diet and Sjogrens/Lupus

[mollie carey]

When I was 1st dx with Lupus/Sjogrens at 30 after the birth of my daughter, I was very sick, on steriods and plaquenil, with little improvement. Then I went to Doctor John Green, who started me on vitamin IV's, tested my IGG and saw it was low, and put me on a no dairy, gluten free diet, along with many vitamins I can not remember.  After months on the diet I felt like a new person, stayed up late sewing, working, just had tons of energy.  Slowly I got lazy about all the vitamins and supplements and starting not taking them, then I went off my diet thinking I was cured.  Within a few months symptoms came back and got worse.  Now at 50 and in my first bad flare in a long time, I am thinking I need to try the diet again, but I can not lose weight, I struggle to stay at 115.  Has anyone tried this diet and felt much better, I have seen conversations here about it, it is just alot of effort to follow it, but I am in a place where i need to be proactive.


Lupus, Sjogrens, Hashimotos, CVID, Osteoporsis, brain anerysm, steriods, motrin, took plaquenil had to stop, subq IVIG, coq10, soma, klonopin, three type of thyroid medication, biaxcin, diflucan

[warmwaters]

Hi - I think you'll find folks here who have gone the no dairy no gluten route and had good results. You'll also find folks who use various vitamins and supplements and find relief. I'm sure they will chime in on the details, or you can search in the box on the top if you are interested in a particular food or vitamin.

I'll just mention that our bodies change a lot over the years, and what was right  for you 20 years ago may not be the exact right dose/blend of treatment now.  Don't know who to suggest you discuss this with, but it's worth getting some input from a doctor, or other professional, especially since you take quite a few meds, and there might be interactions.

Hope your find some relief.

[Sleepy In Seattle]

I totally agree with warmwaters, and will just add that eating GF/DF/SoyF, no artificial sweeteners, no high-fructose corn syrup, mostly "Paleo" (i.e., almost no grains/simple carbs), and no processed foods has made a HUGE difference for me.

It's hard to do sometimes, and I do occasionally "fall off the wagon" or have a treat (Reeses Peanut Butter cups on Halloween, for instance...) - but pretty much never with wheat. Wheat makes me feel horrible - it's just not worth it, I have learned. I do not have celiac - it's just that gluten triggers the Lupus/Sjs.

I take a variety of supplements that help, too - primarily fish oil, turmeric, vitamin D, B-complex, magnesium glycinate, and low-dose DHEA. Other stuff on an as-needed basis, plus a basic multi-vitamin.

I eat mostly organic; lots of lean meats/fish, veggies, fruits. Occasional sheep/goat cheese.

That's what helps ME, but I think everybody has to experiment to see what works for THEM.

The diet that helped you before is probably a good place to start! As you know, it's not a cure, but it can help you feel a lot better and manage your symptoms.

Just don't get down on yourself for taking a break. We're only human, after all!

[mollie carey]

when you say it helps immensely, like do you still have many symptoms, are you able to work, very active.....

[Sleepy In Seattle]

when you say it helps immensely, like do you still have many symptoms, are you able to work, very active.....

Well first let me say that my case is just that - ONE case - and we're all so different.

Also, my diet is IN ADDITION to daily Plaquenil, weekly methotrexate (not a huge dose, though) and 2.5-5mg/day of prednisone (though I am trying to get off that).

I do think that without the careful diet, I would feel MUCH worse and need more medication. It's not just a hunch - I have experimented with different ways of eating, and seen what effect they have on me.

Before diagnosis/treatment, I was in pretty bad shape - sooooooo achy and exhausted all the time, bad sleep, night sweats, waking up to sip water 15-20x/night because of dry mouth, terrible brain fog that made it impossible for me to work or organize/complete anything....I had neuro symptoms that were pretty scary - a couple of times found myself driving down the highway with no idea how I got there or where I was going....i thought I had early-onset Dementia. I was dozing/sleeping 12-15 hours a day, couldn't get up a flight of stairs without being horribly winded.

Now I am extremely active - I work 20+ hours a week as a horse trainer, do house and yard renovations at home, mow the lawn, run all the errands, volunteer at daughter's activities, etc. 

I do have flares sometimes, and have to keep on top of things. I have learned to be very aware of and responsive to my body. I sometimes overdo it, but I do generally take good care of myself. I sleep at LEAST 8-9 hours a night and take breaks when I need to (mostly!). Once I started to feel better, I was able to get to a more healthy weight and I find that exercise is also key to feeling good...but you CAN'T exercise if you're exhausted all the time, you just CAN'T....so getting symptoms under control is critical - with meds, diet, or whatever. Then when you have a tiny bit more energy, just start by walking around the block, or whatever. That's what I did. Now I "power-walk" (VERY fast!) 3 miles a day, 6 days a week, in addition to working horses and riding at my job. Sometimes it's hard, but staying strong is how I stay strong!!!! :p

If I get sick, it takes me longer to recover than most people, and it takes me a couple weeks to get back on track with exercising...that's okay I try to cut myself some slack when I need to.

It's been a really long road from feeling awful to feeling good...I have had good doctors, good luck, good friends/family, and I have done tons of research and worked very hard at it. And I know it can all turn on a dime...so I am enjoying it while I can, and doing what I can to preserve it. It's a wild ride!!!!

These forums are a great source of information, support, and (hopefully) inspiration. We all have highs and lows.

[prunella]

I agree with sleepy in seattle about the diet. Mine is very similar.  Avoiding processed foods can be difficult, especially when I am too tired or busy to prepare a meal, but I have found a few microwave meals that are pretty good. Most of them come from Trader Joe's or are the Amy's brand.  Sugar is not my friend. I use small amounts of agave in baking. I bake with almond flour, arrowroot and a few other GF flours.  I try to avoid corn and nightshades, although I eat small amounts.

Probiotics and fermented vegetables, which I like, help keep it all in balance.  When I start to feel the heavy limb/fatigue feeling, I take homeopathic oscillicoccinum.  It is sold in health food stores and some grocery stores as a flu remedy. The brand is Boiron. It is packaged in little tubes and the instructions tell you to dissolve the entire tube under your tongue. After a couple of hours, I start to feel better. I take only 8-10 of the tiny pellets at one time and the little tube lasts for quite a while. The dose can be repeated a few hours later if you aren't getting relief.  Truth: I keep a tube by my bedside and one in my purse. 

I have found that I need to prepare food, such as soups and GF muffins on the weekends because I am too tired during the work week.

All of my sympathies to you.  The dietary changes have helped me at least as much as plaquenil.

beth AKAprunella

[Sleepy In Seattle]

Oh yes! I forgot the probios - I am a big believer in those...in fermented/cultured foods, as well as a quality supplement. 

[soycoffee]

I, too, have discovered that a basic gluten-free, dairy-free, plain vegetables, small amt of plain fruit, diet does wonders. It's similar to two diets advocated on PBS, one by Dr Amen, one by JJ Virgin. The foods to drop are:
Soy
Peanuts
Sugar
Corn
Eggs
Dairy
Gluten
AKA: the ingredients that are in EVERYTHING!

It's usually true that other diets I have seen recently have a similar elimination period. I had been trending in that direction, didn't like either of the diet gurus I mentioned above, but I noticed the similarities in the first two or three weeks of the diet plans. So, I just cut out anything on the list above, and felt so much better that I stuck with the complete list. Then I saw that items with corn were listed at gluten free, and made the mistake of thinking I could eat corn. UGH

As soon as corn goes back  into my food list, I stop losing weight. My doctor was amazed that I lost weight even while taking Prednisone!

I did some gradual prep, starting with always sweetening with Stevia (Trivia brand). Then gradually my taste for the Stevia went away, so almost no sweetener at all. Then of course no cookies, no breads, no wheat. I had always been "no milk." By the time the diets that began with washing out the above list got my notice, I was ready. And then promptly lost 15 pounds when I every diet over the last 20 years has failed!

[mollie carey]

does this diet change quickly how you feel or do you have a die off period where you feel bad?  How much has it helped like if you felt at a 3 on a scale of 1-10, now a 7? or what. just trying to see how much difference it makes. For me when on it, and it was hard, I felt so much better, it was crazy.

[prunella]

I have gradually eliminated the the "bad" foods, except eggs.  First, I stopped the wheat and dairy, but not the other foods. I have never eaten a lot of sugar, but I baked some very tasty GF cookies that first holiday season.    About one year later, I started to follow Dr. Peter D'Adamo's  Blood Type Diet, which avoids corn, soy, sugar, peanuts, wheat, dairy, and processed foods, among others specific to my blood type.   

I certainly had a variety of gastro responses, but not the extreme die off symptoms others experience.  Although I have never seen a gastroenterologist, I believe I had leaky gut and serious yeast issues.  On the advice of my acupuncturist, I used vaginal yeast fungicides protocol to gently treat the yeast issue.  I am not sure how men might accomplish this, but the acupuncturist said that it would not cause big die off problems. She was right!

After four years, I am immensely better.   However, some days and weeks are not so great --3 or 4--and I am considering helminths.

beth

[mollie carey]

can I ask what helminths is?

[Emanuela]

what about diet benefits on dryness?

[machenza]

can I ask what helminths is?

Intestinal worms form pigs

Nellie

[LucyD]

I am encouraged by your posts Sleepy In Seattle, Soy Coffe, and Prunella. I am at my wit's end trying to figure out what to eat and what not to eat and if diet will make a difference. I am flaring this weekend and I am exhausted, my eyes are really dry, my stomach is very upset with nausea and some diarrhea, and I am aching. That is after a week of doing no wheat, dairy, eggs, soy or corn all of last week with the hope that I would feel better. I know I probably have a yeast problem because I have been on so many antibiotics for chronic sinus infections, and recently IV antibiotics in the hospital for an infected dog bite and infected teeth that were pulled.
What in the world do you eat for breakfast??  I was thinking maybe a veggie burger without soy would be a good idea? I am just very discouraged this weekend with being so tired. I love coffee, but only let myself have one 8-oz cup in the morning, and it is not enjoyable without cream. (whine, whine).
I am reading the book The Immune System Cure by Susan Blum and it talks about all of this and leaky gut and yeast/bad bacteria in the gut as the cause or exacerbation of autoimmune illness.
LucyD

[LucyD]

I am encouraged by your posts Sleepy In Seattle, Soy Coffe, and Prunella. I am at my wit's end trying to figure out what to eat and what not to eat and if diet will make a difference. I am flaring this weekend and I am exhausted, my eyes are really dry, my stomach is very upset with nausea and some diarrhea, and I am aching. That is after a week of doing no wheat, dairy, eggs, soy or corn all of last week with the hope that I would feel better. I know I probably have a yeast problem because I have been on so many antibiotics for chronic sinus infections, and recently IV antibiotics in the hospital for an infected dog bite and infected teeth that were pulled.
What in the world do you eat for breakfast??  I was thinking maybe a veggie burger without soy would be a good idea? I am just very discouraged this weekend with being so tired. I love coffee, but only let myself have one 8-oz cup in the morning, and it is not enjoyable without cream. (whine, whine).
I am reading the book The Immune System Cure by Susan Blum and it talks about all of this and leaky gut and yeast/bad bacteria in the gut as the cause or exacerbation of autoimmune illness.
LucyD