When I was first told I might have Sj?gren's(still not too sure I do, with negative bloods and biopsy but not moisture anywhere and little if any saliva.) I read up and jumped on the autoimmune paleo diet. Still not too sure why to be honest. A big step I know but I'm nearly two weeks in and although I'm used to it, I still ask myself why am I doing this? I didn't really have any body pains or inflammation from what I could see, just dryness. I think I need some reconfirmation or something I can't put my finger on.
Can I ask everyone what diets are you on and why?
Thx in advance
GgcJap
You're already experiencing the problem of Sjogren's and other hard-to-pin-down ailments. While going through the process of testing and diagnosis (and second/third opinions, finding doctors who are helpful, etc), you have to do what you can do try to alleviate symptoms and/or fix things inside of you. Diet can help with that, especially as we continue to learn how import the gut is to overall health and wellness.
I recommend sticking with the diet at least 2 months to see how things progress, as it takes time to heal the gut and for the changes to take effect. I don't know what your diet was beforehand - for me, it was bad with lots of junk foods for convenience and laziness on my part (long work days), and had all the indicators of leaky gut and other related issues (GERD/heartburn, prilosec and zantac daily, BMI approaching 40, etc). Prior to that, I was sticking with a paleo-ish diet and doing well for several years. Once I was hit with the first wave of brutal dryness and could start eating again, it was right back to a strict paleo approach that I knew worked. Three months or so later (with regular exercise, too) I'm down to a BMI of 29 (and still falling), haven't taken prilosec or zantac for two months, no longer take my meds for high blood pressure.
Is it helping with my dryness symptoms? I cannot truly answer that, as I've changed quite a bit of things in the past 3 months (sleep habits, eating habits, exercise habits, pilocarpine daily for much of that time, ubiquinol daily, etc). I do believe it helps at a base level, given the healing of my gut, the weight loss, and normalization of blood pressure.
As with everything in life, and especially with medical issues, your mileage may vary, but since you're already down this path for a few weeks, you might as well continue for a bit longer before abandoning it. It gets exasperating, but many of these solutions take a while to settle in and make a difference.
Hi Pete 0211,
I was also eating a lot of unhealthy food before this, lots of long stressful days at work and also drinking a lot too, not a care in the world so to speak. I have read a lot about healing the gut and I like everyone else am wondering if that is half of my problem. I'm going to continue with the diet for a month before reintroducing slowly. My stomach makes noises but I don't get any real pains didn't before I started the diet either. Although I did change diets pretty quickly.
I'm yet to start exercising regularly. What do you do for exercise. I was thinking of just walking to start, I can't run due to the dry mouth.
This is a very slow thing to understand and I guess that gets me frustrated at times. I want to understand everything now, I want to be able to make educated decisions about my health instead of having to half guess. But that's not the way this sickness is.
Someone was right when they said patience is a virtue.
Thx Pete0211
GgcJap
Just be very careful. I got worse after trying to eat healthy. I have MCAS (mast cell activation syndrome) and salicylate sensitivity...so eating foods high in sals and high in oxalates made me crash.
Sjogren's in on the back burner now and not the worst of my problems. Just be careful.
I would suggest eating "healthy" but not going overboard.
I exercise at a cardiac rehab center and they have a great "ergometer bike" that I love.
I started exercise simply by walking about 25 minutes to start with. I then starting increasing my pace and time spent, and also jogging at intervals, up to the point where I was jogging / running for 2/3 of the time and walking the other third, for about 45 minutes or so. One knee recently got sore for a few days, so I took a short break and have gone back to simply walking at a quick pace for about 30 minutes. I've also recently added some simple weight work with dumbbells and a bench.
Just take it slow and steady to start. Ensure you get some stretching in (or yoga), have good shoes that fit (first day I started I created a huge blister on the back of my heel - ended up with a new pair of running shoes and two pairs of socks to ensure it didn't happen again), take water and whatever you use to help your mouth (I chew gum and carry a bottle of water). I'm lucky that in the mornings for the past few summer months that it's typically very high humidity, so running or pushing a very fast walking pace (aka - gasping for air through my pie hole) has not been a problem, and actually felt wonderful. Now it's cooler and less humid it does have some effect on my throat.
Also, be sure to eat a little more on the days that you do exercise to ensure your stay healthy and don't lose weight too fast. I have gotten into the habit of tracking everything I eat, and keep track of macros (carbs/fats/proteins) and key micros (potassium, as I've had a recent history unrelated to this of low K, calcium, due to recent parathyroid disease, sodium, and a few other key vitamins and minerals). You can track too much, so I'd say just stick at the calories in / out and macro levels and you should be ok at not overdoing it. It is nice as you can also log symptoms and other aches/pains and track what you've eaten and other trends.
Thx jazzlover,
I am trying to be careful, I haven't felt any worse at this point of time but TBH im not sure if I feel any better either. I was 78kgs(moderately overweight) when I got sick and in the space of 2 months am now 66kgs. Apparently my perfect weight is around 58~60kg(height 162cm). I havent been that weight since high school. I want to eat healthy and continue my diet but if it gets to the point where my weight doesn't stabilize Im thinking I will have to pull the plug on the diet. I also want to start exercising again but Im scared that too will only rob me of weight. Walking or Ergometer bike sounds good though.
I wont go overboard. Only two more weeks and I can start adding food back in again. I cant wait to be honest. Glad to hear Sjogrens in on the back burner for you and hopefully I`ll be able to do the same thing in the not too distant future.
Thx Pete0211
Im thinking about walking or electric biking at the moment. My mouth is way to dry to do any running at the moment even with Salagen. Im not sure when I will start though It probably wouldnt hurt health wise. Its starting to go into winter over here so Im also worried about the effect on my breathing, nose, throat. Not just while exercising either. How do you track all your food?Ill have to research what macro levels are before I try to track that. :) Ive tried counting calories before and it was really difficult. At the moment I have a food diary where I also log my symptoms and any other relevant information.
I dont want to speak too soon but at the moment I dont have any aches and pains so I guess im lucky there. I do feel a little fatigued every now and then but not much and I sort of relate that to my lack of sleep or broken sleep to be honest.
Im sure as time goes on I`ll get myself into some sort of pattern and things will be a little easier and a little less complicated. I guess as with a lot of things related to Sjogrens I just have to be patient, slowly slowly does it.
GgcJap
Yes, DO continue to walk or do other light exercise .. we all need it.
I'm just saying the SJS is on the back burner because my other issues (MCAS) are worse for me than the SJS .. not that the SJS is good.
Hope you can find a good balance.
Hey GcgJap,
I always chew gum while exercising also. It may or may not help, and you might need to find "your" gum. For me, my mainstay is one called Icebreakers Ice Cubes (grape flavor). It has additional sweeteners that I'm told by the docs that I should avoid (maltitol, mannitol, ace k), but unlike the supposedly "all zylitol" gums (many of these have other -ol type sweeteners), these stay soft, and the flavor lasts for more than one or two bites, so they work for me.
I use an online application (with a phone app companion) named Cron-o-Meter (cronometer.com). The free version is more than good enough, and it allows you to make your own recipes and add your own food information. "Macros" are simply the major nutrition types - carbs, fats, and proteins. The app tracks much more than that, but you do not need to jump down that rabbit hole. There are plenty of others out there, too (myfitnesspal.com is very similar but doesn't jump down the micronutrients hole).
Hi jazzlover,
I've decided to start walking from today(if it doesn't rain that is.) :)
Sorry for the misunderstanding, unfortunately with the brain fog and my generally poor English this happens more than I would like. I hope things take a good turn for you. :)
Pete0211
I've been chewing a lot of gum in the past few days, it is the xylitol type but it seems very sweet which leads me to believe maybe there are other sweeteners in there too. Which would defeat the purpose of my AI diet. The hard thing for me is all the labels are in Japanese and although my Japanese is ok it's still study reading labels.(something I've never really had to do up until now)
Inmight have a look at chronometer or another application. I do still have my food diary but something I could carry on my phone would be easier that's for sure.
GgcJap
Nice to chat with you GgcJap! :) Good luck with your diet!
jazzlover,
Thank you and same to you! :)
GgcJap