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Sarcoidosis and Other Autoimmune Diseases

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Old 01-20-2010, 06:35 AM   #1
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Default Sarcoidosis and Other Autoimmune Diseases

Is anyone here dieting that has Sarcoid or other Autoimmune diseases? I thought it might be nice to talk. My sarcoid was in remission for almost a year before this latest lapse (don't take live vaccine if you have a history of AI problems, just an FYI) and I know that taking off weight will help my health, and make me feel better in general. (I am on medical LOA from work.) However, working out is completely out of the question right now due to all my medication and other issues, other than walking.

I am calorie counting, and eating a whole foods approach at the moment. I find it really easy to keep up with and allows me more flexibility. Anyone else have any dietary successes?
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Old 01-20-2010, 03:15 PM   #2
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I have autoimmune issues (attacking my lungs, sinuses, nose and possibly ear cartilage, joints and skin).

My doctors haven't decided whether I'm currently in a remission, or whether my illness is slow moving, or I've just been diagnosed much earlier than is typical and this is the normal progression of some known autoimmune disease that usually isn't diagnosed until much later.

Sarcoidosis is one of the Autoimmune diseases that they initially suspected (and haven't ruled out) because of the lung issues. I'm very prone to sinus infections, bronchitis, and pneumonia. I'm recovering now from a respiratory virus that was pretty severe, and it was the first virus of that severity (in about six years or more) that DIDN'T turn to bronchitis or pneumonia. I'm hoping that's a sign that I am in a remission and that my lungs are healing.

I feel the best with fewest symptoms (and lose weight better, too) on a low grain, relatively low carb diet with lots of vegetables, and a few servings of fruit.

When I eat wheat or a significant amount of sugar (especially refined sugars, but even fruit if I'm eating too much), my symptoms tend to flare.
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Old 01-20-2010, 04:47 PM   #3
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Hi Alecto - DH has sarcoid. This winter has been hard. The dry air makes him cough a lot. Other than that he's been pretty "healthy." His prednisone has made him gain quite a bit of weight - especially after he lost too much before it was diagnosed. He is tired a lot from his medicines, especially the first few days of the weekly cycle.

Just curious - I noticed you are in Arkansas where it is warmer in the winter. Do you notice any changes when exposed to cold/dry weather? We've been considering moving south for relief.

Feel free to PM if you would like.
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There's no ticker here because I have no idea what I weigh, nor do I have plans to get on the scale anytime soon. My goals are to take care of myself in healthy ways and let the scale fall wherever it will. "It's not about skinny anymore - it's about healthy."
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Old 01-20-2010, 05:27 PM   #4
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I am actually one of the 3% who have zero lung issues with my sarcoid. Mine affects my liver, pancreas, spleen and eyes. As far as the weather, I have only had issues in the winter, and this winter has been especially harsh in Arkansas, so I don't know if I can make a judgment on that!

However, I would suggest if you do move, the southeast is not a good idea. The humidity, pollen and mold issues affect almost everyone with lung issues.
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Old 01-21-2010, 11:03 AM   #5
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Alecto - thank you for your reply. He seems to be the exact opposite. His is almost exclusively lungs with a little bit of skin involvement. He has regular liver enzyme and kidney function testing, but I think that is just precautionary because he takes methotrexate. So far, so good! Even with the occasional beer and wings. He does take folic acid and milk thistle. Do you take supplements to protect your liver?

Thankfully he doesn't suffer from seasonal or plant allergies (like I do), but I think humidity would be hard. He has trouble breathing sometimes in the summer here, but the winter is just awful for him. I think it will end up being the lesser of two evils. I would love to live on the west coast in a place where it is low humidity and moderate temps all the time, but we don't want to get too far away from our family either. Thank you for your input. As you know I am sure, there aren't a whole lot of us out there going through this and it's hard to get advice from someone going through it.
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There's no ticker here because I have no idea what I weigh, nor do I have plans to get on the scale anytime soon. My goals are to take care of myself in healthy ways and let the scale fall wherever it will. "It's not about skinny anymore - it's about healthy."
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Old 01-24-2010, 05:05 PM   #6
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My liver is seriously affected, so I don't take milk thistle, but I do take folic acid. I will discuss the former with my doctor this week.

One thing I have found is dieting can be very hard because some days I simply don't have the energy to get out of bed. I force myself most days, but I am always planning ahead on good days to make sure I have healthy food put away for bad days.
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Old 01-25-2010, 12:12 PM   #7
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I have had sarcoidosis for 32 yr. Lots of ups and downs. Lots of prednisone.
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Old 01-25-2010, 12:53 PM   #8
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Hi Carol! Thanks for posting. How does winter affect you?
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There's no ticker here because I have no idea what I weigh, nor do I have plans to get on the scale anytime soon. My goals are to take care of myself in healthy ways and let the scale fall wherever it will. "It's not about skinny anymore - it's about healthy."
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Old 01-25-2010, 09:41 PM   #9
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The sun causes my blood calcium to rise which ruins the kidneys so I actually do better in the winter.
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Old 01-28-2010, 01:42 PM   #10
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I have autoimmune issues as well. Fibromyalgia, ulcerative colitis and I had one episode (or flare) with sarc. I had a granuloma biopsied from my elbow that is consistent with sarcoid, and a few cysts that I suspect are too. My kidney dr hasn't totally ruled out sarc as a contributing factor to my renal insuffieciency. The large doses of NSAIDS I was taking is a known cause for the kidney problem. As long as my kidney function is stable, they are not going to biopsy or do any more testing. I also have rosacea which I'm finding a lot of people have first and are later diagnosed with sarc.

Kaplods we seem to have a lot in common!
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