Diet for Sjogren's Syndrome

[jade408]

Venus Williams ia also impacted by this disease. She eats raw and vegan. It is obviously working for her, as she is still playing great tennis, albeit with less energy than in her younger years.

Venus Williams Follows a Raw Vegan Diet to Fight Her Autoimmune Condition - Health

[imajk]

I know this thread is ancient, but hope others google-search their way here like I did.
I have some questions & comments. No real solutions yet, but maybe something from my experience can help.

I was diagnosed with Mixed Connective Tissue Disease about 8 years ago @ age 50, with Rheum. thinking I was mostly presenting with the Sjogren's component. I was also dx with osteoarthritis at the same time.

NOTE 1 (feedback please): Severe acute onset was within 1 month of flu shot. Had had no other immunizations as adult other than tetenus following an injury 15 years earlier. Since then I have personally met a couple others who have had similar experience. If indeed there is a connection, my theory is that shot over-stimulated an immune system already experiencing an undiagnosed autoimmune problem or one that had strong family history of autoimmune disease.

In retrospect, I had probably had this in much milder form for many years. Since childhood, always had great thirst, dry skin. When getting contacts 2x @ age 20 & age 35, Drs had hard time finding a brand/style that would work because eyes so dry (why no dx then?). Also, never much need for deoderant. I also had long history of muscle heaviness and tightness, despite different attempts with stretching programs over the years.

Dryness of mouth & eyes were only what was norm for me. Altho measurably bad as a symptom when I was finally dx & so I should watch for impact on dental health now that I know, they never felt like a symptom. Wasn't until pain that I suspected I needed help. Never felt like eyedrops or biotene stuff had any lasting effect & eyedrops were irritant themselves. I occasionally will take mints with xylitol to stimulate saliva & lessen oral bacteria, but usually just drink lots. Someone here said dentist recommends not too much water due to negative effect on saliva, so may have to reconsider that now.
My symptom at the time of dx, the acute one, was extreme bilateral knee pain. I would have to wrap them in ice packs for my commutes. They never grossly swelled, maybe a liitle/hardly noticeable, but they would get so hot. That was my worst "flare" & lasted @ my knees for several months. After that, pain would cycle through diff joints in seemingly random fashion, but for lesser times & severity. It has now settled into chronic lower-level pain thru many joints concurrently, increased tightness, & frequent pulled muscles & tendonitis (tissues too dry so predisposed to minor injuries?).

DIET: I haven't tried grainfree since dx, but was put on grainfree/almost dairyfree diet (SCD diet) years before for a diff condition (extreme, scary unexplained weightloss). Almost immediately, my health in general was so much improved. I am reactive hypoglycemic, but for the 9 months on the diet, I didn't have to manage my bloodsugar at all. Had increased energy, better mood, less IBS. Pain wasn't an issue at the time, so can't speak to that effect. Diet wasn't difficult to follow motivation-wise because I felt so good, although labor-wise it was a lot of work, making my own mayo, yogurt, baking with unusual ingredients & techniques. No cravings until about month 7.5, only lasted another month or so & never got up to attempting again (though I am reconsidering after reading this thread).

QUESTION: Anybody have experience with how cinnamon affects your SS? Read early on that it should be avoided. I make gallon of chai tea at a time & in bottom of jar, it seems to form a viscous (mucus-looking) cloud, almost looking like the mother in vinegar. Maybe we're supposed to avoid it having same kind of effect in body? It has other benefits (& I like it), so don't want to eliminate if I don't have to, tho I've decreased it. I haven't been disciplined enough to eliminate other factors to test myself. And, in case someone does have info on this, do you know if cinnamon oil vs powder would have same effect?

NOTE: I think it's important to know for those of you trying to find dx or for those with any kind of autoimmune disease: studies suggest that we inherit a tendency toward autoimmune disease IN GENERAL. Meaning, if relatives have ANY autoimmune disease (SS, RA, gout, lupus, certain allergies, whatever), you inherit risk of autoimmune disease of same OR ANY OTHER type. So if dad has gout & grandma RA, you're just as likely to develop SS as either of those two. For those of you with an autoimmune disease, I think this is impt info to pass on to family members should they ever have hard-to-diagnose ailment. I think this is also impt to consider when choosing whether to vaccinate or not- add it into the risk:benefit ratio. I doubt I will ever get a shingles vaccine, for instance (rarely deadly), but, as I get older & my risks & frailties increase, I may consider those appropriate for my health situation at the time.
From someone in same boat, best of health & life to each one of you individually. It makes it so much harder when others just can't see it.

[Mikala43]

I have a collection of autoimmune problems (RA, psoriasis, thyroid..), and nothing cures it, but eating whole / healthy foods (variety of veggies, grains, etc.) seems to keep it quiet. Sure I take the appropriate meds, but diet and exercise still affect my general well being.

I've done gluten free (2 years) no change, I did a keto diet twice (symptoms flared up both times), I've done full vegetarian (did well symptom wise).

No diet changes have every cured, or lowered the symptoms enough to stop critical meds.