Diet for Sjogren's Syndrome (exercise, excess, cancer, blood)

[ladymom43]

Help!! I have recently been diagnosed with Sjogren's Syndrome, and someone suggested to come to this forum, but I can't seem to find if there is a Sjogren's community out there, or is this forum just about food? I don't know anyone who had this and I know by previous experience, joining a forum to "talk", is great, when you think you are the only one in the world. So, if someone could just direct me to a Sjogren's site, or is this it? Thanks. Linda

[movingdown]

Try sjogrens.org

Lots of info on there....

[DeltaDelta]

Originally Posted by Marty59

A very quick note that my 'dry mouth' started after taking a drug called 'Omeprezole', prescribed for Oesophagus Reflux. This caused my already problematic salivary glands to totally seize up and swell, to the point that the surgeon I was referred to insisted I had Lymphoma! I was convinced it was the drug, so refused further biopsies when the first one came back 'inconclusive'. Gradually my dry mouth problem was joined by 'dry-eye', then with dry skin (I've aged 10 years in the last 2), aching hips after sitting for a while, all of which made me wonder if I were ageing too fast and was unlikely to live to 'old bones'. The final insult was being unable to make love with my husband because of dryness 'down there'. It left me wondering what else was drying up within my body! Reading your blog has been a revelation to me, and I just want to thank you so much. Knowing the problem has helped enormously even if it doesn't actually solve it. My point in writing is to warn people about drugs they are given by well-meaning doctors. It may be that the Oesophagus problem was the start of 'Sjogrens Syndrome', in which case I owe the doctor an apology. But I wish so much that I had known about this before I took the drug.

For the dryness 'down there' you mentioned - Use Coconut Oil, natural and is best stored in a cool place
to solidify. Use as required, because it safe since it's edible, it is a great lubricant.
Not sure what is wrong with me, I'm gluten free due to stomach cramps.
whats made me come here is tests proved negative for Coeliac. now my eye has meen weeping for 3 weeks - I'm putting Castor oil in as seen on a webiste.
Oh dear - all we can do is help each other. But the coconut oil is fantastic, safe and easy, and great for the skin too.

[jaysvasan]

Hi Myfanwy,

Thanks for all the input.

I was diagnosed with Sjogrens almost 3 years ago. I take a pill called Pilomax twice a day before meals. This helps produce saliva and keep my eyes from drying up. I also take Calcium and Vitamin E at night. I daren't go out in the day without my dark glasses especially to avoid dust particles getting into my eyes. Yes, the sun too can be pretty harsh as I live in India. I'm a vegetarian and am on no particular diet. I have lost a lot of weight as I'm not able to eat most foods.....like between-meal-snacks.....sandwiches, toast, chips, biscuits and the like. I never was very fond of drinking water, but now I need to make a conscientious effort to do so! I have been going to the dentist more often now....my teeth have become very sensitive and I've had a couple of root canal treatments in the past 2 years. But otherwise my life hasn't changed much....except that I'm not able to sleep before 12 or even 1 am.

My regards to all Sjogren pals too.

Regards

Jay

[welshgypsy]

Hi
All these posts are so helpful. My husband was told he had Sjogren Syndrome a few years back when eye tested. We thought nothing much of it at the time just nice to know that his eyes were really dry not just his imagination.
He is always itchy, especially after drinking beer and hot often. He has never sweat or had body odour, in fact he can wear the same socks every day for as long as he wants-I just thought I found a nice man that doesn't smell like the rest of them!
The last few weeks have been really bad with him unable to talk and swallow at times,he is so dry, his eyes are in pain.etc etc
It is Tuesday today, on Friday night he became so ill he was panicking, he was scared for his eyesight and what the future would bring if he had to live like this. We live on a little tropical island in the South Pacific so there is not many wonder doctors here.
After speed reading on the net Saturday morning and talking to the pharmacist, we immediately put him on a strict diet.
Since Saturday he is off-wheat/gluten/grain/pasta/starch/carbs/dairy/caffeine/alcohol!!!!!!! It isn't that hard when you feel so ill and stressed.
We are now on Day 4 and although we shouldn't get too excited just yet, we can't help it
Please everybody try this because it could change your life!!!
His eyes feel silky and are no longer red or sore. Sometimes he blinks flat out as says there's a shower going on in his eyes!His mouth is still a bit dry but able to talk and swallow with ease and each day more saliva. His chronic back pain and sciatica of 3 yrs, are completely gone (he is on waiting list for back surgery), he is sweating and has BO! So much that he can't keep his jandals on. He is having times when he is overwhelmed with feeling fantastic (probably the detoxing) He even looks different. The back pain and sciatica were perhaps caused by bloated bowel for many years from gluten intolerance, as his bowels are also working as they should for the first time since he can remember. We think it is the gluten however he is not prepared to take any chances so will continue like this for a month, then introduce a few things back into his diet slowly and see the effect, no beer or sammies ever again-there isn't a lot of options here for alternative diet but just meat/egg/fruit and veges is fine for us if he can be this well. Please pass this around and also to chronic back pain sufferers, just in case they have a gluten intolerance too. Thanks to Mfanwy-my husband is Welsh too and your post helped

[Preciousellis]

Looking for a good for sjogren's sydrome

[Nana67]

Hello, I can't thank you enough for posting this. I was diagnosed with sjogrens, rheumatoid arthritis and lupus all within the same appt. with rheumatologist after years of suffering. I am beginning this diet tomorrow.
Stay tuned on results !

[NancyMills56]

I developed Sjogren's in 2007 from burning 26 year old treated lumber (our old deck). I lost half of my hair and came down with Peripheral Neuropathy in 2 months. I was finally diagnosed with Sjogrens at Mayo Clinic with a lip biopsy. I have found that raw vegetables make the Sjogren's worse. I have read that cooked vegetables is best with this disease. Try it and see if there is a difference.

[nap12]

I have only just read this thread

To state first off this is for my mum she is a Severe Sjogren's sufferer, Arthritis sufferer and Raynauds syndrome sufferer.

As for diet she drinks plenty of water but anyone doing this be aware your sugar levels will drop and can make you feel like passing out. You must eat sugary foods if not them try honey.

My mum can not eat any meat even the slightest bit of over cooking makes her choke and she has been known to turn blue.

Blending food to death does not help her as it makes her feel sick but the food is also taste less.

She has has so much dental work done due to the Sjogren's syndrome.

Her Raynauds prevents her eating very cold foods but she has to eat some because she wouldn't be eating at all if she didn't.

She is on all liquid medication as she can not swallow tablets.

Due to the Sjogren's syndrome her joints are starting to miss a line too.

She has lost so much weight it's upsetting to see her like she is. She tells me she doesn't feel like eating as the food has no flavour but she struggles to find things to eat.

I wondered if there are any other severer suffers out there who have found this diet helpful.

[nap12]

Hi everyone

First off this is for my mum

My mum has had Sjogren's Syndrome for 28 years or more
She has Raynauds Syndrome and Arthritis

She has had so much dental work done and her joints are now becoming out of line. Mum has so much pain everyday she takes liquid medication as she can not swallow tablets. To see her loose so much weight is so upsetting for me and to hear her say she doesn't want to eat because food has no taste any more is worse.

Mum drinks plenty of water but anyone doing this should be aware that your sugar levels can crash making you feel as though you will pass out. Try and eat something with sugar in or take honey to boost them back up again.

As for diet she can not eat even slightly over cooked meat and blending things to death makes them taste less and makes her feel sick.

As for cold foods she is supposed to avoid them because of the Raynauds Syndrome. Mum has to eat some because it's the only thing she can eat at times.

I just wondered if there were any other Severer suffers out there that have tried this diet and does it work ??