on September 11, 2012
at 05:44 PM
I don't know whether you've gotten a clear answer yet on what could be causing your symptoms. I know this is an old post, but I thought I'd comment anyway. I found it by searching this site for the key word "scleroderma" because that is the autoimmune disease I have.
I just wanted to say that even rheumatologists who see these diseases day in and day out often hesitate to diagnose them in the early stages. There can be a lot of ambiguity and symptoms are often non-specific. I have a very high positive ANA (1:640) which almost always indicates a connective tissue disease (like lupus, RA, scleroderma, Sjogren's, etc.) and I have still had a very hard time being taken seriously by doctors. I don't understand the reference ranges you were given for your ANA test. It is usually expressed as a titer because the solution is diluted until antibodies are no longer detectable - the titer refers to how many times it can be diluted. A low positive result is 1:80 and from there it doubles to 1:160, 1:320, 1:640, 1:1280, and 1:2560. There could also be a staining pattern indicated (such as nucleolar or speckled) which can point towards specific diseases. The blood work is never diagnostic, even when you test positive for a lupus antibody or scleroderma antibody. It is the clinical symptoms and signs that make the diagnosis. The blood results just point in a particular direction.
Anyway, I just wanted to share that in case you are still suffering from unusual symptoms and don't have any answers. If possible, I would get a rheumatologist to run the ANA again and do an ENA panel (antibodies associated with the connective tissue diseases). I have found the whole watching and waiting period extremely difficult as I accumulate all sorts of bizarre and uncomfortable symptoms but not yet enough for doctors to tell me for sure what is going on. There is just so little understood about autoimmunity, how it's caused, how to diagnose it early, and of course how to treat it.
Most doctors will tell you diet has absolutely nothing to do with it, cause or treatment. I am not against conventional drug treatment, but for these diseases it is really hit and miss as to whether it will improve a symptom or not. Diet is an excellent place to do your own experimenting, and it sounds like you're really being tenacious with improving and tweaking your own diet. I'm just starting out and I find reading about what others have done to be very helpful, so thanks to you and everyone else on these sites discussing what has worked and not worked for them.
I have cut out dairy, gluten, eggs, and processed food but am not fully paleo. I still eat some other grains and legumes. My husband has been strictly paleo for the last 6 weeks (but he does not have health problems). My diet is evolving slowly.
on February 18, 2012
at 03:11 AM
Just one thing that needs to be mentioned here. "Autoimmune" doesn't always mean it's related to, or fixable through, diet. I have an autoimmune disorder that can't be fixed with food. However, I can ameliorate some of the secondary issues and prevent concomitant issues if I take care of my nutrition--so I do.
I'd say that it's time to find a specialist and get some thorough testing through someone who isn't going to blow you off. Sometimes, we all need a little help to sort through things, and for those of us struggling with underlying health issues that aren't food related, it's important to remember that, by taking care of your nutrition, at least you're giving your body the best shot at staying as healthy as good choices can keep it.
on March 20, 2012
at 04:54 AM
I would keep an eye on your numb foot. Neuropathy sometimes results from connective tissue autoimmune diorders. It could overlap with some other conditions you might have: e.g., IR, CTS.
You probably need antibody tests for a whole host of connective tissue conditions: SLE, scleroderma, CREST, AS, RA, Sjogren's. Some of these are real nasty and the symptoms often overlap with one another.
I would do all I can to control my diet, while you and your doc investigate your symptoms. Being gluten-/dairy- and nightshade-free seems to be essential for your conditions. I would also do food avoidance with eggs, nuts, soy, and legumes, as those also seem to cause symptoms to flare up.
on March 20, 2012
at 04:05 AM
What my GP has told me based on a somewhat similar cluster of weird symptoms is that he thinks I likely have lupus, and although the antibody tests are negative so far, a lot of the time with intermittent or early-stage autoimmune problems, it's necessary to repeat tests frequently until a clearer picture emerges. My sister got about five thyroid panels before it became clear that she had Hashimoto's, for example. An ANA test is like $40-60 on directlabs.com, so I guess you could consider repeating it at different stages in your cycle of symptoms and see whether the results are interesting. Dunno how a doctor would react to someone bringing in their own test results. I suspect it's going to be difficult to dig into this properly without someone with expertise wanting to help you.
on February 23, 2012
at 04:58 AM
I had an onset of symptoms last year that included rashes on my legs, a few outbreaks of hives, numbness on the skin on the insides of both of my calves creeping down to my toes intermittently and up to my thighs. I eventually tested positive with ANA and for Sjogrens and thyroid antibodies (Hashimoto's even though my thyroid levels were normal. I cut out gluten and the ANA slowly diminished, my Sjogren's antibodies declined, and I am getting tested soon again for all of them, I am hoping they are all gone. Aside from cutting out gluten, my stress levels are greatly reduced from what they were, oh and I stopped losing hair. I recently started LDN with an integrative physician here in NYC who told me to stay gluten free, add L-glutamine as a supplement and I have felt so much better since then, but I will have to see what he test results are like wih my rheumatologist in a few weeks. Also, I had to see an endocrinologist to even get a full thyroid panel (including the test for the antibodies) so you may want to do that too. Best wishes and I hope you feel better soon!
on February 18, 2012
at 03:11 AM
What value was ANA? It is common for it to be somewhat positive and more so with age. You should be seeing a Rheumatologist but they don't get typically excited unless it's 1:240 or higher. Also, what was the pattern? Were there any monoclonal bands? Protein and immunoelectrophoresis? There's lots more tests to go through :)
My ANA is also positive btw, peaking at 1:160 I believe with all kinds of positive auto-antibody test results (SS-B, VGKC, GAD65, IgA-ttg) and a number of other serum abnormalities that come and go. My PCP also said that I was probably imagining symptoms except the "real" ones. Specialists tend to be a bit more sympathetic but still nothing to do. Rheumy said I have auto-immune tendencies. I said bologna and started Paleo diet religiously with notable improvement, most of it from going strictly gluten free.
on February 18, 2012
at 02:38 AM
I read your other posts and you seem to have approached this about as well as you could on your own. You are clearly very smart and have done your research but I think you've reached the point where you need to consult with an expert in autoimmunity (and autoimmune mimics). Get a new doctor, preferably a specialist in this area and push for thorough diagnostic testing. Good luck.