Sjogren's diet tips the doctors don't tell you about.

[Linda196]

While I agree that this diet is a lifesaver for people who have a nutritional or reactionary component to their AI diseases, remember that this array of disease effects many people in many different ways, and not everyone will find a benefit. Over the 30 odd years I've had diagnosed (positive serum and tissue) autoimmune diseases, I've tried every exclusionary diet and every supplement made available (fair, medically guided trials, 4-12 months each)...bottom line is that no particular food seems to trigger my flares (for which I am exceedingly grateful) and the only hormone that has ever appeared to make a difference to me is Vitamin D.

Also , since I seem to be the one who defies all established norms, since I've started taking Prednisone, Plaquenil and Methotrexate, my life long intolerance of sun exposure seems to be gone...although I don't make a point of "sunbathing" I can comfortably walk from the house to the car, for example, without developing a rash and becoming nauseated, which is how I had reacted from childhood on.

[puccini914]

Linda. becareful. MTX can make you more sunsensitive then you were before.  Also be extra careful if you ever have to take any antibiotics.  The two combined can make you blister in the sun.

[LizPetillo]

since I've started taking Prednisone, Plaquenil and Methotrexate, my life long intolerance of sun exposure seems to be gone...

That's funny since the plaquenil information says to stay out of the sun when you are on it. 
It did just the opposite for you! 

[Scottietottie]

We really are all different.

I am sun sensitive now but never was before - on the other hand I can eat anything without it having an effect one way or the other. The only 'food' that has any effect on me is the drink 'barley water'. It makes my throat close. Otherwise I have no alllergies or sensitivities.

Take care - Scottie 

[Karen]

I will say that when I eat too many tomatoes (especially in the summer) I have more flares, also the same goes for potatoes so I have stayed away from potatoes all together, but
tomatoes I have cut down drastically.

I read in my book on Rheumatoid Arthritis and it states that tomatoes and potates and anything with white flour and sugars all are major causes of inflammation. 
So one time I tried staying away from all of this and it did work I was less flared up and then when I started incorporating these foods back into my diet I was a mess.

I feel there is truth to all of this, but like everyone else I too find it difficult to stick with, but I'm at the point again cause I feel I'm constantly battling flares all the time it's
time to change my diet around for good, I just need to jump start it and it's difficult.
Karen

[Calli66]

Karen---tomatoes--Yes! I'm learning that they cause trouble. Been eating them fresh from the garden this summer, and just realized (by quitting) how they are affecting me.

C

[Lesleybird]

  I don't believe in the need or advantages to such radical dietary constraints in helping making Sjogren's any better. I think that one should eat a healthy diet and maintain a normal body weight. I think your list is  for the birds and rabbits. Take all the fun out of eating and still you won't be any better off from following some list that some doctor made up without any science to back it up. All you crazy people can eat like this and be miserable and not live a day longer or feel any better for your giving up all of your favorite foods. Did you know that doctors don't even take one class on nutrition in medical school? Even a nurse has to take a college course in nutrition.  It is our autoimmune conditions that is the major cause inflamation, not the food.                                              Lesley

[LizPetillo]

All you crazy people can eat like this and be miserable and not live a day longer or feel any better for your giving up all of your favorite foods.

1 - This information comes from the Sjogrens foundation AND the Arthritis Foundation.  It's been well documented and well established as a FACT that foods have chemicals and those chemicals do indeed trigger flairs in the majority of people with autoimmune diseases.

2 - I am more miserable during a flair after having eatten spaghetti than I am missing that spaghetti.  Pick your poison ... flair for 2-3 days and be in heck or skip the spaghetti dinner.  I choose to skip the spaghetti dinner and be less miserable.

3 - We do indeed feel better for giving up inflammatory foods.  We miss the foods like heck, but it's better to miss the foods then to be in flair-heck.

4 - It's not crazy to take care of yourself and to not want to be in flair-heck.

[Calli66]

I agree with Liz.

People always say they could never "live without" such-and-such food, or convenience etc. Reminds me of an album title from an (in)famous punk band circa 1980:

"Give me convenience or give me death."

Do I want to enjoy 10 minutes of pizza flavor and then suffer 48 hours of gastric distress? Easy choice for me.

C

[Scottietottie]

It makes sense not to eat something if you are aware it is making you flare.

It is also true that not everybody suffers reaction from different foods.

I have kept a food diary in the past and I keep a symptoms diary and there is no correlation between what I eat and how I feel.  Maybe I am alone in this - but it is so.

I have two grown up children, however, that have to be careful not to eat too much dairy or they suffer consequences. When they were little I adjusted my diet for them because if I ate dairy and then fed them, they got eczema. They had to be brought up without milk, ice-cream, cheese etc and they couldn't handle eggs either. Now they can tolerate some - but know their limits.

My oldest son has Crohn's disease and is learning he needs to watch his diet.

So - keep a food diary - watch for triggers.

If you have a cast iron stomach like me - eat what you want. It is a FACT that not everyone with an AI disease needs to eat the same way.

Take care - Scottie 

[cmclien]

I wanted to mention a couple of things.  As far as acidic foods go, have any of you tried prelief?  It is a totally natural supplement made by the makers of beano I think that reduces the acid in food.  I started using it about 6 months ago for my IC (which btw the plaquenil is really helping).  You take it with acidic foods or drinks like coffee, tea, wine, tomatoes, peppers and anything else acidic and it reduces up to 90% or something like that of the acid in your food.  It has been a huge help to me.  You can find it at walgreens or on-line.

I think one of the key components in this diet is basically limiting sugar and carbs which are converted to glucose in your body which is basically sugar.  They say the rise of insulin is what does alot of damage to your body which is puts out to store all that glucose.  Over time people become insulin resistant etc.  I follow a low sugar diet, less then 15grams and moderate carbs (less then 120g) a day since last january and I have to say I have felt much better.  I  tried going gluten free for a month but it didn't make too much of a difference for me.  I think whole grains put me over the edge though, whole wheat etc.  I simply cannot tolerate them.

There is tons of research out there now supporting similar "diets" or lifestyle changes.  The AHA even endorsed the low sugar this year though theirs is more liberal I think they say 25 grams of sugar and don't limit fruit.  Sugar is sugar t your body whether it comes from fruit or candy.  I'm not saying fruit isn't healthy, full of fiber etc I'm just saying too much of it isn't good for you.  I try and limit myself to one serving a day but thats just me.

[navydad]

 I don't believe in the need or advantages to such radical dietary constraints in helping making Sjogren's any better. I think that one should eat a healthy diet and maintain a normal body weight. I think your list is  for the birds and rabbits. Take all the fun out of eating and still you won't be any better off from following some list that some doctor made up without any science to back it up. All you crazy people can eat like this and be miserable and not live a day longer or feel any better for your giving up all of your favorite foods. Did you know that doctors don't even take one class on nutrition in medical school? Even a nurse has to take a college course in nutrition.  It is our autoimmune conditions that is the major cause inflamation, not the food.                                              Lesley

so your saying go ahead and eat whatever you want and be sick as a dog for it,, I;m learning what triggers my guts to act like a volcano,, and I take offense to being labeled crazy for not wanting to be sick as a dog from something I ate,, I dont care if a doctor ever took a class on nutrition in med school, seems like the ones a lot of us run into never took a class on anything except where to put there name tag at on there white coat,, excuse me while I go make a big bowl of popcorn slathered in butter,, I dont think our radical diets make SS any better,, its just the prudent thing to do,, if you burn your hand on the sotve,, next time your alittle carefull,, same with food,,, SIGH

[Scottietottie]

Hi

I don't think Lesleybird meant you to eat what you want if you KNOW something triggers pain.

I think she meant that there is no need to go on any kind of diet if you have not noticed food making a difference.

I can happily eat all dairy, eggs etc but 2 of my kids can't - so obviously - they don't.

We're all different.

Navydad - if you know some foods trigger discomfort - obvioyusly -0 stay away from them - you're right.

If anyone finds they feel better when on a certain diet - stick with it and feel well.

One size doesn't fit all.  If foods don't seem to trigger discomfort there is no need to avoid them.

Take care b- Scottie 

[LizPetillo]

Bumped for Ynever who asked about trigger foods.

[Sissy]

Kill me now! I eat alot of foods that are soft or require less chewing than some foods. When I do sit down for a meal, I eat very little. I would guess to say I eat what is concidered a portion...1/3 to1/2 cup of whatever it is we are eating. I would not be honest if I didn't say I have a terrible sweet tooth. Again, I eat in small portions. I also "graze" never eating a heavy meal. I crave fresh fruits and vegetables which is a switch for me. Also what works for me is to drink water before and during my meals as that moistens my throat and makes digestion easier. Eating this way has kept me from being hospitalized with diverticulitis these past few years. I hope to never have another episode of that so that is my motivation. I have pernicious anemia and B12 injections every other week helps also. I have a small frame and welcomed the 25 pound weight loss with the change in my eating habits. It is difficult to exercise with faciitis in my feet and recurrent costalchondritis. Also, as much as exercise use to give me lots of energy, now it's exhausting and painful. I do use the exercise bands given to me by physical therapy but not on a regular basis. My son and husband put very little stress on me if something doesn't get done. I feel very fortunate that I can still do what I can do. It just takes me longer and I have become use to doing things in a non-conventional way. Once the swelling goes down in the mornings, I can begin to get things started for my day. I write everything down, week by week, as to what it is I need to accomplish as well as any appointments I have. It's the only way I can make sure I get things done and don't forget appts. I am very absent minded and forgetful. I hate it. I am learning what causes flare-ups and stress and over-doing it are two of the big ones. Sometimes I'll sleep for 24 to 30 hours straight. It's as if I just pass out. Does anyone else have sleeping episodes like this?  Sissy