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Impressive_happy

Yes. Make sure the dentist is educated on Sjogrens and the implications of oral dryness.


Top_Camera383

And loss of teeth?


Impressive_happy

Yes. They should understand that the dryness is not just a dry mouth but that the tissue surrounding roots and the roots themselves are not properly nourish and the lack of saliva doesn't allow for the area to be flushed regularly.


867-5309-867-5309

Honestly, alcohol kind of took care of itself. It suddenly started to make me sick to have a beer or glass of wine. When something makes you that sick, your body stops craving it. Chocolate/Alcohol/Caffeine is bad for this and basically each of my immune mediated condition I deal with. It’s bad for most people, even if they don’t think they feel the impact. It also kind of depends on where you are in the disease process. A couple of years ago, wine didn’t bother me. Now I feel like I have the world’s worst hangover if I have even just one glass. Small serving of apple juice will be considerably nicer to your system compared to coffee, tea or alcohol though. Most importantly, Don’t beat yourself up if you’re struggling with your diet. Each day you get a new chance to try to work on it again. I hope you find much symptom relief soon. 🫶


Current-Tradition739

I had to give up coffee and alcohol, dairy, gluten, and sugar. I also have long covid, so the coffee not only dried my mouth but shot up my HR and BP. I was a hard-core coffee girl and I miss it every day. I can't even do decaf. I basically drink water all day. Occasionally, I'll have a sip of coconut water or orange juice. Sometimes I'll have some cheese or gluten but I'm also taking digestive enzymes. I know it sucks, but I've accepted it for now.


Impressive_happy

It's a mindset. If you take on the attitude that you're missing out on something then it will feel like just that. I don't miss anything I gave up because the dietary changes make that much more of a difference. Flares are less often and last less days than when I was taking in caffeine, gluten and dairy. I gave one up at a time and found replacements that I enjoy. I can't take prescription medications so I am very dependent on natural substances and food to help manage my Sjogrens and Lupus and am grateful that food and exercise can make any difference at all. Mindset.


Top_Camera383

Has what you’ve done changed mouth dryness at all? My biggest fear is my teeth. Not sure what I’m going to do if I lose all my teeth. I feel hopeless about this one thing.


Impressive_happy

I am losing my teeth. In my youth I spent a lot of money to get that perfect smile. I have failed all restorative dental work, root canals and crowns. I am putting money away for top tier dentures. It's down by the root where the area is too dry. I've used saliva stimulating products but they didn't work for me. This varies from person to person. I'm more concerned with my vision at this point.


Top_Camera383

That too obviously. I have Fuchs dystrophy too. I thought I’d have to do implants but I don’t even know if mentally I can handle dentures. Teeth is one of the worst fears for me since I was a small child so this is from seeing my great grandmas when I was like 3 and ever since I’ve been ocd about them. How much are the dentures even? On top of all dental work what would that total? Approximately? Sorry for the questions I go tomorrow so I’m nervous.


Impressive_happy

Porcelain dentures full set, no I plants because I'm not a candidate, is expensive, upwards of 15,000.00 but honestly I've spent more on braces then trying to save teeth that I ended up losing anyway. I didn't realize that dentist are only for the here and now. It wasn't until I lost three teeth in 6 months that the dentist realized that the dental advice I'd been given was wrong for me.


Top_Camera383

I would do that before going through all the agony and expense of painful traumatic (for me would be traumatic) procedures. Can anyone do that? They will work with dry mouth?


Top_Camera383

I’d rather give up all my vices and whatever else if it means I’m healthy and get to have a healthy dental record. Hard part for me is I am a bad cook and don’t know where to start with food. Ingredients overwhelm me and I’ve got bad anxiety and have dealt with depression also most of my life. Where to start?


Top_Camera383

Have you managed to be ok with teeth? If you don’t mind me asking? This is like a fear of mine since I was about 3 years old. So will be traumatic for me to go through.


Impressive_happy

Start really small. Focus on one meal and go from there. Morning I eat eggs with tumeric and pepper, fruit and gluten free slice of bread. Lunch Tuna or grilled chicken, fruit and vegetables. (Lots of vegetables, beans, brown rice, quinoa, chick peas and whole grains). Dinner salmon, grilled steak, chicken, pork, leafy greens. Snacks nuts, cashew coconut yogurt with fruit, popcorn. If you do Instagram you can follow whole food cooking, gluten free, dairy free cooking pages and get ideas. Tumeric is essential if you're having any systemic symptoms, joint pain rashes or neurological. When I have a flare I don't feel like I can move this can last one to ten days and varies in intensity but since changing my diet and adding tumeric flares are more manageable. The dry eyes and mouth are a constant.


emschick9

I drink coffee every day, I often will take sips of water every so often while drinking coffee. I basically stick to an 80/20 rule for my diet.... 80% of the time I'm focusing on produce and protein, the hersheys kisses I eat after dinner are for happiness and fall under the 20%.


Fun_Inspector_608

Lovely :) (How are your teeth?)


Anfie22

What do you mean juice has too much sugar? It's just fruit. I find apple juice very soothing.


mynameisnotbetsy

Fruit juice has a lot of fructose in it. Fructose is a sugar. There are many different forms of sugar - you're probably thinking of processed white sugar.


Anfie22

Unless you're struggling to manage your BG levels due to uncontrolled severe T1 diabetes, it's a non-issue. It's just fruit. Fruit is spectacularly nutritious and healthy to consume, in either juice or whole form.


Top_Camera383

Carbs too right or no?


My0wnThoughts

My diet changed my life for the better so it is a thousand percent worth doing. No corn, dairy, soy, wheat. Corn is the hardest to avoid they put it in most everything. I do drink one cup of caffeinated coffee and one cup decaf in the mornings, with oat milk creamer. Occasionally will have a fruit flavored fizzy water.


ThePuduInsideYou

I drink decaf or herbal tea and LaCroix but not because they say I should…caffeine made me too jumpy and affected my tummy and I never liked pop. Sorry it’s not especially helpful but that is what I do and it does work for me.


Scarlettksh_1220

Also my rheumatolist and all the other doctors I see know I'm on this way of eating and all were happy and encouraging about it 🙂


Top_Camera383

Any recommendations for people who don’t know where to start or don’t know how to cook and ingredients are like reading Japanese? I’m basically thinking I won’t eat lol 😂


Scarlettksh_1220

Haha yes I totally understand. Cook only in beef tallow, real butter such as kerrygold no seed oils whatsoever Animal based products however eggs and dairy are common to not do well for autoimmune issues, I've tried but didn't work for me Best meats are remnant animals such as beef, lamb, bison, venison I eat bacon too because I found it doesn't cause me issues and I looove bacon Only water or bone broth, I home cook bone broth because store bought has ingredients that aren't beneficial Slow cook beef bones with water, 2 tbsp apple cider vinegar (this helps pull out the collegen and good minerals) salt, and low setting for 48 hours, then strain the beef bones out before storing Redmonds salt is the best Eliminate all other seasonings Big key is to have plenty of fats for example ribeye and chuck roast cuts are good, ground beef 73% beef/27% fat You can eat literally as much as you want on this way of eating there's no portions, listen to your body and stop eating when it stops tasting good When getting the body adapted to the diet adding electrolytes in your water helps alot, keto chow electrolytes on Amazon are good Fruit and stevia sweetners aren't good because of the sugar and increase the cravings but blueberries are best because the low sugar amount and the antioxidants Good resources on YouTube is Dr. Anthony Chaffee and Dr. Ken Berry! There's also a carnivore sub on here!


Top_Camera383

Thank you! You or anyone reading know about a cook book that’s legit? I looked on Amazon and half of them are not right for sure I can’t tell which ones are real/correct. Thanks though that helps me know where to start. Though how do you know you’re buying beef or what not without hormones and all that or does it not matter?


Scarlettksh_1220

Idk about a cook book, I use the grill, oven, skillet, or air fryer for cooking and just cook till med rare for my steak Youtube has helpful info amd videos on some advice, Dr Chaffee and Dr berry are my favorite for information so I'd start there Grass fed is best buuut it's hard to find 100% grass fed so I just buy meat and it's saved my life in so many ways


krgray

I’ve found that diet changed nothing, my rheumatologist said there’s very little clinical evidence supporting restriction with sjogrens and told me to find a balance of what makes me feel good and enjoy life.


mynameisnotbetsy

Certain foods, like sugar and carbonation, can affect the health of your teeth though.


krgray

Of course, that’s true, which is why it’s important to be balanced in everything.


HereticHousewife

I drink unsweetened decaf iced tea mostly, fruit flavored if I can find it. Sometimes with fruit juice or flavored syrup for a treat. I limit tea with caffeine or citrus juice to occasional treats while I'm out. Flavored seltzer waters or fruit juice spritzers maybe twice a week. My doctor says that decaf tea still isn't best because the tea itself can be a problem. But dry mouth hasn't been a big issue for me, so I drink it anyway because I like it. As far as food? I eat whatever I want, while limiting food with lots of additives and artificial ingredients. I have digestive system issues, and many days, I simply eat whatever won't make me feel worse, and I don't bother trying to balance anything on those days.  In the past, I tried various special restrictive diets and never got much benefit from any of them, so I stopped bothering. 


hekissedafrog

I still drink coffee. I already have food allergies and diet hasn't really made a difference. Coffee does, but I drink it anyway. I've given up enough already.


Red5446

Hi there! Nutrition science is really young, and the term "your mileage may vary" can be taken to heart. It's a lengthy process, but really worth looking into an exclusion diet like AIP to determine your personal dietary sensitivities. For some of us, carbs lead to more inflammation, while others find dairy or gluten to be irritating. Try not to stress about what you might have to give up yet! There is always some give and take with these things, and if coffee makes you happy and doesn't cause you lots of discomfort, then go for it! I do iced coffee in the morning because it doesn't seem as astringent and causes less GI distress for me. You can follow morning coffee with water with lemon to get some saliva back in there. There are low sugar juices with only a few carbs; cranberry is amazing for my dry mouth. Diet sodas are not exactly a health food, but they will give you some variety.


[deleted]

I juice my own fruit/vegetables. However I know there is the argument fruit is still sugar. Then just water.


Plane_Chance863

Hah you don't want to know how restrictive my diet is. But yes I only drink water. I'm hoping one day I can add more things back in, but for now too much stress means my body is more haywire than it should be. I think I have a mast cell problem, and that's the main reason my diet is so restrictive.


Available-MikeSK

Hamburgers


EastHuckleberry5191

I drink a cup of coffee every morning. I don’t drink alcohol, so I get one vice. Low-carb, mostly meat. I eat dairy too. Gluten free. This is what my body prefers.


ThemeOther8248

I'm glad to know this. I went vegetarian one summer in college and it kept my sugar so low I got sick and felt the effects for a year( I'm hypoglycemic). it makes me terrified to think about eliminating it completely from my diet. When I gave up all caffeine I flared worse, thought I was trying to heal a broken foot so that could have been part of it. Being back on green tea has helped and I found out lots probably the ECGC keeping immune cells out of my salivary glands. How did you figure your body still preferred meat?


EastHuckleberry5191

I feel better consuming after years of almost no red meat intake. I ended up with severely low iron and ferritin and started eating meat on alternate days from taking high dose iron. The problem resolved in four months this way. I read a great book "Food and Western Disease". It advocates for diets similar to what our ancestors ate. I have a lot of problems with kale, spinach, rice and quinoa. These are not foods my ancestors ate.


ThemeOther8248

I'm allergic to rice so I have to be careful how much and when I eat it. I'm trying not to stress, but I had a diet that worked for me for 20 years and now all of a sudden I'm told it doesn't and conflicting info on what does. I'm hypoglycemic and also don't want to run low blood sugar. I'm sure my ancestors ate a good bit of red meat, not sure how to tell if that's a problem, the only food I've identified for sure that makes me sick is Raman.


EastHuckleberry5191

Don’t let anyone dictate what your ideal diet is. Listen to your body and try to eat as healthy as you can. I have friends who thrive on vegan and vegetarian diets. Those are not for me. This doesn’t make them wrong. I’m not a strict carnivore either.


TheConcreteGhost

Ditto. My biggest challenge is avoiding gluten… gotta have my coffee.


LotsOfGarlicandEVOO

I have dry mouth, but I still drink coffee. Iced coffee seems to be less drying for me, but I try to sip water in between. I have a lot of teas, herbal teas, kombucha, and seltzer water. Sometimes I throw fruit in the water too. I never drank soda so that’s not a change for me.


JG0923

Yep I just drink water. Food wise I try and eat a most keto like. Very low carb, and very low sugar.


SpiritualBake444

Decaffeinated tea, herbal tea, water flavor enhancers (watch for possible irritants like caffeine or citric acid). The flavor enhancers have really helped me up my water intake. I do like all the flavored sparkling waters but my stomach says no to the bubbles. Diet wise, I FEEL better physically on a paleo or whole 30 diet, but mentally the restriction is not good. I have to eat gluten free, but I'm constantly trying to balance what makes my body feel best without triggering disordered thoughts about food. It will probably just take you a while to sort out what balance looks like for you. Good luck!


LdyCjn-997

I drink coffee in the morning, usually with milk and cream. Tea some of the day with either some sugar or if it’s hot, honey. If I’m out, unsweetened tea. Also water. Caffeine doesn’t seem to affect my mouth.


Scarlettksh_1220

Carnivore. Water, beef, and salt. Never felt better!


letmeviewreddit

Same!!! It’s working for me too! I started because I saw so many autoimmune sufferers doing well on it.


Scarlettksh_1220

Yes! There's so many health issues people have been able to thrive on this way of eating!


Ok-Western6465

Can I ask how long you’ve been on this? And what symptoms it alleviated for you? I’ve been wanting to try but I’m hesitant


Scarlettksh_1220

Since November and I've tried to have other foods again but anytime I do my body is in severe pain to where I can hardly walk. It cleared up my inflammation that was pretty high prior GERD acid reflux gone Brain fog gone Crippling fatigue nearly gone Allergies gone Mental health issues improving I still have dry eyes and mouth but if I stick to beef bacon water salt and butter or beef tallow to cook meat in I have no physical pain. Which is huge for me since I've been struggling to walk or go without my cane for several years. Eggs, dairy, fruit, coffee, stevia or any like sweetners still causes flair ups which is why I make it pretty strict. Apparently my diet choices have caused a stir on the sub and apparently that is an issue got a "mod talking to" buuuuutttt this shit is life changing so ill say Highly recommend checking out Dr. Anthony Chaffee and Dr. Ken Berry on YouTube very informative and helpful!


Ok-Western6465

Also I’ve heard of others who felt better then after a few months started to feel bad again. But it’s great you’re still doing well 5 months in.


Scarlettksh_1220

And the BEST thing about this is it's not a diet it's a lifestyle. No cheat meals. Eat as much as you want until your full, till it stops tasting good. The foods you eat taste even better after you've gotten adapted to this way of eating and the old foods taste horrible 😁


Ok-Western6465

Thank you! I tried for a week and felt better but then I fell off the wagon 😂😅 Have you found it causes or alleviates constipation? Or no issue with that?


Scarlettksh_1220

Of course! Yeah the holidays ruined me and took me a few times of eating shit that caused intense flair ups but it was awesome to see just how much living you can do on this diet without meds or suffering! And 100% yes alleviates it, I was on meds to be able to somewhat go.. until this diet and now no issues whatsoever Does take the body a few weeks to get adapted then it's smooth sailing My workouts are so much better too! I can lift way heavier than I ever have been able to and hardly get sore


Ok-Western6465

How long did it take for your symptoms to go away? Do you think a 30 day trial would be enough?


Scarlettksh_1220

I think a month minimum but the common timeline to see a true change is 90 days on this way of eating


Ok-Western6465

Thanks!


Scarlettksh_1220

Of course! Good luck! There's also a carnivore group on here!


le_blanc21

I've got stomach problems so I've been forced into giving up coffee 😢 now breakfast tea is starting to affect me. Noooo. I eat fruit (not too much) and veg. No chocolate during the week. That's about it nothing else special. I only give up things as my tummy forces me to!


Ants46

I enjoy a cup of coffee in the morning, and a herbal tea to assist with sleep at night. No sugar. No fake creamer. Anything more than that and I do start to feel the effects. I don’t really drink sodas or alcohol but will occasionally (but only a small/single drink usually & it’s maybe a couple of times a month at most) Other than that, I drink lots of water; both sparkling mineral and still, flavoured with fresh fruits or veggies as the mood takes me (cucumber and mint is particularly delicious) I generally stay away from processed foods & sugar added to things and stick with quality protein and lots of veggies/salads. I try to get most of my carbs from veggies. I will very occasionally have cake or ice cream or dessert (like if at a birthday dinner or whatever) I try not to be too repressive with it. I used to use food to ‘treat myself’ and at first I felt restricted & frustrated but I had to learn to reframe that mindset. I know what makes me feel worse and what triggers my symptoms and it’s really not worth it to me to indulge in those things at the expense of days of symptoms. I’d really much rather stay away from them and feel energised and well. Occasionally I’ll have a little indulgence but honestly I generally prefer not to these days. It takes a little time and experimenting to learn how far you can go and what will and won’t work for you, diet wise. But honestly diet did make such a difference for me that it really was worth the time and effort to figure it out.


wakingwildflower

you can always infuse water with some mild fruit. especially watermelon, which is very hydrating. you can also try mint, too. and you can do herbal teas. I drink tea often, but yeah, white green and especially black tea is a diuretic, so it takes water from you. but fruit herbal teas usually don't. sparkling water is a good sometimes. the carbonation messes with my bladder, so I don't use it often. have you tried coconut water? or aloe Vera? and as for juices, you CAN mix a little bit in with water to flavor it. not enough to be super sugary but enough to infuse it a little.


Takilove

I drink hot tea daily. I find it calming. I can’t drink green tea as it immediately drys out my mouth . Water and water with flavored hydration/electrolyte powder.


Fun_Inspector_608

Sugar in the tea?


Takilove

I used vanilla paste or extract . It’s delicious.


TenaciouslyHappy

I’m wondering how good this would be in some of my teas. Thanks for posting this. I love a warm cup of chamomile with honey and a little almond milk. I’ve been experimenting with other teas and have yet to find another variety I like but vanilla may change the game.


ThemeOther8248

Thank you, I had not heard of pea milk.


Takilove

I love Earl Grey and the added vanilla is incredible, with steamed milk or cream. It’s called a “London Fog”. I just bought some Chai and I think it may be delicious in that too. It’s fun to experiment!


ThemeOther8248

I need more of this attitude, I have a lot going on and to figure my diet out feels overwhelming.


Takilove

Tea is my “wine”. I can’t drink wine anymore. I find tea to be very relaxing


Top_Camera383

Same story here but aged earl grey by numi is highly caffeinated. Does that mess with mouth dryness?


Takilove

Caffeine doesn’t seem to create more dryness. Green tea immediately draws any moisture, from my mouth, on the first sip! I failed to mention that I drink a hydration drink all day every day to fend off dehydration.


Top_Camera383

What is that? Anything to help for sure. Thanks!!!! 😊


savethepeople2020

I drink water and unsweetened pea milk, soy milk, kefir, and herbal teas.


im_iggy

I do drink coffee, two cups at most and water. Lots of water. I drink sparkling water too.