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JohnT

Neuropothy

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I was diagnosed with Celiac 20yrs ago - when Doctors knew very little about it - and apparently that hasn't changed.

I have been gluten free for 20yrs - and have been having leg numbness and hands tingling etc.. steadily for the past 3+ years. And it is getting worse. Can't stand too long - leg goes numb - same if I sit or walk for a period of time.

At the time of diagnosis I was 40 years old - so there was 40years of gluten damage done already. I realize some of this cannot be repaired but it looks like the doc's do not have a clue.

Has anyone else had this problem? and what can be done about it?

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If you have been gluten-free for 20 years and this trouble started 3 years ago, maybe it has nothing to do with gluten and Celiac. I can think of lots of things it could be like a vertebrae problem, bad hip, etc.

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Definitely get your B12 levels checked, or better yet just pick up a sublingual B12 supplement. Make sure it's methylcobalamin, the easy absorbable kind. I was having neuropathy ever increasing and it turned out all I needed was B12, after taking quite a bit of it for 2 weeks the tingling was gone and I was regaining feeling in my feet, face, hands, dramatically. I was taking the standard 1000 a day but once I upped it to 2000 a day my progress sped up, then I went down to 1000 a day once completely better. A lot of diabetics have B12 deficiency causing their neuropathy as well. Maybe start on the supplement asap and then get your levels checked asap as well, but because it takes awhile to get the results back in a blood test (like a week) I wouldn't wait too long seeing neuropathy is nerve damage

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You can safely take 5,000 mcg of B-12 every day. Neuropathy is a symptom of B-12 deficiency. Your B-12 should be as high as possible....1,000 or more. If it is under 500 you are developing a problem. And if it is 250 or less, it is very bad.

As the previous person said, take sublingual Methyl B-12. Jarrow and NOW are good brands. Put it in your mouth and slowly dissolve it a half hour before eating breakfast. This will ensure good absorption. Very little B-12 actually makes it into your cells. I know that 5,000 sounds like a lot, but really only a small amount actually gets into your body. You want to take a higher dose to ensure that you can raise your levels adequately. If it doesn't work (get re-tested in 3 months) then you may need B-12 shots.

I know all this because I discovered a B-12 deficiency a few months ago. I researched the hell out of the topic. I insisted that my husband get his tested. He was also deficient (worse than me) and now realizes that some of the weird tingling he felt in his feet was due to this problem. Now we both take our B-12 every morning.

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As well as B12 I'd suggest you find a form of thiamine called benfotiamine. It helped a friend of mine with neuropathy.

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You should also check your blood sugar. Even if the doctor's office tests are normal (fasting glucose and A1c), you should get a meter and check your blood glucose level before you eat and again 1 hour after the first bite.

Any time your blood sugar goes over 140, you are causing damage to your nerves and organs even if you are not diabetic. http://www.phlaunt.com/diabetes/14045678.php

For more details, see the blood sugar 101 website and keep us posted.

www.bloodsugar101.com

and here's a link to the companion blog. Most of this info is in book form if that's easier for you to read.

http://diabetesupdate.blogspot.com/2011/03/research-gives-fascinating-insight-into.html

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I too found methylcobalamin to be incredibly helpful. The recommendation of 5mg per day is what I'd suggest as well. There is no known level of overdose for B12. Besides the brands mentioned, Source Naturals also makes a decent one.

Another nutrient which has helped me immeasurably is magnesium, so I'd highly recommend that too. Start with 200mg per day, and increase by 200mg every five days or more, until you find your comfort level. If you take too much, you'll likely experience loose stools before anything else. But generally, you shouldn't need whopping doses of it. However, your calcium intake can influence the amount of magnesium your body can absorb. Too much calcium can in fact lead to magnesium deficiency, which I suppose is one reason why it is estimated that 80% of the U.S. population is deficient in magnesium (Americans consume more dairy than nearly any country on the planet, and ironically, also have one of the highest rates of osteoporosis). Magnesium is vitally important for proper bone formation.

Other than that, do go over your food items, as ingredients can change, and CC may be a factor which wasn't previously.

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I suggest you have your levels checked. You need to know WHY this is happening. Neuropathy needs to be investigated.

Have your B-12, Folate and Blood glucose checked and see a NEUROLOGIST.

I had the same symptoms you describe.

Everyone has made good suggestions, and I do not disagree with them-- but it is wise to have a baseline level done before supplementing to make sure you are getting an adequate amount. IMHO

I know everyone says there is no unsafe level for taking some supplements, but my doctor feels otherwise and in my case, over-supplementing with B vitamins (especially B-12) was causing more harm than good. You can develop toxic levels, apparently.

Just my experience. Just my opinion.

Please, everyone--don't start scolding me and sending me articles off the internet. :lol:

I HAVE read them all, honest! :)

xxoo IH

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[quote name='IrishHeart' timestamp='1328471325'

Everyone has made good suggestions, and I do not disagree with them-- but it is wise to have a baseline level done before supplementing to make sure you are getting an adequate amount. IMHO

I know everyone says there is no unsafe level for taking some supplements, but my doctor feels otherwise and in my case, over-supplementing with B vitamins (especially B-12) was causing more harm than good. You can develop toxic levels, apparently.

Just my experience. Just my opinion.

Please, everyone--don't start scolding me and sending me articles off the internet. :lol:

I HAVE read them all, honest! :)

xxoo IH

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I know everyone says there is no unsafe level for taking some supplements, but my doctor feels otherwise and in my case, over-supplementing with B vitamins (especially B-12) was causing more harm than good. You can develop toxic levels, apparently.

This is interesting. I got shot down on this board last year for suggesting that it was unwise to megadose vitamin B12.

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This is interesting. I got shot down on this board last year for suggesting that it was unwise to megadose vitamin B12.

Skylark, I wish I had seen that thread because I would have defended your statement. Every time I see a post recommending people just buy random vitamins and supplements and take a bunch of them at high doses, without base level readings or guidance, I cringe. :unsure:

High doses of B vitamins can cause a wide variety of problems.

Mega-dosing Vitamin B6 causes nerve toxicity. A functional med doctor suggested I high dose B6 when I had neuropathy, but all it did was create WORSE symptoms.

Too much Vit B3 (niacin)causes jaundice, flushing, rapid heartbeat, elevated liver enzymes and nausea. (according to Dr. Weil)

Too much folic acid (B9) will mask a B-12 deficiency.

Too much B6 and B-12 create acne eruptions.

http://www.ncbi.nlm.nih.gov/pubmed/1834437

After supplementing a B-12 def--upon the advice of my PCP doctor--I just kept taking it for years (1000 mcg sublingual) and eventually, my level was tested by my GI doc (post DX) and it was sky high. He said "okay, stop taking that right now!"

And my insomnia, agitation, and racy, skipping heartbeat/chest heaviness subsided in a month.

The Mayo Clinic reports gastrointestinal problems, kidney and liver problems from too much intake of B-12.

and

From the Univ. of Maryland Research Center:

"Vitamin B12, also referred to as cobalamin or cyanocobalamin, supports the human body in preserving healthy nerve cells. Our bodies also churn out DNA and RNA with the help of B12. The average adult, 19 years of age and older, should consume 2.4 mcg per day. Foods containing the vitamin include fish, meat and dairy. Being water soluble, it's easy to rid the body of excess B12 should too much become ingested. However, too much B12 can disrupt the body in dangerous ways; therefore, you should not take it thoughtlessly.

By far, heart complications subsist as the most dangerous side effects to have and possibly the scariest. Symptoms consist of: shortness of breath or difficulty breathing; increased heart rate or heart palpitations; pain in the arms and legs; numbness in the arms, all of which are also symptoms of congestive heart failure, which is another danger of high B12. Peripheral vascular thrombosis or rather, clots in the blood vessels and pulmonary edema can present major risk factors.

Mental disorders can happen with high B12.

The mental disorders that one can develop may be the most menacing of side effects because they affect the mind. They include anxiety, nervousness, insomnia and panic. These side effects can also raise your heart rate, shorten your breath, cause tightness in the chest and make you feel as though you're experiencing cardiovascular weakness as well. Knowledge of stress management and breathing techniques would help in this situation; however, if the anxiety, nervousness, or panic attacks cause respiratory problems or pain, you should notify your doctor as soon as possible.

Feeling sick in general can happen with too high B12.

Ailments that may come over a person after ingesting too much B12 are diarrhea, headache, dizzy spells, indigestion, upset stomach, vomiting, back pain, swelling and arthritis. Additionally, lack of coordination, skin rashes and hives, mild to severe acne, rosacea and dermatitis could slightly impede a person's feeling of well being.

Taking any one of the B vitamins for a long period of time can result in an imbalance of other important B vitamins. For this reason, you may want to take a B complex vitamin, which includes all the B vitamins. Taking folic acid at high doses can hide a vitamin B12 deficiency, so these vitamins are often taken together. Talk to your doctor before taking more than 800 mcg of folic acid."

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I think you're probably right - my doc balked when I told him that I was taking 4000 mg of vitamin c per day (my immune system sucks) which totally surprised me as I know that excess C leaves the body via urine and does not build up. He told me yes that's true But excess C depletes your copper levels and some other stuff that I no longer remember. It showed me that it's not quite as simple as we might think and that perhaps these things should be monitored by a naturopath or something. No research to back this up either :) just hearsay from my doc. But it gave me pause...

He's right. (i do not often say that about a doctor! :lol: )

And the Mayo Clinic reports:

For adults, the recommended upper limit for vitamin C is 2,000 milligrams (mg) a day. Although too much dietary vitamin C is unlikely to be harmful, megadoses of vitamin C supplements may cause:

Diarrhea

Nausea

Vomiting

Heartburn

Abdominal cramps

Headache

Insomnia

Kidney stones

However, the Linus Pauling Institute does confirm that overdosing on vitamin C does not cause dangerous toxicity, and you should not have any lasting effects. Any symptoms you may develop from high vitamin C dosages should go away when you stop taking supplements.

But this study was more disturbing, which in part reads:

"The finding, published in the current issue of the British journal Nature, corroborates warnings that have been issued for decades by an American physician, Dr. Victor Herbert, professor of medicine at the Mount Sinai School of Medicine in New York. Dr. Herbert has shown, primarily through laboratory studies, that vitamin C supplements promote the generation of free radicals from iron in the body.

''The vitamin C in supplements mobilizes harmless ferric iron stored in the body and converts it to harmful ferrous iron, which induces damage to the heart and other organs,'' Dr. Herbert said in an interview.

''Unlike the vitamin C naturally present in foods like orange juice, vitamin C as a supplement is not an antioxidant,'' Dr. Herbert said. ''It's a redox agent -- an antioxidant in some circumstances and a pro-oxidant in others.''

In contrast, vitamin C naturally present in food, he said, has no oxidizing effects.

Vitamin C supplements in large doses have been linked to genetic damage as far back as the mid-1970's."

The full article is here:

http://www.nytimes.com/1998/04/09/us/taking-too-much-vitamin-c-can-be-dangerous-study-finds.html

It is best to get vitamins/minerals from FOODS, but until absorption is improved, we all may need some supplementation. But it should be the right ones and in the right amount.

After that, too much of any supplement, is just a waste of money and can cause more harm than good. I speak from painful experience and having spent thousands of dollars (pre- DX) on suggestions from alternative and functional med practitioners on things that did nothing except create more digestive issues, assorted neuro symptoms and lighten my wallet. :rolleyes:

IMHO

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He's right. (i do not often say that about a doctor! :lol: )

And the Mayo Clinic reports:

For adults, the recommended upper limit for vitamin C is 2,000 milligrams (mg) a day. Although too much dietary vitamin C is unlikely to be harmful, megadoses of vitamin C supplements may cause:

Diarrhea

Nausea

Vomiting

Heartburn

Abdominal cramps

Headache

Insomnia

Kidney stones

However, the Linus Pauling Institute does confirm that overdosing on vitamin C does not cause dangerous toxicity, and you should not have any lasting effects. Any symptoms you may develop from high vitamin C dosages should go away when you stop taking supplements.

But this study was more disturbing, which in part reads:

"The finding, published in the current issue of the British journal Nature, corroborates warnings that have been issued for decades by an American physician, Dr. Victor Herbert, professor of medicine at the Mount Sinai School of Medicine in New York. Dr. Herbert has shown, primarily through laboratory studies, that vitamin C supplements promote the generation of free radicals from iron in the body.

''The vitamin C in supplements mobilizes harmless ferric iron stored in the body and converts it to harmful ferrous iron, which induces damage to the heart and other organs,'' Dr. Herbert said in an interview.

''Unlike the vitamin C naturally present in foods like orange juice, vitamin C as a supplement is not an antioxidant,'' Dr. Herbert said. ''It's a redox agent -- an antioxidant in some circumstances and a pro-oxidant in others.''

In contrast, vitamin C naturally present in food, he said, has no oxidizing effects.

Vitamin C supplements in large doses have been linked to genetic damage as far back as the mid-1970's."

The full article is here:

http://www.nytimes.com/1998/04/09/us/taking-too-much-vitamin-c-can-be-dangerous-study-finds.html

It is best to get vitamins/minerals from FOODS, but until absorption is improved, we all may need some supplementation. But it should be the right ones and in the right amount.

After that, too much of any supplement, is just a waste of money and can cause more harm than good. I speak from painful experience and having spent thousands of dollars (pre- DX) on suggestions from alternative and functional med practitioners on things that did nothing except create more digestive issues, assorted neuro symptoms and lighten my wallet. :rolleyes:

IMHO

Baaagh! Now someone tells me. I have been taking tons of vitamin c for YEARS. Insomnia has been a major issue for me for years. Sigh. Just goes to show that all the online reading you do does Not make you a physician :).

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