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Old 06-18-2008, 10:23 PM
 
Location: Edmonton, Alberta, Canada
22 posts, read 371,288 times
Reputation: 124

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I stumbled upon a diet for my Sjogren's Syndrome and I wanted not only to share it with others but also to invite anyone else with Sjogren's to share what they have done to manage their condition(s).

Since I began my "diet" I feel phenomenally better. The diet is simple, I eat no grains. No wheat, no rice, no corn, nothing - nada! I do eat all manner of fruit, vegetable, dairy and protein. I eliminated caffeine from my diet. I'm not a smoker or a drinker so those aren't a problem. As with all Sjogren's patients, drink plenty of water.

The philosophy behind my findings is like Celiac Disease (your body's reaction to gluten) causes your body to not be able to absorb vitamins and fluids properly and so you get all manner of other problems. I tried gluten free and it helped a bit, but it wasn't enough that's why I went completely grain free. You should also be aware of the hidden grains in condiments and other processed foods.

About two weeks after starting my diet, I began feeling so much better, I sleep better, I drool when I sleep, I don't feel sleepy after I eat, and my eyes aren't itchy!! Who would have thought drooling would be a good thing? More than anything else is my brain fog has cleared. For a while, I thought I was entering into early dementia and now that awful feeling of brain fog is gone!

Whereas before my diet I couldn't eat eggs and dairy because they caused me a lot of upset, now neither is a problem for me. I was disinterested in food before and now, I truly look forward to my meals.

I'd like to hear from others with Sjogrin's Syndrome - what have you tried and what has worked?
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Old 07-12-2008, 01:18 AM
 
5 posts, read 273,001 times
Reputation: 31
Unhappy Diet for Sjogren's Syndrome

Myfanwy I apologise for gate crashing your thread but I am unable to find my way around. I google Sjogren's and came to this site but have come to a full stop. If anyone is reading and can redirect me I would be very grateful.

I am very newly diagnosed and am totally ignorant.

What I was wanting to know about is mainly my hair and nails. My hair is so dry I have to wash it every second day (even though my hairdresser says it doesn't need it and I am drying it out.) It is so unbearably itchy and dry the water seems to help.

With my nails they split across but way up on the nail bed. I have just been thinking maybe this is also part of the problem.
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Old 07-12-2008, 02:54 AM
 
13,134 posts, read 40,619,551 times
Reputation: 12304
Thanks for posting that Myfanwy.....as i to am intolerant to grains. I love Oatmeal as it's the best food i have eve reaten for energy to Bodybuild and do high intensity aerobics but it burns my intestines so bad and the acid reflux was just too tough so i gave them up and i never have that problem unless i eat grains again. Now it's Bananas and Apples as my main energy foods.
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Old 07-17-2008, 09:16 PM
 
3 posts, read 281,058 times
Reputation: 65
Smile thank you

Hi Myfanwy, I also have found that any grain makes my symptoms worse. I first went gluten free because I could not properly digest any food, with it going straight through me. Gluten free helped to some extent, but I also found millet and rice eventually caused the same symptoms. I also went off dairy, thinking I was lactose intolerant. I am now still off dairy and gluten but my sjogren's is bad lately and I now am severley vitamin D deficient. I am taking cod liver oil, which contains vitamin A to help with the skin and also a vitamin B supplement for energy. The brain fog persists and I am not sleeping well. I have found in the past that eating a lot of veg and fruit helped but got scared when my doctor said I must have an intake of carbohydrate, so I started eating gluten-free grains all over again. You may have just discovered a very important diet element implicated in sjogren's. I now will follow your lead and hope things improve. Its great to find someone who also wants a natural way of coping with this problem. Plase keep in touch, and thank you Margaret
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Old 07-26-2008, 04:43 AM
 
5 posts, read 273,001 times
Reputation: 31
Wow! I don't even know what sjogrens is really, but these posts are so interesting, I do not digest very much of my food at all and my Vitamin D leven is way down and falling!!! Thank you for that, now I know why. My brain is low and slow and I have been secretly worrying myself sick about that.

So this is all just normal for sjogrens, Is that right??
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Old 08-21-2008, 06:13 PM
 
1 posts, read 131,041 times
Reputation: 12
Default Hmm...gluten and Sjorgen's

Interested in this thread; would really like as many natural ways to treat my Sjorgen's as possible. Could gluten/grain be at fault if I don't have the stomach problems that accompany Celiac's?

THANK-YOU!!!!
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Old 08-22-2008, 07:05 PM
 
3 posts, read 281,058 times
Reputation: 65
Default sjogren's syndrome diet

Hi all, last week came across a blog that helps. Sjogren's is an autoimmune disease, that is it the immine system is activated to attack self proteins. Is basically caused by a malfunctioning immune system. This blog site I found is for multiple sclerosis which is also an autoimmune disease, but the principle is the same. Access to the cenral nervous system is through the blood brain barrier and may be aised by hypersensitivity to some foods. There are two main strategies for halting the immune reactions which can result in an attack on CNS tissue. 1. Heal a leaky gut to slow down and prevent intact food proteins entering the circulation, and 2. stop eating foods which contain proteins which can potentially mimic self-proteins in the CNS. The proteins that can mimic self proteins are in grains, dairy, legumes, eggs and yeast. It suggests you avoid all red meats and margarine, only eating chicken and turkey white meat or fish. Eat lots of vegetables, fruit and nuts. Basically a 'paleolithic' diet. There are specific antioxident supplements to take also. The site is www.direst-ms.org/bestbet.html (broken link). I have been on the diet for two weeks, my gut problem is resolved and the dryness in my eyes is getting better slowly. I am hoping I can stabile and not progress beyond my current syptoms. I now have a better understanding of the autoimmune process. I hope this helps!
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Old 08-27-2008, 12:04 AM
 
3 posts, read 137,784 times
Reputation: 22
Quote:
Originally Posted by Myfanwy Swansea View Post
I stumbled upon a diet for my Sjogren's Syndrome and I wanted not only to share it with others but also to invite anyone else with Sjogren's to share what they have done to manage their condition(s).

Since I began my "diet" I feel phenomenally better. The diet is simple, I eat no grains. No wheat, no rice, no corn, nothing - nada! I do eat all manner of fruit, vegetable, dairy and protein. I eliminated caffeine from my diet. I'm not a smoker or a drinker so those aren't a problem. As with all Sjogren's patients, drink plenty of water.

The philosophy behind my findings is like Celiac Disease (your body's reaction to gluten) causes your body to not be able to absorb vitamins and fluids properly and so you get all manner of other problems. I tried gluten free and it helped a bit, but it wasn't enough that's why I went completely grain free. You should also be aware of the hidden grains in condiments and other processed foods.

About two weeks after starting my diet, I began feeling so much better, I sleep better, I drool when I sleep, I don't feel sleepy after I eat, and my eyes aren't itchy!! Who would have thought drooling would be a good thing? More than anything else is my brain fog has cleared. For a while, I thought I was entering into early dementia and now that awful feeling of brain fog is gone!

Whereas before my diet I couldn't eat eggs and dairy because they caused me a lot of upset, now neither is a problem for me. I was disinterested in food before and now, I truly look forward to my meals.

I'd like to hear from others with Sjogrin's Syndrome - what have you tried and what has worked?
I have Sjogren's as well. Thank you so much for this post. I am up late right now because I can't sleep due to the neurological side effects that I get. Thank goodness for your post. I had a feeling that my flares had to do with food. I did really notice that caffeine causes me to flare. I also notice that the sunlight helps. Wierd, but true. If I am in the office all day long (which doesn't have a window next to it), I feel worse.
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Old 02-08-2009, 10:11 AM
 
Location: germany
1 posts, read 130,218 times
Reputation: 11
Unhappy sjogren diet

Hi there ! I suffer from dry mouth and dry eyes. I still have some tears and saliva. Can you tell me more about the diet please
Penelope
Quote:
Originally Posted by Myfanwy Swansea View Post
I stumbled upon a diet for my Sjogren's Syndrome and I wanted not only to share it with others but also to invite anyone else with Sjogren's to share what they have done to manage their condition(s).

Since I began my "diet" I feel phenomenally better. The diet is simple, I eat no grains. No wheat, no rice, no corn, nothing - nada! I do eat all manner of fruit, vegetable, dairy and protein. I eliminated caffeine from my diet. I'm not a smoker or a drinker so those aren't a problem. As with all Sjogren's patients, drink plenty of water.

The philosophy behind my findings is like Celiac Disease (your body's reaction to gluten) causes your body to not be able to absorb vitamins and fluids properly and so you get all manner of other problems. I tried gluten free and it helped a bit, but it wasn't enough that's why I went completely grain free. You should also be aware of the hidden grains in condiments and other processed foods.

About two weeks after starting my diet, I began feeling so much better, I sleep better, I drool when I sleep, I don't feel sleepy after I eat, and my eyes aren't itchy!! Who would have thought drooling would be a good thing? More than anything else is my brain fog has cleared. For a while, I thought I was entering into early dementia and now that awful feeling of brain fog is gone!

Whereas before my diet I couldn't eat eggs and dairy because they caused me a lot of upset, now neither is a problem for me. I was disinterested in food before and now, I truly look forward to my meals.

I'd like to hear from others with Sjogrin's Syndrome - what have you tried and what has worked?
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Old 03-22-2009, 01:41 PM
 
Location: Edmonton, Alberta, Canada
22 posts, read 371,288 times
Reputation: 124
Hi Everyone, I've been neglectful of this site - my apologies - In response to the many questions I was asked regarding more details about the diet. I'm certain I referred to a specific female author in my post - but it's no longer there. I don't want to go against the rules of this site as it's been very informative and I truly appreciate everyone's input. So, to the questions what "diet" am I following, this is what I do:

1. If it is known to dehydrate - don't eat/drink it. Coffee, tea, alcohol, diet cola, all are well known to dehydrate people.

2. Drink water! Drinks like pop, juice, milk, flavoured water, anything with a sweetner, etc., are not as good for you as plain old water. Drink at least 8 x 8 oz glasses of plain old water every day. As long as your tap water is safe - drink it.

3. I eat/drink dairy foods - cheese, yogurt, milk. Although I am lactose intolerant, I consume these products in small doses and get the benefit of the calcium, but not the stomach upset. I eat a half cup portion at a time of any one dairy product.

4. I eat eggs as a protein - they used to cripple me with stomach pain, but no longer do, it must be some sort of interaction with the grains - this is mentioned in the book to which I previously referred.

5. Protein - I try to aim for what I call true proteins, not processed meats like sandwich/deli meats as they contain grain "fillers" to glue them together. Chicken, fish, beef, and so on. I cook them in any fashion I choose, I don't often fry.

6. All fruits and all vegetables - try to eat raw whenever possible. I make a "salad" of chopped carrots, cucumber, radishes, green, yellow, red, orange peppers, celery and I use ordinary dressing (look for the hidden grains on the label).

7. All herbs and spices as long as they don't come from a grain - yes I use these.

8. Oils and fats - your body needs oils and fats in some form or other - take some time to read up on good fats and bad fats and make your choices from there. As a Sjogren's person, I absolutely will not eat any low fat product - some fats are healthy and are much needed to help with your dry skin and nails.

9. Read all labels - Avoid the inside aisles of the grocery store - you've heard these statements before. If a food product you buy has a list of ingredients make sure it's got no grains - you'll see all sorts of sneaky little ways of putting wheat into products - like Soy Sauce, as an example. If it has preservatives, limit or avoid it.

10. If you've ever had what you thought to be "addictive" overeating, I found my cravings were GONE when I started eating this way.

11. Search online for books/female author who recommends going against the grains in your diet and do some reading about the effects grains have on your body.

12. I started walking 3-4 kms 4 times per week and boy did that make me feel good.

13. Whatever country you live in, there will be a recommended food guide I'm in Canada (Canada Food Guide) so that's the guide I use - just minus the grains and I add additional fruits and vegetables in place.

I wish you all wellness and happiness!


Regards all,
Myfanwy
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