If Your MC Is Active, Please Take Vitamins B-6,9 and 12

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tex
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If Your MC Is Active, Please Take Vitamins B-6,9 and 12

Post by tex »

Hi All,

OK, during the appointment with a neuro doc, on Tuesday of this week, the doctor found that I have peripheral neuropathy. In fact, it's severe enough that I have basically the same risk of amputation that diabetics can have, if they don't follow proper guidelines for treatment, (or if they're just plain unlucky), and they develop a lesion on a foot, that is slow to heal. If I understood him correctly, this is an entirely separate issue from the Parkinson's disease, but I could be wrong.

The neuro doc gave me a full box of 12 sample bottles of a "prescription medical food for the dietary management of endothial dysfunction in patients with diabetic peripheral neuropathy". It contains:

L-methylfolate 2.8 mg
Pyridoxal 5'-phosphate 25 mg
Metyhylcobalamine 2 mg

Those are, respectively, the active forms of folate, (B-9), vitamin B-6, and vitamin B-12.

The RDAs for those vitamins, (for me), would be:

Folate, (B-9) 0.33 mg
B-6 2 mg
B-12 0.0024 mg

Obviously, the supplement contains the following percentages of my respective RDAs:

Folate, (B-9) 850%
B-16 1,250%
B-12 83,333%

When I do a little research on this stuff, I find the following:
Folic acid toxicity is rare. High doses (above 15 mg) can cause stomach problems, sleep problems, skin reactions, and seizures. Folic acid supplementation can mask vitamin B12 deficiency, which can cause permanent damage to your nervous system. Folic acid supplementation should always include vitamin B12.
http://www.oralchelation.com/ingred/folicacid.htm

The recommended dose is one or two tablets, daily.
Folic acid can correct the anemia that is caused by vitamin B12 deficiency. Unfortunately, folic acid will not correct the nerve damage also caused by vitamin B12 deficiency [1,36]. Permanent nerve damage can occur if vitamin B12 deficiency is not treated.

In recent years, researchers have identified another risk factor for cardiovascular disease: an elevated homocysteine level. Homocysteine is an amino acid normally found in blood, but elevated levels have been linked with coronary heart disease and stroke [38-47]. Elevated homocysteine levels may impair endothelial vasomotor function, which determines how easily blood flows through blood vessels. High levels of homocysteine also may damage coronary arteries and make it easier for blood clotting cells called platelets to clump together and form a clot, which may lead to a heart attack [43].

Vitamin B12, folate, and vitamin B6 are involved in homocysteine metabolism. In fact, a deficiency of vitamin B12, folate, or vitamin B6 may increase blood levels of homocysteine. Recent studies found that vitamin B12 and folic acid supplements decreased homocysteine levels in subjects with vascular disease and in young adult women. The most significant drop in homocysteine level was seen when folic acid was taken alone [48-49]. A significant decrease in homocysteine levels also occurred in older men and women who took a multivitamin/ multimineral supplement for 8 weeks [50]. The supplement taken provided 100% of Daily Values (DVs) for nutrients in the supplement.
http://ods.od.nih.gov/factsheets/VitaminB12.asp

Note, however, that the subjects in that research project, presumably did not have a malabsorption problem. 100% of the RDAs will not work for us, while we are having a malabsorption problem - we require a lot more, and it has to be in a highly absorbable form, if we are to derive any benefit from it.

So what's my point in writing this post? How did I get this way? I'm not a diabetic, (at least, not so far). I'm wondering if years of malabsorption of these three vitamins, (along with others), caused the nerve damage that I now have in my feet, (and possibly the rest of my body). I'm hoping that this supplement may eventually at least partially "undo" some of the damage, since it seems to be backed by pretty sound research, but I'm not holding my breath. The only fly in the ointment, is the fact that these articles are based on research on pheripheral neuropathy, caused by diabetes, and I haven't been diagnosed with diabetes. So far at least, my blood glucose level has always been fine, on a fasting blood test, (usually down around a third to half of the trigger level),

http://web.1.c3.audiovideoweb.com/1c3we ... nsorum.pdf

http://vasculardiseasemanagement.com/co ... y-diabetes

I'm not suggesting that this will definitely happen to you, or anyone else with MC, I'm just saying that I really believe that it would be prudent to make sure that you are getting sufficient amounts of vitamins B-6, B-9, (folic acid), and vitamin B-12, (especially folic acid and B-12), if there is any chance at all that you might be having malabsorption issues for any extended length of time. Note that I did take these vitamins, for a while, during the time when I was healing, but I had been malabsorbing for several years prior to that, and I may have started taking them too late, and/or I might not have taken them in sufficient amounts to overcome the malabsorption obstacle.

If you have any thoughts on any of this, I would love to hear them.

Love,
Tex

P. S. Thanks to Gloria, for pointing out a math error in my percentages. :thumbsup:
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Post by Gloria »

I checked DH's Nature Made Diabetes Health Pack for the amounts for the B-6, B-9 and B-12 vitamins.

B-6 has 3 mg, or 150%
B-9 has 800 mcg, or 200%
B-12 has 25 mcg, or 417%

This is from one of the links you provided:
Metformin (a drug used to treat diabetes) may interfere with calcium metabolism [35]. This may indirectly reduce vitamin B12 absorption because vitamin B12 absorption requires calcium [35]. (Emphasis mine.) Surveys suggest that from 10% to 30% of patients taking Metformin have evidence of reduced vitamin B12 absorption [35].
That has implications for those of us who cannot eat dairy. The article also states:
Researchers also found that using calcium carbonate supplements (1,200 mg/day) helped limit the effect of Metformin on vitamin B12 absorption in these individuals [35].
Oh, boy - I'm taking calcium citrate supplements, which is supposed to be more readily absorbed.

I know that when I had extreme nausea during both my pregnancies (I was hospitalized both times), I was given B-6 shots. The B-6 shots immediately cleared up the nausea and I was able to eat a meal normally for the first time in weeks. As soon as I returned home from the hospital and no longer was getting the shots, I went right back to having "pernicious vomiting," the medical term for it. I never really understood why B-6 worked.

I have read that the B vitamins need to be increased proportionately and the amounts in the supplement you've been given don't seem to be in proportion. Maybe the recommendations have changed since I researched it 38 years ago when I was pregnant.

Gloria
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Post by JLH »

I started the B-12 when I saw you (Tex) "talking" to one of the other gentlemen on the bbs about it. I did and do have weird sensations in my toes. I had cramping, too, which I attributed to my Pravachol.
I have told my endocrinologist about it at all my appointments for probably over a year. NOTHING. :mad: :roll: :twisted:

I want to do the Spectracell testing if Medicare pays anything. I called a local doc that was listed on the web site but haven't heard one word. :mad:
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Post by Polly »

Mornin'!

Interesting info, you guys. I'll defer to Mary Beth - hopefully she'll be along soon (Everyone knows we docs learn little about food/nutrition in training). LOL!

One comment I'd like to make - even during my most active MC period, I never had any malabsorption according to tests. And as you know, not only do I have severe gluten sensitivity, I have many other intolerances (and initially many irritants were a problem). I know this is the case with others here too - no malabsorption despite active MC. Wouldn't it be good to find that "protective mechanism" i.e. to learn what keeps some of us from developing malabsorption?

Love,

Polly
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Post by tex »

Gloria wrote:I have read that the B vitamins need to be increased proportionately and the amounts in the supplement you've been given don't seem to be in proportion. Maybe the recommendations have changed since I researched it 38 years ago when I was pregnant.


You have to remember that the stuff that I'm using is a prescription formulation designed specifically for, "the dietary management of endothial dysfunction in patients with diabetic peripheral neuropathy". This treatment is claimed to reverse the damage, not prevent it.

Thanks for the insight.


Joan,

You will probably have to see a neurologist to learn anything about possible peripheral neuropathy in your feet. A few GPs might catch it, but my GP just attributed my symptoms to poor circulation, due to aging.


Polly,

That's an interesting observation about malabsorption, and how much that issue varies among the members here. I was initially inclined to suspect that the malabsorption problems might be specific to those of us with celiac genes, (IOW, we may be predisposed to small intestinal involvement), but when I checked the data at:

http://www.perskyfarms.com/phpBB2/viewtopic.php?t=10089

that theory was shot down, as soon as I got to Camryn's data. She had a fecal fat score of 381, and yet she does not have one of the common celiac genes - she's a double DQ1, (which makes it even more of a mystery, of course, since you're also a double DQ1). In fact, her genes are identical to yours. Hmmmmmm. :shrug: Of course, according to Dr. Edwin Liu, 1-2% of biopsy proven celiacs carry the HLA DQ1 gene, and Dr. Hadjivassiliou has found HLA DQ1 in about 20% of his gluten sensitive, (antigliadin positive), neurological patients. The remaining 80% have either HLA DQ2, or HLA DQ8, according to the respective percentages that are normally found in the celiac population. That implies that HLA DQ1 may be a "legitimate" celiac gene. Unfortunately, though, that doesn't help to understand why some of us have malabsorption problems, while others do not.

http://jccglutenfree.googlepages.com/genetictesting

Here are member gene test results:

http://www.perskyfarms.com/phpBB2/viewtopic.php?t=10084

Love,
Tex
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Post by JERRI »

Dear Tex,

Wow!!! Your condition sounds very serious. Please keep us advised of any updates on your condition!!!! :-(

I can't help but wonder, even though the elimination of certain foods helps with the treatment of the big "D"; if perhaps the elimination can't bring on other problems as well??

Sincerely, Jerri
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Post by tex »

Hi Jerri,

Actually, I feel pretty good. I believe the PD affects my deep sleep cycles, so I feel a bit rough when I awaken, but after I get up, and get going, I feel pretty doggone good.

Of course, anytime we alter our diet, we have to be concerned with nutrient balances, but my problem was that I was malabsorbing so badly because of what I was eating. I wasn't getting any nutrition out of my diet - I was only punishing myself. With me, it wasn't just the D, I felt like I had the flu from hell, when I was reacting. Everything ached, I had nausea, sometimes vomiting, uncontrollable D, migraines, arthritis, and the brain fog was so bad that I couldn't think straight.

It wasn't like I had a choice - I couldn't do my job, or anything else, before I adopted the diet. When we're intolerant to a food, and we continue to eat it, it's like eating poison, because it is indeed toxic to our body, and I have no doubt that gluten caused a lot of damage to my brain and nervous system. It took me a long time to heal, but cutting out gluten stopped all those miserable symptoms, so there is no way I would ever consider eating it again. For me, at least, gluten is not nutritious - it's toxic.

Thanks for your concern,
Tex
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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.
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Post by JERRI »

Dear Tex,

I am sorry if I offended you in any way when I made that comment about the elimination of foods creating other problems. I realize your dietary problems and that you don't really have a choice. Wouldn't it be wonderful if the medical field could come up with a little "blue pill" (with no side effects) for us to take and then for us all to be able to eat normally again?

Please forgive me.

Jerri
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Post by JLH »

Perhaps, a different color than blue. :lol:
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Post by Gloria »

Like Polly, I've never had a malabsorption problem. As you know, Polly and I share the same double DQ1 genetic test results. I can't explain Camyrn's results - she's a double DQ1, too, as you pointed out.

I've also haven't had the depression, tiredness nor brain fog that is typical with MC. I wonder if that is due to my not having any malabsorption issues?

Gloria
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Post by tex »

Jerri,

Naw, you didn't offend me - sorry if I left that impression. I just have a habit of "overdoing" my responses sometimes, when I'm trying to get a point across. :lol:

Gluten is really not a very big item to remove from one's diet, nutritionally speaking, because wheat is actually not particularly nutritious, if you take away all the "enrichments" that are added during processing. It's far from being a "complete" food. Without the added "enrichments", our bodies probably wouldn't even notice, if we were to remove wheat from the diet, (as far as nutrition is concerned). If you're going to have to add most of the nutrition anyway, you can replace it with virtually anything, and then supplement the nutrients in that other food item.

Wheat is not even a good livestock feed. It's short on some of the necessary amino acids, and the protein, (mostly gluten), is in a form that is too "hot" for most animals to be able to easily/safely digest, in quatity. Because of that, wheat can only be used as a small percentage of the ration. (I ran a cattle feedlot operation for a few years). Corn, and virtually any other grain, on the other hand, can be used in much high percentages in a ration, because they're much more easily digested, and the protein in these other grains is not nearly as likely to cause damage to an animal's digestive system, or cause them to go "off feed".

Now if we were to remove meat from our diet, or vegetables, that would be a significant step, because those foods do contain nutrients that would have to be supplemented. Grains, though, and especially the glutenous grains, are not a biggie. Our bodies can easily do without them.

Well, Dr. Fasano's corporation, and two or three other companies, are working hard and fast, to get such a pill as you describe, on the market. We'll probably see the first of them in the not too distant future, with more to follow, for those who prefer to resolve their diet problems with a pill. I have no idea what color they will be, though. I agree with Joan, I think that a nice, relaxing green color would be much better than blue. :lol:

There's nothing to forgive.

:hug:

Tex
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Post by tex »

Gloria wrote:I've also haven't had the depression, tiredness nor brain fog that is typical with MC. I wonder if that is due to my not having any malabsorption issues?
Really? I didn't realize that. Now that really confounds the situation, because Polly apparently had all the fatigue, and brain fog, and probably most of the other "trimmings", that I experienced, (but she didn't have a malabsorption problem). That pretty well proves that genetic similarity has nothing to do with symptom similarity. It seems strange that there should be such a striking similarity in the types of food intolerances, and the general degree of sensitivity, but no correlation with the variety of symptoms experienced, nor the malabsorption issue. Hmmmmmmm. :headscratch:

Probably, the neurological, (non-digestive), symptoms are connected with the leaky gut syndrome, so that may be an independent variable that we have to remember to consider.

Tex
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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.
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Post by JoAnn »

Hi Tex, this is all very interesting reading. I'm confused about the difference between leaky gut syndrome and mc. Is there a thread somewhere where you explain this or do you mind giving me a lesson? This term (leaky gut syndrome) came up at my pcp office last fall when I was first starting treatment. I was so overwhelmed with everything, I don't know that I really understood where this fit in. Is the treatment the same? How do you know if you have leaky gut syndrome. Thanks for all the time you take to help people like me. JoAnn
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Post by tex »

Hi JoAnn,

Here's a very good article on the leaky gut syndrome:

http://www.life-enthusiast.com/index/Articles/Rona

and here's a discussion about the article:

http://www.perskyfarms.com/phpBB2/viewt ... t+syndrome

IMO, the leaky gut syndrome is probably a problem anytime that we are experiencing neurological symptoms from MC - IOW, anytime we have headaches, body aches and pains, arthritis symptoms, ataxia, etc.

You're most welcome,
Tex
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Post by JoAnn »

Thank you Tex, you're amazing as always. I just printed it all off and am going to go curl up and read it. Have a good night, JoAnn
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