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Testing for Antinuclear Antibodies for Autoimmunity

by (5132)
Updated about 5 hours ago
Created May 17, 2011 at 10:58 PM

My aunt tested "positive abnormal" on Antinuclear Antibodies Direct. However, the doctor (hepatologist) failed to follow through and we have no idea which particular antibodies are responsible (e.g., RNP antibodies, Smith anbitodies, Sjogren's SS-A/B, etc.).

When I myself tested positive, my neurologist tracked it down and was able to pinpoint Sjogren's Anti-SS-B as the offending antiboddy. This resulted in my diagnosis of Sjogren's Syndrome. Going through my lab works, I now realize that I tested positive on "Antinuclear Direct" a year earlier on my nephrologist's blood order. He never followed through with it either.

When I tried to have the hepatologist follow through, she remarked that it doesn't seem to be causing problems and she could go see a rheumatologist if she's inclined. (My aunt also happens to suffer from chronic hepatitis B contracted early in life -- my understanding is that this too could be an autoimmune disease: could she be testing positive for this, then?)

Now, my question is, does testing "positive abnormal" on Antinuclear Direct imply a particular type of autoimmunity? Shouldn't she, for example, go see an endocrinologist instead, as she is 70 years old and seems to have mild, thyroid-related (rather than connective-tissue related) symptoms: fatigue, fungal toenails, etc.?

If you have Hashimoto's or Ulcerative Colitis, you would not test positive on ANA Direct? Is that only for connective-tissue related autoimmune conditions (RA, Sjogren's, Lupus)

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5132 · September 07, 2013 at 1:28 AM

So see an endo, not a rheumy? That makes sense to me. There seem to be more autoimmune diseases covered by endos than by rheumies. At least, they seem do more tests than the rheumies, who seem to only test Rheumatoid Arthritis Factor and uric acid levels.

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285 · May 20, 2011 at 5:19 PM

@tartare - every lab reports it differently, my guess is that positive = anti-bodies present; abnormal = concentration [or titer] is outside the normal range [usually ≥ 1:40, or ≥ 1:80]. Some labs will report this as "positive - low" or "positive - weak", and some will even report a low concentration [1:40 or 1:80] as negative. Some labs will also report a "pattern" [eg, speckled, etc] which can be used to help in Dx'ing. http://tinyurl.com/67foht4 [NB: I have no medical training - I just have a lot of autoimmune stuff and I've been getting all these labs for years].

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5132 · May 19, 2011 at 2:32 PM

Actually, mine never mentions "titer". My tests are from LabCorp and is specifically labeled "Antinuclear Antibodies Direct". Yes or no.

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5132 · May 19, 2011 at 2:25 PM

And the only reason I know I tested positive on ANA is because I happened to order my blood tests since I live in NJ. Imagine, testing positive and not knowing if you did in the past or not. Doctors then always wonder, what's your "etiology" on this, eh? Must be "ideopathic." Giv'em a break: they're seeing 8 patients per hour and they're being squeezed by HMOs. That's why you have to do the extra work, collect all blood works, interpret the findings in case your doc with purported training missed anything. IN my experience, they miss a heck of a lot!

3c6b4eed18dc57f746755b698426e7c8
5132 · May 19, 2011 at 2:22 PM

I believe it's one or the other. Positive or negative. My tests show no numbers: just says "positive abnormal".

3c6b4eed18dc57f746755b698426e7c8
5132 · May 19, 2011 at 2:19 PM

MNS, actually, ANA tests are routine (or should be). I had mine done by a nephro 2Y ago when I wasn't sure I had done all immune panels. He ran it with hepatitis and vaccine panels. When I tested positive ANA, he either never noticed it, never said I should follow up or was ignorant of what ANA positive means. It took 2 mo years and an alert neuro to do follow up tests to finally figure it out. But do they really care: most doctors accept that it is not curable so if you barely have symptoms, then they shrug off and ask, what more can we do for you? Sad. They never look at the diet angle.

98148e265e1a9b27ce1c206190c1b8a4
5136 · May 19, 2011 at 2:08 AM

well, i hope that is not your diagnosis, and i'm glad you found Paleo, because I think it has really great merit when it comes to autoimmune stuff. I never really though I had issues with grains and as I've continued to remove them, more and more subtle signs that I *did* have some level of sensitivity to them shines through. I still will say I think reasonably high levels of quality fats (and quality food in general) are the most protective things we can do for ourselves.

98148e265e1a9b27ce1c206190c1b8a4
5136 · May 18, 2011 at 7:53 PM

whats the difference between testing positive and testing "positive abnormal" or is there not one?

98148e265e1a9b27ce1c206190c1b8a4
5136 · May 18, 2011 at 2:19 PM

@Namby Pamby, not my best wordsmithing, but i was a touch drunk last night. It's true though, aging can be a real bitch. @MNS did you get any follow up tests based on your ANA results?

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510 · May 18, 2011 at 2:15 PM

I have had a fluctuating high ANA titer for 12 years. I have a lot of symptoms that resemble auto-immune conditions (for example, my face gets a slight rash on it at times, but it isn't a "true" butterfly rash that is seen in lupus), but my rheumatologist just tells me that lots of people have high ANA titers. It is my understanding as well that some meds (seizure meds, in particular) can cause a false pos ANA. I'd be curious to hear from others who had high titers with no conclusive symptoms and whether or not they eventually were diagnosed with a full-blown auto-immune disorder.

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5132 · May 18, 2011 at 1:53 PM

yeah, those elder, extended family wimmen sure require some tender loving care as they get more elder, I tell ya. My hands are full now with more than one.

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5136 · May 18, 2011 at 4:42 AM

to be honest, ive never been to either an endo or a rheumy and feel somewhat guilty calling them by shortened lingo names like i know how an average one of either of them operates:) but I have done a lot of consideration of the situations for my elder extended family women.

98148e265e1a9b27ce1c206190c1b8a4
5136 · May 18, 2011 at 4:35 AM

Also, I liked your question because ANA has never been dicussed much here, which is odd to me, cause I feel like so much of Paleohacks ends up talking about autoimmune stuff.

98148e265e1a9b27ce1c206190c1b8a4
5136 · May 18, 2011 at 4:34 AM

i'd put it to you like a gamble... i figure given her situation and your intuition about her symptoms, chances are she'd get more bang for her buck from an endo. That said, cutting out dietary autoimmune triggers should help her no matter what... fungal toenails are the only thing about your post that raise an eyebrow... it seems to point to high sugar/carb intake... fungus wants its dinner...

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3 Answers

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285 · May 18, 2011 at 6:49 PM

Not much to add here:

  1. ANA is a pretty non-specific test, more for screening than diagnostic. Testing "positive abnormal" doesn't really tell you very much, and definitely doesn't "imply a particular type of autoimmunity". It just means that your aunt is producing an abnormally high number of anti-nuclear antibodies and you need to do more testing.

  2. As for the specific type of autoimmunity [ie, connective tissue vs GI vs thyroid, etc], I believe a positive ANA is found in all of these, as well as other conditions like cancers and infections. The test is most commonly assoc with ruling out a Lupus diagnosis - if you test negative on ANA, it's very unlikely you have Lupus.

  3. As with anything autoimmune-related, the key is finding the right MD. This is generally not going to be diagnosed and treated in the typical 10 min appt.

918ecd2369c4e8cd6a2d66846c20137c
285 · May 20, 2011 at 5:19 PM

@tartare - every lab reports it differently, my guess is that positive = anti-bodies present; abnormal = concentration [or titer] is outside the normal range [usually ≥ 1:40, or ≥ 1:80]. Some labs will report this as "positive - low" or "positive - weak", and some will even report a low concentration [1:40 or 1:80] as negative. Some labs will also report a "pattern" [eg, speckled, etc] which can be used to help in Dx'ing. http://tinyurl.com/67foht4 [NB: I have no medical training - I just have a lot of autoimmune stuff and I've been getting all these labs for years].

3c6b4eed18dc57f746755b698426e7c8
5132 · May 19, 2011 at 2:32 PM

Actually, mine never mentions "titer". My tests are from LabCorp and is specifically labeled "Antinuclear Antibodies Direct". Yes or no.

3c6b4eed18dc57f746755b698426e7c8
5132 · May 19, 2011 at 2:22 PM

I believe it's one or the other. Positive or negative. My tests show no numbers: just says "positive abnormal".

98148e265e1a9b27ce1c206190c1b8a4
5136 · May 18, 2011 at 7:53 PM

whats the difference between testing positive and testing "positive abnormal" or is there not one?

24868bf5aa2c49e269392765932d9dc4
1
510 · May 19, 2011 at 1:56 AM

@tartare--I can't seem to add another comment. I have had the "typical" follow up lab work done many times--the ones identified in the original question--and they are always negative. I was told that the usual scenario when a person has a positive ANA is that they DO run the "usual suspect" lab work. I'm thinking that the doctor must have suspected something, though, to even run the ANA in the first place. I'm not a doctor, though, so take my thoughts with a grain of salt! My husband is convinced they will one day stamp a lupus dx on me--I hope he is wrong, but it wouldn't surprise me at all if he turned out to be right. I tend not to be too much of a hypochondriac, but I have had very little success in getting doctors to listen to me re: symptoms that indicate/suggest auto-immune dysfunction.

3c6b4eed18dc57f746755b698426e7c8
5132 · May 19, 2011 at 2:25 PM

And the only reason I know I tested positive on ANA is because I happened to order my blood tests since I live in NJ. Imagine, testing positive and not knowing if you did in the past or not. Doctors then always wonder, what's your "etiology" on this, eh? Must be "ideopathic." Giv'em a break: they're seeing 8 patients per hour and they're being squeezed by HMOs. That's why you have to do the extra work, collect all blood works, interpret the findings in case your doc with purported training missed anything. IN my experience, they miss a heck of a lot!

3c6b4eed18dc57f746755b698426e7c8
5132 · May 19, 2011 at 2:19 PM

MNS, actually, ANA tests are routine (or should be). I had mine done by a nephro 2Y ago when I wasn't sure I had done all immune panels. He ran it with hepatitis and vaccine panels. When I tested positive ANA, he either never noticed it, never said I should follow up or was ignorant of what ANA positive means. It took 2 mo years and an alert neuro to do follow up tests to finally figure it out. But do they really care: most doctors accept that it is not curable so if you barely have symptoms, then they shrug off and ask, what more can we do for you? Sad. They never look at the diet angle.

98148e265e1a9b27ce1c206190c1b8a4
5136 · May 19, 2011 at 2:08 AM

well, i hope that is not your diagnosis, and i'm glad you found Paleo, because I think it has really great merit when it comes to autoimmune stuff. I never really though I had issues with grains and as I've continued to remove them, more and more subtle signs that I *did* have some level of sensitivity to them shines through. I still will say I think reasonably high levels of quality fats (and quality food in general) are the most protective things we can do for ourselves.

98148e265e1a9b27ce1c206190c1b8a4
1
5136 · May 18, 2011 at 3:53 AM

Bummer none of our usual suspects have addressed this question yet. Maybe your question could be whittled down a bit, but its a good question about the ANA Test.

I myself tested positive for ANA but they told me "they couldn't figure out why the titer was so low". I was not wholly Paleo at the time, but pretty close and certainly on a high fat diet. Another doctor sort of shrugged it off as "well maybe you could have subclinical lupus, but.. if it's not causing you a problem, well then... (then he just trailed off)" Well then i guess he was implying it s not too big a deal if its subclinical lupus. Get sicker and call me in the morning...

Anyways, i digress, and back to your question, it's my understanding from tenuous interweb research that both frequent "false positives" happen for ANA and also that people can sort of temporarily test positive for ANA based on a temporary condition. In other words, it seems to me that the ANA test is not really the end all be all, and certainly doesn't specify a particular autoimmune disease. That said, my Mom has both vitiligo and makes antibodies specifically for her T3 thyroid hormone (is that what would be considered Hashimoto's? couldn't tell if Hashimoto's was destruction of the hormones via antibodies or destruction of the glandular organ, the thyroid, itself - if anyone could clarify this seemingly basic point i would very much appreciate it.), so maybe my positive is a genetic inheritance? It does not seem that ANA specifies for particulars when it comes to autoimmune, but I would say the elimination of gluten, sugar and starchy carbs would pretty much help any autoimmune issue. Also, going to see an endocrinologist as a 70 year old woman seems a smart course of action to me!

3c6b4eed18dc57f746755b698426e7c8
5132 · September 07, 2013 at 1:28 AM

So see an endo, not a rheumy? That makes sense to me. There seem to be more autoimmune diseases covered by endos than by rheumies. At least, they seem do more tests than the rheumies, who seem to only test Rheumatoid Arthritis Factor and uric acid levels.

98148e265e1a9b27ce1c206190c1b8a4
5136 · May 18, 2011 at 2:19 PM

@Namby Pamby, not my best wordsmithing, but i was a touch drunk last night. It's true though, aging can be a real bitch. @MNS did you get any follow up tests based on your ANA results?

24868bf5aa2c49e269392765932d9dc4
510 · May 18, 2011 at 2:15 PM

I have had a fluctuating high ANA titer for 12 years. I have a lot of symptoms that resemble auto-immune conditions (for example, my face gets a slight rash on it at times, but it isn't a "true" butterfly rash that is seen in lupus), but my rheumatologist just tells me that lots of people have high ANA titers. It is my understanding as well that some meds (seizure meds, in particular) can cause a false pos ANA. I'd be curious to hear from others who had high titers with no conclusive symptoms and whether or not they eventually were diagnosed with a full-blown auto-immune disorder.

3c6b4eed18dc57f746755b698426e7c8
5132 · May 18, 2011 at 1:53 PM

yeah, those elder, extended family wimmen sure require some tender loving care as they get more elder, I tell ya. My hands are full now with more than one.

98148e265e1a9b27ce1c206190c1b8a4
5136 · May 18, 2011 at 4:42 AM

to be honest, ive never been to either an endo or a rheumy and feel somewhat guilty calling them by shortened lingo names like i know how an average one of either of them operates:) but I have done a lot of consideration of the situations for my elder extended family women.

98148e265e1a9b27ce1c206190c1b8a4
5136 · May 18, 2011 at 4:35 AM

Also, I liked your question because ANA has never been dicussed much here, which is odd to me, cause I feel like so much of Paleohacks ends up talking about autoimmune stuff.

98148e265e1a9b27ce1c206190c1b8a4
5136 · May 18, 2011 at 4:34 AM

i'd put it to you like a gamble... i figure given her situation and your intuition about her symptoms, chances are she'd get more bang for her buck from an endo. That said, cutting out dietary autoimmune triggers should help her no matter what... fungal toenails are the only thing about your post that raise an eyebrow... it seems to point to high sugar/carb intake... fungus wants its dinner...

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