I have had SS for about 3 and 1/2 years -----started almost overnight when I was 60. Other than a dry mouth (sometimes unnoticeable, other times persistently annoying) I have no other symptoms of which I am aware. I feel fine and try to exercise (yoga 4x per week, lots of walking) and eat well-----no processed foods, no red meat or pork (lots of fruit & veggies), no sodas, very little alcohol. I live in a small town and had never talked to anyone with SS until this past weekend and finally met a woman with SS. She was amazed that I don't follow any diet----- amazed that I consume various foods, among them whole grains (my morning oatmeal mix), corn, soy (salad dressing, etc), and dairy. She really made me doubt myself and since then I have been reading a lot of articles online. The results are mixed on these foods and I am not convinced that they are harming me in any way. Can any of you share your experiences?
Hi Maya,
I am 67 and have had Sjogren's for quite a few years, although I think I had some of the symptoms as far back as my teen years. I also have fibromyalgia. Since gastrointestinal problems often go with Sjogren's due to the lack of saliva, many people (me included) have celiac-type symptoms as well as esophageal reflux, difficulty swallowing dry foods, and gas and bloating. My advice is to continue to eat whatever you can tolerate. Your body will probably let you know when it's time to modify your diet. I had to eliminate gluten from my diet a few years ago and that pretty much relieved my lifelong IBS problems. Diet may simply not be a problem for you right now, so listen to your body!
We are all individuals.
But, I?ve discivered through trial and error some things re diet that have surprised me.
I seem to be very sensitive to dairy and sugar.
Some cheeses are ok.
Most dairy is absolutely NOT ok including yogurt. I?ll get bloating and headaches, sometimes migraines.
I over react to sugar. Bloating, headaches, string cravings and abnormal weight gain.
Gluten/wheat is mostly a no.
I can tolerate a small amount. Limited seems ok. More than that and all of the above starts...bloating etc
And if I keep eating these foods for more than a day or two , I?ll get hit with fatigue. Sometimes creepy fatigue.
Soooo...I?ve learned the hard way that sugary foods, most dairy, wheat and gluten are extremely limited for me.
I do eat meat. I?m trying to eat antibiotic free etc and explore the best quality meats out there.
I have seriously considered reducing red meat.
I eat a LOT of vegetables.
I personally believe when I?m consistent with eating like this (which is quite simply based on what I have observed is best for me) I feel better and lose weight or at least don?t gain as easily.
I suspect for those of us with autoimmune illness diet likely has a powerful influence on how we feel. I know for me it can strongly influence my energy levels, AI symptoms and weight.
Thank you both for your replies. I appreciate it....... what I'm hearing is that while I might feel good right now, I need to be alert to changes in my body and how I feel. And if I do start to experience changes, my diet might help alleviate those. Thank you again!
Hello Maya, I've had Sjs for at least 8 years and been down various diet routes.
The first foray began when a wholistic nutritionist told me to stop eating corn, wheat, soy, and dairy. Oddly she told me to eat meat three times a day. I nearly starved and was more than cranky and did not see much change. It turns out I was anemic, but eating meat didn't help because it turned out I had anemia resulting from having an autoimmune disease.
It also turns out the I am gluten intolerant, but I figured that out from trial and error (I get one hive every time I eat gluten, one, very itchy hive, weird, but my PCP tells me she has at least one other patient who has this same reaction). I do eat corn sometimes and some soy, I just don't overdo.
I asked my rheumatologist about diet, his wife is a dietician and he said there's no magic bullet. I just read that one can stop a food for three weeks then try it again and see what happens. An allergist once told me though that you need to try and retry a food because you could be reacting to something other than to it.
No simple answers here, I just suggest trying to eliminate things and reintroduce them then see what happens.
I have never followed anything but the C Diet: See it, Eat it.
I was tested for Celiac Disease by my neurologist and it was ruled out (I have a rare copper deficiency as well as iron deficiency anemia). This was in 2013.
Then last year in early 2017 I developed all the symptoms of Irriable Bowel Syndrome - Diarrhea . I self diagnosed and self treated with the FODMAP elimination diet. It is VERY strict, based on the biochemistry of the small intestine.
Immediately I was 80% better. I still had intestinal issues, and eventually was diagnosed with Small Intestinal Bacterial Overgrowth (SIBO) in March, with testing, and treated with antibiotics. Now I'm fine.
I'm testing forbidden foods again, and so far so good. But I'm very leery of going back to that misery.
The SIBO is probably the result of neuropathy in my small intestine. I have neuropathy in many places due to the attack of my Immune System on my organs/systems.
I will probably have a build up of SIBO again, and then will take antibiotics again. The antibiotics (2) made me very miserable, but now I feel better than I have for a year.
Ain't we got fun!
Regards, Elaine
Quote from: Carolina on April 22, 2018, 05:45:32 PM
I have never followed anything but the C Diet: See it, Eat it.
;D I have to say, this is very gratifying advice... I am on this plan too! I tried the AIP diet, cut out sugar, red meat, processed food entirely for a 6 months period and lost roughly 20 lbs. I started out a 175lbs for a 74 Inch tall frame... so I ended up a bit too skinny. I noticed no corresponding drop in symptoms, but I did feel better by eating clean. There is a saying, half of feeling good is looking good lol. Any who, I added things back one at time... didn't feel any worse. I am back to the weigh I started, and enjoy being alive more just for the fact that I enjoy what I eat.
Carolina I have just reached the end of my rope. I too was tested for celiac years ago and it came back negative. But my gastrointestinal issues ...which started decades ago but were very infrequent....IBS-D... would just appear out of no where and then go away for months and months...has now reached the stage where I am afraid to go out in the morning. I am afraid to eat anything bulky in case it flares up the next morning if I have somewhere to be. Once everything ?clears out? I am fine the rest of the day.
Thursday is my annual physical and I am going to ask my doctor how to figure out what is going on. I eat little gluten...normally avoid it. I do have a daily yogurt and I am suspecting the daily coffee. (I think that will be the hardest to give up.).
So the FODMAP worked? Thanks for the suggestion. I so hope it does because I am getting super depressed over this. And my husband is not sympathetic. He thinks I am antisocial because I do not go to the local coffee shop with him to yak with friends in the early morning. I say I prefer reading the paper in peace but really it is I do not want to be caught out with an attack.
This is really no fun at all.
Dear Navigator,
When in the worst of the IBS-D, which started when I was 75!, I also couldn't tolerate lactose or wheat (never mind gluten). FODMAP elimination diet is based on the biochemistry of our small intestine, but still isn't completely accepted as true science. However, it worked for me.
Except that I also tested positive, a year later, for SIBO, which may have been the problem, all along. Not IBS-D, but SIBO. However, FODMAP is also recommended for SIBO, in addition to the antibiotics.
Ask about SIBO and the testing (which is very easy: 1. nothing after midnight, not even water 2. drink a glucose drink 3. breathe into a bag and collect your breath in small tubes.). If you have SIBO, you take antibiotic(s) for a 7-10 days, and it's gone. Until it comes back and then you take antibiotics again.
I still avoid wheat (rice noodles are great!) and lactose (yogurt, ice-cream, milk, can all be purchased easily without lactose). And NO BEANS, of course.
My guess is that the 'inflammatory' effect of most foods is minor compared to what our Immune Disorders inflict on us when rampaging. But that's just my opinion.
My entire food saga is purely related to my gastric issues.
Regards, Elaine