I have been on the Auto Immune Paleo diet since early June 2012 for my primary Sjogren's. It has definitely helped me with some of my issues but others not so much. I am hoping you guys could hack my diet or give me some tips on some supplements which might help me to feel better. Also I have no idea on what the timeline would be to put Sjogren's into remission or if it is even possible. Everything I have read seems to indicate it is rare for Sjogren's to go into remission, but I am still hopeful it is possible. I am willing to stay the course with Paleo as long as my disease does not get worse. Could you guys provide me with feedback on how long it took for Paleo to put your autoimmune disease in remission?
My primary sjogren's issues prior to Paleo where:
Dry eyes (severe), dry mouth, peripheral neuropathy (burning hands and feet, sometimes numbness, and cold hands and feet), fatigue, joint pain, temperature intolerance, frequent urination and disturbed sleep, depression, tintinitus, hypohydrosis (can't sweat)
Most of these issues have improved greatly on Paleo. I have no more joint pain. Fatigue is much better, I can sweat when I work out, I am no longer taking anti-depressants. I still have problems sleeping due to frequent urination. What really has seemed to gotten worse on Paleo is my burning hands and feet. They start out cold then later start burning like they are sunburned. My feet often feel numb whe I am running. My Neurologist said it is small fiber neuropathy, and could be part of the Sjogren's. I have normal blood sugar and have never been diabetic.
Daily meds and suppliments: fish oil (2000mg), flax oil (2400mg), using magnesium oil on hands and feet, alpha lipoic acid 600 mg, B-12 3000mg sublingual, Alive brand multivitamin, vitamin D3 500 IU with K2 90 mcg, and plaquenil 200 mg x 2, Evoxac 30 mg x3, Restasis drops 2x, Armour Thyroid 120 mg
I have noticed that the magnesium oil seems to be making my hands and feet burn more, which is not what I expected.
My typical days diet might look like this:
1/2 lb grass fed beef sausage or minute steaks, half plate of melon, water
wild salmon filet or roasted free range chicken, green veggie like asparagus or brocolli, maybe a yam, water
apple or pear
grass fed beef pot roast, brussel sprouts, yam or carrots
beef or chicken broth, apple.
Any ideas or feedback on my diet or supliments is greatly appreciated. Also any encouraging words. I really feel like this Paleo diet is my last and best chance to get better.
asked byPaleo_Chris (25)
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on December 01, 2012
at 09:58 AM
With related autoimmune diseases a 25(OH)D level around the natural point of vitamin D3 equilibrium 50ng/ml 125nmol/l provides optimum benefits.
For most people 1000iu/daily vitamin D3 for each 25lbs weight will be required. Up to 10,000iu daily may be required initially After 3~5 months retest 25(OH)D adjust intake 1000iu day more for each 10ng/ml (25nmol/l) remaining under 50ng/ml (125nmol/l) or 1000iu/d less if above 60ng/ml (150nmol/l) There are postal 25(OH)D tests readily available. The UK NHS Path lab City Assays Vitamin D Blood Spot Test also post internationally and may be cheaper although some US discount labs have special offers occasionally. I haven't done a recent price comparison.
on October 03, 2012
at 06:33 PM
I may have primary Sjogren's as well but still early. I've found Onyix goggles to really help at night, as well as Restasis. Jaminet claims that his eyes dry out more when he completely eliminated carbs so keep a little.
Food wise, you could try GAPS testing. You'll want to load up on the anti-inflammatories such as from berries to slow progression. I've found that Tai Chi helps with problems with the nervous system. You could also try the Wahl's diet (also Paleo), which is targeted at supporting the nervous system. I think it helps to ensure that you have a good supply and diversity of potent antioxidants, such as green tea, chocolate, and apple skin, in addition to green things of course. Green Tea in paricular is of interest since it's been noted that Chinese have a substantially reduced rate of Sjogren's and it is believed to be due to their high consumption of green tea. Make sure to keep strictly gluten free and mostly dairy free - even trace amounts can provoke a large immune response that lasts months.
I presume you've visited the Sjogren's forums? LDN success is mixed at best I think. A similar option to consider is Dronabinol if you have access to it or just plain hemp seeds if not. At one point I thought sesame seeds were interesting as well but don't recall why.
on February 10, 2015
at 10:39 PM
I have SJS as well. You should try a paleo autoimmune diet, like Dr. Terry Wahls suggest. For SJS the Paleo Plus is the strictist, but most effective. Looking at your menu, you are absolutely not eating enough vegetables. They should be your primary source of nutrition. Cut out the bananas and apples. 3 cups of greens, 3 cups of antioxidants, and 3 cups of sulperous veggies every day.
on December 15, 2012
at 03:19 PM
try alternating between 3 meals a day and one big meal a day (preferably dinner). eating can exacerbate many autoimmune conditions.
on October 03, 2012
at 09:01 PM
have you tried b-12 shots? i also have peripheral neuropathy from my immunosuppresant drug (6mp). my feet are numb all the time. i told my doc and she said b-12 shots could help with this. i started them 2 days ago and i'm waiting to see if that will help.
on October 02, 2012
at 05:53 PM
Any chance you have a melon/latex allergy? Melon makes my palms & footpads itch/burn. Others find apples, pears or bananas cause problems (in some cases it is the stuff put on their skins to keep them looking good, or pesticides).
I sorted out immune/allergy problems with an elimination diet. Stripping back to only eating meat, then adding other foods one at a time to see what did not cause reactions.