Feet & toes

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Cincygirl
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Feet & toes

Post by Cincygirl »

]ok, i have another question,,, has anyone experienced their feet and toes feeling numb, or like they are sleeping, tingling, sensation? I thought i read somewhere that that could be a symptom of MC? Thanks again[/b]
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tex
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Post by tex »

That's probably peripheral neuropathy. It can be caused by a deficiency of vitamin B-12 (possibly connected with a deficiency of folic acid), and it can be caused by neurological damage due to untreated gluten sensitivity. MC (like celiac disease) can cause a malabsorption problem which can eventually lead to deficiencies of certain vitamins (such as the "B" vitamins and vitamin D) and minerals (such as magnesium).

Quite a few of us have neurological damage, including myself. I have very little feeling remaining in my feet, though it's better than a few years ago. I've been taking a prescription vitamin mix known as Metanx for several years, and my reflexes, sense of touch, and balance are better, though still way short of normal.

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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 carol1946 »

Yes.....It seems as if every time I read a topic someone is unveiling another condition that I suffer from. My PC prescribed gabpentin and my D tripled. The tingling drives me crazy!!!

Best of luck with this one,
Carol
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Fish2575
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Post by Fish2575 »

It is nice to hear we are not crazy! The tingling was driving me crazy for a while, but now it is better. Still if I get in a hot tub my whole legs feel like pins and needles.

Tex, I took the Metanx for about 6 months. At first it really helped and then I was one of the lucky few who had the side effect of fatigue and worsening symptoms, ie more tingling! When I went off I have been great since!

Have you been on the Metanx consistently for a long time? I get so confused bc the Histamine Intolerance that I believe I have says no B12 or Folic Acid, just B6.

Anyway, I am much better almost a year and half after going gluten free.

Susie
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tex
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Post by tex »

Susie wrote:Tex, I took the Metanx for about 6 months. At first it really helped and then I was one of the lucky few who had the side effect of fatigue and worsening symptoms, ie more tingling! When I went off I have been great since!

Have you been on the Metanx consistently for a long time? I get so confused bc the Histamine Intolerance that I believe I have says no B12 or Folic Acid, just B6.
I've been taking it for 3 years (well, in about 3 weeks it will be 3 years). It took over a year before I started seeing any significant results, and if I've had any adverse effects from it, I'm not aware of them. I wasn't aware that B-12 and folic acid were contraindicated for histamine-based problems. My classic pollen-related allergy symptoms have been significantly suppressed since I've been taking it. I ascribe that to the folic acid. My PCP takes Metanx also, and he agrees with me that the folic acid seems to minimize allergy symptoms. However, he doesn't take it because of peripheral neuropathy -- he takes it to enhance cognizance and memory, and to delay the onset of dementia.

Did you ever check your B-12 level? Perhaps you're one of those individuals who are unable to eliminate excess amounts of it. :shrug:

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Fish2575
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Post by Fish2575 »

Did you ever check your B-12 level? Perhaps you're one of those individuals who are unable to eliminate excess amounts of it.

I think that is probably the case. Unfortunately I cannot seem to get anyone to run labs on me. I am lost in the mass of specialists. Everyone expects someone else to deal with me, and my PCP is just plain old overwhelmed by me! My folate level was high the last time it was measured, but I am pretty sure I haven't had a B12 done.

This is what I have found.....

Zinc, Manganese, Niacin, Vitamin B12 and folic acid may also increase histamine levels.
As these contain minerals and vitamins that can lead to a higher level of histamine and should be avoided in case of a histamine intolerance. Yes folic acid(B9), vitamin b12 and niacin(B3) I’m looking at you....
High histamine individuals are inherently high in folic acid; folic acid is used along with B-12 in the production of histamine. So those with high histamine levels need to avoid taking folic acid and B-12.
[/quote]
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tex
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Post by tex »

But what's your source? Can you copy the URL of that site from the navigator bar in your browser and paste it here?

The system will automatically convert it into a link.

Tex
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Post by Fish2575 »

Yes, let me find the original histamine intolerance article and I will paste that link.
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Post by Fish2575 »

Not having any luck finding the original article..... these are the links to the quotes I put up, but none are scientific. I had originally read some medical journal somewhere that mentioned it.

http://www.histrelief.com/
http://histamino.wordpress.com/
http://biologyofkundalini.com/article.p ... =Histamine


I will keep hunting for something more scientific. I can say for certain though that once I stopped folic acid and B12 I got better. I am probably not the norm!
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tex
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Post by tex »

Thanks. Hmmmmmmmm. I looked at the first site. While it appears to be mostly legit, there's a major problem in their policy of belittling the benefits of long-term diet exclusions. I'm guessing their main goal is to sell lab tests, rather than to inform patients with unbiased information.

Note (from your second reference) that in addition to B-6, an adequate supply of magnesium is necessary, in order to allow DAO to work properly. Many/most of us have a magnesium deficiency, and that can definitely have an adverse effect on neurological issues (for example, a magnesium deficiency can cause the restless leg syndrome and leg or food cramps).

The third reference is a good source of information that I had previously bookmarked (I probably referenced it in the book, but I don't recall for certain). From that source:
High histamine individuals are inherently high in folic acid; folic acid is used along with B-12 in the production of histamine. So those with high histamine levels need to avoid taking folic acid and B-12.
Histamine is also connected with nitric oxide (NO), and it is well known that the IBDs are associated with elevated levels of NO. In view of that, some "experts" have recommended treating IBDs by lowering NO levels, while others say that because they are strictly local effects, the elevated NO levels are there because the body uses it to fight inflammation, so more NO should be beneficial. Who's right? :shrug: Hard to say, because trial results are conflicting and confusing, so apparently it's a moot point. Likewise, just because B-12 and/or folic acid is elevated in cases involving histamine issues, does not constitute proof of anything more than an association, which may or may not be relevant.

IMO, starving the body for B-12 and/or folic acid in an effort to suppress histamine levels is a very counterproductive way to go about it, because doing this will probably not suppress histamine levels until the body is virtually depleted of B-12 and/or folic acid. The associated collateral damage due to those deficiencies will almost surely be very detrimental to overall health. Of course, if blood or tissue tests show that plenty of B-12 and folic acid is available, then supplementation is unnecessary, anyway, and should be avoided.

Actually, at least normal levels of histamine are necessary for many vital digestive system (and immune system) functions. As is the case with cholesterol (another vital feedstock for important body chemical processes), without adequate histamine levels, many body processes (including digestive processes) will run into trouble. A better way to control histamine levels is to stabilize their sources, namely mast cells and basophils, so that they do not degranulate inappropriately. Basophils are not normally a problem with MC, of course, so we shouldn't have to worry about them (they are a problem with Crohn's, though).

Anyway, that's the way I see it. B-12 and folic acid may have just been given a bum rap, because of the crowd they hang out with, so to speak. We just don't understand the reason why they are present with high histamine issues (but that doesn't make them guilty of anything other than hanging out in a suspicious location). Until a cause and effect is proven, I believe I'll continue to take high doses of B-12 and folic acid, but I agree that YMMV (and so might anyone else's).

Tex
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Post by Joefnh »

Hi CG, as Tex and others have mentioned this may very well be related to gluten induced neurological damage.

I did notice your other note about lower back pain as well. IBDs and lower back pain do go hand in hand and as I am going through some autoimmune back issues right now, I do want to mention that there are several autoimmune back issues that affect the feet and legs.

For some reason it seems that IBDs and lower back and nerve root issues go hand in hand. The nerve roots are the main nerve bundles that branch out and feed all of the sensations in the legs, feet etc... If there is inflammation going on in the lower spine, this could affect what you are feeling in your legs and feet.

If after you have eliminated the gluten and tried the vitamin B supplementation for a while and you do not see an improvement in these sensations, be sure to let your doctor know as damage due to inflammation in the lower back may be causing long term problems.

The cautionary note is that if this is due to either mechanical lower back problems and or inflammatory lower back problems and is left untreated, you could cause long term damage to the nerve roots. Hopefully this will resolve soon though.

I hope you feel better soon.

Take care :-)
Joe
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Post by Gloria »

This may be totally unrelated, but tingling of the feet is also associated with diabetes.

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Post by tex »

Gloria wrote:This may be totally unrelated, but tingling of the feet is also associated with diabetes.
Definitely -- right on target. The only way to tell the difference between diabetes-related peripheral neuropathy and gluten-connected peripheral neuropathy apparently is the presence of diabetes. Metanx was specifically formulated to treat diabetes-related peripheral neuropathy, and that's the diagnosis for which it's mostly prescribed.

Of course, there is a very strong link between diabetes and celiac disease/gluten sensitivity, so perhaps gluten sensitivity is the primary cause of peripheral neuropathy, and the association with diabetes is incidental.

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 Fish2575 »

And not always easy to differentiate when one has both long standing diabetes and gluten intolerance....except when it gets better the longer away from gluten :)
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Post by GRB »

I have this too! I feel like I have socks on. It's worse on the left foot than the right. I looked up metanx and may ask my doctor for a script. I've been taking manganese but not B-12/folic acid. Tex, you mention a high dose..what dosage is considered a good one for MC? I learn more here than anywhere on the web! I started having problems with tingling and burning over 15 years ago. I'm not diabetic however one morning I found that my feet hurt to walk on...burning tingling sensation that last a few days, very painful but I went to work anyway. So much of this has been going on for years and all my efforts to find out what was happening ended up with my be considered 'hysterical'...*sigh*... many of us have been there.

This website has saved my life, literally.

Thanks folks!
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