Anyone else with autoimmune flare ups?

Posted by parisl @parisl, Feb 2 9:30am

For all my life I have battled with doctors to find what was wrong with me BUT every doctor (and there have been many) always said I was in good health. Well, I finally found the right doctor! I'm happy to say he ran the right test and it showed I had both sjogrens & scleroderma! Then he ran a blood panel to see what foods or environmental things that my body would react to triggering my auto immune. Since I've avoided the 2 things, I've tested and my auto immunes are now in remission! I wish every doctor checked....it would save a lot of heart aches and years of being able to live happy lives!

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@parisi one test SCL-70) for scleroderma has a lot of false positives. Do you think that is the case? Did you have positive centromere antibodies? Once you have a positive ANA I don't believe it ever shows as negative. Eliminating foods can definitely help with inflammation but I have never heard of it changing blood test results. I would love to know more.

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@parisl ,
What were your symptoms? I have 3 diagnosed autoimmune disorders, but my blood tests are normally good. Don’t show inflammation. I’m wondering if I have a fourth one. I’m scheduled with Rheumatologist in the summer for Sjogrens eval. Tested negative. Did you test positive for that with blood test or lip biopsy?

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My doc says negative ANA results don’t rule out Sjogrens so how can one get a diagnosis if their ANA results are negative?

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@windyshores

@parisi one test SCL-70) for scleroderma has a lot of false positives. Do you think that is the case? Did you have positive centromere antibodies? Once you have a positive ANA I don't believe it ever shows as negative. Eliminating foods can definitely help with inflammation but I have never heard of it changing blood test results. I would love to know more.

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ANA test showed which autoimmune (done with blood test) and a separate blood test to determine which foods were causing flare ups. When eggs and coconut came up I was told to eliminate them from diet. Retested 9 months later test showed autoimmune was no longer flared up.

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@parrot53

My doc says negative ANA results don’t rule out Sjogrens so how can one get a diagnosis if their ANA results are negative?

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I had several doctors who tested me year after year and always said I was fine. When I finally tested having both sjogrens & scleroderma I took it to my Primary physician and she: "yes, I knew that but it wasn't that bad"! W H A T? I felt like that was telling a diabetic "oh, yes you have diabetes BUT your sugar level is good today so you're fine!"
If the test shows a specific number, my understanding is, it shows which autoimmune weather flared up or not...we deserve to know either way so we know what to expect when it does flare up.
The great thing now is, mine was flared up by foods that I can easily eliminate, just like a diabetic!

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@parisl

I had several doctors who tested me year after year and always said I was fine. When I finally tested having both sjogrens & scleroderma I took it to my Primary physician and she: "yes, I knew that but it wasn't that bad"! W H A T? I felt like that was telling a diabetic "oh, yes you have diabetes BUT your sugar level is good today so you're fine!"
If the test shows a specific number, my understanding is, it shows which autoimmune weather flared up or not...we deserve to know either way so we know what to expect when it does flare up.
The great thing now is, mine was flared up by foods that I can easily eliminate, just like a diabetic!

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The ANA does not turn negative, ever, I have been told, so maybe it was your food testing that turned negative-?

I have very high scleroderma antibodies but not sure I have it as yet. Blood tests do not suffice for a diagnosis, no matter how serious the blood tests look. And the SCL-70 has false positives.

Many autoimmune patients have internal organ damage. I have a friend who has had more than one kidney transplant. I have lupus but do indeed feel it is "not that bad"!

I gave up dairy, gluten, nuts, salmon, chocolate and avocado years ago. My ANA remains very positive.

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@windyshores

The ANA does not turn negative, ever, I have been told, so maybe it was your food testing that turned negative-?

I have very high scleroderma antibodies but not sure I have it as yet. Blood tests do not suffice for a diagnosis, no matter how serious the blood tests look. And the SCL-70 has false positives.

Many autoimmune patients have internal organ damage. I have a friend who has had more than one kidney transplant. I have lupus but do indeed feel it is "not that bad"!

I gave up dairy, gluten, nuts, salmon, chocolate and avocado years ago. My ANA remains very positive.

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I also gave up foods; gluten & soy, thinking those were the culprit and was about to give up other foods until I was tested. Everything had egg and or coconut...
Not everyone is the same but wouldn't it be great to find what foods are the problem then remove from your diet and feel better?

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@parisl

ANA test showed which autoimmune (done with blood test) and a separate blood test to determine which foods were causing flare ups. When eggs and coconut came up I was told to eliminate them from diet. Retested 9 months later test showed autoimmune was no longer flared up.

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That is great to know you got answers. My Blood tests came back in normal range but I am not sleeping with left kidney pain, dry eyes and mouth at night. I basically get very little rest and no answers. It is frustrating.

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@parrot53

That is great to know you got answers. My Blood tests came back in normal range but I am not sleeping with left kidney pain, dry eyes and mouth at night. I basically get very little rest and no answers. It is frustrating.

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Parrot53~ I'm so sorry for all your pain & sleepless nights...but mostly for all the running around you're getting! I honestly think each person is unique and shouldn't be thrown into a "normal range"! Who's normal range? Out of how many people? Is what I would like to know!!! As for your eyes, I was given ¡VIZIA, you can order on Amazon. I also took Himalaya Liver Care...(doctor prescribed eye drops & sister who worked in health care recommended liver cleanse)... I was at the point of trying everything and anything. I feel those 2 things with my Vit D (50,000 iu's once a week) were of great help. Also, my doctor recommended that at the point of day that I feel exhausted (2-3pm) that I should take a Power Nap. Not everyone can but if you can, try it. It takes the edge off sometimes.
You're probably at the end of your rope...so you do what's best for you. It's a long journey though. I hope you find what works for you and a great doctor who goes the extra mile!

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@parisl

Parrot53~ I'm so sorry for all your pain & sleepless nights...but mostly for all the running around you're getting! I honestly think each person is unique and shouldn't be thrown into a "normal range"! Who's normal range? Out of how many people? Is what I would like to know!!! As for your eyes, I was given ¡VIZIA, you can order on Amazon. I also took Himalaya Liver Care...(doctor prescribed eye drops & sister who worked in health care recommended liver cleanse)... I was at the point of trying everything and anything. I feel those 2 things with my Vit D (50,000 iu's once a week) were of great help. Also, my doctor recommended that at the point of day that I feel exhausted (2-3pm) that I should take a Power Nap. Not everyone can but if you can, try it. It takes the edge off sometimes.
You're probably at the end of your rope...so you do what's best for you. It's a long journey though. I hope you find what works for you and a great doctor who goes the extra mile!

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Parisl, thank you for the info. I am trying to keep a positive attitude and I will continue to speak up until I am heard. I do take power naps at precisely that time of day. lol 😂 I will look into VIZIA, vitamin D, and Himalaya Liver care. I am at Mayo for Cirrhosis and HCC care and FMD of carotid arteries. This kidney pain is two years new and I am hoping to get some answers tomorrow when I get a kidney ultrasound. We’ll see. Hoping for the best and some decent rest without pain. Thank you so much for your support.

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