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Hi Tex, I was wondering if there is any connection with nerve endings in the colon and the nerves in your legs. One of the other things that popped up in my life with thryroid and mc is restless leg syndrome. Sometimes it's very minimal and other times it's very extreme. Often when I'm going to have a bm, I can feel these sensations down my legs that are hard to describe (tingly, twitchy, ???).
During the past year when I went through a series of doctors, specialists, etc., to find our what was wrong with me, I saw 2 different neurologists. I had had some muscle twitching in my face and other parts of my body. They cleared me of anything serious, I even had an MRI. I still get the muscle twitches at times. They checked my ferritin levels and one doctor said it was normal, and another one said it was on the low end and to take iron. (From the same test.) My current PCP thinks I don't absorb my nutrients, minerals because of the mc and thinks it's a magnesium deficiency which I take shots for. I just wondered if you see any connections with this and mc. Thanks for your help. JoAnn
Weird question for Tex and others
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Hi JoAnn,
While MC shouldn't have any direct effect on restless leg syndrome, (RLS), lower back problems sometimes seem to be connected with MC, and the sciatic nerve can be affected, (which can effect the legs, though the typical result is pain radiating down the legs).
A more likely cause of RLS would be peripheral neuropathy, which can be caused by gluten-sensitive enteropathy. In severe cases, some of the chemical "fallout" due to gluten-sensitive enteropathy can cross the blood-brain barrier, and cause neurological effects which can range from minor to severe, resulting in permanent damage, in some cases. If this is the cause of your RLS, then your RLS symptoms should promptly resolve, on the GF diet.
Iron deficiency anemia, can indeed cause RLS, of course, but many of us suffer from low levels of vitamin B-12, due to a severe malabsorption problem, with the same end result, IOW, a B-12 deficiency can cause pernicious anemia. The body can store B-12 in the liver for years, but it will eventually run low, if malabsorption is present. Since this is such a common problem with MC, and I don't believe that it's possible to overdose on B-12, (you would have to really go to extremes, if it is even possible to OD), I would suggest that you try some substantial doses of B-12, along with folic acid.
Folic acid cannot be stored in the body, and it is toxic in excessive doses, so you have to be careful with it. The point is, without adequate folic acid, your body cannot absorb B-12, so you need them both. Many breakfast cereals, and if I recall correctly, many brands of wheat flour, are fortified with folic acid, which of course, a GF diet excludes. You need a minimum of 400 IU of folic acid per day, but not more than about 1,200 IU.
As long as a malabsorption problem exists, taking conventional B-12 vitamin supplements, (in the form of cyanocobalamin), will result in absorption levels so low that your body will derive virtually no benefit from even large doses. You need to find a B-12 supplement designed for sublingual use. (Sublingual means that it is designed to be disolved under the tongue, where the methylcobalamin form of active ingredient will be absorbed directly in to the bloodstream, thus completely bypassing the malabsorption problem in your small intestine. IOW, the body normally converts cyanocobalamin into methylcobalamin, but it has to be able to absorb it, before it can convert it. The label should show the active ingredient to be listed as methylcobalamin, and it should indicate that the lozenges are for sublingual use.
When I was healing, I occasionally used allergen-free lozenges that contained both 1,000 IU of B-12, and 400 IU of folate. Early on, I sometimes used a version that contained 5,000 IU of B-12, (but no folic acid), along with either a multipurpose vitamin that contained folic acid, or one of the lozenges that contained 1,000 IU of B-12, and 400 IU of folic acid. Or, you can get a B-12 injection from your doc, but the sublingual lozenges are just as effective as the injections, and I'll bet they're cheaper and easier to take.
There are many other "suggested" possible causes for RLS, for example, if you're taking any antiadrenergic agents, those could cause RLS. I have a hunch, though, that this "trick" with B-12 and folic acid, will resolve your RLS problem. I hope this helps, and please let us know how it goes, if you try it.
You're most welcome.
Tex
While MC shouldn't have any direct effect on restless leg syndrome, (RLS), lower back problems sometimes seem to be connected with MC, and the sciatic nerve can be affected, (which can effect the legs, though the typical result is pain radiating down the legs).
A more likely cause of RLS would be peripheral neuropathy, which can be caused by gluten-sensitive enteropathy. In severe cases, some of the chemical "fallout" due to gluten-sensitive enteropathy can cross the blood-brain barrier, and cause neurological effects which can range from minor to severe, resulting in permanent damage, in some cases. If this is the cause of your RLS, then your RLS symptoms should promptly resolve, on the GF diet.
Iron deficiency anemia, can indeed cause RLS, of course, but many of us suffer from low levels of vitamin B-12, due to a severe malabsorption problem, with the same end result, IOW, a B-12 deficiency can cause pernicious anemia. The body can store B-12 in the liver for years, but it will eventually run low, if malabsorption is present. Since this is such a common problem with MC, and I don't believe that it's possible to overdose on B-12, (you would have to really go to extremes, if it is even possible to OD), I would suggest that you try some substantial doses of B-12, along with folic acid.
Folic acid cannot be stored in the body, and it is toxic in excessive doses, so you have to be careful with it. The point is, without adequate folic acid, your body cannot absorb B-12, so you need them both. Many breakfast cereals, and if I recall correctly, many brands of wheat flour, are fortified with folic acid, which of course, a GF diet excludes. You need a minimum of 400 IU of folic acid per day, but not more than about 1,200 IU.
As long as a malabsorption problem exists, taking conventional B-12 vitamin supplements, (in the form of cyanocobalamin), will result in absorption levels so low that your body will derive virtually no benefit from even large doses. You need to find a B-12 supplement designed for sublingual use. (Sublingual means that it is designed to be disolved under the tongue, where the methylcobalamin form of active ingredient will be absorbed directly in to the bloodstream, thus completely bypassing the malabsorption problem in your small intestine. IOW, the body normally converts cyanocobalamin into methylcobalamin, but it has to be able to absorb it, before it can convert it. The label should show the active ingredient to be listed as methylcobalamin, and it should indicate that the lozenges are for sublingual use.
When I was healing, I occasionally used allergen-free lozenges that contained both 1,000 IU of B-12, and 400 IU of folate. Early on, I sometimes used a version that contained 5,000 IU of B-12, (but no folic acid), along with either a multipurpose vitamin that contained folic acid, or one of the lozenges that contained 1,000 IU of B-12, and 400 IU of folic acid. Or, you can get a B-12 injection from your doc, but the sublingual lozenges are just as effective as the injections, and I'll bet they're cheaper and easier to take.
There are many other "suggested" possible causes for RLS, for example, if you're taking any antiadrenergic agents, those could cause RLS. I have a hunch, though, that this "trick" with B-12 and folic acid, will resolve your RLS problem. I hope this helps, and please let us know how it goes, if you try it.
You're most welcome.
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 Tex, I knew I could count on you to come through with great information. I should have mentioned that my dr has me on a script for mag-b12-folic acid injections that I take at home twice a week. (Since last Oct.) They've helped me a lot and my restless legs seemed to almost disappear until I went back to work in Jan. I'm on my feet most of the day and that seems to aggravate things. I am so intrigued to learn of the connection with gluten and rls. I'm hoping that as time passes and I'm gf, that many of my problems will diminish. Thank you for interpreting all this medical info and presenting it in a way I can understand and that makes sense to me. JoAnn
WOW, I had to look up antiadrenergic. 
I'm glad I'm not on any of them. I have had RLS (on and off) for many years.
Joann, I surely understand how hard it is to explain what the sensation feels like. There doesn't seem to be any way to accurately describe it.
Tex, does this one look like a good one to try or do you have a better suggestion?
http://www.bulknutrition.com/p1472_Chew ... Foods.html
Love, Shirleyh
I'm glad I'm not on any of them. I have had RLS (on and off) for many years. Joann, I surely understand how hard it is to explain what the sensation feels like. There doesn't seem to be any way to accurately describe it.
Tex, does this one look like a good one to try or do you have a better suggestion?
http://www.bulknutrition.com/p1472_Chew ... Foods.html
Love, Shirleyh
When the eagles are silent, the parrots begin to jabber"
-- Winston Churchill
-- Winston Churchill
Hi Shirley, I had to look up antiadrenegic, too. I've taken atenolol for almost 20 years for a hereditary benign heart arrythmia, but I've never had any side effects, so I don't think that's the problem. Yes, trying to describe the restless leg sensations is like trying to describe the color yellow to someone without saying yellow. JoAnn
Hi Shirley,
That one appears to be a chewable tablet, (even though the ad mentions dissolving it under the tongue). Farther down the page the B-12 in it is listed as being in the form of cyanocobalamin, which is not the sublingual form. It should be methylcobalamin.
Here's what I used/use:
http://www.evitamins.com/product.asp?pid=2729
http://www.evitamins.com/product.asp?pid=4209
I didn't buy it there, though. I usually bought/buy it at a health food store.
The descriptions in those ads are not very well written. The description on the first one doesn't even mention the form of B-12 in the ad, but the bottle clearly states it to be methylcobalamin, and it also states that it is for sublingual use. You'll note that the sublingual versions are much more expensive, (much smaller quantities in the bottles), but these are megadoses, (16,667 % Daily Value, and 83,333 % Daily Value, respectively.
I haven't found any sublingual B-12 without sorbitol, and the second one, (the one with 5,000 mcg of B-12), even contains citric acid, and malic acid.
Love,
Tex
That one appears to be a chewable tablet, (even though the ad mentions dissolving it under the tongue). Farther down the page the B-12 in it is listed as being in the form of cyanocobalamin, which is not the sublingual form. It should be methylcobalamin.
Here's what I used/use:
http://www.evitamins.com/product.asp?pid=2729
http://www.evitamins.com/product.asp?pid=4209
I didn't buy it there, though. I usually bought/buy it at a health food store.
The descriptions in those ads are not very well written. The description on the first one doesn't even mention the form of B-12 in the ad, but the bottle clearly states it to be methylcobalamin, and it also states that it is for sublingual use. You'll note that the sublingual versions are much more expensive, (much smaller quantities in the bottles), but these are megadoses, (16,667 % Daily Value, and 83,333 % Daily Value, respectively.
I haven't found any sublingual B-12 without sorbitol, and the second one, (the one with 5,000 mcg of B-12), even contains citric acid, and malic acid.
Love,
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.
JoAnn,
Thinking back, I can remember times, (usually at night, when I was trying to sleep), that I had RLS, but it only occurred when I was having pretty severe reactions. I can also remember a few times when I had RLS during the day, but I believe it was always when I felt so bad that I laid down for a while. I don't recall having any problems at other times, though I may have forgotten them.
I had forgotten all about that, because at the time, I didn't think anything of it, because I was so sick, anyway, that it seemed to be the least of my worries. Now that I think about it though, it was aggravating as the dickens, sometimes, and kept me from getting to sleep some nights.
That all went away, though, after I was on the diet for a few months.
Tex
Thinking back, I can remember times, (usually at night, when I was trying to sleep), that I had RLS, but it only occurred when I was having pretty severe reactions. I can also remember a few times when I had RLS during the day, but I believe it was always when I felt so bad that I laid down for a while. I don't recall having any problems at other times, though I may have forgotten them.
I had forgotten all about that, because at the time, I didn't think anything of it, because I was so sick, anyway, that it seemed to be the least of my worries. Now that I think about it though, it was aggravating as the dickens, sometimes, and kept me from getting to sleep some nights.
That all went away, though, after I was on the diet for a few months.
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 Tex, I know what you mean about being so sick that rls was the least of your problems. I feel it during the day also. I'm placing great faith in the gf diet and hope I have the good results you and others have had after a few months. It's helpful to know others have these issues. Thanks again, JoAnn
Courage is being scared to death, but saddling up anyway. John Wayne