Trying to understand...

Hi Pam, those specific symptoms only happened that one time I tried Piocarpine. The hand and arm swelling seemed to me an allergic reaction to it.

Thanks for your reply Morelia, I wouldn't mind as much if I could find meds that alleviated my symptoms, but I can't. I just underwent an endoscopy of the salivary gland to remove blockages (very painful and expensive procedure!) and I have chronic eyelid swelling in one eye which causes me much embarrassment and nothing has alleviated it in the least. Also the very idea that my cells are constantly being damaged by this disease disturbs me alot.

As far as the diet you recommended, so glad to hear it has worked for you! I can't eat meat for other reasons, but I tried a gluten-free diet for a few weeks and I had no improvements in my eyelid condition. I am trying to reduce stress, though right now it's difficult since I'm newly diagnosed and still dealing with the revelation.

I'd consider taking anti-anxiety meds to calm down if I could find research implying it would aid in calming down my symptoms as well.

Well, it's been 3 weeks now on this Paleo diet (no gluten, dairy, sugar) and I've found absolutely no relief whatsoever in my symptoms. I've only lost even more weight which is a very bad thing for me. I don't really see any point in continuing.

Thanks Sue, I've tried going gluten-free for a few weeks but to no avail. I consume sugar only in very moderate amounts as is and I don't eat meat. My main concern right now has to do with recurrent eyelid inflammation. Seems to happen because of fluid build-up that one of my eyes is failing to drain.

Sue

You say that Morelia is the only one talking  sense. May I ask you what is your advice about restricting sugar and dairy products . I have a vitamin D deficiency disorder and also take warfarin. How do I diet when I know that the heart needs a certain amount of carbohydrates to function? I also have reflux I made som stew using green lentils,chick peas, black eyed peas, onions, potatioes and chicken breasts, carrots and got terrible indigestion.

Why?

I have a gluten, wheat, yeast, soy, dcows milk intolerance.

I would be grateful for your comments.

I feel very tired today as well and went back to bed.

Thank you

Jean

What are plant sterols Sue?

Sounds interesting Sue, thanks

I agree with Sue, that it will take time. I can only imagine how distressing it must be to be dealing with inflammation in your eyes. However, you can change your diet, and continue to look for ways to alleviate your immediate discomfort. The reason the diet change is so important is that you want to eat foods that will be easy for your body to digest, which typically are vegetables and fruits. You need to eat "good" fats such as those you find in nuts, avocados, coconut oil. It will be helpful to figure out which foods are okay for you. One way to do this at home without the help of a doctor is to eliminate the foods most likely to cause problems for 3 weeks. After 3 weeks, introduce the food items (one at a time) for a day or to and observe how your body responds. I do not follow a strict paleo diet and do eat some brown rice and buckwheat, and find that these do not seem to cause any problems for me. Considering your unique dietary requirements, you will probably just need to figure out what works best for you, but in general, most people with autoimmune disorder will benefit from avoiding wheat, sugar, dairy are three of the biggies. I was lucky enough to find a good naturopath who had been helping me find my way through this vast ocean of information. By the way, when I had a skin reaction around my eyes with itching and some swelling, I found rubbing a little coconut oil on my skin to be soothing. Hope you feel better soon.

So you don't take any conventional meds for your condition?

Thanks Morelia, do you know if quinoa is okay to eat?

Yes, of course quino

Oops! Hit wrong button. Was going to say yes of course quinoa is OK to eat. It's highly nutritious - a real super-food. I have to say it doesn't suit me personally - causes feelings of bloating - but we're all different and it certainly isn't harmful.

Thanks Lily, seems to be okay for me.

Quinoa is good. You can prepare it like rice and I like to add some broth to give it more flavor. Once it's cooked, you can make all sorts of dishes or eat it plain like rice. I think it is important to recognize that this is a new adventure in eating. That you will learn about new foods and learn to enjoy them. Some of my favorites are sweet potatoes, Brown rice pasta, buckwheat. Sometimes we eat regular potatoes, which are not as nutritious as the sweet potatoes. Vegetables should always be the star of your meal. I often make salads (lettuce, tomatoes, cucumbers, Bell peppers)and eat with salmon and avocados and sprinkle pumpkin seeds, ground up flax seed. I make all my own dressings to make sure there is no sugar, but I can be lazy and sometimes I just squeeze a lime on my salad. I was recently shown a study that showed a possible connection between processed salt and autoimmune disease. (Sigh) so now I make sure I use safe salt, like sea salt. Coconut milk has been a wonderful addition to my diet. I avoid all oils except Olive oil, avocado oil, coconut oil (there are other healthy oils but can't think of what they are right now). Goodness, there is so much information, that's why it's so good to see a naturopath. I think because there is so much you have to figure out is the reason many people give up or don't want to try, but it has been great for me. I intend to continue eating this way, and I told myself I didn't need to give up anything forever, simply eat healthy most of the time. It's not difficult anymore and it's enjoyable. I'm healthier too and I believe eating this healthy way will help anyone with an autoimmune problem.

That's great Morelia, you give me hope!

Were you also diagnosed with RA?

Sounds like healthy food can be tasty as well!

Rheumatoid arthritis was my main complaint when I went to see the doctor. But the doctor gave me a diagnosis of Sjogrens and said that RA often is a problem for those who have Sjogrens. That hasn't been a problem for me since my first flare up. I do notice that if I eat sugar two or three days in a row, I would start experiencing aching in my joints, so as long as I eat healthy I have few complaints. Sometimes if I eat foods that aren't great for me, I eat pickled foods or digestive food right before to aid my stomach in breaking down the foods it can't handle by itself.

Yes, it can be very tasty. Today I had lunch with a couple of friends and we made a quinoa salad (sweetened a little with chopped dates and other chopped veggies), a creamy Cajun chicken, and a green salad with pears and a homemade vinaigrette. Was delicious and satisfying and good for my body. It's like learning to cook all over again because I have had to learn how to use new ingredients. Fortunately the internet is loaded with recipes that are sugar free, wheat free, and dairy free.

Hi Morelia

I have Sjorgrens as well as xubclinical hyperthyroidism. I have 20 nodules on my thyrpod. I am gluten, wheat, yat, sy and cows milk intolerant and on day 7 of a G\f diet.

I have joint pain, stiff and aching muscles, would acupuncture help at all. I also have Plantar Faciitis. I feel I cannot stand this another minute. I have been thru the dry eye bit but think it  is starting up again bit not as bad. Any tips ould be most welcome.

PLEAse.

Jean

 

Hi Jean are you or were you double jointed? Yes it's common! I had steroid injection and so did my son a year ago! 

I've read that if you have mixed connective tissue disease you may have a mixed bag of autoimmune diseases and then you often have Sjogren's with RA.

Pickled foods help with digestion?

What substitutes do you use for milk and sugar in your coffee?

I don't think so but it is possible. Jean

You are the only one talking sense and I agree 100%. Get the diet right and adopt a positive attitude. It really is the only way to help SS and alleviate auto immune symptoms. I'm drug free too except for meds for my graves disease but they are slowly being reduced. The way forward is food because you are what you eat.

Hi Shira,

Brace yourself because you probably won't like what I have to say, but anyone with an autoimmune problem should be limiting or eliminating coffee from their diet according to the books I've read about autoimmune disorder. Fortunately, this was no problem for me because I already do not drink coffee. When I had my blood tested, however, the results showed that I had a high sensitivity too coffee beans and should avoid them. There is no easy way for the transition to a healthier diet and I think the way in which you switch may be as varied and unique as each individual person. What helped me was to imagine that I was feeding my body and starving my illness. If I eat sugar, I'm feeding my illness and starving my body. If I eat fruit, I'm feeding my body and starving my illness. It's super important to make sure you are giving your body plenty of nutrients, but they should be the healthy options. I like fresh and dried fruit as a sugar substitute. I'm okay with a little honey every once in a while. You could try Stevia, which is a plant derivative and safe as long as it is not mixed with anything else. Make sure you read the labels. I just don't like the after taste. Coconut cream is a fantastic dairy substitute.

Sue,

It's so great to hear that the diet is working for you too. It has made such a big difference for me. At last I'm really beginning to enjoy the natural flavors in foods and have collected a handful of favourite and delicious recipes. Before I was diagnosed with Sjogrens, I doubt anyone could have convinced me to change my diet. So I like to be on the lookout for people who felt the way I did when I first found out--scared, worried, depressed and hoping for some other route besides medications. It's awesome to hear other success stories!

Yes you should avoid coffee, tea, caffeine drinks, if you have SS goes down the Psoriasis line milk, eat nuts, some say no red meat, so chicken, fish, plenty of green vegetables, orange vegetables, peppers, so sweet potatoes rather than ordinary ones, Mediterranean type diet. There is a debate on fruit  but as I read those with RA need extra fruit and I love fruit and my Consultant says fruit is fine too I have no intention of giving it up! I have coffee but iced I can't drink it hot! If I'm ill the first thing I give up is coffee. I drink Roobush or herb teas. Nuts I put into porridge as oats are better than what if you have Coeliac. I am negative to Coeliac as I have colitis Chrohn's which goes down the Psoriasis line and so on Sulfasalazine my life of mouth ulcers stopped! 

Wheat sorry!

Dear Morelia

Please could you send me thh details of this diet. I am gluten, wheat, soy, yeast . cows milk intolerant and have a vitamin D deficiency disorder .

I take warfarin so  VIT K is all right in moderate quantities each day.

 

I've only been gluten free for a couple of months, although I've always been a healthy eater.  However since cutting out gluten I've had more energy and my saliva is so much better (I've already had my submandibular removed due to stones). The one thing I have found is that you have to do this alone.  Do your own research and stick to the diet.  It's not difficult with the right mindset.  If you are intolerant to anything - DONT EAT IT!  Simple really and there are many foods that will replace wheat.  I'm doing a tabbouleh tonight with millet instead of bulgar wheat.  Plenty of substitutes and some more tasty than the standard version.  I agree with you that if you tell yourself the food is medicine it soon becomes a way of life.  I've had SS all my life and only diagnosed in 2000.  I wish I'd known a long time ago how much relief can be found through diet adjustments rather than taking, potentially harmful, medication although personally I've always refused the meds.  Not much can be done about stress flare ups as we all get stress but get the diet right and it's easier to cope.  BTW.  I have SS, RA, Lupus and Graves.  . 

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Hi Jean,

I can give you the names of some books I have found helpful and that explain in great detail why some of us are more susceptible to Sjogrens syndrome and what diet works best. These have been helpful to me. They also include much in-depth scientific explanations that I find helpful in understanding why I and how I ended up being diagnosed with Sjogrens. Having said that, I think the best course for anyone is too find a good naturopath who will be willing to work in conjunction with your doctor. Your doctor should also be willing to work with the naturopath. If there is no naturopath available, you can read up and learn all you can and then determine which diet plan will work best for you. I suspect you may need to reduce the grains in your diet or even stop eating them as part of your plan, but I can't be sure. I seem to tolerate some beans and lentils, but I eat them on occasion. I have been advised to stay away from red kidney beans. Honestly the safest food are vegetables--you can eat as much as you want of those. There have, however, been some studies linking "night shade" plants to problems for those of us with SS, so like I said before, you need to tweak your diet plan to fit your specific diet needs. Also, it is important to include healthy fats in your diet and there is just so much information to share, which is why I prefer to tell you about the books. No two people are alike, and what might help you may be so different than what helps me. I do wish you the best of luck and hope for a thorough recovery for you. I am happy to answer any other questions if I am able to.

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As far as stress I found some relief when I was suffering years ago from another illness through hypnosis tapes, biofeedback sessions and medical massage. May be worth a try to renew all that with this as well.

Good aqdvice Shira.

Western medicine appears to be all about pushing as many drugs on us as possible!

Has anyon tried acupuncture for pain control oor reduction of signs and symptoms in flare ups of SSr know of any websittes for alternative medicines/therapiies?

Thanks

Jean

I had tried acupuncture for another problem I was having and it didn't help (10 sessions) but you never know, it's probably an individual thing.

Didn't help me either!