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Sjogrens Topics => Living With Sjogren's => Topic started by: mollie carey on July 15, 2014, 06:01:10 PM

Title: diet and Sjogrens/Lupus
Post by: mollie carey on July 15, 2014, 06:01:10 PM
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

Title: Re: diet and Sjogrens/Lupus
Post by: warmwaters on July 15, 2014, 06:24:55 PM
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.
Title: Re: diet and Sjogrens/Lupus
Post by: Sleepy In Seattle on July 15, 2014, 06:36:13 PM
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!
Title: Re: diet and Sjogrens/Lupus
Post by: mollie carey on July 15, 2014, 06:38:22 PM
when you say it helps immensely, like do you still have many symptoms, are you able to work, very active.....
Title: Re: diet and Sjogrens/Lupus
Post by: Sleepy In Seattle on July 15, 2014, 07:39:27 PM
Quote from: mollie carey on July 15, 2014, 06:38:22 PM
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.
Title: Re: diet and Sjogrens/Lupus
Post by: prunella on July 15, 2014, 07:55:43 PM
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
Title: Re: diet and Sjogrens/Lupus
Post by: Sleepy In Seattle on July 15, 2014, 09:06:12 PM
Oh yes! I forgot the probios - I am a big believer in those...in fermented/cultured foods, as well as a quality supplement.  ;D
Title: Re: diet and Sjogrens/Lupus
Post by: soycoffee on July 16, 2014, 02:58:29 AM
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!


Title: Re: diet and Sjogrens/Lupus
Post by: mollie carey on July 16, 2014, 08:46:21 AM
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.
Title: Re: diet and Sjogrens/Lupus
Post by: prunella on July 16, 2014, 04:47:05 PM
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
Title: Re: diet and Sjogrens/Lupus
Post by: mollie carey on July 16, 2014, 04:52:33 PM
can I ask what helminths is?
Title: Re: diet and Sjogrens/Lupus
Post by: Emanuela on July 17, 2014, 05:51:54 AM
what about diet benefits on dryness?
Title: Re: diet and Sjogrens/Lupus
Post by: machenza on July 17, 2014, 05:47:34 PM
Quote from: mollie carey on July 16, 2014, 04:52:33 PM
can I ask what helminths is?

Intestinal worms form pigs

Nellie
Title: Re: diet and Sjogrens/Lupus
Post by: LucyD on July 20, 2014, 12:26:19 PM
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
Title: Re: diet and Sjogrens/Lupus
Post by: LucyD on July 20, 2014, 12:31:19 PM
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
Title: Re: diet and Sjogrens/Lupus
Post by: Sleepy In Seattle on July 20, 2014, 02:56:35 PM
Quote from: LucyD link=t. opic=26476.msg283635#msg283635 date=1405884679
...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 .....
What in the world do you eat for breakfast?? 
....I love coffee, but only let myself have one 8-oz cup in the morning, and it is not enjoyable without cream....
LucyD

Glad we could (hopefully) help!
To address a few of the things in your post above - if you do have yeast overgrowth in your body and you have switched to a diet that discourages yeast growth, you may be going through something called "die-off", where thousands (millions?) of yeast organisms in your tissues are dying off - as they do that, they overwhelm your body with toxins and make you feel HORRIBLE for a while. Kinda like a yeast-induced hangover!  :P

Drink TONS of water, and try to stick with it. Get lots of rest. If it IS yeast die-off, it should get better after a few days.

Personally, most days for breakfast I have a small bowl of fresh pineapple (has a natural anti-inflammatory compound called bromelain in it) with watermelon, canary melon, or whatever fruit is seasonal and good. I also have a hard-boiled egg with a little salt and pepper, or sometimes a fried egg on a gluten-free cracker. If I don't want an egg, I will have a small handful of nuts (I love pecans!) for protein, or maybe a GF cracker with peanut butter or almond butter on it and a sprinkle of cinnamon.

I drink tea in the mornings, but I do have a cup of coffee most days around lunchtime. It was an adjustment to stop using milk or cream, for sure - but it's possible to get used to it. There are lots of non-dairy creamers - most of them contain soy and/or hydrogenated oils, so I stay away from those. Some people can't tolerate carageenan or other seaweed-based thickeners (which are in MANY products), but I don't have a problem with them, so I often use the "So Delicious" brand coconut-based creamers. They take some getting used-to, but they're not bad.

My favorite, though, is to use almond milk. It has lots of calcium, which is important if you're avoiding dairy, and I think almond milk is actually BETTER than dairy milk in coffee. You may need to try different brands to find one you like, and adjust the proportions - I like half almond milk/half coffee - warm the almond milk first so it doesn't make your coffee lukewarm.

Hope some of that helps, and that you feel better soon....

Also, don't be afraid to talk to your doc about the yeast die-off issue...if you really do have systemic yeast issues, you may also need a course (or several) of nystatin to really get rid of it.
Title: Re: diet and Sjogrens/Lupus
Post by: LucyD on July 20, 2014, 03:14:36 PM
Thanks so much Sleepy. Your post helped me tremendously emotionally today. (In a pretty down mood today.)
I got so discouraged this afternoon and was craving something chocolate and crunchy that I had an oatmeal chocolate chip cookie. I had forgotten they were in the cabinet.
But I will start again tomorrow.
Yes, a lot of it could be die off. And I did take some natural anti-yeast supplements. I have a prescription for Nystatin from one of my doctors, but have been hesitant to start it.

Mollie Carrey I did not mean to hijack your post. I hope the info Sleepy posted will be of help to you too!
LucyD
Title: Re: diet and Sjogrens/Lupus
Post by: Sleepy In Seattle on July 20, 2014, 03:44:37 PM
Quote from: LucyD on July 20, 2014, 03:14:36 PM
Thanks so much Sleepy. Your post helped me tremendously emotionally today. (In a pretty down mood today.)
I got so discouraged this afternoon and was craving something chocolate and crunchy that I had an oatmeal chocolate chip cookie. I had forgotten they were in the cabinet.
But I will start again tomorrow.
LucyD

Sorry you're feeling down  :( (((((hugs)))))
And don't worry about the cookie - no need to scale the whole mountain in a day!!!!  ;)
I totally fell off the "Paleo wagon" last night and had a GIANT plate of (gluten-free) spaghetti and meatballs, PLUS (gluten-free) bread, PLUS a (gluten-free) chicken fingers appetizer. WAY too much food, and way, WAY, W-A-Y too many carbs!  :o ::)
Oh well - it was yummy, and my cravings are satisfied for a while. And now I am looking forward to a healthy-eating week ahead of me!  ;D
Life is too short to deny yourself ALL vices. I try to indulge in a SMART way (for me that means no gluten, but I do splurge occasionally on a little dairy and/or sugar/carbs), but if you NEVER indulge, at some point you're gonna just EXPLODE and do something stupid like eat an entire flat of Costco croissants with a jar of Nutella.  :o
Title: Re: diet and Sjogrens/Lupus
Post by: LucyD on July 20, 2014, 05:52:57 PM
Sleepy, you made me laugh so hard. Thanks for the hugs and for sharing about your splurge last night. That is funny. I can understand!  :D  Ahhhh - croissants and Nutella. Yum!!
Title: Re: diet and Sjogrens/Lupus
Post by: gurs on July 21, 2014, 04:20:45 AM
You guys are my heros!!!!! Im ready to change. Ive made small strides in my diet, really noticing changes when I eat certain foods like dairy and bread. Ive been good about artificial ingredients, and read all the labels, but need to do something more drastic. Actually, ive been trying to eat more foods with soy in them to help with my menopause side effects and feel better when I eat more of it..I also noticed that popcorn bothers me now. When I keep eating the same things, I feel better, but when I eat something new, it triggers autoimmune-allergic type reactions in my body and I just flare right up, and then suffer for a few days. Not sure if I will ever be able to give up potato chips though? I think they might be gluten free???uhmmmm.

Yes, we are all different and have to experiment I guess..thanks for being an inspiration.

Gursie
Title: Re: diet and Sjogrens/Lupus
Post by: LucyD on July 21, 2014, 06:21:11 AM
Hi Gurs,
Interesting what you posted about new foods causing a reaction. I made quinoa cereal this past week thinking great it is high in protein, has no gluten. My body did not like it. Phew! Sorry to the tmi but bad diarrhea and bloating the next day. Ate it two days and same reaction.
I vote yes for potato chips.   ;D Trader Joe's sells some made with olive oil. I know they're still not that good for us, but once in a while - heck yes.
LucyD
Title: Re: diet and Sjogrens/Lupus
Post by: prunella on July 21, 2014, 07:05:02 PM
You folks are working hard to be well!  It is tricky and arduous.   
And sorry, in advance, for such a long post, but there will Not be a quiz at the end!  :)

My experiences are much the same as sleepy in seattle's and it is gratifying to hear this!

I usually avoid potatoes because they are a nightshade, which can cause inflammation, I do love them and occasionally indulge. One place where they can be sort of hidden is in gluten free flours--potato starch. In the days when I baked (excellent, if I do say so myself!)  wheat bread, I used potato water for good texture. But GF baking is one place where I try to omit potatoes, since I cannot see that they improve the end product.   

One thing I will comment on is soy.  I avoid soy but menopause is no longer bothersome--well not much! lol   According to the Blood Type Diet, which I try to follow, blood type A people can digest soy easily, but do not do well with a lot of red meat.   I have  blood type O and am advised to eat red meat and/or turkey and to avoid soy.  As it happens, I abhor turkey and can manage beef only occasionally. I spent 30 years on a meatless diet, experiencing many flares and much fatigue.
I  realize that many people are  not interested in incorporating yet another diet into their routines, but BT dietworks for me and I feel well when I follow it. 
(Note to Emanuela: the BT diet was recommended to me by my Brazilian SIL, a type A, who loves red meat. Her family owns cattle ranches in Brazil.))

Regarding dryness, avoiding wheat and dairy definitely helps with dryness.  I can eat small amounts of sheep's milk cheese and feel digestively OK,  but my eyes usually notice it.  BTW, I choose sheep cheeses based on the very few recommended cheeses in the BT diet. Other blood types have different recommended foods, so please do not expect sheep cheese to be OK for everyone.

One observation I have made is that I need to mix up the foods I eat. I tend to want to stick with foods that have been easy to tolerate. However, if I stick with the same foods for too many days, I start to have digestive problems-- a sure sign of inflammation which affects many body systems.

Lucy D, clearly quinoa is not for you. Better to know and to avoid it.

beth
Title: Re: diet and Sjogrens/Lupus
Post by: Sleepy In Seattle on July 21, 2014, 07:12:47 PM
Just a thought, here - if you are accustomed to eating a "normal" American diet (i.e., larger proportion of refined/processed and high-starch/carb foods) and you switch to GF/DF/low-carb/whole foods, you probably will have some digestive "difficulties" at first - not necessarily because you react badly to the foods, but because the new diet will probably be WAY higher in fiber and much LOWER in foods that "bind" stools...i.e., you'll probably have a lot of cramping, gas, and diarrhea.  :o

Consider that in the first couple of weeks, you might want to reserve judgment on how well things are going until yeast dieoff happens and your system adjusts to the new foods.

Also - you don't have to go whole-hog right away - it's a hard transition both physically and mentally! It's okay to ease in.... :)
Title: Re: diet and Sjogrens/Lupus
Post by: gurs on July 22, 2014, 04:16:16 AM
I try and eat the same things all the time because I know my body can handle them..however, as soon as I try something new..have that allergy-autoimmune reaction..its horrible. Each of us is different, just have to experiment I guess. I know dairy is a biggie for me.
Soon as I eat it, my sinuses plug up, the dryness gets overwhelming and then the stomach hurts.....

Ive been eating gluten, but always stayed away from the whole wheat products, which my stomach just hates.

Im ready to try and make more drastic changes though..not sure how you guys do it?? what they heck can we eat?

Gursie
Title: Re: diet and Sjogrens/Lupus
Post by: prunella on July 22, 2014, 06:43:38 AM
One thing I have come to believe about wheat is that the higher gluten wheats are far worse for me. So I concur with gursie that whole wheat is more inflammatory than a white flour. Following that logic, pastry flours, which have less glute, should cause fewer problems.  I am not advocating that anyone add wheat back into their diet, other that simply cutting out whole wheat w I'll cure anything inflammatory. 
But I have wondered if the occasional croissant would kill me.......  So far, I have not succumbed.

I agree that everyone is different, which is one reason th Blood Type Diet makes sense to me. And to clarify about not eating the same foods for many consecutive days:  In summer, I eat pretty much the same breakfasts-- eggs and GF toast, grapefruit juice-- and the same lunch--tuna salad with green salad, but in winter if I make a large pot of soup and eat the soup nightly and the same breakfast and lunch for several days running, without many green veggies, I start to feel poorly.   On weekends, I try to eat a different breakfast.
I try to mix up the green veggies and the seasonal fruits, but there are some foods I simply avoid.

Beth
Title: Re: diet and Sjogrens/Lupus
Post by: Sleepy In Seattle on July 22, 2014, 07:14:03 AM
Quote from: prunella on July 22, 2014, 06:43:38 AM
One thing I have come to believe about wheat is that the higher gluten wheats are far worse for me. So I concur with gursie that whole wheat is more inflammatory than a white flour. Following that logic, pastry flours, which have less glute, should cause fewer problems.

Actually, the more refined the flour is, the higher the gluten content....pastry flours often have pure gluten ADDED to them to give the product that lovely texture (things like croissants especially!).

It's worth doing some research on exactly what gluten and gliaden (the real culprit) are and where you find them...the website "Gluten-Free Girl" has great info and tips and recipes.
Title: Re: diet and Sjogrens/Lupus
Post by: LucyD on July 22, 2014, 07:05:22 PM
Gursie, applause for you!!! You are really trying. Please be careful with the soy. Have been reading it is not good for us, that any soy except true organic is genetically modified. No, we can NEVER give up potato chips!

Beth, I also find whole wheat a lot more inflammatory for me. I am type O, too, (negative). I do feel better when I am able to stay with more meats and a lot of vegetables. But that gets sooo boring after awhile and I long for a crunchy carbohydrate, some nice soft hot bread with real butter, or some ice cream. Right now I am still dreaming about croissants. I think it might actually be helping me salivate a little.  ;D  Your breakfasts sound a lot like mine were until my integrative medicine doctor did some IgG food allergy testing and it came back that I was very, very allergic to eggs. I eat them almost every morning and they are the only thing that keeps me going during the morning at work without fading out and getting hungry. But, I have read a few things about IgG food allergy testing perhaps not being accurate and actually indicating food tolerance. So it is hard to know what to believe. In all seriousness though, your encouragement and positive results along with Sleepy's are inspiring me and I think Gursie and some others!

Sleepy - good advice about waiting until the die-off abates before making any judgments. Thanks.

I am reading a book, The Immune System Recovery Plan by Susan Blum, MD, MPH. She is an assistant clinical professor in the Dept. of Preventive Medicine at the Mount Sinai School of Medicine in NYC and is the founder of the Blum Center for Health in Rye Brook, NY. Her premise is that just about everyone with autoimmune disease has a "leaky gut" and protein molecules that are larger than should pass through our intestinal wall get through to our blood stream causing inflammation and setting off autoimmune disease. Not sure I believe this completely, but it does seem to make sense. I know I have "lived" on antibiotics much of my life for chronic sinus infections (probably related to the Sjogrens - on a recent surgery they discovered my septum had a hole through it). She also says that chronic yeast or bad bacterial overgrowth in the small bowel is another big problem. At any rate, with our discussion on diet, thought it might be interesting reading for you. She advocates no wheat, dairy, corn, soy (except small amounts of non-GMO).

Sleepy, thanks for reminding us that we can ease into this!

I have to start all over again. I had a stressful, horrible day at work yesterday and came home exhausted. I was starving, so I stopped at the grocery store and bought a beautiful porterhouse steak. I have not had one in years. I grilled it, and had a baked potato heaped with real butter (but it was grass fed!!) and sour cream (but it was organic!). Then I ate a whole sleeve of cookies for dessert. It was heavenly. But you know what, this morning my feet and ankles were more inflamed than they have been in a while.

So I will start over. And we can all "play" with this until we get it right.

I would like to believe curing our autoimmune disease is a simple as changing our diets, and it may have huge impact on our symptoms, but I just keep thinking there is more to it than that.

Good luck to all of us.
LucyD



Title: Re: diet and Sjogrens/Lupus
Post by: katyjo on July 22, 2014, 11:15:33 PM
 I knew getting to my optimal weight was the first step to getting to my best health.  I read a good number of books by different authors and I have found that Dr. Joel Furhmans recommendations works for my body.  I have read all of his books.  His books are about gaining health not just weight loss.   Everybody is different and I think the key is finding something that would work best for you.  I try to get the following in my diet daily: greens, beans, onion, mushrooms, seeds or nuts.  I enjoy my fruit, popcorn, cruciferous, take vitamin and take flaxseeds instead of fish oil.   I eat a very small amount of animal protein when I crave it.   

I feel good and I feel in control of my health.   I was given a prescription for plaquenil but I didn't like the idea of taking medicine long term.  I thought I give diet a try. 
Title: Re: diet and Sjogrens/Lupus
Post by: gurs on July 23, 2014, 04:25:01 AM
I gave up whole wheat years ago when I noticed after I was eating cereal, my stomach would bloat up, get so gassy, and then constipation. I also had gastroparesis back then too, so I think that may have been part of it. I don't get the same thing if I were
eating rice chex...breads, same thing. Im not even sure about the gluten aspect of it all, I just know whole wheat doesn't work for me. I also got my mother to stop eating whole wheat and her tummy got better too.

I think at this point, and being so darn sick, my body just allergic to everything. I guess we have to experiment. I really applaud all of you who can stick to such a drastic diet. Im trying and getting more motivated. I know we all have our cheat days, and pay the price, but oh well. Im not supposed to eat sugar because of severe yeast issues, but when a chocolate attack hits, I eat a small portion of it.

thanks for all the great info. I know my docs all told me the gluten free the way to be with autoimmune.

Gursie
Title: Re: diet and Sjogrens/Lupus
Post by: prunella on July 24, 2014, 04:42:23 PM
Interesting about the higher gluten in pastry flour. I will have to totally revise my thinking!
So now I wonder if there is less gliadin in white flours? Or what?

Really, I am trying to rationalize a reason to eat a croissant!
Title: Re: diet and Sjogrens/Lupus
Post by: Sleepy In Seattle on July 24, 2014, 06:29:26 PM
In general, the more refined the flour, the more gluten/gliaden is in it....those are the things that make a stretchy dough and lovely, airy-textured baked goods - ESPECIALLY things like croissants, french bread, pizza dough, phyllo, pastries, etc. :(

You can make pretty great quick-bread-type things with gluten-free flour (cakes, brownies, pancakes, banana bread, etc - anything leavened with baking soda/powder), but anything traditionally leavened with yeast relies on the elasticity that gluten/gliaden provide. That's why GF bagels, baguettes, sandwich breads, etc are kinda...well, lame. No "stretch" to the dough.

Maybe some day they will come up with a good substitute that imparts that lovely, egg-y, satiny feel to GF flours....