Thanks to some recent weight gain - partially because of medications and partially because I just don't feel like exercising - I'm seriously going to try to improve my eating habits after the new year; the holiday season just isn't a good time to make big changes. My question is: Has anyone here made any changes to their diet since being diagnosed and has it made any noticieable difference in how you feel? I'm admittedly a picky eater so this isn't going to be easy, but I'm determined to do it and if it makes me feel better then that would be a plus.
I am having to change my diet to include some vegetables. (What food eats). I would like to know if there are any other changes that I should consider.
It has definitely made a difference for me. I'm sort of following an anti-inflammatory diet, but mostly I just try to eat fresh, good food--lots of vegetables, fruits, and whole grains. Very few processed foods. I try to avoid anything with a lot of sodium or chemicals. I drink herbal tea and water all day long, but I avoid sodas or sugary juices (fortunately, I don't like sweet drinks)
I can always tell when I don't bother to eat right. I love Chinese take-out, for example, but I always pay for it the next day with arthritis, swelling, fatigue, and general sluggishness. Unlike a regular flare of my disease (which for me doesn't end without medication), it goes away after a day of lots of water and healthy foods. For me, it's worth a day of suffering to indulge once in a while, but I try to keep it to a minimum.
Some people with Sjogren's feel better when they cut out gluten from their diet, but that doesn't seem to be an issue for me.
I think that anyone--sick or not--can benefit from eating well, drinking more water, and getting lots of sleep. My biggest advice would be not to try to starve yourself or be too dramatic. Just having a small spinach salad for dinner will make you feel sad and hungry. Instead, eat a BIG salad full of great vegetables and top it with, say, a few sauteed shrimp (I keep a bag of frozen shrimp in my freezer and take out what I need) and a little dressing. If you want a bowl of pasta, try a whole wheat blend (I can't do the straight whole wheat) and toss it with fresh or canned diced tomatoes, some good olive oil, and fresh basil instead of boring jarred sauce. For a snack, eat some air popped popcorn (if your mouth isn't too dry) with a little melted real butter and a bit of salt instead of chips (bonus is that you can eat a LOT of popcorn before the calories start adding up). Fresh, vibrant food is good for you and tastes amazing.
Personally, I don't find it any more work to eat well than to eat poorly. It's a little more expensive, but so much more satisfying and healthier. For me, the biggest problem is getting to the store and having the energy to do the shopping. I'm still trying to get my husband to help out with that, but I've found ways to stretch things out. Frozen vegetables help, as does buying strategically (we'll eat the arugula tonight because it won't last long, but can save the broccoli for a few days because it will still be good).
I went Gluten Free and Dairy Free and it made a world of difference with joint pain and the flu like symptoms.
They just recently put me back on Gluten for a Celiac test and I feel horrible just about everyday again. Oh, I also don't eat any simple sugars and starches.
Hope this helps you!
Guess everyone has different opinions here. What works for some of us, makes no difference with another.
I normally have been eating lots of fresh fruits and veggies. Been making an effort to get fresh fish when I can, watch the sugars and fats, etc. Come to think of it, I have felt achier and in more pain the last few days. Not sure if it's because it's suddenly very cold here and I did more than normal the last week, OR partly because of those things in addition to the fact I ate more fattening, "less fresh veggie/fruits" types of things in the last week. Hmmm....
Guess I will get back to my healthy eating and see what happens!
Blessings,
Melinda
I firmly believe in the old adage "You are what you eat". Diet makes a huge difference in how I feel and the impact of Sjs on my body and my ability to fight off other illnesses. I encourage everyone to take a long hard look at what they are consuming and try and make informed decisions on everything they eat and how they prepare their food so as to maximize the nutrional aspect. It doesn't have to taste yucky to be good for you either!
I really do believe that diet makes a difference. For example, if you're more sedentary due to the SJS, it isn't smart to eat a high sugar/fat diet. If you're unable to exercise to lower your cholesterol and maintain heart health, you definitely should make sure you eat a diet to try not to add to those risk factors.
I've been gluten free for the past 3 months. It's definitelly made a difference. I actually have some good days now. I won't say life is great, but I will say that going gluten free has allowed me to feel a little better.
Thanks so much for the info everyone. Part of my problem is that I'm single and it's hard to cook or eat even eat fresh foods when you live alone. And I'm not a big fan of most vegetables but I'm going to try to make myself eat more of them...maybe add some interesting seasonings or dips to make them more palatable. I'm just tired of feeling blah at best and then there are the "muffin tops" that are starting to hang over my jeans... :o
I tried going gluten-free for awhile although it seems like it was unnecessary. I have also tried the anti-inflammatory diet and have some great success with it. In my case I too started trying to eat only fresh veggies and fruits, but it turns out that for a person with Crohn's that's a nono. So I'm back on gluten containing foods..after a test for celiac's was done, with cooked and steamed veggies and have actually started regaining the 15 lbs or so that I lost going completely gluten-free, sugar-free.
I have definitely found that eating healthy unprocessed food makes a huge difference. Lots of fresh fruits and vegetables. I try to buy organic as much as possible.
We have had a lot of things going on lately - deaths in the family, working overtime, and general business - and we've been eating fast food on the run a lot more than usual. And I feel awful now! Aching muscles, sore joints, overwhelming fatigue, and just so run-down. I'm getting right back on my healthy diet so I can find the energy to get through the holidays!!
Hyper, I'm with you on the fruit and fibre - it really wreaks havoc with my gut. In fact, my optimum number of fruit/veg in a day is about three - and I don't have Chrones.
Kathyx
Hi Blue Kat,
I find staying away from sugar and bread improves moisture in Sjogren's.
When I attempt bread/sugary things, my mouth and throat become sore. After eating it, I become more irritable.
Therefore I try a 'lean' type of Atkins Diet. Lean as in no bacon or other fatty things. But all the more vegetables, chicken breast (grilled) and some low fat cheese (like cottage).
And maybe most important: I stay away from coffee (since last year). Coffee (all types) really made my joints hurt so bad, I thought I had RA. I quit the bean and things markedly improved!
I know that a meal of oats is supposed to help balance your cholesterol. An article in a "Prevention" book suggested that Fruit and Rice would lower Triglycerides. Both of these seemed to have helped me with those issues. A meal of Vegies only lowered my blood sugar numbers better than fasting. While fasting I have noticed my sugar levels go up every time just like having an infection or illness.
DEFINATELY!
https://sjogrensworld.org/index.php?topic=12998.0
Read that thread to see what the Sjogrens Foundation says about diet.
When they say certain foods are triggers .. they aren't kidding!
I have tried every diet and their variations over the course of the last 10 years. My last venture was with the Mediterranean diet...I was miserable. I recently eliminated any type of grain from my diet (I already eliminated most sugars except for small amounts of agave nectar and gummy lifesavers)...What a difference!!! I still have many of my symptoms but they are reduced in frequency and severity. My stomach and digestive problems are completely gone...after over 7 years of constant bloat, pain, slow digestion, and all sorts of bothersome stuff, I feel free from that misery! Surprisingly, I have had no cravings for breads, pasta, or anything else, for that matter. I find that I am rarely hungry and search out "good for me food" instead of grabbing something just because I feel hungry. My energy level has increased, although I still don't sleep well, and my mood/stress levels are decreased. I have had the energy to go do things that I haven't been able to in years and I have already lost ten pounds! I will NEVER go back to eating grain products, especially since I don't miss them and how much better I feel without them. It is not worth it. I have spent over 20 years feeling exhausted, foggy, and physically drained; I feel like life is worth the effort now. My salivary gland still hurts, my ear and sinuses are still congested, my mouth still burns, my fingers still ache or go numb, and I can't sleep, but I can tolerate those issues. My stomach bloat and pain was so intense that I barely noticed my other symptoms, but it is gone and I have realized that I have lived with the other miseries that I am used to them. I really cannot remember what it is like not to have SOMETHING hurting, burning, aching, or just generally making me feel icky, so I rejoice that at least one of my symptoms has seemed to have left.
So basically, Charla, you're following the Caveman Diet? How would that work if you're not a huge fan of vegetables?
That's my biggest problem, BonusMom...I'm not a huge fan of veggies and I LOVE breads and pastas. I'm going to have to really work hard on this, obviously.
In general, I despise most veggies and we are supposed to eat sooooo many! I have a juicer that I use and it's really easier to get the whole amount. My main diet consists of whatever is around to munch on. I usually will cook a chicken and shred it, cut up cheese, put out nuts and fruit...basically anything except for stuff that contains grain. In no way do I focus on how many veggies I am getting a day...but I will cook with them along with the juicing. Today, my hubby and I went to Red Robin and I ate fries, some chicken, and a hamburger patty with lettuce, tomato, and mushrooms. It works for me and is much easier to follow than the one that I tried a few years ago which was recommended by a homeopathic doctor (I thought that I had thrush but I think it was just burning mouth syndrome). All grains, yeasts, dairy, fruits, and sugars were a no-no; I thought I was gonna starve to death because all that was left were things I didn't like, such as veggies. I literally quit eating except because I was so miserable and depressed, believing that my enjoyment of food was a thing of the past. When I dropped under 110 pounds, I quit because it wasn't working, I still had instances of the burning in my mouth. This diet is much easier and I even allow myself bites of pizza or something else in the forbidden zone about once every week; just not a lot. Usually I don't even want it, but my daughter loves to cook cookies, cakes, and stuff I don't eat normally, but I'll take a bite just to make her feel that they are irresistible. She continually brings home ding-dongs, twinkies, and other goodies from her grandma's and I'm not even tempted, even though I used to love things like that. The diet is just my personal way of managing my symptoms and it works, that does not mean it will work for everyone. Sjogren's presents itself in so many different ways that can be unique to each person so, just because this works for my stomach problems and energy level, does not mean it will work for someone else. I have tried so many different things and I figure if something isn't working for me within two weeks, then I'm done with it. This diet showed results almost immediately and I was desperate. My stomach was so swollen and my digestion was so slow that I couldn't function.