I have read numerous articles and spoke to several people who say that by following an anti-inflammatory diet they have kept their Sjogren's or lupus in control. I was on such a diet when I was first diagnosed and went into complete remission and slowly went off the diet and the supplements and the symptoms returned. The doctor I saw for this is now gone and I've never been able to adhere to the diet since, I only weigh 117 and I am 5 6, and always lose weight whenever I try to go on the diet. Is anyone following this protocol and if so what supplements are you taking in addition to an anti-inflammatory diet?
I'm following an anti-inflammatory diet- Dr. John McDougall's - although as I mentioned in another post - it's the same diet used to reverse heart disease by Dr. Caldwell Esselstyn and Dr. Barnard's diet for diabetes (helps reverse Type 2 and reduce but not eliminate insulin in Type 1)- there is a cohort of these medical doctors using the same diet to treat various diseases and publishing in peer reviewed medical journals.
Dr. McDougall is against taking most supplements unless you are tested and shown to be deficient. The only supplement you must take is Vitamin B12. Vitamin B12 is made by bacteria in the soil but with our commercial farming techniques plus the fact we carefully wash our produce - we have lost much of the B12. He prefers we get all our nutrients in our food.
Dr. McDougall recommends that people who need to gain weight or retain it can add more calorie dense food such as dried fruit, nuts, avocado etc.
I found the diet to be far more effective than the steroids I was on. It doesn't cure - it puts things into remission or dulls things down so you can more easily live with them and if something is caught early, it can reverse some damage.
Thanks I have heard of that and will look into it!! I know b-12 IV's helped me a ton in the past and I am restarting through a local doctor. How much and what type of b12 do you take?
Mollie, I used to get injections of methycobalmin, but I discovered research at the Cochran Collaborative showing that under the tongue was as effective as injections so I switched. I get tested annually and since I changed to the sublingual my numbers have been good. I don?t absorb B12 well so I do take a large dose to compensate for how little I do absorb. I?m using Costco Kirkland brand methycobalamin B12. I take one pill a day.
do you feel any benefits?
I have lupus and Sjogren's. I don't follow a strict anti-inflammatory diet, but eat low/no sugar, low/no carbs, high protein, and a lot of fruits and vegetables. I drink water, herbal tea or fruit juice, no soda or caffeinated drinks.
Vitamins and supplements I take are A (tissue moisture), B complex (hopefully prevent nerve problems/ neuropathy), C (just a little bit), D (tested low years ago, improved and maintaining now), E, K (tells calcium where to go, not to heart), curcumin (anti-inflammatory), fish oil (eyes), calcium orotate (trying to overcome osteopenia diagnosis), D-Mannose (UTI prevention), and magnesium glycinate (natural muscle relaxant and sleep aid to prevent leg/foot cramps and get great sleep).
Other than Evoxac and Myrbitriq, I've been unmedicated (with doctor approval) for a few years and feel pretty good.
Quote from: mollie carey on July 05, 2018, 06:36:21 PM
do you feel any benefits?
I'm not sure if you meant this in regards to my diet or to the B12 sublinguinal pills?
In regards to the diet - as I mentioned this works better than steroids. I also had a lot of health issues go completely into remission. I expected my cholesterol would drop and so would my blood pressure so I could get off those medications, but I didn't expect my allergies to disappear and get off those prescriptions too. It didn't cure my Hasimoto's, but I haven't had to increase my synthyroid in 10 years so things are stabilize. But I have developed other autoimmune diseases such as Polymorphous light eruption which I had for 2 years a few years back. But my flares are milder, much milder as long as I'm careful to follow my diet. When I cheat - those flares get really bad and it takes a week or two to tamp things back down.
As for the Vitamin B12 - because I always ate some vegetables and was taking multivitamins previously, I never had the anemia that most people experience when they run low in B12 - instead I had neurological symptoms including a horrible runaway anxiety. It's been about 8 years since I switched to sublinguinal and my blood levels are always good and no more anxiety.
thanks so much, I read up on the diet and I myself have many food allergies which I think have been made worse by my leaky gut ~ can you tell me did you start slow on the diet or what do you eat like in a typical day?
Quote from: mollie carey on July 06, 2018, 07:55:24 PM
thanks so much, I read up on the diet and I myself have many food allergies which I think have been made worse by my leaky gut ~ can you tell me did you start slow on the diet or what do you eat like in a typical day?
I had read a book called "The China Study: The Most Comprehensive Study of Nutrition Ever Conducted And the Startling Implications for Diet, Weight Loss, And Long-term Health" by Dr Colin Campbell etc. I studied nursing at a highly regarded university and even had a rotation through the Diabetes clinic - and I was shocked at how little I knew about nutrition and how much of what everyone knows is from marketing. I actually thought the book was about tainted animal food when I got it from the library (at the time many pets died from tainted food made in China). the reason it's called China Study is one chapter is about the research the author did in China. When President Nixon opened relations with China they agreed to the worlds largest study of nutrition that has ever been done and Dr. Campbell was chosen to lead the study. I used to eat what most people eat - what is referred to as the Standard American Diet - I might have eaten a little better because I was eating a variety of veggies and fruit - not just meat and potatoes. Half way through the book I realized I had to change my diet. The China Study is full of references to research so I traced back through some of the Dr.s names and found several with similar dietary information - Dr. John' McDougall's seemed to be the easiest and cheapest to follow and he has a wonderful support board overseen by both dedicated volunteers, but also professionals such as the nutritionist Jeff Novack. That is where I decided to start - and over the last 10 years I've learned so much more - and I've stuck with Dr. McDougall's version of the diet because my original decision was the best one for me. All his information is for free on his website - you don't have to buy anything. At the time I was really sick - all the muscles in my body were swollen so I was having trouble using my arms and legs (Myositis). I had a slew of health issues such as syncope which weren't being helped much by the drugs my doctors were prescribing. I was desperate to try anything and the odd thing was this was a book I had no idea would change my life when I took it out - I thought it was about contaminated pet food.
My Drs wanted me to get into a wheelchair, and we were looking into adding an elevator to our house or moving. At the same time someone I knew whose husband was my age with MS (my original dx before it was switched to Sjogren's) had to be put in a nursing home - sad in your early 50's. So I decided to switch to the diet ASAP. We tossed a lot of food, donated unopened canned and boxed things to food banks and gave perishables away to friend and neighbors - all the foods we shouldn't be eating on a regular basis. DH went shopping to replace it with food we should be eating. DH joined me in changing his diet at home to support me - when out a work he would continue to eat whatever he wanted. It took us a little while to get over a nut and cheese addictions - within a month we finally were fully on the McDougall diet. DH felt so great that he decided he would eat this way all the time - not just at home. As for me, I went from barely able to walk a few feet to walking about a quarter mile and I quickly worked up to walking 5 miles a day.This is something I thought I could never do. This book changed my life which is why I'm so passionate about the book and the diet. I often wonder if I had always been eating this way if I would have so many autoimmune diseases.
Some people like to rip the band-aid off quickly - that's what we did. Others like to pull a band-aid off slowly, little by little and that's how some approach changing their diet - slowly. I actually think it's better to do it quickly - you'll see results faster. There is a learning curve as to how to cook without oil which after 10 years I don't even thing about. In the past I would think about which meat I want to prepare or about a type of ethnic food and then plan my meal around that. Now I think about which starch I want or what ethnic food - so my meal planning is still very similar. My food bills went down dramatically and we don't eat out often so we save money there too. There is also an adjustment to your taste buds - you use less salt - it can take a week to a month for most people's taste buds to adjust.
Also I have several food allergies and intolerances - I just don't eat those foods that make me sick - there's plenty of other choices.
My breakfast is always steel cut oatmeal (boring but I make a large batch to eat through the week). For lunch I usually have leftovers or maybe oven roasted sweet potatoes (I roast a pan full and keep them in the fridge) and a salad or veggies and fruit. Dinner might be something more complicated or easy such as chili or hash browns or paella or a stir fry and fruit for dessert. I'm a lazy cook - if it takes more than 15 minutes to make I probably won't make it except for a holiday meal. I did take many of my recipes and adapted them for this so much of what I eat is similar to what I used to eat. About 12 days of the year we have fancier, richer meals - birthdays, thanksgiving etc.
Skylar: when you say you are tested annually, for what? For the vitamins or for SjS? ccc
Quote from: cccourt1942 on July 08, 2018, 09:20:45 AM
Skylar: when you say you are tested annually, for what? For the vitamins or for SjS? ccc
My rheumy runs all kinds of tests all the time - but what I'm referring to here is the testing my PCP does annually - I have had problems with B12 for many years and finally have things stabilized. A few years ago I developed Polymorphous light eruption - my Vitamin D level became undetectable and it affected my parathyroid and caused painful and annoying bone growth so I take Vitamin D. And my Hashimotos - so I get tested for Vitamin B12, D and Thyroid level.