Anyone have ANCA testing done by gastro doc or other doc? I am C-ANCA positive

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Noogie
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Anyone have ANCA testing done by gastro doc or other doc? I am C-ANCA positive

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Earlier this year after having a lot of gastro issues, my gastro doc ordered a bunch of tests and also wanted me to get a colonoscopy done (I am 48 years old), and though I haven't been able to do the colonoscopy yet (I have no one to accompany me), I did get the testing done. Everything came out pretty much normal except one- the ANCA test. This is an autoimmune antibody test that is done to rule in or out things like Chrohn's or colitis or other gastrointestinal disorders, but is also used in things like vasculitis. My test came back positive for C-ANCA and was then titered. They also followed that with tests for two proteins that are the most predominant ones that show up with C-ANCA, but I was negative for those. There may be other tests they can do because there are tons of other ones associated with C-ANCA, but the gastro doc could not do the tests for them.

Since this test shows I do have some autoimmune component that is currently going on or has recently affected me, I am trying to get in to a rheumatologist to see what I can do next. I have had fibromyalgia since about the age of 26 and am certain there was some sort of autoimmune component to the onset of that (I had a rapid weight gain and also rapid onset of carpal tunnel in both wrists for no reason- I wasn't doing any kind of work with my hands that would have caused it). The severe fatigue and pain scared me that it might be MS. I have dealt with it constantly since then and have had multiple flares where it worsens over the years.

Since my mid 30s I have had all sorts of weird symptoms waxing and waning and new ones showing up. I'm certain I had all kinds of people, not just family members, thinking I was a hypochondriac which is why I now get the tests and get copies of all my tests, including labs, ultrasounds, MRI, and x-rays. Some of my diagnoses are things like GERD, thyroiditis, tendonitis, asthma, rosacea, and possible dry eye or ocular rosacea (I don't have vision coverage so don't know when I will be able to get a proper eye exam).

In the last few months I have been pushing myself toward a more Keto-like diet and have lost 15-20 pounds and my gut has definitely felt better (except during hormonal times because of peri-menopause, which can leave me in agony for days, so I am watching that in case it is more than hormones).

My concern is mostly about the possibility of vasculitis because of symptoms and issues I have had for quite a while, and wondering if it can add to the problems of cardiovascular issues and Alzheimers. Part of what I deal with is severe dry eye (I have prescription drops byput they only help right after I use them). I am concerned my eyes may be getting damaged from it (my father has the same issue and has chronically bloodshot eyes, has been getting tear duct plugs done and redone, and has "cracked" his lens/cornea? from it so now has to heal that and is suffering a lot. Besides that, in possibly associated areas (ears, nose, throat, lungs), I have tinnitus, chronic congestion (my ears have popped every time I swallow for decades), constant thirst, deviated septum, GERD, and asthma. I am worried the GERD may cause more issues with my lungs than the asthma. I am on medication for it, and it is better with the diet change and knowing what foods and drinks to absolutely avoid.

If anyone has a gastro doc they go to, I would highly recommend looking into ANCA testing if you haven't done it yet. This could add another piece to the puzzle and may affect how people treat their issues. Some may do better with a Keto diet than others, and autoimmune issues may play a role in that.

If I can get into a rheumatologist and get further testing done, I will post somewhere in the forums what I find out.

Thanks.
3/4, ADD, Aspergers, Fibromyalgia, father is 3rd gen Alzheimer's :cry:
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slacker
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Re: Anyone have ANCA testing done by gastro doc or other doc? I am C-ANCA positive

Post by slacker »

Noogie, seeing a rheumatologist next is an excellent idea. They can help determine if you have an isolated positive ANCA test with no auto immune disease, or help you get to the correct autoimmune disease diagnosis, and appropriate treatment, if you have one. Good luck!
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Stavia
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Re: Anyone have ANCA testing done by gastro doc or other doc? I am C-ANCA positive

Post by Stavia »

Hi Noogie, welcome. We are an Apoe4 centred community, so we don't have an autoimmune specific focus. Your question is out of our scope and I agree with Slacker that the best source of advice is a Rheumatologist.
Good luck with your health issues :)

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SusanJ
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Re: Anyone have ANCA testing done by gastro doc or other doc? I am C-ANCA positive

Post by SusanJ »

Noogie, if you want to do some reading before you go to your rheumatologist, look into work by Sara Ballantyne. Her website is at https://www.thepaleomom.com/ and she has some (giant) books that go into the science of autoimmunity.

Hugs, and hang in there - that whole tackling the cascading symptoms is exhausting, scary and frustrating.
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