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Edited on September 07, 2015
Created February 18, 2012 at 1:50 AM

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59d367d77f4082717bade07508624db8

(1198)

on September 15, 2012
at 05:36 AM

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.

59d367d77f4082717bade07508624db8

(1198)

on September 15, 2012
at 05:28 AM

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.

59d367d77f4082717bade07508624db8

(1198)

on September 15, 2012
at 05:14 AM

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.

E68bdbd83e45fd5be130e393ace9c9a9

(2058)

on June 11, 2012
at 11:47 PM

I know this old, but one component might be rosacea. Red nose, swollen face, flushing... does your face ever feel hot?

3c6b4eed18dc57f746755b698426e7c8

(5147)

on March 20, 2012
at 04:37 AM

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.

F2f559fe327007fd064a0f5bd79d6278

(156)

on March 20, 2012
at 04:28 AM

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.

3c6b4eed18dc57f746755b698426e7c8

(5147)

on March 20, 2012
at 04:11 AM

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.

3c6b4eed18dc57f746755b698426e7c8

(5147)

on March 20, 2012
at 04:09 AM

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.

De267f213b375efca5da07890e5efc25

(3747)

on February 24, 2012
at 04:16 PM

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.

59d367d77f4082717bade07508624db8

(1198)

on February 24, 2012
at 08:10 AM

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.

3c6b4eed18dc57f746755b698426e7c8

(5147)

on February 23, 2012
at 03:20 PM

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.

De267f213b375efca5da07890e5efc25

(3747)

on February 23, 2012
at 06:47 AM

Yeah I don't think your test results are all that interesting so far. Keep testing :)

59d367d77f4082717bade07508624db8

(1198)

on February 23, 2012
at 05:58 AM

Also, I was eating paleo (gluten-free) for a few months before any of this started up.

59d367d77f4082717bade07508624db8

(1198)

on February 23, 2012
at 05:56 AM

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.

363d0a0277a8b61ada3a24ab3ad85d5a

(4642)

on February 23, 2012
at 05:01 AM

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.

59d367d77f4082717bade07508624db8

(1198)

on February 23, 2012
at 04:46 AM

If you look at my other threads, you can probably guess who the naturopath is. He is the one that thought to order the autoimmune and thyroid panels, which my doctor would never do. I live in SF, so there is also Thomas Cowan as a possible MD, though it would be out-of-pocket.

59d367d77f4082717bade07508624db8

(1198)

on February 23, 2012
at 04:35 AM

I got my results from Immunosciences. ANA is 21.41 U/ml with a reference range of <20. Does this mean a titer of 1:20? Isn't that hardly anything? So confused. I also got a Rheumatoid Factor (<5.0) and C1Q Total Complex (<4.0), both of which were below the references ranges. I have a feeling that this is yet another red herring.

De267f213b375efca5da07890e5efc25

(3747)

on February 20, 2012
at 03:55 AM

I know this is a Paleo board but a naturopath is not the way to go. Sorry but I'm skeptical. I think you get the best care from traditional doctors who lean towards alternative medicine, not those who've gone over the deep end. Remember there's a sea of doctors out there - keep seeing new ones until you find your answers and odds are you eventually will. Might be hard with the HMO but you can try different specialists with different angles at least or see doctors in more than one area.

59d367d77f4082717bade07508624db8

(1198)

on February 19, 2012
at 03:44 AM

With my HMO, yes, but the tests were ordered by a naturopath through an independent lab.

59d367d77f4082717bade07508624db8

(1198)

on February 19, 2012
at 03:41 AM

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.

De267f213b375efca5da07890e5efc25

(3747)

on February 18, 2012
at 10:43 PM

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).

F2f559fe327007fd064a0f5bd79d6278

(156)

on February 18, 2012
at 05:53 PM

The classical 'butterfly' rash is only seen in a minority of lupus patients according to this page: http://www.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.

Ca1150430b1904659742ce2cad621c7d

(12540)

on February 18, 2012
at 03:33 PM

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.

4781cf8ae1bfcb558dfb056af17bea94

(4359)

on February 18, 2012
at 02:57 PM

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.

4781cf8ae1bfcb558dfb056af17bea94

(4359)

on February 18, 2012
at 02:54 PM

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.

59d367d77f4082717bade07508624db8

(1198)

on February 18, 2012
at 04:56 AM

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.

59d367d77f4082717bade07508624db8

(1198)

on February 18, 2012
at 04:55 AM

When the symptoms come, and for weeks I look and feel horrible for weeks, 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.

59d367d77f4082717bade07508624db8

(1198)

on February 18, 2012
at 04:51 AM

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.

59d367d77f4082717bade07508624db8

(1198)

on February 18, 2012
at 04:50 AM

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.

59d367d77f4082717bade07508624db8

(1198)

on February 18, 2012
at 04:45 AM

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.

59d367d77f4082717bade07508624db8

(1198)

on February 18, 2012
at 04:17 AM

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.

9d43f6873107e17ca4d1a5055aa7a2ad

on February 18, 2012
at 04:04 AM

Have you considered meat allergies?

3c6b4eed18dc57f746755b698426e7c8

(5147)

on February 18, 2012
at 03:47 AM

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.

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7 Answers

3
0b6993f7e02a1fca4ce266a71fa924a7

(80)

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.

59d367d77f4082717bade07508624db8

(1198)

on September 15, 2012
at 05:36 AM

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.

59d367d77f4082717bade07508624db8

(1198)

on September 15, 2012
at 05:14 AM

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.

59d367d77f4082717bade07508624db8

(1198)

on September 15, 2012
at 05:28 AM

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.

2
Ca1150430b1904659742ce2cad621c7d

(12540)

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.

59d367d77f4082717bade07508624db8

(1198)

on February 18, 2012
at 04:56 AM

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.

59d367d77f4082717bade07508624db8

(1198)

on February 18, 2012
at 04:55 AM

When the symptoms come, and for weeks I look and feel horrible for weeks, 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.

Ca1150430b1904659742ce2cad621c7d

(12540)

on February 18, 2012
at 03:33 PM

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.

1
3c6b4eed18dc57f746755b698426e7c8

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.

1
F2f559fe327007fd064a0f5bd79d6278

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.

3c6b4eed18dc57f746755b698426e7c8

(5147)

on March 20, 2012
at 04:11 AM

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.

F2f559fe327007fd064a0f5bd79d6278

(156)

on March 20, 2012
at 04:28 AM

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.

3c6b4eed18dc57f746755b698426e7c8

(5147)

on March 20, 2012
at 04:09 AM

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.

1
363d0a0277a8b61ada3a24ab3ad85d5a

(4642)

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!

59d367d77f4082717bade07508624db8

(1198)

on February 23, 2012
at 05:58 AM

Also, I was eating paleo (gluten-free) for a few months before any of this started up.

363d0a0277a8b61ada3a24ab3ad85d5a

(4642)

on February 23, 2012
at 05:01 AM

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.

59d367d77f4082717bade07508624db8

(1198)

on February 23, 2012
at 05:56 AM

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.

3c6b4eed18dc57f746755b698426e7c8

(5147)

on March 20, 2012
at 04:37 AM

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.

1
De267f213b375efca5da07890e5efc25

(3747)

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.

59d367d77f4082717bade07508624db8

(1198)

on February 18, 2012
at 04:17 AM

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.

De267f213b375efca5da07890e5efc25

(3747)

on February 18, 2012
at 10:43 PM

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).

59d367d77f4082717bade07508624db8

(1198)

on February 19, 2012
at 03:44 AM

With my HMO, yes, but the tests were ordered by a naturopath through an independent lab.

De267f213b375efca5da07890e5efc25

(3747)

on February 20, 2012
at 03:55 AM

I know this is a Paleo board but a naturopath is not the way to go. Sorry but I'm skeptical. I think you get the best care from traditional doctors who lean towards alternative medicine, not those who've gone over the deep end. Remember there's a sea of doctors out there - keep seeing new ones until you find your answers and odds are you eventually will. Might be hard with the HMO but you can try different specialists with different angles at least or see doctors in more than one area.

De267f213b375efca5da07890e5efc25

(3747)

on February 23, 2012
at 06:47 AM

Yeah I don't think your test results are all that interesting so far. Keep testing :)

59d367d77f4082717bade07508624db8

(1198)

on February 23, 2012
at 04:46 AM

If you look at my other threads, you can probably guess who the naturopath is. He is the one that thought to order the autoimmune and thyroid panels, which my doctor would never do. I live in SF, so there is also Thomas Cowan as a possible MD, though it would be out-of-pocket.

59d367d77f4082717bade07508624db8

(1198)

on February 24, 2012
at 08:10 AM

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.

59d367d77f4082717bade07508624db8

(1198)

on February 23, 2012
at 04:35 AM

I got my results from Immunosciences. ANA is 21.41 U/ml with a reference range of <20. Does this mean a titer of 1:20? Isn't that hardly anything? So confused. I also got a Rheumatoid Factor (<5.0) and C1Q Total Complex (<4.0), both of which were below the references ranges. I have a feeling that this is yet another red herring.

3c6b4eed18dc57f746755b698426e7c8

(5147)

on February 23, 2012
at 03:20 PM

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.

De267f213b375efca5da07890e5efc25

(3747)

on February 24, 2012
at 04:16 PM

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.

1
4781cf8ae1bfcb558dfb056af17bea94

(4359)

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.

4781cf8ae1bfcb558dfb056af17bea94

(4359)

on February 18, 2012
at 02:54 PM

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.

59d367d77f4082717bade07508624db8

(1198)

on February 18, 2012
at 04:51 AM

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.

4781cf8ae1bfcb558dfb056af17bea94

(4359)

on February 18, 2012
at 02:57 PM

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.

59d367d77f4082717bade07508624db8

(1198)

on February 19, 2012
at 03:41 AM

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.

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