Sjogren's Syndrome

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nursestewart
nursestewart Posts: 229 Member
in Health and Weight Loss
Hi! I am a 32 year old female and I am an Women's health nurse. Last year I was diagnosed with Sjogren's Syndrome. Have you changed your diet (GF, High protein, etc) and exercise routine to help you Sjogren's symptoms in any way ? My PCP thinks changing my diet (GF) would help and rheumatologist doesn't think so. I am a pescatarian and I don't drink milk. I occasionally eat eggs. I love hot yoga and hiking. My rheumatologist suggested to not do any exercise that was real repetitive. I used to love running. So, Does anyone on here have Sjogren's syndrome ? What is your diet and exercise routine like? Or, have you even changed your routine at all ? Any thoughts are suggestions would be appreciated.

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  • msmshaw
    msmshaw Posts: 3
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    Hi there, I was DX with SS when I was 35. I am 40 now and can give you a little insight from my experience! Yes, I changed my diet at the advice of a chiropractor. Originally, this appeared to be more like RA and she explained RA patients really needed to be GF. Once I did my own research I saw enough medical and alternative info out there to try it. It has helped! Although you will def find docs who don't agree. My IgA #'s were very high and now they are w/in normal range. I wasn't dx'ed with celiac but wheat and gluten certainly contribute to my inflammation, specifically joint pain, fever, fatigue and vasculitis. That would be my version of a "flare". How were you diagnosed? What are your symptoms and what is a typical flare for you?
  • nursestewart
    nursestewart Posts: 229 Member
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    I diagnosed myself with the help of a nurse I work with. I was struggling with severe dry eyes ( per my MD). To me my eyes felt normal. They didn't feel dry at all. I was wanting to have corrective surgery done and he wouldn't do it until I got my dryness under control. So after 5 years I was frustrated and over my dry eyes.  He suggested once again to try a different medication and if that didn't help we would test for certain disorders of the eye. Well I didn't want to wait. I did some research and based on some other symptoms (cold intolerance, chronic thirst, fatigue and general joint pain and edema ) I decided to run multiple panels of autoimmune disorders. Then I saw a rheumy and he agreed with my diagnosis. I went back to my eye doctor. After a few adjustments to my medications he finally agreed to do my PRK corrective surgery in August last year. YEAH! I don't have many "symptoms". To me they are normal because I don't know any different. I am always thirsty. I am OCD with having to have something to drink. It seems the more I drink the thirsty I seem to become. My right knee bothers me at times the most. My hips and a few other joints occasionally. I have severe GERD and I take Protonix 40mg twice daily. That helps for the most part. If I go a period of time without eating (6-8 hours) or forget to take my Protonix or my probiotics for a few days then I have a flare of gastritis and GERD that stops me in my tracks. I haven't really linked my stomach pain to foods I have consumed. I take 2 probiotics each day. As long as I take them my stomach pain and GERD seems to stay under control. The only relieve I can get is to lay down. I don't have time for that. I was also told my Vitamin D was in the basement so I am taking a Vitamin D supplement every 2 weeks. I don't know many people who have SS. So thanks for your input.
  • msmshaw
    msmshaw Posts: 3
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    I just started vit D supplements too, it has contributed to some fibromyalgia symptoms that have become a problem, although I think it is going to get better (I hope) after my vit D improves. I can tell you for sure, keep exercising, it has been hard for me to start back and I used to teach group exercise!
  • msmshaw
    msmshaw Posts: 3
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    Oh, I have a FB group, Chicks with Flare(s) if you are interested. You are right, this is not common and no one ever seems to know what we are going thru!
  • nursestewart
    nursestewart Posts: 229 Member
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    Thanks so much. I really appreciate it.
  • becky3277
    becky3277 Posts: 64 Member
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    I as diagnosed this last March...UGH! It's not fun at times. : ( I went GF & dairy free and it seems to help.
  • nursestewart
    nursestewart Posts: 229 Member
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    So you can really tell a difference by changing your diet ?
  • Lesa_Sass
    Lesa_Sass Posts: 2,213 Member
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    I do not have SS but do have an auto immune disease. The first rheumatologist told me there was no evidence suggesting diet would help or hurt my pain levels and my disease one way or another. The second and the one I am KEEPING told me that what I eat makes all the difference in the world.

    I went from eating a great deal of vegetarian foods (morning star, Quorn and such) to eating no processed or refined food, eating real meat and whole foods and my pain levels decreased, on days with no barometric pressure, by 50%. NO ONE will be able to convince me that refined and processed foods are okay to eat, NO ONE EVER. I am all the scientific evidence I need.

    I am considering going GF, I just do not know if I am willing to put everything required into it or not. I am already changing so much, I do not want to be overwhelmed.
  • nursestewart
    nursestewart Posts: 229 Member
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    Maybe if you just changed slowly... A small step at a time... Then it wouldn't be so hard to change to GF.
  • youthlaxmom
    youthlaxmom Posts: 18 Member
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    I am going to look for the chicks with flares on FB.
  • tiptoethruthetulips
    tiptoethruthetulips Posts: 3,365 Member
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    An old post, but thought I would bring it to life to see if there are still any members with sjogren's about.

    I was diagnosed with sjogren's just before Christmas 2013 via a lip gland biospy. Symptoms (mostly dry mouth) first appeared April 2013...it was fairly bad for a couple of weeks, so dry I couldn't swallow food without washing it down with water. Since the initial flare and gland swelling I would say the dry mouth is now mostly an inconvenience for me, I do worry about dental as salvia is important in keeping bacteria away.

    I have looked at various forums and I can see that some people with sjogren's suffer quite badly with it plus a range of other issues including other auto-immune disorders, while I do worry that I may progress to this, I am also positive that I won't!

    Since being diagnosed, I have been doing a lot of reading, and found that some people benefited by switching their diet around. I am now mostly gluten free, and I have found that because of this that I no longer suffer acid reflux (great benefit!). I occasionally have bread, and as long as I restrict it to one or two slices occasionally its fine. I find that if I eat bread more often or more of it...acid reflux reappears plus it does not nice things to my bowel. I probably should just cut it from my food list full stop.

    I manage my dry mouth symptoms by using the various dry mouth products - toothpaste, mouth wash, gum with xylitol...and for the occasional dry eyes - eye drops. In consultation with my doctor we decided not to use any medication yet. For the gland swelling and tenderness I use a warm compress occasionally it seems to work well.

    I have referral for a range of blood tests, the referral runs to two pages long (the test list section take up about 1/3 of a page), I am going to give myself three months before the tests and I aim to improve my diet (not just for weight loss but health), lose about 10kilos (I do need to lose a lot more) of fat, reduce bad cholesterol, reduce blood pressure, hopefully reduce some of the inflammation markers etc.

    I have been a little while but haven't been using the tracker though I will start tomorrow after a grocery shop today.

    So hi to anyone with an auto-immune disorder or disease, I hope things are going well for you.
  • ruthreachingout
    ruthreachingout Posts: 5
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    I recently diagnose with Sjogren. Now I thought that Morning Star products were ok. I especially like the burgers made out of chick peas. I am still learning about my disease. I am even thinking about eliminating meat entirely from my diet, except for fish. I would appreciate any advice concerning diet to help me.
  • tiptoethruthetulips
    tiptoethruthetulips Posts: 3,365 Member
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    Hi Ruth

    Some people have success following an autoimmune diet...basically removing foods that are known to cause inflammation for a period of time, and slowly re-introducing them one at a time to see which may cause issues or a flare in the autoimmune disease.

    At the extreme end it is removing wheat, gluten, dairy products, eggs and nightshade veges for at least 30 to 60 days. Don't exchange wheat or gluten for gluten free products as they can be overly processed and can be counterproductive. Re-introduce one at a time (a week at a time) and see if any additional issues.

    There are a couple of SS forums on the web and no doubt you will find a lot of useful information there, the majority of the people who tend to post on them are on the extreme end of SS and suffer a lot of other issues as well.

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