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High B12 + high igA levels CFS?

Messages
14
Hello everyone,

I have posted here a few times over the past year after reading some threads I found "googling" about having high vitamin B12 levels show in blood testing.

I have had 3 different blood tests to check my B12 level in the past year and all have come back over the range, as has Immunoglobin A (igA), I have been to a Hematologist to rule out proliferative diseases such as Multiple Myeloma, I had various blood tests done all which were negative and I was discharged. Other things linked with high b12 have also been ruled out via blood testing.

I know from reading various sources that B12 is absorbed via the small intestine, and igA is also found mainly in the intestinal tract., However I have been tested for Coeliac disease and that was also a negative.

Is it possible that I have Gluten sensitivity still without having Coeliac disease? or even having some functional deficiency with B12?, my doctors right now have basically left things as they are and refused me any more testing to do with these abnormal levels but they remain a mystery.

I am also symptomatic of something, again lots of tests have been done and nothing found so far other than the abnormal b12 and igA levels, my symptoms are as follows and in order of how they manifested.

Headaches
Facial Pain
Speech problems
- tripping over speech.
Memory problems - recalling things after they are needed.
Increased Salivation - even dentist noticed this.
Pins and Needles of my hands
Burning sensations of my hands and feet
Burning sensations in random places
- as if someone has poured acid on me briefly.
Itching all over body - comes on for a few days then disappears for maybe a month or so before coming back.
Increased and excessive sweating - usually in response to heat but the amount is crazy.
Fatigue/sleepiness - feeling exhausted by around 4 pm and have fallen asleep at my computer chair many times.
Facial Flushing - Dry flushing non sweating.
High Blood Pressure - found at the docs office, currently need an ace inhibitor and beta blocker to control.
Muscle Fatigue - this is new to me over the past month, my legs in particular fatigue within a couple of mins of walking and feel very heavy and ache, however they can continue to do whatever it is I'm doing.

Most of these symptoms are transient and come and go repeatably, also the sensory problems are symmetrical all the time.

Do these sound CFS/ME to anyone and is the b12/iga linked with this?
 

Lynn_M

Senior Member
Messages
208
Location
Western Nebraska
B12 tests are a poor indicator of B12 levels in the body because they measure both the active transcobalamin form of B12 and the inactive haptocorrin form of B12, which is the used up, spent form. If you have a high haptocorrin level, you could have a high B12 level and still be low in transcobalamin.

There really aren't any good tests for B12. The best test, MMA, methylmalonic acid, actually measures adenosylcobalamin levels. MMA is created when there isn't enough adenosylB12 to metabolize something else. You want a low MMA. AdenosylB12 is in the mitochondria, methylB12 is in the cytosol portion of the cell. They shuttle back and forth with each other, so knowing MMA is often a good guide to knowing your methylB12 levels. Some people have impairment in that shuttle process, so in those cases MMA isn't as good an indicator.

MMA tests are available as serum or urine. I've read urine is best. When I had a Great Plains OAT (Organic Acids Test), they measured my MMA. I found out about a number of aberrations I had no prior idea of from my OAT and think it's a valuable test. Genova and Metametrix offer an OAT also; theirs is called Organix Profile, Basic or Comprehensive. Since you seem to be in the dark about your situation, I think you should consider an OAT. If your doc won't order one, you can order one yourself from https://www.directlabs.com/OrderTests/tabid/55/language/en-US/Default.aspx.

It is quite possible to have non-celiac gluten sensitivity without celiac disease. In fact, it's quite possible to have celiac disease and have negative testing, because the celiac disease tests aren't positive until nearly all the villi have atrophied. If you've had 23andMe testing, you can tell if you have genetic susceptibility by looking at certain SNPs in the raw data. Their celiac report only looks at the most common genes for celiac; it is not comprehensive enough. Enterolab also offers genetic testing.
 
Messages
1
I realize this is an old thread. Just by chance, did you ever determine the cause of your elevated B12 and all the relevant symptoms? Experiencing an almost identical situation. Thank you
 

A zombie

Senior Member
Messages
197
i think you need to test MMA, not b12, to get an accurate reading.I showed high in blood too BUT i'm actually V low.Nutra eval tests plasma...
but try mma , via insurance
 

Aerose91

Senior Member
Messages
1,400
B12 tests are a poor indicator of B12 levels in the body because they measure both the active transcobalamin form of B12 and the inactive haptocorrin form of B12, which is the used up, spent form. If you have a high haptocorrin level, you could have a high B12 level and still be low in transcobalamin.

There really aren't any good tests for B12. The best test, MMA, methylmalonic acid, actually measures adenosylcobalamin levels. MMA is created when there isn't enough adenosylB12 to metabolize something else. You want a low MMA. AdenosylB12 is in the mitochondria, methylB12 is in the cytosol portion of the cell. They shuttle back and forth with each other, so knowing MMA is often a good guide to knowing your methylB12 levels. Some people have impairment in that shuttle process, so in those cases MMA isn't as good an indicator.

MMA tests are available as serum or urine. I've read urine is best. When I had a Great Plains OAT (Organic Acids Test), they measured my MMA. I found out about a number of aberrations I had no prior idea of from my OAT and think it's a valuable test. Genova and Metametrix offer an OAT also; theirs is called Organix Profile, Basic or Comprehensive. Since you seem to be in the dark about your situation, I think you should consider an OAT. If your doc won't order one, you can order one yourself from https://www.directlabs.com/OrderTests/tabid/55/language/en-US/Default.aspx.

It is quite possible to have non-celiac gluten sensitivity without celiac disease. In fact, it's quite possible to have celiac disease and have negative testing, because the celiac disease tests aren't positive until nearly all the villi have atrophied. If you've had 23andMe testing, you can tell if you have genetic susceptibility by looking at certain SNPs in the raw data. Their celiac report only looks at the most common genes for celiac; it is not comprehensive enough. Enterolab also offers genetic testing.
What about having low MMA? When first tested it was normal for me but a year later it had gone below normal levels.
 

roller

wiggle jiggle
Messages
775
ok, its unrelated... but

they are unable to find big fat worms in ppl - that are on a 24h rampage inside you.
they test you for lyme, send you home with a yes and no, and the result may be outright false.
they test your b12, you pay, and it is quite likely that the result is plain useless...
so, they cant even test a vitamin for sure.

who are we dealing with here?
these ppl have no shame, really.

they have no pride in what they do.