Peripheral Neuropathy

[MELINE]

Hello

I have problems with my toes and my fingers.I have this awful feeling of tingling or of electricty going through my hands and my feet or sometimes like someone is pinching me with a needle. Doctor said it is peripheral neuropathy. I also lose my balance. At the time, I thought it had to do with glutening. But now I am almost sure I am not getting any hidden gluten, but I still have these feelings and they are intnense. Is it something permanent or am I getting hidden gluten? I've tried to get some answers at google, and I think that the articles say it is permanent and you can only stop it from getting worse with the treatment of the underlying cause. I don't care if my feet keep tingling, I am just wondering if I am getting any hidden gluten. My next visit to the doctor is 12 september...any one with that problem?????

Thank you so much.

Meline

[ShayFL]

Hi Meline,

I DO NOT believe in the words "incurable". MANY people on here have suffered with neuropathy and gotten better gluten-free (and/or eliminating other food intolerances and/or getting treated for Lyme/Candida, etc.). THEY GOT BETTER!!

So do not think you will always have this. I have it. And it waxes and wanes. Sometimes it goes completely away and then it comes back.

Nerves are funny things. First, they take a LONG TIME to heal. Estimates are 1 - 2 years gluten-free for complete resolution. AND when they are healing they do some crazy things. New sensations. Worse before better....not fun.....but road to recovery.

BELIEVE and keep doing what you are doing!!

I am now taking Benfotamine in addition to B12 and it is helping. A form of vitamin B-1.

Hang in there.

[MELINE]

That was definately soooo encouraging shayFL!!! It makes me feel better knowing that it is not supposed to go away at once. I was so afraid I was getting hidden gluten. So I'll just be patient and ask my doctor about b12 and Benfotamine or whatever he suggests. thank you!

[veggienft]

Hello

I have problems with my toes and my fingers.I have this awful feeling of tingling or of electricty going through my hands and my feet or sometimes like someone is pinching me with a needle. Doctor said it is peripheral neuropathy. I also lose my balance. At the time, I thought it had to do with glutening. But now I am almost sure I am not getting any hidden gluten, but I still have these feelings and they are intnense. Is it something permanent or am I getting hidden gluten? I've tried to get some answers at google, and I think that the articles say it is permanent and you can only stop it from getting worse with the treatment of the underlying cause. I don't care if my feet keep tingling, I am just wondering if I am getting any hidden gluten. My next visit to the doctor is 12 september...any one with that problem?????

Thank you so much.

Meline

.....may be a cholinesterase shortage. That would mean a sluggish liver. Try going off chlorinated tap water.

Drink only purified water for two to three weeks. See if that helps. If it helps, buy a water purifier, either reverse osmosis or a batch distiller.

..

[darlindeb25]

Everyone is different, everyone will have their own healing time. 2 yrs is an average number, but not necessarily true for all of us. It is true, nerves heal very, very slowly, and often times, while healing they can cause as much or more pain as they do when dying. Nerves are very tempermental.

I was diagnosed with carpal tunnel over 10 yrs ago. Over the years, my hands got worse and worse. I was a seamstress and my fingers got so bad it was difficult for me to even sew a button back on. My hand would go numb while holding a phone, my handwriting is good at first, but within minutes it's sloppy. I have been taking B12 for well over 3 yrs now. Last week, I hand sewed 2 full size pillow covers for my couch! So, yes, I do believe B12 helps, but do not expect over night relief because you will be disappointed then.

My neuropathy is not really better, but I have tremendously slowed the progression. I too have balance problems, but they aren't as bad now as they were 2 yrs ago. I don't mind tingling in my toes, or cell phone vibrations, the little electrical shocks I get in my left leg are do-able...if my B12 keeps the big neuropathy pain at bay, then I am thrilled. I do not take meds for my neuropathy, and I will not take meds unless absolutely necessary.

Being glutened will aggravate your neuropathy, but just because you have neuropathy, does not mean you are getting glutened.

[TrillumHunter]

Mine is gone. But I did have to have B12 injections for about three years. I'm off them now but I still take a sublingual everyday. I agree that you need added support in the way vitamins until you've been gluten-free for awhile. I have some patchy places of reduced sensation on my toes but I can live with that.

Best thing is to stay rigidly gluten-free and get good nutrition as you heal.

[sunnyfla]

Mine is gone. But I did have to have B12 injections for about three years. I'm off them now but I still take a sublingual everyday. I agree that you need added support in the way vitamins until you've been gluten-free for awhile. I have some patchy places of reduced sensation on my toes but I can live with that.

Best thing is to stay rigidly gluten-free and get good nutrition as you heal.

I had peripheral neuropathy also, and was on b-12 injections prior to developing this but before I knew it was gluten causing it all. It was cyanocobalamin and I was getting 1,000mcg 2x a month initially, the reason the doctor put me on this was severe cracking on the sides of my mouth but never did he do any more testing. It was only after I was having more and more issues that I ended up being dx'd.

Eliminating gluten helped a bit with the symptoms but I still had a good bit of numbness. I've switched to sublingual methylcobalamin and unless I accidentally gluten myself it has pretty much gone away. A while back I had done a medline search on B-12 and had found some research Japanese doctors were doing with the methylated B-12 for diabetic neuropathy and that was what prompted me to try it. The difference between the two is the methyl version does not have to be converted in the liver and it is the type that is used by our nerves.

[ang1e0251]

My neuropathy, numbness & tingling has gone away. I had a bad glutening over the summer and my ingrown toenails inflamed and infected again. It had been months since I had trouble with them. Those are now healed. I had one toenail that peaked in the middle till it looked like a claw. It is now a normal rounded shape. I too have found much relief from the B12 reccomended on this forum. Thanks, guys!! My DH is taking it now too and finds it helps his energy level and feeling of well being.

[AliB]

Diabetics get neuropathy, but so do people without diabetes. There has to be some common factor - the factor is highly likely to be some kind of deficiency due to gut damage and malabsorption.

If ever they bothered to check for gut damage in those with neuropathy, whether diabetic or not they would almost certainly find a history of digestive issues.

The important thing is to get the gut working properly then the body can start to absorb nutrients. Meline, why don't you join us on the SCD? Those of us who are following it are finding that things like neuropathy are gradually clearing up as our bodies heal.

Gluten for many is only a small part of the picture - removing it can help but is not always the simple answer. Many gluten-free foods can actually keep the damage going and therefore the health issues too.

Nerve pains, tingling, pins and needles are indicative of deficiencies in several areas - it can be B12, it can also be linked to thyroid malfunction and other things - but follow a diet that helps to get the body working right and have plenty of good nutritious food and raw fruits and veg for enzymes and it does get better - honest!

I had some slight diabetic neuropathy but it is much improved.

[debmidge]

Despite B injections and Sublingual Vit B my husband's neuropathy in legs isn't going away and it's been 5 years gluten free.

[RiceGuy]

For me it also took magnesium along with the B12. It really is amazing what nutrients can do, when you find the ones you need.

MELINE, I know that you are also dealing with candida, and that will be a continuous load on your entire body. The yeast robs you of nutrients, and releases toxic compounds into the bloodstream. I'm sure this is playing a part in the matter.

One additional thing I found out, is that the toxic alkaloids in nightshades effect motor nerves. I had to avoid all nightshades in order resolve much of the pain, numbness, etc.

So I think there are probably several factors involved, and I'm sure you'll be able to sort it all out eventually. Especially with all the help and advice of the members here.

[Kurzemiete]

Hello

I have problems with my toes and my fingers.I have this awful feeling of tingling or of electricty going through my hands and my feet or sometimes like someone is pinching me with a needle. Doctor said it is peripheral neuropathy. I also lose my balance. At the time, I thought it had to do with glutening. But now I am almost sure I am not getting any hidden gluten, but I still have these feelings and they are intnense. Is it something permanent or am I getting hidden gluten? I've tried to get some answers at google, and I think that the articles say it is permanent and you can only stop it from getting worse with the treatment of the underlying cause. I don't care if my feet keep tingling, I am just wondering if I am getting any hidden gluten. My next visit to the doctor is 12 september...any one with that problem?????

Thank you so much.

Meline

Hello Meline. First off thank you for the reply to my question on the other thread, I have yet to comment .

Re your tingling and electicity in your hands and feet, I have this also, I got this about 9 years ago. It appears to be worse when I am in a horizonal position, actually in 'resting' frame of mind (in bed) and strangely enought that is when its aggrevated, more also when I hear noises, I startle very easily and it sets off this chain reaction to my toes and hands. Sometimes I also get a mild 'metal tongue' (something similar but different in my mouth, but it is by far not as frequent)

Unfortunately at this point I am only beginning my search for answers and cannot offer any advice to you Meline But my wishes are with you for answers which lead to healing (mine and everyone else who is here suffering )!

Liya.

[AliB]

I went gluten-free at the end of Jan 08. I then realised I was also Dairy intolerant so dropped that too. After following a gluten-free diet for a few weeks I then further realised that my health issues were down to more than just those two which is when I very fortunately came across the SCD.

I still had issues for a while even with some SCD compliant foods like eggs, for instance but that has gradually receded as my gut has started to properly heal.

What I have done over the last month or so is try and incorporate more raw foods into my diet. Virtually all fruits and veg are allowed on the SCD, but few of us eat enough, or we eat them mostly cooked, which destroys the valuable enzymes that aid digestion and other bodily processes.

I realised that by getting a lot more raw fruit and veg, not only am I supplying those enzymes, but I am also getting a much better and higher source of valuable nutrients, vitamins and minerals, negating the need for supplementation.

I make a large blender full of green smoothie in the morning which is easy and uncomplicated on my digestion, has plenty of fiber, gives me more energy (probably because it is not impacting on, or clogging my digestion like other foods- particularly carbs - draining the energy from the rest of my body), giving me a rapid source of nutrients and keeps me going until lunch.

I also find that because my body is now getting the nutrients it craves I can function better on less food than I used to which also helps my digestion. A lot of the supplements are 'artificially' produced and have little effect on the body - natural ones in fruit and veg are assimilated far easier into the body, and are usually accompanied by elements that support them - elements that neither we nor the scientific community either know little or nothing about or place any importance on.

The nutrients in plants and natural food sources are symbiotic - in general they work in harmony together. Food can be our medicine - if we eat the right food, at the right time and in the right quantity. Just because a food is a food, doesn't mean it is good for us. Even dung is a food - to a dung beetle! There is a lot of stuff out there that looks good and tastes good, but it is of little or no nutritional value to us at all.