Autoimmune flare

[NancyM]

Well, I rather thought I had a misdiagnosis of Ankylosing Spondylitis because my symptoms went away after going GF and then paleo. For 7 years I really didn't have any significant pain and then WHAM! All of a sudden it flares up for no reason I can figure out. Except one... I took probiotics. My flare started right about the same time. I also changed from IBS-D to IBS-C after taking those probiotics. Bleh. :(

I'm going to start a very strict paleo 30 day diet referred to as "Whole 30" in July and I'll see if I can get a handle on this flare. Although I do have to admit the pain is much better than it was a week or two ago, so maybe it is already subsiding.

I have my fingers crossed.

[bear]

Hi Nancy,

Well my first question would be do you know what your vitamin D3 levels are? Following that do you have any bone density problems (osteoporosis etc.)?

I ran across the following which may be food for thought:

Only registered and activated users can see links., Click Here To Register... (unfortunately you need a membership)
Vitamin D deficiency may be on its way to being known in medicine as a grand deceiver, presenting in various guises and imitating different diagnoses. Take a recent case report on rickets mimicking the incurable arthritic disease, ankylosing spondylitis.

Demirbilek H, Aydoğdu D, Ozön A. Vitamin D-deficient rickets mimicking ankylosing spondylitis in an adolescent girl. Turk J Pediatr. 2012 Mar-Apr;54(2):177-9.
...
...
Besides ankylosing spondylitis, vitamin D deficiency may present as frequent infections, chronic pain, heart disease, stroke, multiple autoimmune diseases, fibromyalgia, osteoporosis, gingivitis, diabetes, and in my opinion, sun sensitivity, to name but a few. Vitamin D deficiency is now the grand deceiver.

D3 levels are important for a lot of reasons but high levels can modulate the immune system to calm down and might have prevented a flare. It might also be related to changes
in absorption of magnesium or calcium during the flare. Have you had a blood chemistry done lately with calcium values? If the calcium values are low normal or below that would
probably suggest osteomalacia (rickets).

There are probably 20 dozen other reasons but you many not have thought of these.

Bear

Well, I rather thought I had a misdiagnosis of Ankylosing Spondylitis because my symptoms went away after going GF and then paleo. For 7 years I really didn't have any significant pain and then WHAM! All of a sudden it flares up for no reason I can figure out. Except one... I took probiotics. My flare started right about the same time. I also changed from IBS-D to IBS-C after taking those probiotics. Bleh. :(

I'm going to start a very strict paleo 30 day diet referred to as "Whole 30" in July and I'll see if I can get a handle on this flare. Although I do have to admit the pain is much better than it was a week or two ago, so maybe it is already subsiding.

I have my fingers crossed.

[canoe]

Sorry to read that you had a flare Nancy. I sure hope that you will be able to get it under control. Being in pain constantly makes life difficult.

I sure hope that the 30 day strict Paleo will help.

Marilyn

[NancyM]

I should have pretty good D3, I'll know very soon. I supplement 5-10k almost every day. Last few times it was tested it was 60/70 ng/ml (or whatever the measurement is in the US). My doctor is running a CBC and some autoimmune/inflammation things like SED rate and CRP. I'll be very interested to compare those to the last time they were run. I also take K2 and magnesium. I don't supplement calcium due to it ending up in the arteries when you get too much.

They also took a lot of xrays of my spine and hips, so it will be interesting to see if anything has changed over my relatively pain-free 7 years.

I had a good night, night before last! Maybe the back exercises and strengthening are helping. I decided my "multifidus" probably needed some work. :p

[bear]

Hi Nancy,

60-70 ng/ml (that is the US unit) is pretty good but you could consider higher. There do not appear to be cases of people (who do not have an underlying disease that makes any levels of D problematic) who take 10k and have a problem with it. Higher levels do modulate the immune system. There is an MS study where people were given 10k for 8 weeks and
20K for the next up to 40k for 8 weeks. None of the subjects had any calcium regulation problems.

Your calcium may very well be a problem. Vitamin K2 keeps it out of the arteries. The body tightly regulates calcium levels even when it has to pull calcium out of the bones. I have
noticed in a few people whose blood calcium levels were low normal and rose substantially to high normal when they increase their vitamin D3, magnesium and calcium. When you are
taking 10k+ of D3/day your calcium levels should be at the high end. When my wife was taking 40k/day for a while that is exactly what happened when she was taking enough calcium even though her vitamin D3 level was over 100 ng/ml. Her doc started to freak before I said "look at the calcium". The vitaminDcouncil says 150 ng/ml is where overdose can start.

If possible take magnesium citrate and calcium citrate each 2 X /day but at different times from each other. Your body cannot absorb more than about 1/2 of your daily requirement
of calcium at one time and magnesium may compete. If this is the problem you may probably notice a change within 1-2 weeks. There is a young woman I know who was using a little cream cheese as her calcium source. She eventually had trouble walking and lots of bone pain. 20k of D3, calcium/magnesium citrate, K2 and some zinc and she was walking without
support in a week. However, I think that she was in pretty bad shape and her D was low.

Good luck,

Bear

I should have pretty good D3, I'll know very soon. I supplement 5-10k almost every day. Last few times it was tested it was 60/70 ng/ml (or whatever the measurement is in the US). My doctor is running a CBC and some autoimmune/inflammation things like SED rate and CRP. I'll be very interested to compare those to the last time they were run. I also take K2 and magnesium. I don't supplement calcium due to it ending up in the arteries when you get too much.

They also took a lot of xrays of my spine and hips, so it will be interesting to see if anything has changed over my relatively pain-free 7 years.

I had a good night, night before last! Maybe the back exercises and strengthening are helping. I decided my "multifidus" probably needed some work. :p

[NancyM]

I will definitely take a look at the calcium levels on my CBC, hopefully they will be there. I think with my grain-free diet I don't have a lot of anti-nutrients keeping me from absorbing the calcium I eat. I do take a chelated magnesium. As far as K2 goes... I'm wondering if I should even take it. I have Leiden Factor V mutation which gives me a propensity toward blood clots. I've got a 30% risk whereas a normal person has a 9% risk. Eek!

Thanks for the info, Bear!

[annelb]

Hope you get that pain to disappear. I am not sure how K2 fits into Leiden Factor V mutation. I do know that a few years ago my doctors were concerned about me taking K2 because of my coronary artery disease. My cardiologist told me it would kill me. I have since found information that it actually helps. Do you have to limit foods with vitamin K1 and K2?
Anne

[NancyM]

Well, if you're taking coumadin (blood thinners) you have to eat a consistent amount of vitamin K (probably K1) so they can get the dose right. K does have something to do with clotting. K2... I'm not sure about. I know it does lots of things but I've never seen clotting mentioned as part of what it does. But yeah, it sounds very likely that K2 is extremely helpful not just for getting calcium to where it is supposed to go, but for mitochondria too.

Over all, my pain is better. I wake up feeling pretty stiff and sore, but lying in bed isn't too awful now. I think working on my back muscles has helped some. I found exercises for the multifidus and decided maybe I needed those. :)

[NancyM]

Oh goody! I found some good news about K2 and clotting:

Blood clotting (coagulation) studies in humans using 45 mg per day of vitamin K2 (as MK-4)[27] and even up to 135 mg/day (45 mg three times daily) of K2 (as MK-4),[73] showed no increase in blood clot risk. Even doses in rats as high as 250 mg/kg body weight did not alter the tendency for blood-clot formation to occur.[74]

Only registered and activated users can see links., Click Here To Register...

[NancyM]

I got back notes on my xrays:

Osteopenia apparently
Sacral ileitis -- common in AS patients
mild spinal degeneration

I have been looking at a link between my sudden onset of acute constipation and sacral ileitis (which is probably the source of my pain) and it looks like I'm not the only one who has wondered about the condition. All this kind of flared up when I took some probiotics.

BTW: I'm much, much better. I'm still pretty stiff in the morning but I'm not waking up in pain.

[canoe]

Good to read that you are not waking up in pain and that you are feeling better.

Marilyn

[annelb]

Glad the pain has subsided Nancy.
Anne

[NancyM]

Well, it did... until I started playing with resistant starches and it flared again. I had forgotten about the "Starch Free" diet for AS. This is making me think more and more that this issue has to do with what is going on in my gut. It isn't as bad as it was at the peak and I'd like to see how my body does with resistant starch and kefir. Maybe I can grow some good beasties to crowd out whatever it is that made this flare up.

Actually, I'd like to clean out my current gut biome and have a young, healthy, slim person's bacteria implanted in me instead.

[canoe]

Nancy,

I went to a CEU Seminar first part of June and there was mention of implanting healthy, slim person's bacteria into someone who was overweight and had a greater amount of bad bacteria in their biome.

Very interesting seminar.

Marilyn

[NancyM]

I know, Marilyn! I've been hearing about it too, but it is basically banned for anything but research and in cases of life-threatening illnesses by some government agency. So your only option is to go do-it-yourself and I'm just not that brave. Or going to Australia or Canada. :)