Need Input that I'm not going to get from Dr.
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Erica,
TBH I had never heard of that test before you mentioned it. It appears to be a test designed to determine methylation status.
I thought that histamine could not be directly measured/detected in the blood. The test normally used to diagnose mastocytosis for example, measures tryptase enzyme levels in the blood. This is done because when a mast cell event is triggered and histamine is released, tryptase enzyme is also released. A reaction typically peaks in about an hour or 2 and then the tryptase level slowly declines. If a patient's serum tryptase level is greater than 20 ng/mL during such an event, and it can be replicated, that's diagnostic of mastocytosis.
But I know nothing about the test you mentioned.
Tex
TBH I had never heard of that test before you mentioned it. It appears to be a test designed to determine methylation status.
I thought that histamine could not be directly measured/detected in the blood. The test normally used to diagnose mastocytosis for example, measures tryptase enzyme levels in the blood. This is done because when a mast cell event is triggered and histamine is released, tryptase enzyme is also released. A reaction typically peaks in about an hour or 2 and then the tryptase level slowly declines. If a patient's serum tryptase level is greater than 20 ng/mL during such an event, and it can be replicated, that's diagnostic of mastocytosis.
But I know nothing about the test you mentioned.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Well Gabes, I asked for a Whole Blood Histamine draw....guess I will figure out how that was interpreted when I get the result of whatever it is. The Pryole is a shot in the dark type of thing but I figure it can't hurt to know, then decide if it's something I can rule out or if I've hit upon something.
This basic food diet I've been on has my mind wondering how is the body really doing. If I'm comfortable knowing my body is dealing and manufacturing proper viable living for itself I'll be more relaxed and therefore I hope I can keep my sanity when things seem to go astray.
So many of us have been kicked out of our learned environments so drastically a bit of peace of mind is certainly warranted.
I look forward to learning a bit more about myself in the next couple weeks.
Thanks Tex, if that histamine test ends up being as you described at least today was a great time an day to have had it done after my skin around the throat had a raised bumpiness to it. It has calmed down a lot by this evening. Will take a benedryl to help with any remnant left over.
Hugs
Erica
This basic food diet I've been on has my mind wondering how is the body really doing. If I'm comfortable knowing my body is dealing and manufacturing proper viable living for itself I'll be more relaxed and therefore I hope I can keep my sanity when things seem to go astray.
So many of us have been kicked out of our learned environments so drastically a bit of peace of mind is certainly warranted.
I look forward to learning a bit more about myself in the next couple weeks.
Thanks Tex, if that histamine test ends up being as you described at least today was a great time an day to have had it done after my skin around the throat had a raised bumpiness to it. It has calmed down a lot by this evening. Will take a benedryl to help with any remnant left over.
Hugs
Erica
To Succeed you have to Believe in something with such a passion that it becomes a Reality - Anita Roddick
Dx LC April 2012 had symptoms since Aug 2007
Dx LC April 2012 had symptoms since Aug 2007
I have rec'd 4 out of the 6 or so blood results so far:
Potassium 3.8 mmol/L the range 3.6-5 (I'm thinking I am pushing a little on the low side appears I could take the potassium I recently purchased - the amount I am not certain as they come in 99mg each 4 or 5 of them will not hurt I suspect spread out in the day).
Ceruloplasmin 27.00 mg/dl range 7-220 (it appears this is a protein that carries copper around in the body so 20-50 is a good range for this one)
VitD-25 hydroxyl 45.8 - range 30-100 (I was 43 last March so it appears I could double my 5000 to 10000 a day and be ok with it at this time of healing because I am not increasing this number very much in a year).
Copper 131 ug/dl range 80-155 (it appears my body is holding onto a fair amount of copper at this time, it is in the upper range and I had been taking 50mg zinc daily for a good 3 months prior to this test)
If anyone has any suggestions towards these numbers I'm all ears
Potassium 3.8 mmol/L the range 3.6-5 (I'm thinking I am pushing a little on the low side appears I could take the potassium I recently purchased - the amount I am not certain as they come in 99mg each 4 or 5 of them will not hurt I suspect spread out in the day).
Ceruloplasmin 27.00 mg/dl range 7-220 (it appears this is a protein that carries copper around in the body so 20-50 is a good range for this one)
VitD-25 hydroxyl 45.8 - range 30-100 (I was 43 last March so it appears I could double my 5000 to 10000 a day and be ok with it at this time of healing because I am not increasing this number very much in a year).
Copper 131 ug/dl range 80-155 (it appears my body is holding onto a fair amount of copper at this time, it is in the upper range and I had been taking 50mg zinc daily for a good 3 months prior to this test)
If anyone has any suggestions towards these numbers I'm all ears
To Succeed you have to Believe in something with such a passion that it becomes a Reality - Anita Roddick
Dx LC April 2012 had symptoms since Aug 2007
Dx LC April 2012 had symptoms since Aug 2007
Couple more lab updates, apparently I have a couple more, forgot how many I requested:
Zinc 169 - range 60-120 well this appears higher than I thought it should after getting such a high Copper reading too, doesn't seem like the zinc is helping to transport the copper out of my system like I thought it should be doing.
Vit B-12 Ser-mCnc 5426 pg/ml - range 180-914 holy cow this is quite elevated, but it doesn't surprise me, and does this have any consequences down the road, perhaps I don't need as much as I think I do?
Zinc 169 - range 60-120 well this appears higher than I thought it should after getting such a high Copper reading too, doesn't seem like the zinc is helping to transport the copper out of my system like I thought it should be doing.
Vit B-12 Ser-mCnc 5426 pg/ml - range 180-914 holy cow this is quite elevated, but it doesn't surprise me, and does this have any consequences down the road, perhaps I don't need as much as I think I do?
To Succeed you have to Believe in something with such a passion that it becomes a Reality - Anita Roddick
Dx LC April 2012 had symptoms since Aug 2007
Dx LC April 2012 had symptoms since Aug 2007
- Gabes-Apg
- Emperor Penguin
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- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
the body also needs Magnesium, Vit C, Vit E, Molybdenum etc to help clear the copper (zinc alone wont do it)
the good news is, your zinc is higher than the copper, so that is a good start
I would increase the Vit D3 a bit, maybe 7000iu for a couple of months...
the good news is, your zinc is higher than the copper, so that is a good start
I would increase the Vit D3 a bit, maybe 7000iu for a couple of months...
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
Thank you Gabes,
My Dr. already asked me to up my VitD3 to 10,000 for a while since I did not increase but 2 points since this time last year, so that is not a problem.
I have the Molybdenum, just haven't been taking it daily.
I have bought safe Vit E but I just wasn't sure there was any safe Vit E persay so have been hesitant to start taking it, but I will now.
I am not sure about Vit C, I thought that contributed to active MC and WD, how much might be a safe amount? I have no problem taking it, I just thought I read where it may pose a problem while healing.
Much appreciated :-)
Erica
My Dr. already asked me to up my VitD3 to 10,000 for a while since I did not increase but 2 points since this time last year, so that is not a problem.
I have the Molybdenum, just haven't been taking it daily.
I have bought safe Vit E but I just wasn't sure there was any safe Vit E persay so have been hesitant to start taking it, but I will now.
I am not sure about Vit C, I thought that contributed to active MC and WD, how much might be a safe amount? I have no problem taking it, I just thought I read where it may pose a problem while healing.
Much appreciated :-)
Erica
To Succeed you have to Believe in something with such a passion that it becomes a Reality - Anita Roddick
Dx LC April 2012 had symptoms since Aug 2007
Dx LC April 2012 had symptoms since Aug 2007
Rec'd the Pyrroles result:
Pyrroles urine 8 ug/dl - range is 0-20, so not sure if this is much of an issue for me. Maintaining 50mg zinc a day may be an ok daily range for me.
After looking at some of my DNA results having higher end copper and zinc levels may not hurt me down the road as that is to my benefit to ward off Aged Macular Degeneration. Obviously I don't want levels to be so high they interfere with healing and steal my magnesium, lol.
I will keep up my higher end VitD3 levels and maintain Magnesium and look for ways to get adequate VitC and take the Molybdenum and see what happens.
As the pollen starts to taper a little in my area of Wa State my flare has backed off more, still not perfect...just progress. After going thru a migraine these last few days I suspect my magnesium level plummeted during my antihistamine fight with the body, so therefore the migraine had the upper hand in appearing this time. Darn estrogen...when it plummets it triggers the trigeminalvascular nerve, CGRP gets released in the lining of the head and it gets the short end of the stick and becomes hyper sensitive. I look forward to the day when menopause levels out and I can hopefully not get worked up knowing a migraine is just a moment away should stress or something take hold of me for what ever reason.
Can't wait for a New Normal for myself some day that feels better and I can count on as being routine, if there is such a thing I have to remember it has only been a year...I have forced a new normal on my body and it has had to make many adjustments. Perhaps in another year I shall see even more improvement
Pyrroles urine 8 ug/dl - range is 0-20, so not sure if this is much of an issue for me. Maintaining 50mg zinc a day may be an ok daily range for me.
After looking at some of my DNA results having higher end copper and zinc levels may not hurt me down the road as that is to my benefit to ward off Aged Macular Degeneration. Obviously I don't want levels to be so high they interfere with healing and steal my magnesium, lol.
I will keep up my higher end VitD3 levels and maintain Magnesium and look for ways to get adequate VitC and take the Molybdenum and see what happens.
As the pollen starts to taper a little in my area of Wa State my flare has backed off more, still not perfect...just progress. After going thru a migraine these last few days I suspect my magnesium level plummeted during my antihistamine fight with the body, so therefore the migraine had the upper hand in appearing this time. Darn estrogen...when it plummets it triggers the trigeminalvascular nerve, CGRP gets released in the lining of the head and it gets the short end of the stick and becomes hyper sensitive. I look forward to the day when menopause levels out and I can hopefully not get worked up knowing a migraine is just a moment away should stress or something take hold of me for what ever reason.
Can't wait for a New Normal for myself some day that feels better and I can count on as being routine, if there is such a thing I have to remember it has only been a year...I have forced a new normal on my body and it has had to make many adjustments. Perhaps in another year I shall see even more improvement
To Succeed you have to Believe in something with such a passion that it becomes a Reality - Anita Roddick
Dx LC April 2012 had symptoms since Aug 2007
Dx LC April 2012 had symptoms since Aug 2007
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- Adélie Penguin
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- Location: Wisconsin
Oh my gosh I am so glad I read your post! I won't be ordering the Enterolab panels because I know I am IgA deficient. I am also IgE deficient. We tested our own immunoglobulin levels in Med Tech school.Leah wrote:Good for you! I was unable to use my results from Enterolab because it turned out that I am IgA deficient, so the results all came back negative! What a waste of money. I'm happy that you will have some answers soon. Please let us know when you get them.
Leah
So sorry you had to find out that way. :-(
I am guessing the test to quantitate IgA is way cheaper than those Enterolab panels. Any GI can order it and it may be more likely to be covered by insurance. IgA deficiency is more common than we think.
Is there a way to advise folks about that complication with the Enterolab panels?
Hi Jumping,
Yes lots of good info on this post here that I started last Summer....I replied to your personal post regarding bone broth soup, I'm sure you have read about the soup process in here at this post somewhere too
Many have contributed to this post with a wealth of information about their experiences....This is truly a great big family here The IgA is a sneaky part of certain people so that test sure can save a lot of money. As far as the MC goes it will take a bit more time to detect the food sensitivities, which can be done, but a person has to find the patience to participate and not let it get them down.
I so hope you find enough of what you Can have as compared to what we eventually start leaving behind in the wake of MC.
Cheers
Erica
Yes lots of good info on this post here that I started last Summer....I replied to your personal post regarding bone broth soup, I'm sure you have read about the soup process in here at this post somewhere too
Many have contributed to this post with a wealth of information about their experiences....This is truly a great big family here The IgA is a sneaky part of certain people so that test sure can save a lot of money. As far as the MC goes it will take a bit more time to detect the food sensitivities, which can be done, but a person has to find the patience to participate and not let it get them down.
I so hope you find enough of what you Can have as compared to what we eventually start leaving behind in the wake of MC.
Cheers
Erica
To Succeed you have to Believe in something with such a passion that it becomes a Reality - Anita Roddick
Dx LC April 2012 had symptoms since Aug 2007
Dx LC April 2012 had symptoms since Aug 2007
We just have to try to remember to point that out to anyone considering ordering any tests, but of course that doesn't always happen. If we put it up somewhere as an announcement or sticky post, there are already so many that most new members would be likely to fail to notice it anyway.Jumpindogs wrote:Is there a way to advise folks about that complication with the Enterolab panels?
According to articles I've read, apparently something like approximately 1 in 500 in the general population have selective IgA deficiency, but the odds jump to about 1 in 300 for those who are gluten sensitive.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
- Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
it is also why we encourage new people to spend time reading various posts and discussions...(and to ask questions) there are many intricacies and anomalies in MC world, it is near impossible to have it all the information in one document and for a new person to absorb it all first up...Is there a way to advise folks about that complication with the Enterolab panels?
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
Last two tests have finalized...
Iodine 51.9 mcg/L = range 40-92mcg/L This appears to be ok, I must be getting adequate thru my daily iodized sea salt.
Histamine, Whole Blood 1198 nmol/L = range 180-1800 nmol/L this one I am not sure exactly what I am reading here, I just learned about this test and thought I'd get a base line for it. I'll read up on it now that I have something to work with. I'm definitely in the upper range of whatever it is.
Going to bring in all my other results into one post so that I don't have to keep scrolling for them....
Pyrroles urine 8 ug/dl - range is 0-20
Vit B-12 Ser-mCnc 5426 pg/ml - range 180-914
Zinc 169 - range 60-120
Potassium 3.8 mmol/L the range 3.6-5 (I'm thinking I am pushing a little on the low side appears I could take the 99mg potassium I recently purchased)
Ceruloplasmin 27.00 mg/dl range 7-220 (it appears this is a protein that carries copper around in the body so 20-50 is a good range for this one)
VitD-25 hydroxyl 45.8 - range 30-100 (I was 43 last March)
Copper 131 ug/dl range 80-155
Iodine 51.9 mcg/L = range 40-92mcg/L This appears to be ok, I must be getting adequate thru my daily iodized sea salt.
Histamine, Whole Blood 1198 nmol/L = range 180-1800 nmol/L this one I am not sure exactly what I am reading here, I just learned about this test and thought I'd get a base line for it. I'll read up on it now that I have something to work with. I'm definitely in the upper range of whatever it is.
Going to bring in all my other results into one post so that I don't have to keep scrolling for them....
Pyrroles urine 8 ug/dl - range is 0-20
Vit B-12 Ser-mCnc 5426 pg/ml - range 180-914
Zinc 169 - range 60-120
Potassium 3.8 mmol/L the range 3.6-5 (I'm thinking I am pushing a little on the low side appears I could take the 99mg potassium I recently purchased)
Ceruloplasmin 27.00 mg/dl range 7-220 (it appears this is a protein that carries copper around in the body so 20-50 is a good range for this one)
VitD-25 hydroxyl 45.8 - range 30-100 (I was 43 last March)
Copper 131 ug/dl range 80-155
To Succeed you have to Believe in something with such a passion that it becomes a Reality - Anita Roddick
Dx LC April 2012 had symptoms since Aug 2007
Dx LC April 2012 had symptoms since Aug 2007