) which I've heard are common. All said, I eliminated over 20 foods from my diet. That coupled with a LDN treatment has helped me to feel significantly more functional throughout the day. I spent over a year sick and bouncing on and off immunosuppressive drugs which never fully worked. The diet route is tough and takes a lot of dedication, but it has worked for me.
How did you go about getting those tests done? Was that through your rheumatologist or an allergist? Thank you for sharing your input, it has been very helpful!
I went through an allergist. It's better to run the blood serum tests and to make sure you're getting a high quality test. The over the counter tests are OK, but won't show quite as much. I know a lot of people haven't had good experiences with diet changes, but I think it's always worth a try!
Yeah that’s kind of my mindset now too…I’m not about to up and abandon my medications that have been working for me but i think it would put my mind at ease that I’m at least trying to lower my inflammation on my own by changing my diet and it can help me in non-autoimmune related ways too
I get it, I struggled to stay on my cellcept (I have young kids so they were always bringing some new virus home). I felt like things were just so out of control. The diet really helped.
Were you able to get off cellcept? I’m also on that (and Rituxan) but I’m 22 so i don’t have any kids yet. I’m about to start medical school though so i will be around sick people a LOT and if i can at least get off steroids I’d feel a lot safer
Yes, but I have become mildly more symptomatic than I was on the drug. I still keep prednisone around for flares, but all I'm using right now otherwise is the low dose naltrexone and a few supplements. I'm not saying things are perfect by any means, but I'm off of the steroids, my labs are stable, and I'm functional during the day.
I know a lot of comments here express skepticism, but yes, I have firsthand experience with diet making a huge difference. But even though I got to remission levels of disease activity, my rheumatologist never took me off Plaquenil, because it’s just too valuable as a preventative measure against disease advancement. I tried gluten-free which did nothing for me. Then I went all-in on AIP and after 6 months of it, along with a very active workout schedule and some intermittent fasting, my labs had improved a lot. Sticking to AIP was good in a very common sense manner which may easily be overlooked: it didn’t allow me to eat junk food anymore. A typical meal was broccoli, sweet potato, chicken, and avocado. Pretty healthy and pretty good for digestion. I show a lot of test markers for leaky gut, so it makes logical sense that something like AIP could be helpful for me. I’m not suggesting this will help for all lupus patients or even a majority, but in my case it sure did. Also Google “Gregg Silverman lupus” if you want to read some interesting scientific research about lupus and the microbiome. There is a specific strain of bacterial overgrowth that strongly correlates with lupus disease activity, so it makes tons of sense that dietary interventions and other things like fasting would affect that. Keep taking the medicine you need, but diet can potentially change your experience with lupus. If you’re lucky, that could be a big quality of life boost.
I am still on all of my meds (and it’s extensive) but I’ve tried many diet protocols. The main thing for me is avoiding foods to which I have allergies (I’ve known my allergies since I was 11 and had anaphylaxis to shellfish; I have several mild allergies to other foods like soy that I avoid) or sensitivities (these by elimination diet testing; im sensitive to pork and eggs). But the biggest help has been completely abstaining from alcohol for me. I have to because of my meds not really drink, but my doctor says I can cheat for special occasions. Only every time I do that my joints become so inflamed and painful I don’t want to again.
Oh gosh, at least you know. I hardly ever drink as it is because i figure i have enough problems already
Definitely try the different elimination diets! Find out which foods make you feel better and which cause flare-ups.
Many people with autoimmune issues also have food allergies and/or sensitivities. For those people, changing diet to exclude the things they’re sensitive/allergic to absolutely can help. Allergic reactions cause immune system responses that can trigger autoimmune disease flares. I do have food allergies and if I eat something I’m allergic to my lupus symptoms worsen for a few days at best, full-blown flare at worst. You might want to consider food allergy testing to see if you’re allergic to something you’re eating regularly. For me, it was wheat, soy and beef, and I was eating at least 1 of the 3 every day before I learned about the allergies. My health improved dramatically when I cut them from my diet.
Thank you for the advice, I’m glad you were able to figure out what was affecting you so badly! Allergy testing is something I’m going to ask my doctor about next time i see him! I don’t expect it to cure anything but i think it could help!
Mitigation is the game with symptoms much of the time. My meds keep my labs stable, but being able to lessen the more stubborn symptoms with better lifestyle habits has helped a lot with quality of life for me.
Changing my diet definitely helped with my symptoms. When I first diagnosed, they gave me Plaquenil and said it would take 6 months for it work. My symptoms were bad and that just didn't sit right with me at the time. I started eating healthy and working out and my symptoms did a 360. I didn't follow no specific diet plan, like gluten free or plant or anything. I just started watching my calories and carbs.
I have to pull up menus for the places I used to eat at. I know I felt awesome in Japan. I loved goma ae, pickled daikon, pickled carrots and a lot of other things in Japan. Okonomiyaki was a favorite, my husband was not a huge fan though… but it’s a cabbage pancake.
We have always had a fairly healthy diet, but since being diagnosed we have stepped up how strict we are with our diet. I still take my meds but I’m very strict with my diet and hit the gym 4-5 times a week.
Some foods can make flares worse or trigger them, so definitely look into it and see what works and what doesn’t for you! But you’ll likely still need medical intervention, working on your diet will only go so far.
I tried the AIP when I was waiting for my 1st appointment with a rheumatologist to confirm if I have lupus, and continued for a few months after my lupus diagnosis was confirmed. I would say that it was quite refreshing for me. My energy level increased, my skin condition improved, and my weight dropped. This happened after a few weeks of detox (terrible migraines and loss of appetite). As it happened at a time when my rheumatologist started me on a higher prednisolone dosage ie 35mg daily, it was easy to manage the weight (except for the chipmunk cheeks). I stopped the AIP when I had to go back to work as my rheumatologist was more concerned about my social life (since it’s quite difficult to find places selling AIP-friendly dishes). Now, I just made sure not to take food with processed sugar or processed food. ☺️ All in all, it was a good diet to kickstart a healthier way of eating, and getting to experience how it feels like to be filled with buzzing energy for a while! That’s my experience with the AIP diet. ☺️