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Old 12-10-2005, 12:28 PM   #1
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clogan1974 HB User
diet and lupus, is there one?

I've heard a lot of information in the past on how based on one's genetic make up, there's a specific diet out there that can work for you. With that said, I was wondering if any of you know of or have heard of any specific diets and or food groups that seem to work best for patients with Lupus? I know avoiding salt is key, especialy when kidney involvement is present and drinking plenty of water is always a good thing for anyone. But I've been trying to find information on eating healthier and wanted to steer clear of fad diets. I guess what I'm really looking for is not a diet, rather a new way of eating better to maintain good lupus health. (ie a high protein, high carb etc...) I need to learn how to cook with out using salt or using salt substitues, but also looking for other suggestions on what may have worked for some of you as well. When you ask a doctor, you get the blanket answer of "eat well" but they never really go into specifics. Should I consult a nutritionist and or dietians?
I have Lupus Nephritis type IV, losing my hair rapidly, extreme edema in hands and legs/feet and face and joint pain pretty much every where.

thanks for listening

Cindy

 
Old 12-10-2005, 04:38 PM   #2
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Re: diet and lupus, is there one?

I'm so sorry that you are not feeling well. I don't know of a specific diet other than eating healthy - no processed foods, avoid sugars, salt etc. However, we discovered, in my daughter's case, that she definitely has a wheat/gluten allergy and when she sticks to her wheat free/gluten free diet she feels much better. Recently, I've read that many lupus sufferers do in fact have wheat/gluten allergies! I don't know if you've considered it before - but it might be worth a try. I hope you feel better soon.
Deb

 
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Old 12-10-2005, 06:49 PM   #3
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Re: diet and lupus, is there one?

Cindy, Could your rheumatologist or nephrologist give you names of nutritionists they know & trust? My hubby did this (not for lupus---for diabetes) and got the basic "eat right" reminders, plus diabetes rules of thumb, plus advice tailored for him specifically (his known food allergies suggested other adjustments).

Good luck. I think it makes sense to try to "eat right", especially knowing that we all face days during which we'll not feel well due to the lupus. All the more reason to feel as well as we can when we can... Sincerely, Vee

 
Old 12-11-2005, 06:32 PM   #4
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Re: diet and lupus, is there one?

Hi clogan1974,

I'm a little late jumping in here but I have sought the advice of a nutritionist several times over the past 6 years for a thyroid problem. The diet they seem to be leaning towards is the glycemic diet. The reports the nutritionist has given me are showing excellent results for all forms of problems, diabetes and thyroid problems topping the charts. Of course it also is very heavy on the veggies. Fruits are great too but they have lots of sugar so they must be limited. You can find really good glycemic diets on line if you do a simple google search. I hope you find answers.

May God Bless and Keep Us All
Patience 50

 
Old 12-12-2005, 08:40 AM   #5
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Re: diet and lupus, is there one?

Hi Cindy, there's not a "specific" diet for Lupus patients but, of course eating right & exercising is key to keeping things under control for us. If your doctor can refer you to a nutritionist they can help you figure out what you are doing right & where you can improve to help you with your energy and overall health. Overall though the American Dietetic Association has free information that is really helpful that you can see online - plus they have a lot of helpful links to the food pyramid updates. They also include information for people who have chronic illnesses as our calorie level might be lower if the activity level is lower.
Hope this helps & good luck to you. Keep us posted on how you are doing!

 
Old 12-14-2005, 09:21 PM   #6
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Re: diet and lupus, is there one?

Hi. I have tried every diet on the books to cure myself and have read a whole lot on the subject. If you are really ill at the moment, your best bet, in my opinion, is to go organic, almost vegetarian. Low protein...protein is hard on the kidneys....lots of vegetables, fruit, whole grains such as brown rice, and healthy fat....I would stick to olive oil and flaxseed oil. I would also start juicing organic vegetables, making smoothies (organic fruit, juice, flaxseed oil), and fresh vegetable soups- these things are easy to digest and you have a better chance of absorbing more vitamins and minerals from them. You will be amazed how much better you can feel. I would stay away from wheat, sugar, and dairy...these foods tax the system. If you are feeling protein deficient, I would shoot for hormone free skinless poultry or some fish. Rice pasta is delicious. Oatmeal is always a good and comforting food. If you need bread, I would shoot for spelt bread- there are some delicious varieties at whole foods....instead of butter, try spreading some olive oil and a small bit of sea salt on top. Sauteeing greens with garlic and olive oil is always delicious. Baked yams are also delicious. I would also make sure you are taking a really good multivitamin....Source of Life brand are great and go down well with my medications...grape seed extract and green tea extract are also some good antioxidants that don't impact lupus medications. Good luck and I hope you feel better.

 
Old 12-26-2005, 02:37 PM   #7
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Re: diet and lupus, is there one?

Hi Cindy,

I'm really chiming in late. I read the symptoms you listed and, although I haven't had any indication of kidney involvment, I briefly had the joint pain and swelling you wrote that you have. My input isn't about food.

Are you taking Celebrex? As I've written here in the past, I had an allergic reaction to Celebrex that caused my hips, knees, and ankles to take turns swelling and they hurt so much I could not stand for more than 20 minutes. When sitting, my legs had to be elevated. It was awful.

The 1st doctor I saw for a little rash on my arms and painful, swollen insteps decided I had an inflamation of the soles of my feet and gave me the Rx for Celebrex. At that time, I had no known allergies. Starting then, I kept notes of what doctor I saw, what he said, what meds. were prescribed and how I felt every day (this was all in a 3 week time frame). Each doctor got his own copy of my notes to that date! The 3rd doctor I saw did the blood work and told me I had lupus. He send me to the prince among rheumies who read my notes and deduced that my worst symptoms were because of my allergic reaction to Celebrex. He asked, "Does it seem to you that your symptoms got worse after you were on Celebrex?" Boy, was the answer YES! I quit taking Celebrex, was put on Naprosyn, and felt 100% better within a week. The swelling was gone. I could stand and walk without pain or limitation. I had missed 3 weeks of work, but could now work a full day on my feet again. I was amazed.

If you take Celebrex and can answer yes to that question, ask your doctor to consider if your worst pain and swelling may be due to an allergic reaction like mine was.

May lupus folks become allergic to new things and Sulfa is the most common allergy to show up. Celebrex has a sulfanomide in its chemical makeup. I was suddenly allergic to Sulfa and, therefore, to Celebrex. It was certainly a surprise to me.

Hope this is helpful information and that you can feel better.

Wishing you well - Barbara

 
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