I don't think I see the link for The Gluten File yet...so here it is.

Also direct links to these pages:

The Neurological Manifestations of Gluten Sensitivity

Peripheral Neuropathy

Diagnostic Testing

Gluten Sensitivity vs. Celiac Disease

At Risk Population for Gluten Sensitivity/Celiac Disease


oops...I guess I didn't advance to page 2 when reading this thread...I didn't see it...thanks Billye!

Good for you, Rose...for putting your info on Google!

Here is a copy of a list I made in the past:

I have a new link HERE about medications as well:
http://neurotalk.psychcentral.com/thread161040.html
1) OTC--vitamins/nutrient interventions
2) Drugs used:

http://telemedicine.org/stamford.htm At the left, table of contents, click on 'Anatomy of the Skin'. It is dense, rich and chock full of how nerves relate to other body functions...all of which dovetail into neuropathies completely.

Personal experience on my part is that it well, EXPLAINED A LOT! - j

Lots of great info on their site, but please do not rely on them for B12 information. It's still not right. In spite of promise after promise over about three years to address it, there is still misinformation there.

rose

Thank you (you know who you are) for pushing me.

The very basic information is almost there, and I am adding frequently:
http://roseannster.googlepages.com/

And in the meantime, Cara's is excellent. In fact, the way she approaches the subject is different from the way I do, so even though the information is the same it is very important to look at both when concerned about the B12 issue.

rose

This is an exceptionally informative site. They've been adding research (including government research that has been paid for with tax dollars and then hidden when it didn't come to the conclusion they hoped for).

http://www.druglibrary.org/crl/default.htm

I know the individual who has the umbrella site, and he is brilliant and honorable.

rose

These recommendations will help heal damage and reduce PN symptoms from many causes, such as diabetes, drug or other toxin damage, viral or bacterial attack, nerve entrapment, surgical damage, poor blood circulation, and hereditary or idiopathic peripheral neuropathy. What follows has been learned from years of research. All recommendations have some empirical and/or scientific basis. I urge you to check on each recommendation before trying it. A good way to check is to double click on www.google.com and enter the topic. For example entering “vitamin e peripheral neuropathy” (without the quotes) will generate a list of sources for research results for vitamin E and peripheral neuropathy.

We are each different from each other. Talk with your health care professional before starting any diet, supplement, or exercise program. For most of us, all of these recommendations are safe, but individuals may have conditions or be taking medications incompatible with some recommendations. An example is SAMe which should not be taken by people with bipolar disorder or taking certain mood changing drugs.

This is a special note about skeptical physicians. Your doctor may say something like, “Save your money and your energy. Nothing will help heal your PN. All you’ll do is create some very expensive urine.” In answer to that, everything recommended here has at least some empirical and/or scientific backing for being effective for PN (as opposed to anecdotal or conjectural backing).

Everything recommended here is safe. As far as I know at this point, no drugs are effective for promoting healing for hereditary or idiopathic PN. No drugs provide more than partial pain relief. All drugs have side effects. Side effects are cumulative the longer a drug is taken. Side effects for combinations of drugs are additive or multiply each other. A basic principle of healing is to first do no harm. Nothing recommended here will do harm as far as I know unless special circumstances exist.

So, talk with your doctor first, take his or her specific recommendations if you have a special condition that will be harmed by anything here. But this program gives you the possibility of safely and powerfully dealing with your PN, reducing symptoms, and even healing. If your doctor only recommends drugs for partial symptom relief without a complete diagnostic workup or any possibility of healing, I think the choice is clear. I had two neurologists offer me Elevil or Neurontin at the first appointment, with minimal testing. Neither is 100% safe, and neither is very effective. You can always try drugs after giving this program a chance. However, because of building drug tolerance, it is difficult to stop drugs once you’ve used them for an extended period for chronic pain.

A final caveat is that this does not take the place of medical treatment. Some of us have conditions that require medical care. Examples include diabetes, infectious disease, amyloidosis, etc. Even in these cases, what follows will be helpful.


This program to reduce pain and help heal your PN encompasses diet, supplements, exercise, dealing with emotional factors, and getting the help you need. In our lives, there is a spread effect, where optimizing one thing helps other areas in your life. Good builds on good and bad on bad. If you eat right, you will feel better and will be more willing to try supplements. As you heal you’ll be on a more emotional even keel. That will help you get the family and other support you need. You will be more apt to start an exercise program.

Generally, most research was done using only one factor such as a particular supplement, a diet change, exercise, etc. In the few cases where more than one factor was tested at the same time, a synergistic effect was found where the healing effect was greater than the effects of each factor alone. If you do the program, do the whole program for maximum benefit.

Diet

A PN diet provides the proper amounts and balance of essential fatty acids and is rich in protein, vitamins, minerals, and nerve healing phytochemicals. That is similar to the Omega diet as described in “The Omega Diet: The Lifesaving Nutritional Program Based on the Diet of the Island of Crete” by Dr. Artemis P. Simopoulos and Jo Robinson (Amazon page is http://www.amazon.com/exec/obidos/A...8941114/sr=8-2/ ref=sr_8_2/104-0955084-5711960 ). The book is an easy read and is full of good recipes and daily menus. I easily converted to the omega diet. My blood pressure came down 25 points in a year, and my PN is much better. I think the omega diet is one of the main reasons. A similar PN healthy diet is the Mediterranean Diet ( http://www.americanheart.org/presen...identifier=4644 , http://www.amazon.com/exec/obidos/A...0914342-4696631 ).

The bulk of your calories should come from vegetables, fruit, healthy protein sources, and whole grains. Eat easy to digest protein daily, such as one or two eggs (one yoke a day is OK), fish, tofu, beans. You don’t need meat for every meal. A little, like 4 oz. of lean meat once a day won’t hurt.

Dairy should be in small quantities if at all, like a little yogurt or cheese. Milk allergies are very common and can lead to or add to chronic fatigue syndrome, fibromyalgia, chronic sinusitis, irritated bowel syndrome, acid reflux, and other conditions with an autoimmune component. Most adults cannot digest milk sugar. On the other hand, the bacteria in live culture yogurt are good for your digestion and general healthy, so eat yogurt if you can handle it.

Avoid concentrated refined sugars or pure fructose. They are hard on your liver and pancreas, meaning they are hard on your nerves. A teaspoon of white sugar or honey in a cup of coffee or tea with a meal won’t hurt you. A 12 oz. Coke or Pepsi has 9-12 teaspoons of sugar! A Frappacino has about 20 teaspoons of sugar! That will hurt you. Apple juice is almost as bad. If you must have a sweet drink, mix apple juice ½ with water and ice it. That way, you’ll only get 5 teaspoons of sugar all at once. The best drink is plain water. If you must have sweets, try two Hershey’s Kisses a day. We all need sweet kisses in our lives!

Avoid anything deep fried because the fat oxidizes and becomes filled with all kinds of nasty chemicals. The same is true with hydrogenated or partially hydrogenated vegetable oils. Read labels for this. The only way your body can handle hydrogenated oils is to turn them into cholesterol and free radicals. The SAD (standard American diet) is full of hydrogenated oil. It is in margarine (butter is better for you, not good but better), packaged pastry, chips, some cereals, candies, and many breads. This was the hardest for me to cut out, but I don’t miss that stuff at all now. This is thoroughly discussed in “The Omega Diet.” by Dr. Simopoulos. If you don’t believe her, just look up “partially hydrogenated oil health” in www.google.com . It will make a believer out of you. Thankfully, labeling is improving and more products made with healthier oils are available every day.

The right oils are essential for healing. You should only use olive and canola oil at home. Both help your nerves and your blood vessels. Canola oil is 50% omega 3 fatty acids which will help heal your nerves. Olive oil has cancer fighting components and helps clean your blood vessels. You should have at least 2 tablespoons of each oil daily. You can also get healthy oils with a small handful of nuts a day or some avocado on a sandwich instead of butter or mayo.

The Omega and Mediterranean Diets err on the side of being too starchy for us. Many of us PNers have insulin resistance. Starch acts just like sugar in this regard. An 8 oz. baked potato with or without skin yields more blood glucose than 8 oz. of pure sucrose, and it spikes just as quickly. The same holds true for any white flour product. Avoid starch. What starch you do have should be whole grain with other foods to slow down the digestion of the starch and absorption of the glucose and to supply healthy grain bran nutrients.

It sounds like a lot of don’ts and a lot of depriving yourself, but that’s not the case. I just started substituting one thing a week. It was easy, and the food is delicious. For example, for a typical dinner we'd have grilled salmon, brown rice or a baked yam, , zucchini and chopped onions sautéed in olive oil with herbs, a tossed salad with tomatoes and a dressing of 50/50 of canola and olive oil, lemon juice, pepper, garlic, and feta cheese. For desert, we’ll have some fresh fruit. We drink water or unsweetened tea most meals. Almost every meal at home is delicious unless I mess up in the preparation.

Three other diets perfect for PN are Syndrome X (http://www.amazon.com/exec/obidos/t...=glance&s=books ) , the Zone Diet (http://www.amazon.com/exec/obidos/A...0914342-4696631 , http://www.drsears.com/drsearspages/ ), and the South Beach Diet (http://www.amazon.com/exec/obidos/A...0914342-4696631 , http://www.southbeachdiet.com/landi...0D-D9B4A75063DB ).

These diets are similar to the Omega and Mediterranean diets. They stress controlling insulin resistance and glucose levels. They are more highly structured with menus, recipes, web pages, and many books. If you like structure, any of these three will do for you. If you are on a limited budget or are frugal, all of these are available in most libraries. The new USDA Food pyramid is similar to these recommendations (http://www.mypyramid.gov/ ).

This is the end of part 1. See part 2 below for vitamins, minerals, supplements, emotional factors, lifestyle, and other delightful goodies.

Dietary Supplements and Herbs - Updated February, 2006

As we age we do not digest and absorb nutrients as efficiently as when we were younger. Injury and disease vastly increase our nutritional requirements. Hence the need to supplement our diet with concentrated nutrients.

These supplements have been shown to help nerve function and healing. Much of the research has been done with diabetics and with rats. Generally, what helps diabetic neuropathy helps nerve function in general, and what helps rat nerves helps human nerves. A trend in research results seems to be that what helps depression and memory also helps neuropathy. Beside double blind studies, all of the suggested supplements are supported by clinical experience.

For price, freshness, and quality, I buy most of the supplements below on the internet.

Take supplements at the start of meals to protect the esophagus, except where the bottle recommends taking without food.

Name
Dose Per
Rationale / Comments
------------------
Vit B12
1,000 - 6,000 mcg day
Boosts nerve function. Is required for and dramatically speeds nerve healing. Compensates for possible deficiency. Use sublingual methylcobalamin if available, or 1,000 mcg of cyanocobalamin if not. Take IN ADDITION TO the B-complex. Up to 36,000 mcg/day injected are prescribed in Japan for PN.
------------------
B-complex
B-50 1/day
Needed for energy, nerve function, nerve healing. A B-50 formulation is about twice as strong as a regular B-complex. Two B-50s or one B-100 is at the upper safety limit. Take with breakfast so it help your body utilize your food all day.
------------------
Folate or folic acid
Up to 1200 mcg. 1/day
An important component in nerve function, shown to be deficient in many cases of neuropathy. Helps fight depression and bipolar disorder. Check the folate level in your B-50, and supplement with enough to bring your folate intake to 800 - 1200 mcg/day. Men with neuropathy need more than women. If it doesn’t help within about six weeks, the amount in your B-50 should be sufficient.
------------------
Vit C
250 mg./day. The latest research is that this is all we can use. Not needed if you eat a good diet since almost all fruit and veggies have vitamin C. Antioxidant, heals nerves.
------------------
Vit E mixed tocopherals.
400 iu /day
Antioxidant, heals nerves. More than 400 iu of cheap sythesized l-alpha-tecopheral can cause heart problems. Formulations with plenty of gamma-tocopherals and are heart and nerve healthy. Is a blood thinner. Ask your doctor if you take prescription blood thinners.
------------------
Acetyl-L-Carnatine
500 mg. 2/day
Heals nerves, reduces pain, improves memory, elevates mood and increases energy. Works with Alpha lipoic acid. 3,000 mg./day heals nerves and reduces pain over a year's use in several studies. That would be very costly, but worthwhile if you can afford it.
------------------
Alpha Lipoic Acid
800 mg. day
Antioxident. 800 mg./day is prescribed in Europe for PN. Help all tissue repair and nerve function. The only antioxidant that gets into neurons because it is both fat and water soluble. Works with the Acetyl-L-Carnatine
------------------
SAMe
400 - 1200 mg 1/day on an empty stomach
Methyl donor. Potent antioxidant. Help vitamins and enzyme systems work. Fights depression, aids sleep, anti-arthritic. Helps liver detoxification. Ask your doctor if you have bipolar disorder because it can increase manic phase symptoms. Expensive, so start with 1200 mg/day, then taper to 400 or 800 mg. after two weeks.
------------------
Calcium/Magnesium
500 mg. Magnesium 2/day
Nerve and muscle function, bone strength. Magnesium helps stop twitches, cramps, and fascilations, reduces pain, lowers blood pressure, and prevents heart disease. Take a formulation of easily absorbed acid salts or chelates. Potassium, calcium, and magnesium are all required for muscle and nerve function. Potassium is in most fruit and vegetables. Too much Ca/Mg can cause kidney stones. The proper ration is two parts of elemental calcium to one of magnesium. A caution: magnesium citrate is a potent laxative. If you start supplementing with magnesium and get the runs, try another formulation or cut down the amount.
------------------
Fish Oil
1000 mg 2-3/day
Antioxidant. Promote joint health, circulatory system health. Anti-inflammatory, anti-arthritic. Omega 3 fatty acids. Specific for neuropathy. Lower blood pressure. Moisturizes skin and makes hair shiny. Is a blood thinner. Ask your doctor if you take prescription blood thinners.
------------------
Flax seed
2 tbsp. day
Omega 3 fatty acids. Helps your digestion, blood circulation, general nerve and muscle function. Flax seed has lignins which provides cancer protection.
------------------
Milk thistle
200 mg-70% 3/day
Stimulate and promote liver detoxification. Use only if needed: if the liver is sore or if you were exposed to toxins or drugs.
------------------
PB-8 or other probiotic formula.
1 or 2/day
Probiotics-ensure good amount and healthy balance of intestinal bacteria. Healthy intestinal bacteria produce many nerve essential compounds. Live culture yogurt is a probiotic that has the same beneficial effect, if you can handle the small amount of milk sugar in it.
------------------
Coenzyme Q-10
50 mg, 2/day. Necessary for muscle and nerve function. Compensate for depletion caused by some drugs such as statins.
------------------
DHEA
50 mg. in morning on empty stomach
Promotes healing, energy, libido. Most people over 50 need to supplement with DHEA. Recommended by Life Extension Foundation for peripheral neuropathy.


Exercise and massage

Exercise is critical. Without exercise you will not heal and your health and nerves will deteriorate. Exercise stimulates the heart, lubricates the joints, breaks adhesions in the tissues, stimulates the growth of capillaries, stimulates the nervous system, stimulates the glands, and promotes healing. Medical science has determined that movement heals, even immediately post operative. Do what you enjoy and do what you can every day. If your balance is bad, walk if you can. Your balance will get better.

Decide that you are not going to be decrepit anymore, and do something about it.

Exercise should be pain free except for neuropathic pain which sends false signals that can be ignored.

Massage offers many of the benefits of exercise. It improves circulation, stimulates and helps heal the nerves and muscles, and helps maintain an optimal hormonal balance. Electrical stimulation is a type of massage that has show powerful pain relieving and healing effects clinically and in the laboratory with animals. I’ve had great results with “The Rebuilder” ( www.rebuildermedical.com ), but many of the lab studies were done with TENS (transdermal electrical nerve stimulation) units (http://www.google.com/search?hl=en&l...hy&btnG=Search ). Whirlpools with cool water are soothing, as are gentle self massage with gentle cooling crèmes. I make my own using ¾ Blu Emu crème and ¼ Ben Gay.

Stretching is also important to open the joints and prevent the onset or progression of osteoarthritis. I did yoga for years and recommend it with the right teacher. I’m now doing the program in “3 Minutes to a Pain Free Life” http://www.amazon.com/gp/product/074...lance&n=283155 ) plus some daily yoga for a 20 minute morning stretch routine. Stretching does not take the place of exercise, but it is equally critical as we age and deal with chronic pain.

Emotional Factors

The biggest obstacles to effectively dealing with your PN are resignation and cynicism in you and your physicians. Hope and resolution to make the most of your situation will empower you and make you strong, happy, healthier, and give you control of your life.

Fear, anger, resentment, and other strong emotions make our symptoms much worse for days or longer. With the PN constantly there, it's easy, but harmful to feel sorry for ourselves and focus on the negative. Anger or fear cause the flight-or-fight syndrome resulting in vasoconstriction and exhaustion of ACTH and other healing hormones. Blood pressure goes up. Homosystine levels go up and start constricting our blood vessels and hurting our nerves. We sleep poorly and eat poorly. We are snappish and whining to others who we need for love and support. Our doctor's don't want to see us. We have a tight, defensive attitude toward the world and don't have the hope or energy to do what we need to do to better our lives.

When we focus on hope and healing we make things better. Our blood circulation is optimized and our hormone balance fosters healing. Blood pressure goes down, we sleep well, eat well, and gather love and support. Our doctors try harder for us. We are curious and participate in finding and implementing our own cure. We naturally do things that heal us and make us feel better.


Getting the Help You Need

We cannot do it alone. We need our doctors, our families, each other. Mobilizing the support we need is addressed above in the emotional factors section. If there is a support group near you, join it. Stay active in this forum. Let your family and caregivers know how much you love them and appreciate what they do for you. If you don’t feel love and appreciation for your doctor, keep looking until you find one who is worthy.

Part of the help we need is to learn from others. This forum is a good starting place. The expertise that many PN Forum members have developed is amazing, far more and far deeper than my understanding. I rely on them, and on you. People thrive on your taking their ideas and knowledge and helping yourself with them, so don’t be a stranger.

Educate your family. They would rather hear what you learned than what hurts for the umpteenth time. Share your knowledge, and they will help you put it into action.


Conclusion

These lifestyle changes and supplements can only help, but be patient. If you change your diet and take the supplements, you will start noticing improvement within a month and continue to improve...not necessarily a cure, but you’ll feel better and hurt a lot less. I’ve been thrown a few time by setbacks and regressions, but they have been temporary and I’ve been in less pain and have better balance, feeling, and strength from one year to the next. You can too.

There is much cause for optimism. You are a miracle of creation. Your body has its full complement of DNA that evolved over billions of years and makes us the most successful large animal in the history of this planet. That DNA represents all the knowledge your body needs to be healthy and vibrant. If you are religious or spiritual, you might consider that DNA to be God's gift to you, and God's way of insuring your health. You have been healthy for most of your life and there is no logical reason you cannot be healthy again. Every molecule in your body will be replaced within a year, so it isn't like you are an unchanging rock. In the next year, the new you will be either sicker or healthier...nothing is cast in stone.

Your worst enemies are cynicism, despair, and resignation. They stop you from doing healing things and getting the help you need and make happiness and fulfillment impossible. You are on the right track and will prevail if you continue learning and trying different things. If you set up the right conditions by such things as eating right, taking supplements you may need, avoiding toxins such as insecticides or some drugs, and cultivating love and tranquility, your amazing body and spirit will naturally heal. Your hope, optimism and energy will guide you to the people you need to help you and the knowledge you need to heal.

I asked our members here if they had any tips that may help me sleep, here are the the results -

Melatonin - You can buy it over the counter in the USA.
Magnesium - It loosens muscle tension.
Advil PM
Benadryl (diphenhydramine) OTC antihistamine
hops are effective and safe, they are related to the cannabis plant.
Restavit sleeping tablets - doctors script not needed.
Valerium - available at shops that sell suplements.
I found that the combination of Valerium and Magnesium really helped me get a good nights sleep.

*** Just to play on the safe side, i would ask my doc if any of the above is ok to take with any medications you are currently taken ***
.................................................. .................................................. .................................................. .
also from Rfinney

Recognize that the sleep system tends to right itself after a few nights of insomnia, if you do not adjust your schedule.Set a regular bedtime – and keep it. Your body needs reliability.
Less is more. Keeping your wake-up time constant but going to bed one hour later will help 25% of insomniacs within one to two weeks. Prepare to feel sleepy at times and avoid driving then. After two weeks, add back the time in half-hour increments.
Look on tow or three nights of insomnia as a gift – time to get done all you have to get done. Insomnia may be functional, a signal that you need to attend to whatever woke you up.
Put sleep in the background of your life. Don’t monitor it, don’t evaluate it. “Put it in an envelope and don’t open it for two weeks.”
If you’re an adolescent or student who has difficulty getting up and functioning in the morning, your insomnia may be a sleep-phase insomnia. Maintain your wake time and immediately apply bright light for at least 15 minutes to reset your clock. Progressively move your sleep time earlier and follow wake-up with a strong pulse of light.
Another way to deal with sleep-phase problems: reset your clock by taking melatonin four hours before bedtime. Again, move up your bedtime a little bit each day.
If you are an older adult troubled by early morning awakening, you may need to reset biological rhythms and phase-delay bedtime by going to sleep one hour later: Do nothing else to correct your sleep problem.
Get more exercise – physical and mental. It primes the sleep homeostat. Sex, among, other things, is a great exercise.
Jack up your body temperature with a warm bath before bed. Exaggerating the normal drop in body temperature that accompanies lying down helps sleep.
Learn simple meditation and practice it before bedtime; it cuts down nervous system arousal.
Keep your bedroom dark, especially as you get older. Even small amounts of light and noise can disturb sleep as you age.
If you awaken in the middle of the night, use the time for creative problem-solving. The “bleeding” of unconsciousness into wakefulness makes thought less rational and freer at this time.
You can take the sting out of a bad night with the judicious use modafinil (Provigil), a stimulant developed to help narcoleptics stay awake during the day. Taking it after a sleepless night helps ease anxiety about insomnia and primes the sleep homeostat.

DON’T’S
Don’t fight insomnia. The homeostat makes sleep a self-reparative system – if you stay out of its way.
Don’t worry about the consequences of not sleeping. Worrying about insomnia can create insomnia.
Don’t overheat your environment. Sleep loves cold. Keep your bedroom cold but load up on blankets.
Don’t sleep with your pets. Animal dander can create allergies that manifest only at night, and the movement of any pet on your bed can wake you up.
Do not sleep late or nap to make up for a bad night. It de-primes the sleep homeostat and reduces the need for sleep the next night, setting the stage for recurrent insomnia.
For the same reason, don’t make up for an acute bout of insomnia by going to bed early.
Do not try to sleep by drinking alcohol. Yes, it’s a great relaxant – but it is metabolized so quickly it creates rebound insomnia; it’s so fast acting you’ll be up in four short hours.
Don’t stay in bed waiting for sleep. It’s not true that the more time you spend in bed , the more sleep you’ll get.
Don’t catastrophize. While you are taking steps to repair your sleep system, abandon the notion that you can’t function on less sleep; sleeping less as therapy wont’ feel good but it will re-prime the sleep homeostat.
Be careful with caffeine: Limit yourself to one cup of coffee in the morning. At age 18, caffeine has a half-life of 4.5 hours, which increases with age. Gradually eliminate caffeine altogether if you have continued trouble sleeping.

If anyone has anything else that have shown good results are very welcome to add to this.