ok found yet another diet out there that 'claims' to really help your sjogrens???.
anybody try the eat to live diet by Joel Fuhrman, md??
Boy you sure are looking for a diet. I hope you find something that works for you. What works for one person may not work for another.
Yes, I ate Eat to Live strictly for about 6 months. I saw a lot of improvements. I had no weight issues; the few pounds I was trying to lose fell right away. My "transit time" decreased greatly for the first time in my life. That must help any kind of leaky gut issues I have. After awhile, I ate almost no grains.
I didn't notice any difference in dryness symptoms. I haven't found any dietary modification that helps that, although some foods make it worse.
I still eat mostly ETL, meaning mostly cooked and raw vegetables and fruits, with beans and nut and seed butters for protein. Also omegas. I've added sauerkraut. When I crave meat or fish, I eat it. Ditto rice and corn. The idea in ETL is to use all available calories to get as many micronutrients into your system as possible. It works for me.
I think a lot of people could benefit from ETL.
I still take meds, but I respond well to them. I take supplements for energy and brain fog, and most days, it's enough. I take care of my eyes and teeth. I exercise, drink lots of water, and stay out of the sun. In return, most days, I'm not limited by either Sjogrens or Lupus. I know from experience that I would be a lot worse if I didn't eat well. I'm not in remission and I figure I'll probably need new/more meds every couple of years. But I feel that I am doing everything I can to get as much quality of life as I can. So there it is, FWIW.
Val, if you're interested in ETL, there are lots of free resources available. I got the book from the library. Dr. Fuhrman's website has a lot of free stuff on it. He also offers one-on-one counseling for a fee, but I like that he gives everything else away. There's a very good support group in Yahoo groups; the one I liked is Eat-2-Live. It has an archive of recipes, lots of encouragement, etc., although most people on the website are there for weight loss (some amazing stories).
Good point Joe. While Val and others may want to look into different diets and eating patterns, others do not. I think I am one of those. I always have on my mind " I need to lose weight." I eat mostly vegetarian and try to be careful. The weight stays on, but I do not get all wrapped in it. My cholesterol and other numbers are all good. The only thing they can crab at me about is being overweight.
If I tried different diets, I would be second guessing myself, turning OCD, wanting to go back and try the one I just stopped. Val, please let us know how it works. Others do listen--and many will try others' diets. Lucy
ditto here.
I did ETL for the last year and took it one step further with 90/10 raw/vegan; however, I have gone paleo now--finding i needed meat in my diet. I only eat organic, free range, grass fed, etc. No dairy, eggs, gluten, sugar or grains. Well...you know this from our previous discussion. ETL is a great starting place to see what really works for you, which is what is most important. Foods that hurt me may not hurt you. For example, I ate lunch out today and suffered dearly this afternoon with headache and pain response with fatigue. It was the small amount of cheese that did me in...
If I had to start somewhere, I would remove dairy, then sugar, see how u feel; if you want to go further then remove the gluten and grains. I found ETL to be the easiest way to transition off the bad stuff.
I have been paleo for a week and do notice I feel better, am eliminating gluten for now. Suspected it before, was tested for celiac but neg. Still think I am intolerant, sucks coming from Italian heritage, can not do redsauce of any kind and now bread :( I am digestively feeling better. I changed a couple of things and not for sure it is the diet. Also started supplements and got off Plaquenil because the side effects were really getting to me. I wish I got good results like most of you. Diet is individual, we all react differently to foods, but I do not think processed anything is good for us.
Good luck with your search.
Sookie..i like what you have to say-you know how i always am looking for the dryness cure..if i cant get that then forget it!!!:)))). and you too Joe... and of course Lucy you make me laugh.. you have a great attitude about this--you sound like my mom.. that is a compliment..she doesnt beat around the bush..
i am going to get the book from the library and look into it.
i will keep everybody posted if i try it.
Offtopic: Sookie, how long have you been on CellCept? Were you dry before you started or did you become progressively drier while on it?
Styx
Styx - I've been on cellcept about a year and a half. That has helped the dryness quite a bit. I know that, because I tried going off of it last spring, and the woke up the next morning with my eyes stuck together!
My rheumy has said he thinks that if you find a good medication that slows down the AI response, it should help a lot of symptoms. So even though I went on cellcept for sun sensitivity and lupus stuff, a lot of my symptoms got better.
Hey Sooki, thanks for the info! I'm always curious about how people on various DMARDs think it has affected their sicca symptoms. I'm on AZA and while it almost certainly slowed things down and improve symptoms, I'm not confident enough to say that it reversed things. I've been off and on it so I'm going to try and see if I can stay on it for a long time and see what happens....
Sooki-what exactly is Cellcept? Has it helped your eye dryness that much ?? i wake up everyday with my eyes stuck together and use so many drops.. Plaquenil hasnt helped..!
Dr. Furhman has his office in Flemington, NJ, so about 30 minutes from me. I read his book more than 15 years ago when I was first feeling unwell. And, found it interesting. But, although I eat very little red meat, and mostly salads (not empty iceberg lettuce) I am not a vegan, and I have always made most of our food from whole foods. I do not eat bread as I would rather fill myself with something more nutritional. Like a dessert of Fresh Papaya and Kiwi fruit Salad with a dollop of whipped cream..yummm. Use the cut fruit in the AM with yogurt. p.s. you can rub the papaya skin on your face as an exfoliate...do a search.
For myself it has been more beneficial to eat small meals 5 times a day. I searched "foods that cause inflammation" check and avoid them. I do not use carbonated beverages, processed sugar and foods are very minimal, even canned items (high sodium). But, I have been like this for decades. I made my children's baby food.. no big deal, puree whole foods. Growing up my grandmother and mother cooked this way and we grew up in NYC.
* The thing with "diets" is that bouncing from one to another can do more harm than good, nutritionally and emotionally when you jump into a highly restrictive diet..you are likely setting yourself up for failure. And that does not feel good.
So I would rather spend my time researching nutrition as it relates to my specific needs.
For Dry Eyes I go to .org sites; not .com So when I do a search I add .org to filter out all the fluff that I can.
Search: Omega-3 fish oil, DHA, Dry eye syndrome, .org
Here is information on Omega 3, DHA, Dry Eye Syndrome http://www.dryeyeinfo.org/Dry_Eye_In_Depth.htm#The%20Omega-3%20revolution
"New research, presented for the first time at the 2003 Annual meeting of the Association for Research in Vision and Ophthalmology has found that high dietary intake of omega-3 essential fatty acids decrease the risk of dry eye. Using the Women?s Health Database at the Harvard School of Public Health, the investigators examined the dietary intake of essential fatty acids in 32,470 female health professionals. They found that the higher the dietary ratio of omega-3 to omega-6 essential fatty acids, the lower the likelihood of dry eye, and the higher the dietary omega-3 intake, the lower the likelihood of dry eye. Conversely, they found that the lower the ratio of omega-3s to omega-6s the higher the likelihood of dry eye"
Fish Oil: inform your Dr. and search for a reputable source.
Ongoing research— and some cautions
Physicians also are researching if omega-3 acids are best for dry-eye patients as part of their diet or in supplements. "The belief is that the supplements are purified," Dr. Laktany said. Supplements that use fish oil as a source of omega-3 acids can use wild fish, a variety thought to have more nutritional benefits, he said.
"Two issues with fish oil are the contamination with heavy metals and rapid oxidation after processing. It is important to choose a fish oil product from a company that deals with those issues," Dr. Chan said. Flaxseed oil and fish oil can increase clotting time; patients on blood thinners such as Coumadin (warfarin sodium, Bristol-Myers Squibb, Princeton, N.J.) should speak with their family physician before using the supplements, Dr. Chan said. He also said lactating and pregnant women should avoid supplements with the omega-3 acids and vitamins A, C, and E.
2 articles re: dry eyes and sjs http://www.eyeworld.org/search.php?query=sjogrens&submit=Search
Valene, have you tried punctal plugs. They have been my saving grace! They were a breeze to have put in and really work for me. The plug the tear ducts so that the tears we do have stay in the eye and do not drain away!
I was nervous to have them put in. Our eye doc is a hoot! He has seen us for 35 years. He met me at the door, honest to Pete, with a hard hat, goggles and a drill..
They just numb the eyes with a drop that did burn a bit and use tweezers to put them in. Took longer to quit laughing than it did to put them in.
Hope this helps someone!
thanks but 3 puncta have plugsand 1 puncta is cauterized! and im still bone dry.. :(
Let me throw something off the subject here. Not good for folks with AI to have Lasik/PRK surgery. Yes, the dr may tell you that you're a good candidate, but after he has your $4,000......he's off the hook. Literally. I know from experience. This coupled with Sjogrens is a real b++++!!. Lucy
I agree with Lucy! My wife has had Lasik. Her eyes are very dry. She believes she has an idea of how dry eyes feel.