diet and Sjogrens/Lupus

[Sleepy In Seattle]

...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! 

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.

[LucyD]

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

[Sleepy In Seattle]

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! 
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! 
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. 

[LucyD]

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!    Ahhhh - croissants and Nutella. Yum!!

[gurs]

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

[LucyD]

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.    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

[prunella]

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

[Sleepy In Seattle]

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. 

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....

[gurs]

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

[prunella]

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

[Sleepy In Seattle]

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.

[LucyD]

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.    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

[katyjo]

 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. 

[gurs]

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

[prunella]

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!