Just a quick question. My ana came back positive, >1:1280 nucleolar pattern. My main symptoms are extreme fatigue, muscle pain, some bloating and mild pain in the right upper quadrant. I do have a mild rash in my cheeks. It's been there permanently growing for about two years and so far I thought it was melasma. My GP referred me to a gastroenterologist who said that I should not pay attention to auto antibodies. He wants to do a gastroscopy to check if I have celiac disease (which I don't think I have). Any thoughts? Anybody else who has been told that a titer this high is not significant and should not be checked any further? Thanks!
Hi & welcome. I'm just a patient, but I've always thought ANA of 1:1280 is significant. Did your gastro say if Celiac can elevate ANA, and to that extent? Also, I think there are blood tests for Celiac that can be done in advance of a gastroscopy, but that gastroscopy is viewed as a pretty definitive test. Were those tests run? If YES and were positive, I'd have the gastroscopy. (BTW, you could also check out the Celiac board.)
In addition to the basic ANA, were any specific ANA "subtypes" run? e.g., ones associated with lupus, inflammatory muscle conditions, inflammatory bowel conditions, etc.?
What does your mild cheek rash look & feel like? I ask b/c rashes are common in lupus, BUT also in inflammatory bowel diseases, Celiac, etc. The "itch factor" could be useful info. So could photosensitivity.
Why do you think Celiac isn't likely? (Am only curious, you don't have to answer.) I had flaring GI problems for years, which my drs. thought was something GI-specific. But multiple invasive tests ruled out Crohn's & UC, and Celiac was also nixed. I was finally dx'ed with lupus, but I had other problems in addition to GI nastiness that tilted strongly to lupus...
In your shoes, I'd want to start ruling SOMETHING in/out. An "out" is useful, too, because it forces drs. to switch gears. I hope others chip in soon with more. With my best wishes to you, Vee
Thanks Veej! The gastroenterologist wants to do a gastroscopy because that's his specialty. I read his profile before going to see him. He told me not to pay attention to the ANA antibodies. He doesn't think that they are related to celiac disease or my symptoms.
I do not think I have celiac disease because after reading a lot, I came up with an intestinal candida diet. I tried it(no sugar and no carbs) for some time and I did notice the improvement. Then I saw a naturopath who told me that diet is not enough, so I added probiotics and a medication for candida. In my case fruit seem to do the most damage and this is why I am more inclined to think that what I have is candida.
Next week I have an appointment back with my GP to see if she refers me to a rheumatologist. I do think that the ANA titer is quite high and I would like to be seen by someone who looks at all the symptoms and not a gastroscopy specialist who only wants to do this. I agree with you that I first need to have some sort of positive lab results in my blood tests that point towards celiac disease before doing other studies.
In regard to my rash, it does not itch. It looks like melasma and I never suspected anything else, except now that the ANAs came back positive. Also, my GP ordered an ENA screen with the ANA and it came back negative.
aleyfre, I wasn't saying I think a gastroscopy is a "bad idea", I was wondering (like you) why your GP sent you straight to a gastroenterologist... A big clue might be what you just added, that your *ENA* came back negative. You could ask your GP which "subtypes" were included in that ENA, and which AI's she's ruling out as a result (at least for now). Your GP's approach may suddenly make a lot more sense, once she explains that.
You could also ask for copies of all your labs, as it's good to keep your own file, esp. while you're still in diagnostic mode.
You also could ask if any of your recent dietary modifications & supplements could affect any future tests. (I avoided changes & additions, to enable my drs. to see me "as is".) Let us know how it goes. Wishing you good luck! Best wishes, Vee