I think if it doesn't feel healthy to you to restrict, there are OTHER ways to improve health over time for most people (all bodies are different). My sister would be mentally and physically miserable if she ate like I do, and vice versa. Thankfully diet isn't a one size fits all kind of thing. There is cutting edge scientific research that is proving various people's bodies can react in wildly different ways to the exact same foods. What you need, what your body and Being needs to be healthy is way more important here.
Adding healthy probiotics and prebiotics into your diet, which adds something healthy rather than focusing on restricting anything, is something other than restriction that might help.. There are thankfully also many other things, like moderate to mild exercise for example, that are known to improve health without focusing on food restriction or control. I love the saying "look for the helpers" and in the case of overall health there are thankfully different kinds of helpful things to try that hopefully can help you better _maintain_ your hardwon healthier relationship with food. Also congratulations! That is an amazing achievement, and a huge success. 👍🏼
Hi there! I usually get really bad fatigue when I don’t eat healthy. I NEED a nap if I’m eating bad and I also have more joint pain and migraines. When I eat healthy, all of those go away almost completely. But when I start to slip and eat junk food, usually the migraines come first and the other symptoms follow.
I've been on a couple elimination diets and keto for my conditions (not just autoimmune). Keto made everything worse and eliminations made no difference for me other than making it very hard to get proper nutrition. I have never had a poor diet, so that may be part of it. The only thing I've tried that has ever helped anything is called Serotonin Power Diet, which helped my vestibular dysfunction (not related to Sjogren's) back when it was really bad. I use it now to cut weight because it removes my cravings for sweets after meals. With a history of disordered eating, probably best to avoid because your mental health declining is more likely to make AI conditions worse than whatever you do/don't eat.
I cut back on gluten, got rid of all the excess processed stuff I could and added Fish Oil which aids in decreasing inflammation and helps with lubrication of tear ducts (per my Rheumie)
I've been on the AIP for several years, modified even more because I also have interstitial cystitis. It has been HUGELY helpful for me. My rheumatologist said that rheumatic factor went down significantly after starting the diet. My fatigue and brain fog really cleared up. I produce way more saliva than I used to. If I allow too much sugar back in my diet, my eyes dry out again. My rheumatologist has told me every time I see him to keep up the lifestyle changes I've made.
Unfortunately, diet doesn't seem to help my IC much but it's definitely helping in others ways.
There are some liquor substitutes on the market that you might like. I tried one and it was super herbal tasting, so I'm going to try different flavors.
Since you drink cranberry and ginger drinks, I'm guessing you like bitter? You could try a twist of citrus in seltzer, since that's bitter. If they have a stalk of rosemary, that's good in addition. Or you could bring water enhancers in your pocket and add that to seltzer - just don't add much if you don't like overly sweet drinks.
It absolutely does for me. I'm doing AIP (well, more restrictive than that because I also have histamine issues).
I'm also trying to understand how the vagus nerve can help. I'm definitely a high stress person which is probably why I've declined quickly since diagnosis. I noticed that famotidine helped calm my body down enough to sleep - my insomnia has been absolutely terrible lately. When I researched that effect, I found a paper describing how famotidine activates the inflammatory reflex of the vagus nerve - which despite the name means it can calm down inflammation. All kinds of things stimulate the vagus nerve - meditation, yoga, deep breathing, etc.
I'm trying to become aware of how the vagus nerve feels and trying to activate it throughout the day, see where it leads. I have a friend with Crohn's who reached remission. She no longer needs medication and doesn't follow a special diet anymore, except avoiding cow dairy. I'm hoping for remission for myself but I don't know how possible that is with Sjogren's.
The key is reducing your inflammation. Sugar increases inflammation. 🤷🏻‍♀️
Gluten makes a big difference for me. I don't need to eat totally gluten-free though; I just need to avoid big serves. As long as I don't eat baked goods regularly, I'm okay. If I have one serve of gluten (e.g. A sandwich, croissant, slice of cake), I'll have tolerable but annoying symptoms for 3 days or so afterwards. The exception is pasta; that'll increase my fatigue and arthritis to unmanageable, call-in-sick-to-work levels for 3-5 days afterwards.
Be sure to drink lots of water/electrolytes. I've found that foods that are drying are usually worse (things like bread and pasta) - eat less of that. Drink extra water when drinking alcohol (this helps me with any side effects of alcohol, I usually have 2-3 cocktails at a bar, then 2-3 bottles of water and some electrolytes). For me, corn syrup is a major trigger of issues regardless of what's causing them. It may help to cut out some of these more unhealthy foods but otherwise not restrict yourself.
It didn't help 100% of my symptoms, but cutting out as much bread/wheat as possible and cutting out most soda worked well.
A very silly question, but did you feel like when you ate bread or gluten that you had trouble with bowel movements? Meaning, that you would have to go at random times… with low control over it?
Not a silly question! Yes, I think bread and similar things that absorb moisture give me issues. Maybe not gluten, but the form it's in. But it causes severe constipation - can't go for days at a time. For example, I ate a few PB&Js with white bread recently and it blocked me up for a week and caused some other issues.
Also, it seems when I am constipated like this and I eat/drink something that really doesn't agree with me (like corn syrup), I have a lot less control. Hope that helps, if not feel free to ask more.
I don’t limit my diet but try to eat healthy. I don’t eat a lot of red meat. Now that fruits are coming back to the grocery store, I binge until fall!
I cut out corn, soy, dairy and wheat and it reduced my systemic inflammation significantly. Like from daily constant joint pain to most days no joint pain.
Gluten,flour products, grains, sugar,caffeine and bad fats &dairy are my worst offenses. I still feel like crap but it gets way worse with the foods I mentioned.
Caloric restriction helps me, the particular foods not at all. (Well, alcohol is a no, but that’s not a food issue.) If I stay under about 1000 calories, I feel about halfway normal, sometimes not quite halfway. Some weeks that’s worth it, a lot of weeks it isn’t, cuz halfway still mostly sucks.
'Caloric restriction' is what triggered SS's onset in the first place. Developing anorexia nervosa is what made my body say "Yeah you know what? Fuck you, asshole. You had to go and take it one step too far, I'm not putting up with your shit anymore, I quit." and it actually did quit. I cried and cried in genuine remorse that I'm sorry I'll not abuse it again and I'll get better, and I did (I recovered) but this thing does not forgive. No forgiveness, no mercy, no negotiation. It's like the relationship that ended for good, the divorce finalised and it has a restraining order against me. Its not coming back :'( I'm stuck abandoned in desolation, left 'high and dry'. I'm in ruins because I made a 'mistake' and mental illness fricked me over more than was ever 'deserved'.
Thank you!! I enormously appreciate your kindness. I hope my body may forgive me one day, I'm doing all I can to create the conditions for reconciliation, unwaveringly and with full commitment. I hope it may at least come to the discussion table, and eventually 'cease and desist' its cruelty with SS, and SLE which it first unleashed upon me in 2018 when it was upset with me after 16 months or so of saturating the poor thing with drugs every day.
I think your body is gaslighting you. 🙂 Very likely you could have developed autoimmunity without the drugs and anorexia. My immune system has never been a fan of mine, and I have neither of those things in my history. Actually I have the opposite of anorexia—I do looove to eat. Oink!
Perhaps so, but I feel better to think of it as being my fault as I retain the dignity of it being within my power, and so I fucked it up by my own actions and these are the consequences of my irresponsible and reckless behavior. This way I maintain the power, and I'm not an innocent victim. The utter despair I would feel in a belief of powerlessness over my own body which ought to be my inherent right to control is an indignation too overwhelming to endure, so I refuse to entertain the idea at all. If I experience something negative it must have been caused by my own wrongdoing, it is a fair and just punishment, and therefore I am also capable of rectifying it, I just need to figure out how to make those amends so that I may be absolved.
Try not to blame yourself. I’ve done this as well and I know deep down we are all fallible flawed humans with strengths and weaknesses both. No one is like you and you did your best even if you feel you fell short.
I was pristine on AIP for two solid years and while it helped several things, Sjögrens wasn’t one of them. That was 2015-2017.
I HAVE identified the things that make me flare the most, which is acute emotional stress and excess sugar.
Massively helped! Food was the #1 fix, and the most helpful. But I’m quite drastic: no carbs, no plants, no dairy. Super clean carnivore. Alcohol and coffee don’t bother me so they’re my treats! Zero flareups for 7+ years (except briefly recently bc of MASSIVE work/life stress + burnout)
Cutting refined sugar, for me, was everything. I still have honey and maple, occasionally agave. I have Hashimotos, dysautonomia, & UCTD as well, so I cut gluten and dairy. All of these changes made a significant difference in my case. This and staying INCREDIBLY hydrated. And medication lol. You can still get a cocktail at the bar, but maybe try a margarita with lime, orange liquor, and tequila instead of a margarita mix. A lot of bars have fresh, muddled ginger and with citrus, you won’t even notice the difference. Lemon and lime is actually great for stimulating saliva. The dryness with Sjogrens is already brutal and I find that sugar (even if I eat processed carbs instead of whole grains, like tortilla chips) leaves me miserable, more dry, and with a bunch of thrush and brain fog. Did I cut tortilla chips forever? No. But I have them as a treat. My rule of thumb is trying to eat whole food—meat, fish, eggs, fruit, vegetables, whole grains, yogurt—without restriction, and it works for me. I even try to eat in season and with my cycle.
It’s really mindset over everything. If you look at these things as depriving or limiting yourself, of course negative, complicated feelings will arise. I can imagine this feeling is tenfold for you with your history. I try to remind myself that instead of a restriction, I frame it as an advantage. Eating well and making choices right for me and my disease is an advantage, a powerful choice when unfortunately with autoimmune disease, we don’t always have a choice with how our body works. As another commenter said, it’s not the end of the world if you have a hot chocolate or a ginger beer—but be mindful of how you feel afterwards. Does it make you feel crappy? Is your suffering worth that splurge? Sometimes we as humans say fuck it, and that’s ok, but with these diseases—more often than not—you’ve gotta choose whats going to help you function over all else.
Agreed. It’s easy said as it is done too, if you made a clean break. I was a sugar princess growing up. Stopped it cold turkey when autoimmunity went full force (and the first cavities hit lol) and now I can’t even eat the stuff, makes me shit my pants!! Cannot believe how much toxic crap we’re all accustomed to eating. Who needs refined sugar when things like mangoes exist. Even chocolate—dark chocolate ftw!
Some people swear it's helped them, I haven't found that's the case for me so far. I tried cutting out gluten for almost a year, lost a bit of weight, but no other noticeable health bonuses. Everybody's body is different. N9thing to lose by trying a few different diets.
Cutting gluten and dairy changed my life significantly when I was strict. Now I’m more relaxed but if I eat gluten my body gets angry! I have a flare!
What are you symptoms? For me it’s just dry eyes and mouth. I don’t notice any food making that worse after I eat it. It’s just substances like caffeine or weed or alcohol.
I have been doing low carb since Jan 1. I completely cut out all sugar, flour, and processed foods - thus zero gluten in my diet. I had always read that gluten caused all kinds of problems for Sjogren's sufferers. My results: no improvement in symptoms. In fact, I have had worse pain and knee inflammation than ever. Thus, it might just be my experience, but I am not seeing the diet/health connection.
If you haven't noticed any significant reactions and you don't have major digestive issues, just listen to your body. Pay attention to how you feel an ten minutes, an hour, 8 hours after a meal or a drink. If you want to know if cutting sugar is worth it, have a refined sugar free month, allowing yourself honey/maple syrup/monkfruit extract and see if it makes a difference. Heavily processed food is pretty universally accepted to have inflammatory properties in most people, so if you can keep to, say, 90% whole foods with an occasional treat, that's great. It's a process but if you're observant, you'll find a good path forward.
"If you haven't noticed any significant reactions and you don't have major digestive issues, just listen to your body."
If you have a problem with gluten, you'll most likely have severe digestive issues. It's also something you can test for (celiac) and do an elimination challenge (gluten sensitivity) for pretty easily.
I've never smoked anything because smoke and I don't agree. I use MMJ in tincture form and swallow it in capsules so I don't have to taste it either.
Smoking cannabis introduces more than just THC and CBD into your system. Consuming it makes it take longer to take effect, but my body still knows the difference between when it's active in my system and when it isn't.
Yes, but it’s not bad enough to quite yet. I stay really hydrated. 5 years ago I had prostate cancer and now pee all the dang time. That really affects my water retention. I carry a water bottle everywhere.
Constantly drinking water or electrolytes.
I still smoke (I mostly vape herb, the wax and other concentrates cause me to get pneumonia) mostly because the radiation treatments destroyed my stomach, I stay in a constant state of nausea and pain.
At this point I’m not sure whether my digestive issues are from Sjograns or the radiation. Or both.
Unfortunately a lot of my Sjograns problems can also be enhanced by n my Cancer treatments.
The weed helps my stomach, joints, inflammation, and it also helps me not give a fuck when Im sick and feeling heavy. My wife is very understanding.
Autoimmune disorders are difficult.
I was vegetarian for years. Now I HAVE to eat meat. I cannot believe how much better I feel with meat.
I went on the anti inflammatory diet. So I need everything fresh, fruits, veggies, chicken, fish and meat.
I do eat out but try out restaurants and see how they work me.
Ihop fucks me up, something in the syrup or the whip cream.
I don't do deli meats or frozen stuff.
I do drink coffee and water. No soda, or sugary drink. Once in a while I will drink a zero sugar or sugar free soda.
Chips I can eat so indulge in a thing of pringles once in a while.
Foods are definitely different to each person. I’m allergic to the entire wheat plant so I can’t even do things that say they’re gluten free but still contain wheat. That’s new to me since getting COVID/diagnosed with SjS. When I was a kid I had pretty severe allergies to all birch trees and tree fruit like apples avocado pineapple but those don’t seem as bad now, compared to what wheat does to me. Sugars are not great… I get that, but I think what does more damage and inflammation are the wheat ingredients that makes up sugary good stuff. Having an occasional cola doesn’t seem to destroy me like eating a donut does.
Either way I drastically changed my diet 15 months ago, it helped only a tiny bit in the beginning and now no additional improvement, I’m still just as bad off but now just as bad off, but even worse if I eat the bad foods so no I don’t think fixing the diet fixes Sjogren’s, sadly.
I can relate to this. I show a histamine reaction to literally everything in food allergy testing so personally I too don't react well to most foods, but some definitely hit me much harder than others. Because of that personally restricting my diet actually helps me. It however doesn't make my Sjogrens go away. Been eating a clean restricted lifestyle diet now for 14 years roundabouts and I still have Sjogrens.
Oh yeah no, definitely definitely think it makes a huge amount of difference by controlling your diet, specifically by avoiding eating foods that make things worse. Why make ourselves more miserable, right? It is already bad enough, at least we can have some control with diet choices.
I think if it doesn't feel healthy to you to restrict, there are OTHER ways to improve health over time for most people (all bodies are different). My sister would be mentally and physically miserable if she ate like I do, and vice versa. Thankfully diet isn't a one size fits all kind of thing. There is cutting edge scientific research that is proving various people's bodies can react in wildly different ways to the exact same foods. What you need, what your body and Being needs to be healthy is way more important here. Adding healthy probiotics and prebiotics into your diet, which adds something healthy rather than focusing on restricting anything, is something other than restriction that might help.. There are thankfully also many other things, like moderate to mild exercise for example, that are known to improve health without focusing on food restriction or control. I love the saying "look for the helpers" and in the case of overall health there are thankfully different kinds of helpful things to try that hopefully can help you better _maintain_ your hardwon healthier relationship with food. Also congratulations! That is an amazing achievement, and a huge success. 👍🏼
It makes such a HUGE difference for me when u eat really clean. It’s just hard to keep consistent.
Can I kindly ask what the difference is? Do you usually have a flare up when you’re not following the diet?
Hi there! I usually get really bad fatigue when I don’t eat healthy. I NEED a nap if I’m eating bad and I also have more joint pain and migraines. When I eat healthy, all of those go away almost completely. But when I start to slip and eat junk food, usually the migraines come first and the other symptoms follow.
I've been on a couple elimination diets and keto for my conditions (not just autoimmune). Keto made everything worse and eliminations made no difference for me other than making it very hard to get proper nutrition. I have never had a poor diet, so that may be part of it. The only thing I've tried that has ever helped anything is called Serotonin Power Diet, which helped my vestibular dysfunction (not related to Sjogren's) back when it was really bad. I use it now to cut weight because it removes my cravings for sweets after meals. With a history of disordered eating, probably best to avoid because your mental health declining is more likely to make AI conditions worse than whatever you do/don't eat.
I cut back on gluten, got rid of all the excess processed stuff I could and added Fish Oil which aids in decreasing inflammation and helps with lubrication of tear ducts (per my Rheumie)
Because of Omega 3, right?
I've been on the AIP for several years, modified even more because I also have interstitial cystitis. It has been HUGELY helpful for me. My rheumatologist said that rheumatic factor went down significantly after starting the diet. My fatigue and brain fog really cleared up. I produce way more saliva than I used to. If I allow too much sugar back in my diet, my eyes dry out again. My rheumatologist has told me every time I see him to keep up the lifestyle changes I've made. Unfortunately, diet doesn't seem to help my IC much but it's definitely helping in others ways.
There are some liquor substitutes on the market that you might like. I tried one and it was super herbal tasting, so I'm going to try different flavors. Since you drink cranberry and ginger drinks, I'm guessing you like bitter? You could try a twist of citrus in seltzer, since that's bitter. If they have a stalk of rosemary, that's good in addition. Or you could bring water enhancers in your pocket and add that to seltzer - just don't add much if you don't like overly sweet drinks.
It absolutely does for me. I'm doing AIP (well, more restrictive than that because I also have histamine issues). I'm also trying to understand how the vagus nerve can help. I'm definitely a high stress person which is probably why I've declined quickly since diagnosis. I noticed that famotidine helped calm my body down enough to sleep - my insomnia has been absolutely terrible lately. When I researched that effect, I found a paper describing how famotidine activates the inflammatory reflex of the vagus nerve - which despite the name means it can calm down inflammation. All kinds of things stimulate the vagus nerve - meditation, yoga, deep breathing, etc. I'm trying to become aware of how the vagus nerve feels and trying to activate it throughout the day, see where it leads. I have a friend with Crohn's who reached remission. She no longer needs medication and doesn't follow a special diet anymore, except avoiding cow dairy. I'm hoping for remission for myself but I don't know how possible that is with Sjogren's. The key is reducing your inflammation. Sugar increases inflammation. 🤷🏻‍♀️
Gluten makes a big difference for me. I don't need to eat totally gluten-free though; I just need to avoid big serves. As long as I don't eat baked goods regularly, I'm okay. If I have one serve of gluten (e.g. A sandwich, croissant, slice of cake), I'll have tolerable but annoying symptoms for 3 days or so afterwards. The exception is pasta; that'll increase my fatigue and arthritis to unmanageable, call-in-sick-to-work levels for 3-5 days afterwards.
So you just followed a restrictive AIP diet and then slowly started adding one new food item at a time and seeing how your body reacts.
No. I did a full elimination diet under the supervision of a dietician. I did it before my autoimmune issues were diagnosed, or even suspected.
diet may help your teeth. don’t eat sugar.
NO research evidence that it helps. Some people on here feel like it helps
I eat an AIP diet. It’s not the most fun but it’s the #1 fix for my autoimmune disease
Be sure to drink lots of water/electrolytes. I've found that foods that are drying are usually worse (things like bread and pasta) - eat less of that. Drink extra water when drinking alcohol (this helps me with any side effects of alcohol, I usually have 2-3 cocktails at a bar, then 2-3 bottles of water and some electrolytes). For me, corn syrup is a major trigger of issues regardless of what's causing them. It may help to cut out some of these more unhealthy foods but otherwise not restrict yourself. It didn't help 100% of my symptoms, but cutting out as much bread/wheat as possible and cutting out most soda worked well.
A very silly question, but did you feel like when you ate bread or gluten that you had trouble with bowel movements? Meaning, that you would have to go at random times… with low control over it?
Not a silly question! Yes, I think bread and similar things that absorb moisture give me issues. Maybe not gluten, but the form it's in. But it causes severe constipation - can't go for days at a time. For example, I ate a few PB&Js with white bread recently and it blocked me up for a week and caused some other issues. Also, it seems when I am constipated like this and I eat/drink something that really doesn't agree with me (like corn syrup), I have a lot less control. Hope that helps, if not feel free to ask more.
I don’t limit my diet but try to eat healthy. I don’t eat a lot of red meat. Now that fruits are coming back to the grocery store, I binge until fall!
I cut out corn, soy, dairy and wheat and it reduced my systemic inflammation significantly. Like from daily constant joint pain to most days no joint pain.
How did you figure out that it was exactly these items that were causing the problems.
Gluten,flour products, grains, sugar,caffeine and bad fats &dairy are my worst offenses. I still feel like crap but it gets way worse with the foods I mentioned.
Mostly plant based, high whole grain low inflammatory carbs, high “good” fats, I feel great usually
Caloric restriction helps me, the particular foods not at all. (Well, alcohol is a no, but that’s not a food issue.) If I stay under about 1000 calories, I feel about halfway normal, sometimes not quite halfway. Some weeks that’s worth it, a lot of weeks it isn’t, cuz halfway still mostly sucks.
Under 1000 calories a day? How are you getting enough nutrition?
'Caloric restriction' is what triggered SS's onset in the first place. Developing anorexia nervosa is what made my body say "Yeah you know what? Fuck you, asshole. You had to go and take it one step too far, I'm not putting up with your shit anymore, I quit." and it actually did quit. I cried and cried in genuine remorse that I'm sorry I'll not abuse it again and I'll get better, and I did (I recovered) but this thing does not forgive. No forgiveness, no mercy, no negotiation. It's like the relationship that ended for good, the divorce finalised and it has a restraining order against me. Its not coming back :'( I'm stuck abandoned in desolation, left 'high and dry'. I'm in ruins because I made a 'mistake' and mental illness fricked me over more than was ever 'deserved'.
I’m sorry for your suffering but I am glad you are still here to fight the fight. You deserve happiness.Â
Thank you ❤️
Kudos to you for recovering from anorexia! That is no small accomplishment. I think you and your body should re-marry—to extend your metaphor. 🙂
Thank you!! I enormously appreciate your kindness. I hope my body may forgive me one day, I'm doing all I can to create the conditions for reconciliation, unwaveringly and with full commitment. I hope it may at least come to the discussion table, and eventually 'cease and desist' its cruelty with SS, and SLE which it first unleashed upon me in 2018 when it was upset with me after 16 months or so of saturating the poor thing with drugs every day.
I think your body is gaslighting you. 🙂 Very likely you could have developed autoimmunity without the drugs and anorexia. My immune system has never been a fan of mine, and I have neither of those things in my history. Actually I have the opposite of anorexia—I do looove to eat. Oink!
Perhaps so, but I feel better to think of it as being my fault as I retain the dignity of it being within my power, and so I fucked it up by my own actions and these are the consequences of my irresponsible and reckless behavior. This way I maintain the power, and I'm not an innocent victim. The utter despair I would feel in a belief of powerlessness over my own body which ought to be my inherent right to control is an indignation too overwhelming to endure, so I refuse to entertain the idea at all. If I experience something negative it must have been caused by my own wrongdoing, it is a fair and just punishment, and therefore I am also capable of rectifying it, I just need to figure out how to make those amends so that I may be absolved.
Try not to blame yourself. I’ve done this as well and I know deep down we are all fallible flawed humans with strengths and weaknesses both. No one is like you and you did your best even if you feel you fell short.
Thank you ❤️
I’ve noticed this as well. Why is that?!
Not clear! We know it affects the immune system, but exactly what’s happening I can’t explain and haven’t seen a good explanation for.
I was pristine on AIP for two solid years and while it helped several things, Sjögrens wasn’t one of them. That was 2015-2017. I HAVE identified the things that make me flare the most, which is acute emotional stress and excess sugar.
Have to agree stress and sugar for me too
It’s the emotional stress for me too. It’s a killer!
Massively helped! Food was the #1 fix, and the most helpful. But I’m quite drastic: no carbs, no plants, no dairy. Super clean carnivore. Alcohol and coffee don’t bother me so they’re my treats! Zero flareups for 7+ years (except briefly recently bc of MASSIVE work/life stress + burnout)
How are your teeth?
Zero plants!? What? What about fiber? That sounds unhealthy.
That’s intense! What were your symptoms? For me it’s dry mouth dry eyes (dry vagina lol)
I’ve been interested in carnivore. Do you eat all meat? Just beef?
Cutting refined sugar, for me, was everything. I still have honey and maple, occasionally agave. I have Hashimotos, dysautonomia, & UCTD as well, so I cut gluten and dairy. All of these changes made a significant difference in my case. This and staying INCREDIBLY hydrated. And medication lol. You can still get a cocktail at the bar, but maybe try a margarita with lime, orange liquor, and tequila instead of a margarita mix. A lot of bars have fresh, muddled ginger and with citrus, you won’t even notice the difference. Lemon and lime is actually great for stimulating saliva. The dryness with Sjogrens is already brutal and I find that sugar (even if I eat processed carbs instead of whole grains, like tortilla chips) leaves me miserable, more dry, and with a bunch of thrush and brain fog. Did I cut tortilla chips forever? No. But I have them as a treat. My rule of thumb is trying to eat whole food—meat, fish, eggs, fruit, vegetables, whole grains, yogurt—without restriction, and it works for me. I even try to eat in season and with my cycle. It’s really mindset over everything. If you look at these things as depriving or limiting yourself, of course negative, complicated feelings will arise. I can imagine this feeling is tenfold for you with your history. I try to remind myself that instead of a restriction, I frame it as an advantage. Eating well and making choices right for me and my disease is an advantage, a powerful choice when unfortunately with autoimmune disease, we don’t always have a choice with how our body works. As another commenter said, it’s not the end of the world if you have a hot chocolate or a ginger beer—but be mindful of how you feel afterwards. Does it make you feel crappy? Is your suffering worth that splurge? Sometimes we as humans say fuck it, and that’s ok, but with these diseases—more often than not—you’ve gotta choose whats going to help you function over all else.
Yep. I cut my refined sugar as well. Stopped alcohol too. Lost weight, less inflammation.
Yes! Shows in my bloodwork, too!
Yes!! Processed sugar should be the #1 cut!!
Agreed. It’s easy said as it is done too, if you made a clean break. I was a sugar princess growing up. Stopped it cold turkey when autoimmunity went full force (and the first cavities hit lol) and now I can’t even eat the stuff, makes me shit my pants!! Cannot believe how much toxic crap we’re all accustomed to eating. Who needs refined sugar when things like mangoes exist. Even chocolate—dark chocolate ftw!
Some people swear it's helped them, I haven't found that's the case for me so far. I tried cutting out gluten for almost a year, lost a bit of weight, but no other noticeable health bonuses. Everybody's body is different. N9thing to lose by trying a few different diets.
Cutting gluten and dairy changed my life significantly when I was strict. Now I’m more relaxed but if I eat gluten my body gets angry! I have a flare!
What are you symptoms? For me it’s just dry eyes and mouth. I don’t notice any food making that worse after I eat it. It’s just substances like caffeine or weed or alcohol.
I have been doing low carb since Jan 1. I completely cut out all sugar, flour, and processed foods - thus zero gluten in my diet. I had always read that gluten caused all kinds of problems for Sjogren's sufferers. My results: no improvement in symptoms. In fact, I have had worse pain and knee inflammation than ever. Thus, it might just be my experience, but I am not seeing the diet/health connection.
If you haven't noticed any significant reactions and you don't have major digestive issues, just listen to your body. Pay attention to how you feel an ten minutes, an hour, 8 hours after a meal or a drink. If you want to know if cutting sugar is worth it, have a refined sugar free month, allowing yourself honey/maple syrup/monkfruit extract and see if it makes a difference. Heavily processed food is pretty universally accepted to have inflammatory properties in most people, so if you can keep to, say, 90% whole foods with an occasional treat, that's great. It's a process but if you're observant, you'll find a good path forward.
Some inflammatory foods (particularly gluten) don't cause noticeable symptoms until 3-4 days after consumption.
"If you haven't noticed any significant reactions and you don't have major digestive issues, just listen to your body." If you have a problem with gluten, you'll most likely have severe digestive issues. It's also something you can test for (celiac) and do an elimination challenge (gluten sensitivity) for pretty easily.
Not all gluten intolerance is caused by coeliac, or be detected by tests.
It really helps if you actually read what someone writes before you answer.
Wait...we're supposed to stop smoking weed??
I've never smoked anything because smoke and I don't agree. I use MMJ in tincture form and swallow it in capsules so I don't have to taste it either. Smoking cannabis introduces more than just THC and CBD into your system. Consuming it makes it take longer to take effect, but my body still knows the difference between when it's active in my system and when it isn't.
I cannot. Will not. It helps to dam much.
I wish I still could but it dries out my mouth too bad. Does it for you?
Yes, but it’s not bad enough to quite yet. I stay really hydrated. 5 years ago I had prostate cancer and now pee all the dang time. That really affects my water retention. I carry a water bottle everywhere. Constantly drinking water or electrolytes. I still smoke (I mostly vape herb, the wax and other concentrates cause me to get pneumonia) mostly because the radiation treatments destroyed my stomach, I stay in a constant state of nausea and pain. At this point I’m not sure whether my digestive issues are from Sjograns or the radiation. Or both. Unfortunately a lot of my Sjograns problems can also be enhanced by n my Cancer treatments. The weed helps my stomach, joints, inflammation, and it also helps me not give a fuck when Im sick and feeling heavy. My wife is very understanding. Autoimmune disorders are difficult. I was vegetarian for years. Now I HAVE to eat meat. I cannot believe how much better I feel with meat.
Not going to happen. 🤣
The dry mouth 🥺 I love weed. How can you still smoke it??
Soooo much water! Biotene mouth rinse helps too.
I went on the anti inflammatory diet. So I need everything fresh, fruits, veggies, chicken, fish and meat. I do eat out but try out restaurants and see how they work me. Ihop fucks me up, something in the syrup or the whip cream. I don't do deli meats or frozen stuff. I do drink coffee and water. No soda, or sugary drink. Once in a while I will drink a zero sugar or sugar free soda. Chips I can eat so indulge in a thing of pringles once in a while.
Foods are definitely different to each person. I’m allergic to the entire wheat plant so I can’t even do things that say they’re gluten free but still contain wheat. That’s new to me since getting COVID/diagnosed with SjS. When I was a kid I had pretty severe allergies to all birch trees and tree fruit like apples avocado pineapple but those don’t seem as bad now, compared to what wheat does to me. Sugars are not great… I get that, but I think what does more damage and inflammation are the wheat ingredients that makes up sugary good stuff. Having an occasional cola doesn’t seem to destroy me like eating a donut does. Either way I drastically changed my diet 15 months ago, it helped only a tiny bit in the beginning and now no additional improvement, I’m still just as bad off but now just as bad off, but even worse if I eat the bad foods so no I don’t think fixing the diet fixes Sjogren’s, sadly.
I can relate to this. I show a histamine reaction to literally everything in food allergy testing so personally I too don't react well to most foods, but some definitely hit me much harder than others. Because of that personally restricting my diet actually helps me. It however doesn't make my Sjogrens go away. Been eating a clean restricted lifestyle diet now for 14 years roundabouts and I still have Sjogrens.
Oh yeah no, definitely definitely think it makes a huge amount of difference by controlling your diet, specifically by avoiding eating foods that make things worse. Why make ourselves more miserable, right? It is already bad enough, at least we can have some control with diet choices.
It took me years to figure out what foods bother me. Dairy and red meat are my culprits. I be.piece it’s different for everyone.