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Old 03-18-2006, 01:15 PM   #1
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Does anyone go to a nurtrionist? ? about proper nutrition for lupus sufferers

I have APS and although I haven't officially been diagnosed, I'm pretty sure I have Lupus as well (as my rheumie says, "Lupus with a question mark?). What I'd like to know is this: Does anyone know of any certain foods people with Lupus should avoid or make sure to include daily? How about vitamins or anything holistic? I'm curious. I noticed that when I was drinking soy milk and consuming other soy products, my symptoms were worse and lessened considerably when I cut out soy. Any insight or advice would be much appreciated.

 
Old 03-18-2006, 02:25 PM   #2
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Re: Does anyone go to a nurtrionist? ? about proper nutrition for lupus sufferers

i'm asking my doc for a referal to see a dietician next wk. too many dig prob due to meds. regardless, it would be a good idea i think.

cheers, lulu

 
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Old 03-19-2006, 07:28 AM   #3
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Re: Does anyone go to a nurtrionist? ? about proper nutrition for lupus sufferers

Hi - I don't have Lupus, but my daughter was diagnosed two years ago, so I find this board very helpful. We have never been to nutritionist per se - but before her diagnosis through reading alot and trial and error - we discovered that she has a wheat/gluten allergy (moderate celiac) which we've learned is very common in Lupus and other autoimmune disease patients. Since then we have taken it a step further - she now is on a very strict diet - basically Vegan - I can't say it works for everyone and I am surely not a doctor - but she has shown tremendous improvement and reduction of symptoms. She continues to take Palquenil - but the diet really seems to help. I think it's worth it to see a nutritionist or at least experiment with diet. We discovered almost 6 years agao how responsive (both positve and negative) her body is to dietary changes - I say whatever works! Hope this helps!

 
Old 03-24-2006, 03:04 PM   #4
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I've been tinkering with my diet ever since my lupus flares started dramatically disrupting my daily life about 1 1/2 years ago. If it wasn't for a nutritionist I began to see at that time, my best intentions wouldn't have taken me very far. Although you MUST be fully committed to changing your diet and should remember to have a lot of patience with yourself (there's a large learning curve), I think that the expertise of a nutritionist is indispensable. You're really learning to speak a new language and the nutritionist serves as your interpreter. When I decided to become a vegetarian to see what, if any, effects it would have on my symptoms, she held my hand and helped me figure out how to do it. I never ate even remotely the way I do now in my "former life" and because I learned how to eat and cook for health from a professional, I never go hungry as many people might think. It's not about deprivation!

Also very important in adjusting your diet is understanding your "constitution". That just means how your body and system is unique. As you pointed out soy wasn't good for you but it might be beneficial to others. I've seen both a Chinese medicine practitioner and an Ayurvedic doctor and was able to learn from them what kind of things are good and bad for my body in particular. For example, I had high cholesterol for most of my life and despite switching to skim milk and rarely eating cheese or fried foods, my LDL levels were always high. It was only when I cut out all meat completely (at the time still keeping the dairy) that my overall cholesterol dropped a dramatic 40 points.

It's all a balancing act and it will take a while to figure out what works best for you. After forming an initial plan, stay flexible, give new foods and supplements a chance to work their magic, and listen to your body. I started as a lacto-ovo (milk and egg) Vegetarian, transitioned back to light meat-eater, became a Vegan, and am settling in now with a Macrobiotic diet (the best yet for me). The key is being sure to limit inflamation-stimulating foods, such as: nightshade vegetables (Eggplants, tomatoes, white potatoes, and peppers), dairy, meat, foods containing trans-fats, white sugar, simple carbs (white rice, white bread) and caffeine. These are highlighted as likely triggers of inflamation among many holistic practitioners.

Another big bonus is having someone taking part in your diet with you if possible. My husband was the number one supporter of my dietary efforts. I couldn't have done it so quickly and successfully without him. It's much tougher to be the only one at a restaurant or family function having the healthy (a.k.a. weird) food.

Good luck! I hope you find this information helpful!

 
Old 03-24-2006, 06:20 PM   #5
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Re: Does anyone go to a nurtrionist? ? about proper nutrition for lupus sufferers

Moolata what a wonderful first post! I found it very helpful and thought provoking about the terrible way I allow myself to eat sometimes. You are so right it is all about commitment.

Welcome to the board and thank you for the info.

Glojer

 
Old 03-25-2006, 01:00 PM   #6
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Re: Does anyone go to a nurtrionist? ? about proper nutrition for lupus sufferers

Thanks for your insight everybody and thank you moolata for the information. I just picked up a book by Dr. Mark Hyman, co-author of "Ultraprevention" and author of "Ultrametabolism". I am going to go about things slowly to see what I can tolerate and what I can't. Giving up the white stuff isn't so hard. It's the wheat/gluten(should it be that that aggravates my symptoms), dairy, certain veggies, and my morning cup of coffee that will be tough! I want to check and see if my insurance will cover visits to a holistic health counselor. It's going to present its challenges but if helps stall things or prevents them all together!.......

 
Old 03-25-2006, 06:20 PM   #7
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Re: Does anyone go to a nurtrionist? ? about proper nutrition for lupus sufferers

Southjerseymom - it is worth checking out. My daughter and I spent the day together today and she is so committed to her diet now because she really does feel so much better. In fact, she's had a little cold for few days and she was commenting that in the past a cold would have put her out of commission for weeks, and this time it's just a minor annoyance. The idea behind it is that you should'nt eat foods which your body has to work hard to digest. Anyway - good luck! I hope things work out for you

 
Old 03-26-2006, 04:35 AM   #8
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Re: Does anyone go to a nurtrionist? ? about proper nutrition for lupus sufferers

Thanks Debjayg. You know, I wish more doctors would practice integrated medicine where they treat the whole person, not just writing out a prescription to aleviate symptoms. Doctors who use integrated techniques combine a variety of practices from traditional to holistic that best suit the individual. My previous rheumatologist after my first visit wanted me to take Plaquenil(sorry if I misspelled). In my case, I felt it wasn't necessary at the time so I refused. I stopped the overload of soy and started a low dose aspirin which seems to have helped at this point. There is research out there-nutrigenomics(the science of how food talks to our genes) and how certain foods(such as foods containing wheat/gluten, bad fats, processed foods, and even certain vegetables) can cause inflammation in the body and trigger the development of auto-immune diseases that we may me pre-disposed to.Now, I haven't read enough yet, so I'm not well-versed. I want to make it clear that I believe in traditional medicine when you have no other choice and things are really bad and life-threatening. What I'm saying is that it can't hurt to alter your diet and nutrition to see if that helps prevent or stall some of the symptoms. Perhaps then, some people wouldn't need to take the nasty medications and suffer the cruel side effects. I work with a nurse who is also a holistic health counselor. She became interested in the field when she went through years of battling Lyme disease. As a result she now has fibromyalgia. She said many doctors, unless they have an interest are not trained in nutrition. This is starting to change. People in med school now are taking courses in nutrition and alternative therapies so that they can better serve and help their patients. She also said the pharmaceutical companies are all about pushing product to make money, at whatever cost. I have alot to learn on this journey. I am NOT telling anyone to stop their meds. I just want to create awareness and interest in a topic most of us are unfamiliar with. I lurk these threads and my heart goes out to all of you who have suffered considerably. It's heart-breaking and scary. You are strong people and I keep you in my prayers. People who don't have an auto-immune disease such as Lupus or APS do NOT understand the daily struggles. Some doctors don't get it either. It is very REAL and our reality. I am fortunate at this point because my symptoms are very mild and "tolerable", but I'm scared of what the future may bring. That is why I want to see if nutrition can help. Can't hurt. I'll have to post my future "discoveries" when I learn more. Does anybody else have any experiences you'd like to share on how nutrition had an impact on your Lupus symptoms or progression?

 
Old 03-26-2006, 05:56 AM   #9
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Re: Does anyone go to a nurtrionist? ? about proper nutrition for lupus sufferers

SouthJerseyMom, I suspect my mom had APS, though she was never Dx'ed as such (her small-town dr. called it "thick blood"). Her heart was not good, and she found during a hospital stay one year that she only had one kidney (what a surprise that was to learn). She took Coumadin for years, then was taken OFF for dental work; and this set up a chain of cascading events that ended her life.

I knew two younger people, both diabetics, who "adjusted" their meds as they saw fit. Between them, they left two widows & five young children. Yet a diabetic can test his own glucose levels, whereas people with lupus & APS cannot test their own anything---we need drs. to monitor us, alas.

So, no, I'd never adjust my own meds or cease having check-ups. And I wouldn't assume my status was bound to stay "mild", as mild can cascade into life-threatening very quickly.

That said, I think combining traditional & nontraditional can make a whole lot of sense, but only as long as the effort is rigorously coordinated. I'm one of those middle-of-the-road types, I guess. And maybe a bit cynical about traditional medicine---but, alas, about non-traditional, too (why would one group be perfect?). So that's the spirit in which I wrote this. Take good care & best wishes to you, Vee

 
Old 03-26-2006, 10:14 AM   #10
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Re: Does anyone go to a nurtrionist? ? about proper nutrition for lupus sufferers

I agree - I would never suggest abandoning traditional medicine, but experimenting with nutrition based alternatives can't hurt. Different people respond differently to changes in diet - I say proceed slowly, pay close attention to the messages your body sends you and if you feel better - then something good is happening. I really became interested in the nutrition part of this through a friend who has Chrohn's Disease - she introduced me to the wheat free/Gluten free and, like I said, we discovered early on how responsive my daughter was to dietary changes - so she made the further changes. It was difficult in the beginning and it does take a strong committment, but when you have positive results, it just makes it easier. She just went for her 3 month check up and can't wait to see if there is any evidence of improvement in the bloodwork.

 
Old 03-26-2006, 03:41 PM   #11
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Re: Does anyone go to a nurtrionist? ? about proper nutrition for lupus sufferers

I'm in 100% agreement. I don't intend on abandoning traditional medicine but looking into alternative treatments in conjunction with traditional. I want to clarify that when my doctor suggested starting me on Plaquenil initially, the decision was up to me. He didn't feel it was totally necessary at that point, but was leaving it up to me. Well, why would I jump to point c without trying a and b first? Thankfully the aspirin is doing enough for now. Who knows about the future. But I will LISTEN to my new doctor and eat nutritiously(that part can't hurt!). Thanks for all the insight.
l

 
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