Blog

5

So I've had this one confounding issue alongside this nearly year-long paleo experiement, and it's been the group of symptoms described in a previous post of mine: http://paleohacks.com/questions/74585/looked-better-on-sad#axzz1mgvXziPq. In fact, nearly all my posts have something to do with it.

Mainly, a consistently red nose (doesn't really look like a lupus rash), flushing, puffy face (especially in the first half of the day), swollen/fluid retentive right hand, zero sex drive. It's sometimes worse after meals, but I'll have weeks on end where it disappears. Other seemingly random things I tend to lump in with this: numb big toe on my right foot (been this way for months), lightheadedness, vertigo when I close my eyes to sleep, intermittent hair loss. I've been eating a low-histamine diet without noticeable improvement. My thyroid is fine.

I just got an autoimmune panel back, and I tested a high/positive on my ANA, and they say it suggests a systemic autoimmune reaction. I don't really know what to do next. I got this test without the help of my primary physician, as he dismissed all of my symptoms and insinuated I was making it up. This does nudge me towards some clarity about a group of somewhat baffling symptoms that are intermittent and don't strongly correlate with food experiements. In the wake of this, some ideas I've heard: a supplement to help with glutathione recycling, bioavailable milk peptides for glutathione, and LDN. I feel wary about going down another treatment's rabbit hole without being sure. Another possibility is a false-positive, which isn't too rare with ANA as I understand. Which would mean I'd be back at square one and it's some shockingly banal thing like my toothpaste brand which I'll never be able to figure out. I just don't have the money or mental energy to pursue this thing for much longer, and it's making me suspicious of everything I eat. Could something else trigger a positive ANA result? Does anyone have experience with this?

Update, 3/28:

So I saw a rheumatologist who specializes in SLE. We had a very long appointment where she asked me about the nature of each symptom, did a full physical examination, and surveyed my whole medical record, every blood test, and my family history. It was her professional opinion that I did not have lupus or any autoimmune condition, and did not reccomend further testing. I'm in an asymptomatic bubble right now, which happens every once and a while. This made the appointment a little odd, since I couldn't show her exactly what was going on. It started when I eliminated all supplements besides D3 and added iodine back into my diet. I'm eating simple foods, mainly pork (to test for beef intolerance), eggs, root vegetables, sauerkraut, and plently of ghee. Very satisfying. Cautiously creeping along without symptoms.

flag
2 
 Go find a rheumatologist who deals with RA, Sjogren's, SLE (lupus), scleroderma, etc. S/he will chase down what you're ANA + for in a jiffy by ordering the right test. Don't waste time with ignorant PCPs or nonspecialists. I know many PCPs who won't chase down positive ANAs because, well, they just don't know what to do. – Namby Pamby Feb 18 2012 at 3:47
Have you considered meat allergies? – Bread-Eating Beelzebub Feb 18 2012 at 4:04
Namby, thanks, this is what I have to do. I was so turned off by my PCP and an allergist that I just sort of turned my back on my HMO. – StreakOfLean Feb 18 2012 at 4:45
Melissa, I have considered nearly every allergy, and maybe I've just been sloppy with my experiements, but it doesn't seem to line up. During an asymptomatic period, I'll eat GF beef, lamb, fish, pork, eggs, anything, and it's all fine. But, really, I don't know. I have haphazard food logs and a selective memory. – StreakOfLean Feb 18 2012 at 4:50
1 
 The classical 'butterfly' rash is only seen in a minority of lupus patients according to this page: londonlupuscentre.co.uk/lupus/symptoms Not saying I think you have lupus, but I definitely wouldn't rule it out just based on how the flushing/puffiness looks. – Not James Feb 18 2012 at 17:53
show 1 more comment

7 Answers

3

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.

link|flag
Thanks Zoe. I didn't get a definitive answer to what was happening, but did find a solution, almost by chance, when experimenting with a thyroid-centric diet a la ray peat. All of the symptoms vanished. And it wasn't like I was eating LC before But I do think I seriously messed with the function of my thyroid with all the food experimentation. – StreakOfLean Sep 15 at 5:14
It did, however, teach me lessons: 1) yes, going through the conventional AND alternative medical apparatus with bizarre symptoms is maddening and I have sympathy and for anyone who has done it. This really unnerved my view of medicine as it is commonly practiced. I spent thousands on labs, appointments etc and got no answers, relief, or even acknowledgement that I even had a problem. – StreakOfLean Sep 15 at 5:28
2) obsession over food was, for me, a SYMPTOM of the hormonal mystery that I was suffering from, the very thing the obsession was directed at solving. My mental state changed considerably with the new way of eating even before the physical symptoms subsided. I never, ever knew food could have such a profound effect on people's mental state, even while being versed in the paleosphere. This was especially awful because I essentially acted like a hypochondriac, undermining my credibilty with doctors, and the worse the symptoms got, the worse and more manic the obsession got, and vice versa. – StreakOfLean Sep 15 at 5:36
2

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.

link|flag
When the symptoms come, and for weeks I look and feel horrible, and my first reaction is total frustration and apathy towards all this work I do to eat paleo, sawing through oxtails and skinning rabbits... especially since this only started happening since I began eating paleo (roughly), so it taints the whole thing and I resent it. You're right, I need to remember that diet helps even if it's not this explicit N=1 benefit or total fix. – StreakOfLean Feb 18 2012 at 4:56
1 
 I completely hear that -- especially when I'm flaring (I swear that it's the office building I work in and the fluorescent lights that keep setting me off!!), it's so hard to make myself do the things that keep me from totally 'tanking'. I do as much as I can when I feel OK, so that I can take from the pantry and freezer when I just can't face cooking -- and I also do things like having my butcher pre-cut my bones to crock-pot size and such, because it -is- so difficult to do, especially when my mobility is drastically impaired. – Firestorm Feb 18 2012 at 15:33
1

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.

link|flag
Thanks. I often feel like I'm in this limbo where I convince myself the symptoms aren't bad enough to even pursue in a medical arena, and I get embarrassed that I've even gotten this far into it since people have cured worse with simple diet changes, so I try to take it all on myself. I think there's just one simple explanation around the corner, "if I eliminate coconut...". The thing doesn't go away, I try a doctor, ask for help, more dead ends, repeat whole process. Meanwhile my reproductive system has been dead for a year. – StreakOfLean Feb 18 2012 at 4:51
Doctors are often way too dismissive. Push past that. Try to find somebody knowledgeable who will take you seriously. For god's sake, you have a fleet of autoimmune symptoms. Somebody should be looking into ruling out specific autoimmune diseases and their mimics, like Lymes disease and various others. Try not to undermine your presentation when you visit the doctor - no self deprecating, no doubt! Smart people are full of doubt that doctors misunderstand as hypochondria. Confidently declare your symptoms to a specialist. – Jay Feb 18 2012 at 14:54
And, if you do have some sort of autoimmune disease, going gluten free is worht a try. Keeping your vit D on the high side (around 50-60 ng/ml) is probably the best bet. Make sure to get a decent amount of vit A too - maybe 5K IU retinol per day on average. – Jay Feb 18 2012 at 14:57
You've nailed my rapport with doctors. I'll say things like, "albeit these are minor symptoms..." or I'll just cave and get embarrassed instead of just being firm about the symptoms. The minor, even cosmetic, nature of the symptoms does give me that doubt, that the symptoms are real, but my persistence is grandiose. Thanks for the suggestions: I've been gluten free since beginning paleo, my vit D was hanging around 35 so I supplement 5k every 3rd day or more. I take a therapeutic dose (1 tsp) of FCLO every day, and eat offal regularly. Good to know I'm on the right track. – StreakOfLean Feb 19 2012 at 3:41
1

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.

link|flag
I was furiously writing when they were explaining it to me over the phone and missed the actual value, but the results are on their way, so I'll have numbers soon. – StreakOfLean Feb 18 2012 at 4:17
No electronic medical records where you're at, huh? I usually know before the doctor does (they get them first but I don't think they read them when they get them). – balor123 Feb 18 2012 at 22:43
1 
 Streak, if your naturopath knows what to do, that's okay. For diagnosis in ANA+ situations, rheumatologists are the ones with proper training. The first order of bidness is proper diagnosis. Then decide how severe are the symptoms. Then decide whether u need to be taking any medication or whether u wanna fix through Paleo diet/lifestyle. At that point, you can leave your rheumy, but u need someone to make a proper diagnosis first, not the easiest thing, since u can have markers but no symptoms = no diagnosis yet. Or no marker but symptoms = positive diagnosis. – Namby Pamby Feb 23 2012 at 15:20
1 
 Namby, thanks. I'm not particularly attached to naturopathy or anything, and I know he can't diagnose, this is just the route I went when my PCP told me to stop bothering him. I will head to rheumatology next. I'm just now questioning this entire thing, because if 21.41 U/ml in fact means a 1:20 titer, considered abnormal only by this lab's reference range, then I'd be going to a rheumatologist with a vague cluster of symptoms (which my Dr dismissed) and a piece of paper showing my immune system is fine. I did this whole tour of the allergy dept to no avail. I swear I'm developing a complex. – StreakOfLean Feb 24 2012 at 8:10
1 
 It doesn't matter what the titer is, just what the lab reports as the reference range. Your PCP is used to seeing lots of common stuff but not so good at more complex diseases. They have little patience for complicated problems. Specialists, on the other hand, don't see as many troublesome patients so they tend to be more empathetic. Just be sure to keep an open mind and respect their opinion and they'll respect you. Also remember that you're paying them for their time so by definition you can't be wasting it. – balor123 Feb 24 2012 at 16:16
show 5 more comments
1

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!

link|flag
Oh and what glutathione supplement/enhancer are you talking about? Something like Protandim? I have heard that it can stir up autoimmune symptoms from their website. I also had he flushing, puffiness and super water retention. – Jackie Feb 23 2012 at 5:01
This is helpful! I just started Glutathione Recycler today, it has all of the precursors, including L-glutamine. I did get a full thyroid panel with antibodies and it looked good. I'm still weary about taking bioactive whey because of my acne, although I've never taken it so I don't know. Thomas Cowan in SF prescribes LDN, so I'm looking into it. It's just daunting to have to go back to my HMO, see a rheumatologist, get more tests, then go to a out-of-pocket physician to get a drug, then pay for the drug, when it just could be my inability to do a proper elimination diet or something. – StreakOfLean Feb 23 2012 at 5:56
Also, I was eating paleo (gluten-free) for a few months before any of this started up. – StreakOfLean Feb 23 2012 at 5:58
Join the club, mine showed up when I was VLCing (and 80% Paleo). I suspect that it was my ketogenic diet which weakened my immune system, as other symptoms immediately showed up: cold fingers, dry skin, constipation, brain fog. – Namby Pamby Mar 20 2012 at 4:37
1

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.

link|flag
I think ur right on about those antibody tests. My rheumy has been testing me for various connective tissue Ab tests. Your status could change in a dime, and sometimes symptoms appear before you show antibodies. The only way to be on the ball is to constantly test. If you have a rheumy like that, consider yourself blessed. – Namby Pamby Mar 20 2012 at 4:09
1 
 But the ANA test itself might not be too helpful if it's the generic Posisitive/Negative type of test. For Labcorp and Quest, you need to order a specific antibody tests AFTER you test positive for ANA. So it's usually ordered by people who know what they're doing: i.e., rheumatologists or endocrinologists, not GPs or PCPs. – Namby Pamby Mar 20 2012 at 4:11
Yeah there is a long list of antibodies to test for, along with a bunch of other things. :/ And it's possible to have ANA-negative lupus. And there is a huge list of disorders involving facial flushing. Narrowing this stuff down doesn't seem easy. – Not James Mar 20 2012 at 4:28
1

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.

link|flag

Your Answer

Not the answer you're looking for? Browse other questions tagged or ask your own question.