In the name of being well-educated about our disease, what are the definitions of a some terms that we use on this site. The two that interest me the most are "lupus flares" and when it comes to food "allergic to . . ." Here are a couple links that I foound interesting. These are really "medical." I do also like Dr. Weil who is wholistic and medical.
Since being diagnosed with lupus, I've never been in remission. My lupus "flare" is controlled with medications, though not good enough right now according to my rheumy.
In my live support group one member is currently in remission (w/o symptoms) who's had it for years. She swears by a healthy diet and avoiding foods that can cause flares. However, her doc is taking no chances and has her on low doses of prednisone and plaquinil.
If I had a quarter for every time I asked about a flare when I first joined here, I'd be rich wouldn't I Ann? : )
I've committed to eating healthier, I'm cutting out processed foods, white sugar and flour, and eating more vegetables. Progress, not perfection..... I'm not a vegetable lover, but I'm learning that my taste will change as I get the processed foods out of my system. I also stopped using artificial sweetner, and switched to a natural one. My brain fog seems better, and I don't know if its from eliminating the sweetner, or if its because my stress level is better since I'm at home? My gut doesn't feel bloated any more, so I am motivated by this to continue learning about nutrition.
I had a gastric bypass 11 years ago, and I was pre-diabetic before that. The surgery cured that for me, and my cholesterol is normal as well. I have to take this into account, because sometimes I'm not sure if my stomach issues are from the gastric bypass, or from the lupus. All I know is that right now, I feel better - I eat smaller and more frequent portions like I'm supposed to. I tolerate dairy, but some ice cream bothers me. Its a process of elimination, but I am stubborn and have continued to eat something many times thinking this time will be different. My husband will attest to this lol. I wouldn't call this a food allergy, because the cause isn't specific. Its more of an intolerance.
I have a question. When you are in remission, does your blood work show negative ANAs? I went to a new rheumy, but I took my blood work from my previous dr. He said that if it weren't for positive results for several items in my blood work in the past along with symptoms and previous rheumy's diagnosis as lupus, he would say there is not anything wrong. Even though I still have non inflammatory joint pain and fatigue and general yucks. I do feel considerably better than I did 2 years ago, but not near where I want to be.
smiles,
Adrienne
Ann A. said:
I understand the technical definition of the term "allergy." I can therefore say with some confidence that I have no known food allergies. My body does not make - or make enough of - the enzyme lactase that is require to digest the sugar - lactose - in cow's milk. Therefore I do not drink it.
When I was younger and sicker I was working so hard to support and raise two kids by myself that I never spent much time thinking about different approaches to nutrition. It was earn some money, buy some food, get it home, and get it on the table. I weighed more than was healthy for me. I was hypertensive. My triglycerides, my total, and my LDL cholesterol were through the roof. I was definitely pre-diabetic.
By then my children were adults and I had more time to think. I watched several of my close friends and relations who had not been dx with any autoimmune disease and were the same age as I am have strokes and or experience kidney failure from diabetes. I decided to pay more attention to my nutrition. I have studied more than 32 approaches to diet. I decided that the most important thing for me was to eat a nutrient dense whole foods diet. The phrase - nutrient dense whole foods - leaves a great deal of room for people to play around with what suits their biochemical individuality, their cultural preferences, and even their likes and dislikes. I believe the nutritionists who say that in order to get as many nutrients from our diets as possible we need to eat a variety of foods.
I tend to like the very simple advice that comes from Micheal Pollan -"eat food. not too much. mostly plants." Today I actually uploaded a picture that includes a Pollan saying. He is pithy - http://www.goodreads.com/author/quotes/2121.Michael_Pollan
Since I started paying more attention to my diet, I definitely feel better. I am at a healthier weight and my blood chemistry does not look like that of a woman ready to keel over at any moment. Did the change in my diet produce the reduction in my lupus flares. I DO NOT KNOW.
I am trained as a scientist so I have some fairly stringent criteria for inferring causality. The relationship between my change in diet and the change in the frequency and severity of my lupus flares do not meet those criteria. A lot of other things were happening at the same time. I learned to cope with stress more effectively. My children reached adulthood and mostly that was stress reducing. I had several surgeries which successfully reduced the pain from several conditions. So, I can't put a finger on a causal direction. It could be that I am eating better because I am feeling better and have more time to think about and prepare food.
In whichever direction the causal arrows actually point, I am eating better and feeling better than I have in my entire adult life - I was dx at 21 and now I am 66. I am finishing a new graduate degree and getting ready to start a new phase in my career. The most important concept that I have learned in the last few years "nutrient dense whole foods." The second most important concept is "biochemical individuality." What works for one person might not work for another. If anyone ever does create a diet that works for lupus specifically, it won't be one single diet. Instead it will involve many different variations and we will still need to experiment to find which one works best for each of us. And I am absolutely positive that I love my life all the more for knowing that every day is an experiment.
And I am happier than I was when I started writing this. Thanks for starting the thread.
Hey Ann, I have had symptoms for years! But, because I had a horrible post partum depression that ended up being clinical depression and panic attacks, all the doctors assumed every symptom had to be related to that. Then, one after another more symptoms were popping up that would roller coaster. My hips and legs started hurting so bad I could not sleep, so dr said restless leg and change antidepressant. She did decide to run tests and found positive Ana, but said it was a fluke. A year later, Ana positive…she still did nothing. Then october 2011 my blood pressure shot up dangerously high. She ran tests and everything was a mess plus positive Ana higher than before. She then sent me to rheumy no.1. Rheumy 1 said I had lupus sle, raynaulds, hypertension, and possibly sjorgrens(sp?) and started me on standard meds. Oh, and I had been suffering from horrible cysts around my mouth area that dermatologist diagnosed as acne vulgaris. After a few months of plaquenil, the cysts started disappearing and I felt better. Still flared and never felt like I had before blood pressure sky rocketed. Right before that October, I had been having a blast painting every room and ceiling in my mother-in-laws house. I kept trying to ignore everything so I could finish, but I couldn’t. Okay, rheumy1 never checked my urine on regular visits and kept pushing Myers infusions and solumedrol infusions even when they didn’t give me much relief. I decided to go to rheumy 2. He did full blood and urine work up and everything was normal. He said if it weren’t for my 3 previous test results and rheumy 1 diagnosis, he would say I didn’t have lupus. Now he is sending me through X-rays, physical therapy, MRIs and an EMG for my hands. and he is having me come off the plaquenil. I feel like I’m back to where doctors think I’m a mental lunatic. I actually have thought about getting out in the sun, painting my bedroom, whatever to stress me into a full blown flare to get a def. diagnosis. I do understand about the fire damage. That is a great example to help understand what is happening. Thank you so much for taking time to explain that to me. I hope you have more good days! Hugs, adrienne
How long from your first symptoms to dx to now? Have you ever experienced a housefire and how much damage the FD can do with their axes and hoses? Have you ever seen how sometimes even a little fire can wreck the wiring?
Because I am relatively old, I am not sure how much health I can regain. Do you think that you are young enough? I've had so many surgeries that sometimes I just feel too traumatized. Have you had many surgeries? And then sometimes the damage from the meds lay me low. I am in a constant battle to keep my poor tummy from ulcering up. Do you have ulcers, boneloss or any other problems from the meds?
I am gonna go for it how about you?
PS in 2008-2009 I saw a new rheumie without documents. He told me that I did not have lupus. I decided to believe him and sunbathed. After that flare, he changed his tune. 20 minutes of sunbathing and my entire body was flammed up. Stupid, crazy, sunstarved.
I'm glad I could motivate someone! hahaha I'm on my way to read it now!
Ann A. said:
Adreinne you motivated me to write a new blog. Sometimes when life has knocked you down again, you have to stay down for the full 8 count and think about what you have to do in order to get up again. I am on the mat but do plan to get up again before the bell rings.