Diet for Sjogren's Syndrome (patient, doctors, vitamins, gluten)

[Allison_24]

Originally Posted by pinelopi

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

Hi there!

It is sad to note that at present, there is no known cure for Sjogren's Syndrome.

For dry eyes, try adding 1/4 tsp. of table salt (or its equivalent in seawater) to one cup of water, bring it to a boil, then let it set until it is tepid. Put some of this in the eyes every so often. Do not use store-bought salt, because it contains aluminum, which may damage the eyes. Take emulsified vitamin A, and use torula yeast. Black walnut husk tea may help.

[sexybody]

Many Sjogren's Syndrome patients have special dietary needs such as:

• Avoiding spicy foods
• Choosing soft, smooth items
• Avoiding alcohol and wine
• Avoiding acidic juices, fruits and vegetables

Here are some ways to help with chewing and swallowing:

• Moisten foods with mayonnaise, sauces, gravies, yogurts, or salad dressing. Try dipping dry foods into whatever you’re drinking.
• Soften or thin foods with skim milk, broth, water, or melted margarine. Use your food processor or blender to finely chop or liquefy foods.
• Use a straw if it helps you swallow. Sip your drink while eating.
• Add soup with your sandwich.
• Add cucumbers to a sandwich to add moisture

If it hurts to eat:

• Try smooth, soft, creamy foods like soup, macaroni and cheese, mashed potatoes, casseroles, tender cooked vegetables, canned fruits, pudding, cheesecake, ice cream, and even tender cooked and simmered meats.
• Drink high-calorie, cold liquids such as milk shakes, instant breakfast drinks, or liquid nutritional supplements for both calories and ease in eating.
• Suck on fruit juice popsicles, ice chips, or other cold foods to help reduce the pain.
• AVOID salty, acidic, or spicy foods, or carbonated drinks that prolong pain.
• AVOID hot foods. Room temperature meals are easier to eat.
• AVOID hard, crunchy foods such as tough or crisp meats, dry snack foods, crusty bread, popcorn, or nuts since they can be irritating.

Hope that helps.

[lindoreen]

I decided to try super nutrition and toxic cleansing to deal with my Sjogren's and began using Isagenix products when I was diagnosed in March. I used to have difficulty getting out of bed in the morning: no energy, achy and stiff joints and muscles. Extreme sadness. I used my arms to haul myself up our stairs. My thighs hurt so badly whenever I stood up that I didn't want to stand up. Within a month, gone, all of these symptoms gone. Their premise is that we are constantly bombarded by the hundreds of chemicals that are now a constant part of our environment, in our air, our food and our water. Cleanse the toxins, and then fill yourself up with super nutrients in the form of delicious shakes. If bad food will make you sick, then why wouldn't super food make you better? I don't know, maybe it is remission, but all the above symptoms are gone and I have a new lease on life. As for lack of fluid, I went to a naturopath who gave me something or another and I am now choking on my spit occasionally and the other day I ate a donut without and water or anything. I no longer panic when my water bottle isn't near, and I no longer feel like I am 80 years old. (I am 61.) Now I feel 20 years younger.

[dfowlermills]

Hi I have sjogren`s and I hate it. I did not know that certain food could make you hurt.
I love bread, rice, it will be hard. but at this point I am willing to try anything.
does anyone else have pain in their feet? if so what do you do. I am not on any meds right now. I do not have medical insurance and can not get the blood work done. I figure the meds damage the same organs as the sjogren`s I try not to complain and when I am so tired that I hate to get up and go to work I have to push myself hard. I don`t think my family really understands how I feel.

God Bless
Deb

[sealnumberone]

Originally Posted by margsw

Hi all, I have been gluten-free for a while now and think it helps. I am not celiac but do carry the gene for it. Wheat makes my eyes itchy, sneezing and bloating. I found nuts of any kind made symptoms worst (itchy and diarrhea) and the joint pain is a lot worst eating potato. I suppose we all react differently. But what has definitely helped me are 'cold water' salmon oil capsules. They calm the intestines.
What I can't seem to overcome is the dry and itchy scalp. Any suggestions. I have tried hemp shampoo, dry skin lotion etc but the scaling and itch always comes back. help!

Hi there....I just found this site.. sick and tired of being too sick and tired to go out... or being completely tired out by a 30 minute walk...so it is good to read the different posts, and to realize i am not in this alone.

I swim most days...and i have very dry hair and scalp. I use a product by neutrogena called triple moisture..it is a heavy "leave in" conditioner. I only wash my hair twice a week, but i apply this conditioner after every shower....i keep my hair really short...and try to stay away from blow dryers, as they make it worst.

I would also like to comment on the diet....thanks...I am going to try it....it will be quiet the change.....no coffee, or bread, or sweeteners......can't wait.....i'll start right now.....

Has anyone tried using oil supplements to your diet....i have been reading alot about adding moisture from the inside out...I take omega 3,6, 9 with 3x the amount of 3... i also take lecithin,vitamin E, and A (cod liver oil)and flaxseed oil

.I have noticed two things, one i do think my joints don't hurt as much. and two, i have extra gas....(there's always a down side)

I am also interested in any thoughts on taking Ginkgo Biloba. Just started. I have recently discovered that Ginkgo Biloba will take blood (oxygen) into even the smallest blood vessel, which may help with the muscle pain and extreme tireness i feel in my legs...time will only tell....

thanks for reading and any help you can offer....

[sealnumberone]

Originally Posted by mereeve

I am new to this forum but have found these posts very helpful. I am currently seeking diagnosis confirmation from the Cleveland Clinic for a diagnosis of Primary SS. I DO NOT suffer at all from dry eyes or dry mouth at this time but tests indicate positive for this. My main problem is MUSCLE AND JOING PAIN and stiffness to the point where I cannot participate in hardly any of the physical activities I used to enjoy regularly (biking, hiking, aerobics, spinning). The pain is constant and sometimes so bad that not even NSAID's provide relief. I am constantly fatigued because the muscle pain and cramping in my legs and arms keep me from being able to fall asleep and stay asleep throughout the night.

Does anyone else with diagnosed SS suffer these symptoms as opposed to the dryness issues? I feel like my symptoms are WRONG for this condition, most blogs and articles focus on the eye/mouth issues. Is there any relief for the muscle/joint pain, any diet or supplements that can be followed or used? I feel like I am getting no answers from medical providers, even the Cleveland Clinic has not been as helpful and I had hoped.

I'm not ready to give up on getting back my former lifestyle, please if anyone else has had experiences like mine I welcome any feedback or suggestions. Thank you so much.

Hi there....I have both. (dryness and muscle and joint pain)..it's the problem with the muscles that bother me the most. I notice this pain in my legs more then other parts... This does not mean i don't feel it in my arms when i work out with weights or swim and exercise in the pool too much... it's just that i use my legs when i do everything from standing (which kills me) to moving around doing laundry ect, not just walking..

When i was first diagnosed I was put on plaquenil 200mg x twice a day....God this is great stuff, took away every pain i had and the energy was out of this world. then after the first two years, i was told i had to cut back because of the side effect of blindness. and in the cutting back the pain returned some. Most of the drugs i take do help with the dry issues....like salagen.....this is excellent for mouth and eye dryness.. i never have mouth sores anymore...

I understand about "thinking" of losing the life style you once led. I think about this everyday.....I have been able to do less and less, for several years now....and it takes more and more rest, to recover, from less and less activity..

One realization for me has been....that i will probadly stay single.....because i would never be able to keep up with someone not sick.....

[sealnumberone]

Originally Posted by dfowlermills

Hi I have sjogren`s and I hate it. I did not know that certain food could make you hurt.
I love bread, rice, it will be hard. but at this point I am willing to try anything.
does anyone else have pain in their feet? if so what do you do. I am not on any meds right now. I do not have medical insurance and can not get the blood work done. I figure the meds damage the same organs as the sjogren`s I try not to complain and when I am so tired that I hate to get up and go to work I have to push myself hard. I don`t think my family really understands how I feel.

God Bless
Deb

Hi, i have alot of pain in my feet.also...this isn't helped by them always being cold. even in summer or socks or heated floors. so, many years ago i started heating them up.....this stops my pain in it's tracks. it also stopped the condition from going further up my legs.....which it can do. i do this with heated floors, and socks... now adays , i have a heating pad in the bottom of the bed, always on. in the night when i awaken with icy cold feet, i search it out....for instant warmth....

[chojny997]

thank you for the answer;
Unfortunately, her husband committed suicide in May. do not give advice to withstand the pain
:-( deceased was only 29 years :-(

[lindoreen]

My feet hurt too and I have not found a good solution to that. Putting them up when I sit down helps and icing them does also, but it is a constant problem. As for the dry eyes and mouth I don't know what he gave me but I went to a naturopath/homeopath and I now have more saliva than I know what to do with. I used to have to flush my eyes several times a day, now once or twice which is fairly normal I think. He gave me the treatment once about three months ago and I am still doing great. As for diet: I could barely get out of bed in the morning from aching, stiffness and low energy. I started using toxic cleansing and nutrient dense shakes from Isagenix and am much better. Maybe it is a temporary remission, but whenever I don't have my shakes I feel crummy again!

[lindoreen]

My feet hurt too and I have not found a good solution to that. Putting them up when I sit down helps and icing them does also, but it is a constant problem. As for the dry eyes and mouth I don't know what he gave me but I went to a naturopath/homeopath and I now have more saliva than I know what to do with. I used to have to flush my eyes several times a day, now once or twice which is fairly normal I think. He gave me the treatment once about three months ago and I am still doing great. As for diet: I could barely get out of bed in the morning from aching, stiffness and low energy. I started using toxic cleansing and nutrient dense shakes from Isagenix and am much better. Maybe it is a temporary remission, but whenever I don't have my shakes I feel crummy again!