What foods to eat and what foods to avoid?

What foods are good to eat that will help fight the sarcoidosis and what to avoid, i love fruit should i avoid oranges and are protein drinks bad?

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I dont think that you can put down any specific food or food groups at this time and be able to say there are links to issues and sarcoid... To the best of my knowledge there are a few theories floating but nothing substantial or proven difintively.

I may be wrong...

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AVOID SALT-- it will retain fluid in your body, which is already being retained by the steroids. Watch everything you eat and go for the lowest salt content. Then monitor your fluid intake, to include the foods you eat as well. a 1/2 cup of cantaloupe is equal to 8 ozs of water. Watermelon is 95 percent water. Too much water or fluids can be harmful for those of us taking meds that cause us to retain water. Learn to read the labels and go for as much fresh food as you can access. Frozen veggies are good; canned are not. Deli meats are full of salt as are cheeses, breads, condiments, pickles, etc. ASk to meet with a nutritionist to plan out a diet that works best for you.

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I have never been told to eliminate any food from my diet due to sarcoid. I was told to intake more fluid after I turned in lab work. Yep that orange urine will get their attention every time. "Very concentrated" lab notes. They didn't tell me that they wanted urine, until I got there. I just knew it wasn't going to be that hydrated healthy human look. Nope it was going to look like a girl that forgets to stop and take a drink. Next time I want a heads up, so I can produce the best urine! So watermelon would be my friend. I have never been able to hold it in long enough to retain it.

Oh, um, I already tortured myself with a crazy stunt to remove all dairy. For no good reason either. When I was in the dark ages.

There is some food that I am allergic to that I can't eat. They tested me because I was complaining of a food allergy and they couldn't figure out what it was. I couldn't either because I was trying to remove things. I tried to remove common food allergies. My allergies ended up being not so common. Beef, pork and cocoa. (pssst, I can't stop eating chocolate! I am not good at following the rules, so sometimes I pay, willing)

Knowing food allergies might be important. I don't know this to really be the case though. I think every individual is different. I do feel this way though, if you like a certain food and it is not unhealthy habit and you eat it in moderation, enjoy it.

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Hi, thanks for your reply, yes i avoid salt, i dont really like it, i read the sarcoidosis can produce too much vitamin d in the body causing horrible side effects, like headaches, blurred vision, numbness, vertigo, depression, pins and needles, joint pain and a metallic taste in the mouth, i try to drink as much filtered water as i can, to keep my bladder and kidneys healthy, as sarcoidosis can form calicium kidney stones and i dont want them, i dont drink coffee and i am not much of a tea drinker, my only vice is coca-cola or pepsi.

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You might want to look at this diet that another member posted on this site:

http://www.inspire.com/groups/stop-sarcoidosis/journal/diet-for-sarcoidosis /

I think protein shakes are good for us. I make one with rice protein powder. I avoid soy protein powder as I don't think soy is good for us sarkies. If you're not lactose intolerant I think whey protein powder is OK (but not sure).

Michele

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I think we need to try and drink as much water as possible as long as we don't have water retention issues. I know I feel much better when I get my 10-12 glasses of water a day!

I just try to eat healthy. Nothing too radical, just common sense. Most sarcies do need to watch vit D but the occasional glass of milk or bowl of ice cream probably isn't going to hurt you unless you have a dairy issue! I try to avoid artificial sweeteners as I just think they are bad for anyone! I also try, not always doing such a good job, to keep my sugar and carb intake to a minimum. If I eat too much starch or sugar, I feel sluggish. I think that's just a personal thing though and probably doesn't really relate to the sarc in any scientific way! I am also trying to buy more organic when possible as I feel the toxins and chemicals in a lot of the foods we eat certainly don't help an already down and out body! LOL

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I want to address the vitamin D issue. I avoided the sun and cut out all dairy for a time. I became very sick and no one could figure it out. They decided to look at my vitamin D levels. I did two blood tests and had to give my not so prefect urine. The first blood test they were shocked at the level of vitamin D, or the lack of. My doctor called me and asked me to come back in and could I do that blood test one more time. She didn't like the results. She contacted my pulmonary specialist and told him what her first finding was. On the phone before I came in and gave the blood she did tell me to drink more water than usual. Pft!

I was showing signs of vitamin D deficiency, another doctor noticed it and contacted my general doctor. I thought they are full of it. I have an entire team of doctors that care so much about me and they are talking to each other trying to figure out what is happening.

When the final urine and blood work came back they explained to me that I vitamin D deficient. I told them there was no way, I have sarcoidosis! If I remember right they explained it this way, I was four times too low.

When I went to the pharmacy the pharmacist that pushed the supplement over the counter said, "honey please get some sun and try and eat some dairy while sitting in the sun!" He explained the sun would be faster than the supplements. I love the sun, and this was such a nice thing to hear. I also wanted some damn cheese!

When I came home I was so afraid of those vitamins. 50,000 IU a day!, for a month. I did take them, and several blood tests to watch the ACE number. Then after that blood to watch what the vitamin D level was. It only got a little high, not too high with the supplements. This is on going now. I want everyone to know there was no change in the disease, some inflammation actually went down and the ACE did not rise.

They called me in again to give blood the other day. I saw that the order had vitamin D on it and ACE. There ended up being six tests on it. People get like awards in the newspaper for like the blood bank and I am kind of bummed that I can't give blood. I am getting so used to giving it. I give enough at the lab. Next time I am in there I am going to ask for a prize!

Oh yeah by the way, they didn't need my urine this time and I have been waiting to give the perfect sample.

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I know there are different vit D tests. I remember Paradox writing...

By Paradox
Posted June 17, 2008 at 8:49 pm
Patients with sarcoidosis (and other granulomatous diseases) have an increased risk of getting a high vitamin D but it is not in all cases. Only 50% of sarcoidosis patients have been reported to get high calcium in the urine (one of the earlier symptoms of high vitamin D). This is why it is suggested that people check levels (1OH and 1,25 OH as well as ionized calcium and PTH) before either supplementing or restricting vitamin D. In some cases it is not only a good idea to take extra, it may be needed.

Were these the same tests?

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I think the starch and sugars do effect us. they both contribute to and are a huge cause of inflammation in the body. you feeling sluggish i believe is directly related to the Sarc. and inflammation. I can sure tell when i take in too much sugar or starches....achy joints, sluggish, even much more tired and an increase of headaches.......

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I started using a juicer and do a mix of vegetables with apples and also fruit drinks with and without apples. I feel much better with this type of diet. I always did prefer to drink my meals; this approach is superior to boiler makers or 150 proof rum with vodka chasers.

There are a lot of foods that bothered me or started bothering me and my meal choices were getting more and more bland. The juicer approach has a lot more flavour potential.

Joseph

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yes, i too have a juicer and try to juice fruit as much as possible, what vegetables do you mix with your fruit?

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Hello,
I am seeing an allergist now, just had my 2nd series of tests. Surprising, nothing yet. I don't understand it. Every yr I am sicker than the yr before from pollen then the end of the yr. I do have issues w/foods and we don't know if it is intestinal or allergies. I have a daughter and grandaughter with food allergies.
Dr. said you can't be tested for cocoa. I didn't understand because they told my daughter that she is allergic to it. So what test it is? Is it the dairy? I am very confused.
So they have done 1/2 of the stronger doses for trees, grass, etc. I go again Friday and then go back for food and see if it is Chrohn's or ?. After 2+ yrs I'm at witts end with this too. I wish I could find a dr that does care and doesn't have my appts 3-6 months apart. Even my primary doesn't want to see me anymore. I have too many issues with no positive answers.
Hope you have a better Sunday.

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I pulled my lab results out of my file to see what food allergy tests were given to me. It says that it is the Allergen Profile, Basic Food. It lists the following foods tested. Milk (cow), wheat, corn, peanut, soybean, pork, beef, fish/shell mix, egg whole, chocolate.

I looked it up to see if this is a common basic food allergy test and it looks like it it.

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Hi I don't know what is the sign of low vitamin D I know the sign for high vitmain D is vomiting but I am very confuse have anyone use magnesium malate please let me know. vgirl

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Hi - I am thinking about getting a juicer too and trying a juice cleanse to see if that helps at all - I have read where not only do you flush out the bad stuff but you can also lose weight which would be fabulous. I was hospitalized with renal failure in Aug 2008 and had 2 huge stones bocking the entrance to the uretha so I had stents put in - just last week I had a 24 hour urine test come back to say my citrate is low so now I'm taking Uricit-K -
What kind of juicer do your recommend?

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I have a Jack Lalaine power juicer its great because you dont have to chop or peel the fruit or vegetables, it can handle large apples, oranges, pears etc, its really powerful, quick and easy to clean, its the best one to buy, regarding your stones that you had, try to drink a lot of water every day to keep your kidneys etc clean and to prevent stones.

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I use a medicine made by twinlabs called Fibroplex. It is malic acid and magnesium. I have used it for years to help the muscles (soft tissue). I experience very little muscle pain when I take it. It was first introduced to me by a naturopath for fibromyalgia. Now I have the sarcoid diagnosis I wonder if that is what I have had for all these years. It helps me.

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When you juice, add a large nob of fresh ginger. It is a very effect anti-inflammatory and sarc is a systemic inflammatory illness. Also use mainly vegetables and only one piece of fruit (eg. apple) to sweeten it, as there are too many calories from the fructose in fruit. Delirious posted an excellent diet for sarcoidosis.

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Sorry, I forgot to mention in my reply that protein drinks are bad for sarc because any hydrolised food has concentrated flavour enhancers because of the process used to create it. The main ingredient in these drinks is Hydrolysed Whey or Soy Protein Isolate. These tend not to agree with inflammation. But having said this I do occasionally have a protein shake with no problems.

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I started a no sugar, flour, wheat plan a few weeks ago in an effort to lose some of the prednisone weight and for the antiinflammatory effects. So far, it's really been helpful for decreasing the prednisone hunger. And I've lost a few pounds too. (I have been on pred two months and had a 12pound wt gain-yikes!) Hope it helps with the inflammation as there has been no change in my chest xray after two mo of pred, though the cough and tightness are gone.
Jo in No Cal

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