Hi,
I have run out of Methyl Folate twice. I take them together with Methylcobalamin B-12 and P-5-P. Since I order my B-vitamins from the U.K., it takes 7-10 days from I order them till they arrive in my mailbox. I have to take 7 pills each day, so this is why I'm not good at planning in good time ahead and cannot buy several boxes at the same time, due to custom taxes.., but I have a plan to avoid this in the future.
Since the three should be taken together, I also stop taking the other two while I wait for the Methyl Folate to arrive.
It takes only 3-4 days without the B-vitamins before I start freezing, and my legs start to hurt! Needles, pins and cramps in both legs. I cannot stand upright, I have to sit down, and in addition my fingers and feet get ice cold.
As soon as I start taking all three again, it takes only a few hours for the pain and the freezing to disappear!
Is this some kind of neuropathic pains? What about the freezing hands and feet?
Maybe the inflammation, and/or Entocort deplete not only our D-vitamin deposits, but also our B-vitamin deposits?
Lilja
Vitamin B, pains and freezing
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Vitamin B, pains and freezing
Collagenous Colitis diagnosis in 2010
Psoriasis in 1973, symptom free in 2014
GF, CF and SF free since April, 2013
Psoriasis in 1973, symptom free in 2014
GF, CF and SF free since April, 2013
Hi Lilja,
It's beginning to appear that you may have some form of pernicious anemia. Have you had a complete blood count recently? If so, were your hemoglobin and hematocrit results normal? Low iron can cause pernicious anemia, but in your case it appears that a deficiency of vitamins B-12 and/or folate (or a problem absorbing or metabolising them) may be the cause of the problem. Such severe symptoms shouldn't appear so soon after withdrawal from the supplements. For the symptoms to be so severe, either you have a severe deficiency, or something is definitely not working correctly.
If you haven't had a recent complete blood count, your doctor should run some tests to check your hemoglobin and hematocrit levels, and your folate level. Since you have an IBD (MC), it would be advisable to also check your homosisteine level, to make sure that it is not elevated, because a high homosisteine level can lead to cardiovascular damage. It is known that with Crohn's disease for example, low folate levels are associated with elevated homosisteine levels. So this is probably true for all IBDs, including MC. Here are links to some articles that discuss pernicious anemia, and how to diagnose it.
Vitamin B12 or folate deficiency anaemia
What Are the Signs and Symptoms of Pernicious Anemia?
How Is Pernicious Anemia Diagnosed?
There are no research data that indicate that budesonide depletes supplies of B vitamins, but that does not mean that it cannot happen. The problem is more likely due to the inflammation (either poor absorption of the vitamins, or a problem with metabolizing (methylizing) them.
Also, when using the active forms of these vitamins, please make sure that you have an adequate supply of magnesium and potassium, because methylation promotes cell growth and division, and when that happens, there are increased demands on those 2 electrolytes. If either of them is deficient (or if glutathione is deficient), the cells can die, resulting in undesirable side effects from taking methylation-promoting vitamins. Normally, we don't worry about glutathione, because it is considered to be a non-essential nutrient, since it can be synthesized in the body from the amino acids L-cysteine, L-glutamic acid, and glycine.
Methylation is an especially important issue for anyone who has an IBD, because obviously cell growth and division are necessary in order to heal the damage caused by the inflammation. The promotion of the creation and development of new cells is where a lot of our magnesium and potassium is used, which explains why anyone who has an active IBD is at a high risk of being deficient in those 2 electrolytes. And perhaps it's worth pointing out that if we are deficient in magnesium, potassium, or glutathione, we will be unable to recover from MC, because our intestines will be unable to heal properly.
Tex
It's beginning to appear that you may have some form of pernicious anemia. Have you had a complete blood count recently? If so, were your hemoglobin and hematocrit results normal? Low iron can cause pernicious anemia, but in your case it appears that a deficiency of vitamins B-12 and/or folate (or a problem absorbing or metabolising them) may be the cause of the problem. Such severe symptoms shouldn't appear so soon after withdrawal from the supplements. For the symptoms to be so severe, either you have a severe deficiency, or something is definitely not working correctly.
If you haven't had a recent complete blood count, your doctor should run some tests to check your hemoglobin and hematocrit levels, and your folate level. Since you have an IBD (MC), it would be advisable to also check your homosisteine level, to make sure that it is not elevated, because a high homosisteine level can lead to cardiovascular damage. It is known that with Crohn's disease for example, low folate levels are associated with elevated homosisteine levels. So this is probably true for all IBDs, including MC. Here are links to some articles that discuss pernicious anemia, and how to diagnose it.
Vitamin B12 or folate deficiency anaemia
What Are the Signs and Symptoms of Pernicious Anemia?
How Is Pernicious Anemia Diagnosed?
There are no research data that indicate that budesonide depletes supplies of B vitamins, but that does not mean that it cannot happen. The problem is more likely due to the inflammation (either poor absorption of the vitamins, or a problem with metabolizing (methylizing) them.
Also, when using the active forms of these vitamins, please make sure that you have an adequate supply of magnesium and potassium, because methylation promotes cell growth and division, and when that happens, there are increased demands on those 2 electrolytes. If either of them is deficient (or if glutathione is deficient), the cells can die, resulting in undesirable side effects from taking methylation-promoting vitamins. Normally, we don't worry about glutathione, because it is considered to be a non-essential nutrient, since it can be synthesized in the body from the amino acids L-cysteine, L-glutamic acid, and glycine.
Methylation is an especially important issue for anyone who has an IBD, because obviously cell growth and division are necessary in order to heal the damage caused by the inflammation. The promotion of the creation and development of new cells is where a lot of our magnesium and potassium is used, which explains why anyone who has an active IBD is at a high risk of being deficient in those 2 electrolytes. And perhaps it's worth pointing out that if we are deficient in magnesium, potassium, or glutathione, we will be unable to recover from MC, because our intestines will be unable to heal properly.
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.
Tex, my GP will be testing my iron and B-12 levels next month because I have had borderline anemia (type unspecified) for the last few years. Also testing my D.
I am currently supplementing with the B vitamins in the dosages that you recommend as well as D. My question is, should I discontinue their use a short time before the blood test so that I can get a true, baseline reading on possible deficiencies? Or should I continue my supplementation in order to see, by the blood test, whether I'm supplementing sufficiently?
Also, neither my GP nor Rheumy doctors has called for testing of possible IgA deficiency. Should I ask for this? And what reason would I give 2 rather traditional doctors for needing this testing??
Thanks!
I am currently supplementing with the B vitamins in the dosages that you recommend as well as D. My question is, should I discontinue their use a short time before the blood test so that I can get a true, baseline reading on possible deficiencies? Or should I continue my supplementation in order to see, by the blood test, whether I'm supplementing sufficiently?
Also, neither my GP nor Rheumy doctors has called for testing of possible IgA deficiency. Should I ask for this? And what reason would I give 2 rather traditional doctors for needing this testing??
Thanks!
Thank you for your a long and good answer. I will go through it thouroughly and comment on it, when I have digested it. The only thing I can say for now, is that my father had pernicious anemia. But is it hereditary? I will have to look it up.tex wrote:Hi Lilja,
It's beginning to appear that you may have some form of pernicious anemia. Have you had a complete blood count recently? If so, were your hemoglobin and hematocrit results normal? Low iron can cause pernicious anemia, but in your case it appears that a deficiency of vitamins B-12 and/or folate (or a problem absorbing or metabolising them) may be the cause of the problem. Such severe symptoms shouldn't appear so soon after withdrawal from the supplements. For the symptoms to be so severe, either you have a severe deficiency, or something is definitely not working correctly.
If you haven't had a recent complete blood count, your doctor should run some tests to check your hemoglobin and hematocrit levels, and your folate level. Since you have an IBD (MC), it would be advisable to also check your homosisteine level, to make sure that it is not elevated, because a high homosisteine level can lead to cardiovascular damage. It is known that with Crohn's disease for example, low folate levels are associated with elevated homosisteine levels. So this is probably true for all IBDs, including MC. Here are links to some articles that discuss pernicious anemia, and how to diagnose it.
Vitamin B12 or folate deficiency anaemia
What Are the Signs and Symptoms of Pernicious Anemia?
How Is Pernicious Anemia Diagnosed?
There are no research data that indicate that budesonide depletes supplies of B vitamins, but that does not mean that it cannot happen. The problem is more likely due to the inflammation (either poor absorption of the vitamins, or a problem with metabolizing (methylizing) them.
Also, when using the active forms of these vitamins, please make sure that you have an adequate supply of magnesium and potassium, because methylation promotes cell growth and division, and when that happens, there are increased demands on those 2 electrolytes. If either of them is deficient (or if glutathione is deficient), the cells can die, resulting in undesirable side effects from taking methylation-promoting vitamins. Normally, we don't worry about glutathione, because it is considered to be a non-essential nutrient, since it can be synthesized in the body from the amino acids L-cysteine, L-glutamic acid, and glycine.
Methylation is an especially important issue for anyone who has an IBD, because obviously cell growth and division are necessary in order to heal the damage caused by the inflammation. The promotion of the creation and development of new cells is where a lot of our magnesium and potassium is used, which explains why anyone who has an active IBD is at a high risk of being deficient in those 2 electrolytes. And perhaps it's worth pointing out that if we are deficient in magnesium, potassium, or glutathione, we will be unable to recover from MC, because our intestines will be unable to heal properly.
Tex
Lilja
Collagenous Colitis diagnosis in 2010
Psoriasis in 1973, symptom free in 2014
GF, CF and SF free since April, 2013
Psoriasis in 1973, symptom free in 2014
GF, CF and SF free since April, 2013
Tex,
Yes, PA is hereditary.
Okay, then I would have to rule out or confirm that I have PA. From what I read, I would have to get these tests:
- Intrinsic Factor. Is it working, or do I produce antibodies to IF?
- HB
- Hematocrit
- Folate
- Homocysteine
- MMA
- MCV
- Ferritin
- Any other?
Back in April, 2013, I had these tests:
S-Folate: >45.0. The reference area is >5.7 in Norway.
S-Homocysteine: 11.9. The reference area is 5.0-17.0
S-MMA: 0.21. The reference area is <0.36
S-B12: 303. The reference area is 170-650 (ref area being way too low, in my opinion)
Maybe I also should test if I have hypochlorhydria, as mentioned in this link:
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3441227/
(My father actually died of cancer in the esophagus at the age of 64, but whether there is a connection here or not, I don't know).
Lilja
Yes, PA is hereditary.
Okay, then I would have to rule out or confirm that I have PA. From what I read, I would have to get these tests:
- Intrinsic Factor. Is it working, or do I produce antibodies to IF?
- HB
- Hematocrit
- Folate
- Homocysteine
- MMA
- MCV
- Ferritin
- Any other?
Back in April, 2013, I had these tests:
S-Folate: >45.0. The reference area is >5.7 in Norway.
S-Homocysteine: 11.9. The reference area is 5.0-17.0
S-MMA: 0.21. The reference area is <0.36
S-B12: 303. The reference area is 170-650 (ref area being way too low, in my opinion)
Maybe I also should test if I have hypochlorhydria, as mentioned in this link:
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3441227/
(My father actually died of cancer in the esophagus at the age of 64, but whether there is a connection here or not, I don't know).
Lilja
Collagenous Colitis diagnosis in 2010
Psoriasis in 1973, symptom free in 2014
GF, CF and SF free since April, 2013
Psoriasis in 1973, symptom free in 2014
GF, CF and SF free since April, 2013
Hi Chris,
Unless you specifically want to see how those supplements are working, Donna's suggestion to stop taking supplements before the test, is a good idea. Clearance time for various supplements varies, but the 4 days suggested should be more than adequate for most supplements.
I'm guessing that your request for a test to rule out selective IgA deficiency is centered on making sure that EnteroLab test results will be valid. Coming up with a good excuse for a nonbeliever doctor can be a challenge. This may or may not apply to you, but maybe you could request a test to rule out selective IgA deficiency if you have enough of the problems that are common with selective IgA deficiency to justify suspecting selective IgA deficiency.
People who have selective IgA deficiency are often more susceptible to infections than "normal" people. This seems to apply to about half of the patients who have IgA deficiency. They tend to have problems such as recurrent ear infections, sinusitis, bronchitis, pneumonia, etc. And of utmost importance (in your case), it's known that some selective IgA deficient patients also have gastrointestinal infections and chronic diarrhea. Most doctors should understand that, because the primary purpose of IgA is to protect mucosal surfaces (such as the lining of the digestive tract). Furthermore, it's common knowledge that with patients who have selective IgA deficiency, such infections may not completely clear with treatment, and patients may have to remain on antibiotics for longer than usual. Your digestive issues are almost surely due solely to MC (not an infection), but your doctor can't be sure of that.
In addition to increased infection risk, a second major problem with IgA deficiency is the occurrence of autoimmune diseases. Some of the more frequent autoimmune diseases associated with IgA deficiency are rheumatoid arthritis and systemic lupus erythematosus (SLE), for example. So if you should happen to have either of those examples, you have a very strong case. But autoimmune issues of the gastrointestinal system also occur in association with selective IgA deficiency, so your doctor certainly couldn't rule out this possibility without doing the test.
And thirdly, allergies are also more common among individuals with selective IgA deficiency than among the general population. So if you happen to have asthma (which is one of the more commonly-associated allergic conditions connected with selective IgA deficiency), or other allergic issues, that would also strengthen your case.
Out of all that, hopefully you should be able to make a case to convince one of your doctors to order the test for you. I would try my GP first.
Tex
Unless you specifically want to see how those supplements are working, Donna's suggestion to stop taking supplements before the test, is a good idea. Clearance time for various supplements varies, but the 4 days suggested should be more than adequate for most supplements.
I'm guessing that your request for a test to rule out selective IgA deficiency is centered on making sure that EnteroLab test results will be valid. Coming up with a good excuse for a nonbeliever doctor can be a challenge. This may or may not apply to you, but maybe you could request a test to rule out selective IgA deficiency if you have enough of the problems that are common with selective IgA deficiency to justify suspecting selective IgA deficiency.
People who have selective IgA deficiency are often more susceptible to infections than "normal" people. This seems to apply to about half of the patients who have IgA deficiency. They tend to have problems such as recurrent ear infections, sinusitis, bronchitis, pneumonia, etc. And of utmost importance (in your case), it's known that some selective IgA deficient patients also have gastrointestinal infections and chronic diarrhea. Most doctors should understand that, because the primary purpose of IgA is to protect mucosal surfaces (such as the lining of the digestive tract). Furthermore, it's common knowledge that with patients who have selective IgA deficiency, such infections may not completely clear with treatment, and patients may have to remain on antibiotics for longer than usual. Your digestive issues are almost surely due solely to MC (not an infection), but your doctor can't be sure of that.
In addition to increased infection risk, a second major problem with IgA deficiency is the occurrence of autoimmune diseases. Some of the more frequent autoimmune diseases associated with IgA deficiency are rheumatoid arthritis and systemic lupus erythematosus (SLE), for example. So if you should happen to have either of those examples, you have a very strong case. But autoimmune issues of the gastrointestinal system also occur in association with selective IgA deficiency, so your doctor certainly couldn't rule out this possibility without doing the test.
And thirdly, allergies are also more common among individuals with selective IgA deficiency than among the general population. So if you happen to have asthma (which is one of the more commonly-associated allergic conditions connected with selective IgA deficiency), or other allergic issues, that would also strengthen your case.
Out of all that, hopefully you should be able to make a case to convince one of your doctors to order the test for you. I would try my GP first.
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.
Hi Lilja,
Yes, you are correct, pernicious anemia is definitely hereditary. And more than that, additional risk factors for the problem include a history of autoimmune endocrine disorders, and Scandinavian or Northern European descent.
Considering your background, I'm kind of surprised that your doctors never tested you for pernicious anemia before, but maybe they weren't aware of your symptoms, and your regular blood test results appeared to be fine.
Tex
Yes, you are correct, pernicious anemia is definitely hereditary. And more than that, additional risk factors for the problem include a history of autoimmune endocrine disorders, and Scandinavian or Northern European descent.
Considering your background, I'm kind of surprised that your doctors never tested you for pernicious anemia before, but maybe they weren't aware of your symptoms, and your regular blood test results appeared to be fine.
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.
Thanks for the clarification, Tex. I will talk to my Rheumy again before the blood tests and see if I can make the case. Now I understand it better!
After 3.5 months on the strict diet, I seem to be in remission. The daily antihistamines seems to be the icing on the cake. Last week, I began the slow taper off of budensonide. So far, so good.
As so many have said before me, thank God for the book and the forum. When you begin this journey, it all seems so overwhelming and you're in denial that it really applies to YOU. But acceptance, and then action (diet) really do work. It's so hard for us Type A personalities to trust the process and have the patience to carry through. On the other hand, many of us already have "control" issues, and there's nothing quite like the day to day, minute by minute control over every morsel we put in our mouths. Gives us something to concentrate and work on while the healing begins!
Thanks again to all the newbies with their great questions and all the "old-timers" for their wise and patient advise. What would we do without you!
Chris
After 3.5 months on the strict diet, I seem to be in remission. The daily antihistamines seems to be the icing on the cake. Last week, I began the slow taper off of budensonide. So far, so good.
As so many have said before me, thank God for the book and the forum. When you begin this journey, it all seems so overwhelming and you're in denial that it really applies to YOU. But acceptance, and then action (diet) really do work. It's so hard for us Type A personalities to trust the process and have the patience to carry through. On the other hand, many of us already have "control" issues, and there's nothing quite like the day to day, minute by minute control over every morsel we put in our mouths. Gives us something to concentrate and work on while the healing begins!
Thanks again to all the newbies with their great questions and all the "old-timers" for their wise and patient advise. What would we do without you!
Chris
