Peripheral Neuropathy

[AVR1962]

There are 3 types of nerves: motor, sensory, and autonomic. Motor nerves control muscles and voluntary movement; sensory nerves transmit signals from specilaized receptors in the skin, jointys, and internal organs; autonomic nerves control involuntary functions such as heart rate, blood pressure, sweating, and bowel & baldder.

Motor Symptoms: Weakness in arms or legs, subtle symptoms include heaviness in legs, difficutly getting up from a chair, pulling on a rail when walking upstairs, or catching a toe on the carpet. The arms may fatigue quickly when brushing your hair or carrying groceries, or turning a lock may require force. Muscle atrophy or wasting snd spontaneous muscle twitching are aslo signs of motor nerve damage.

Sensory Symptoms: Inability to feel heat or sharp pokes. Numbness, pins & needles, stinging, prickling, crawling, burning, cold, itching, buzzing, vibrating, aching, tearing, squeezing, stiff, deadened like encased in cement. Socks or sheos may feel too tight, pain can make it hard to walk or sleep.

Autonomic Symptoms: Besides regulated blood flow where it is needed most by controling blood pressure, the autonomic nerves also regulate gastrointestinal motility and bladder emptying. It can also cause sexual dysfuntion and temperature regulation & sweating. Swelling of the ankles, dryness and thinning of the skin, hair loss on the legs, delayed healing of the skin, and ridged or brittle nails.

Will follow up with more as I read. The book is Periopheral Neuropathy by Norman Latov, MD, PhD

[YoloGx]

Looks like a really interesting read. Thanks for sharing.

I am slowly getting better. I don't really want to think about how many of these symptoms I have and have had... Nevertheless I probably should. It explains a few things--like why I shouldn't be hard on myself when its tough getting to sleep or getting up in the morning, getting feint upon rising, or being clumsy, unable to focus at times, being forgetful, unable to think of the right word, getting the "dropsies, " swollen ankles despite walking most every day for an hour, needing to take my shoes off since the feet feel constricted etc.

Bea

[AVR1962]

Yes, very good info in the book. Some of the things I have been experiencing are symptoms I was not associating with neuropathy.

[AVR1962]

Causes for neuropathy vary, ranging from simple vitamin deficiencies to tumors. It used to be that if you had neuropathy your were presumed to have diabetes or be an alcoholic. Alcoholism was often suspected, for lack of another explanation, and a diagnosis of neuropathy carried a stigma. It was not openly discussed in polite society. Today, we know there are many causes, and although diabetes is probably underdiagnosed, we recognize that alcoholism is an uncommon cause, ecpet in certian high risk individuals.

Some of the many causes for nueropathy:

Vitamin deficiencies (B1, B6, B12, E). B12 is the most common. This is because all vitamins except B12 are easily absorbed from the gut. Nitrous oxide (laughing gas), which is commonly used in the dentist's office, can bind and inactivate B12. In people with B12deficiency, inhalation of nitrous oxide can precipitate acute B12 deficiency and a severe neurologic syndrome, resulting in damage to the spinal cord, brain and peripheral nerves.

Malabsorption- can occur in patients with various gastrointestinal diseases, depending on severity.

Celiac Neuropathy- The mechanism of nueropathy in celiac disease is poorly understood. Some patients improve on gluten-free diet, but in others the neuropathy first appears while on a gluten-free diet.

Infections- Viruses, bacteria, parasites and other infectious organisms can directly infect the nerves and cause neuropathy.

Lyme Disease

Thyroid Disease- Neuropathy is common in untreated hypothyroidism.

Drugs- Neuropathy can be caused by drugs that are toxic to the neurons or Schwann cells in the peripheral nerves.

All the above was from the book. There were many other causes for neuropathy than what I have listed here.

[Marilyn R]

Thanks for posting. That is very good info.

[AVR1962]

https://www.celiac.com/articles/22040/1/The-Correlation-Between-Gluten-Intolerance-and-Neurological-Disease/Page1.html

After establishing a gluten-free diet, the patients showed considerable improvement of their neurological symptoms. However, patients that had neurological symptoms lasting longer than 12 months, did not typically show signs of neurological improvement once a gluten-free diet was initiated. The reason for this is thought to be a result of irreversible neural cell damage, such as a loss of Purkinje cells accompanied by prominent T-lymphocyte, as seen in patients with ataxia.

While the findings of these studies indicated that gluten is a major factor associated with neurological disorders, further studies are needed to show conclusive evidence of the direct correlation between the two. Such findings may provide the key to determining if autoimmunity is fundamental in evoking gluten-sensitive neurological impairment.

[AVR1962]

Open Original Shared Link

One of the reasons I wanted to know more about nerve damage, not only for my own benefit, but I could not understand if why B complex was suggested to other patients with neuropathy issues who were not celiac and not suffereing from a vitamin deficiency. I had been told that B complex was ONLY good for solving neuropathy issues if it was related to a deficiency. I currently know someone that has Lyme disease and having neuropathy issues and have been trying to help her out as well. What I have learned in my reading is that prescript drugs that kill the nerve pain are commonly used by docs to treat neuropathy but that of course does not resolve the issue. A diet high in a variety of B vits and/or a B complex ARE the natural way to help neuropathy issues. The link is a more simplified view of how nerve damage occurs and goes into prescripts and the use of vit B....not just for celiacs.

[mushroom]

Darn it! I have had so many of these symptoms, why couldnl't I have the "loss of hair on legs" one??? A forst still grows

[quincy]

Darn it! I have had so many of these symptoms, why couldnl't I have the "loss of hair on legs" one??? A forst still grows

interesting. I posted a topic a few days ago asking if I had MS because I have experienced most of the symptoms for the autonomic system.

I have had bladder issues, reflux, no hair loss on legs but definitely brittle and ridged nails (toes mostly).

I really like my Celiac doctor but I have to admit something that really bothers me: I continue to experience these symptoms and when I ask my doctor

if it could be related, I am told no, because all of my antibody tests are now in the normal ranges.... Now, does that make any sense??? as if 40 years of being undiagnosed with celiac, suddenly all of my problems are gone with no residual or lasting damage in the nervous system etc.??

[mushroom]

I really like my Celiac doctor but I have to admit something that really bothers me: I continue to experience these symptoms and when I ask my doctor

if it could be related, I am told no, because all of my antibody tests are now in the normal ranges.... Now, does that make any sense??? as if 40 years of being undiagnosed with celiac, suddenly all of my problems are gone with no residual or lasting damage in the nervous system etc.??

Repeat after me, five times: "It is so sad that most doctors know so little about celiac symptoms and effects."

[Marilyn R]

I keep coming back to this thread because I find it so interesting. Sorry to those of you who have read this before, but somebody from my home town told me that they saw my mother drunk, staggering downtown. Mom was a devout Christian and never drank alcohol, never smoked, was an RN. The first signs of cc are neuropathy for me, and it was the first symptom that presented when all of this first started happening.

My neuropathy has improved so much on a strictly gluten-free diet. I'll probably never run up or down a flight of steps again, but I told my neurologist I didn't want to come back for a year because I'm doing better. I can ride my bicycle, run etc.

Mom couldn't come to terms with the diet and ended up being wheelchair bound for several years.

My oldest brother visited recently and was asking me about the disease. He listened intently and at the end of our conversation asked, "So your choice is gluten or walking?" He's an accountant, I kind of like how he cut to the chafe.

[Marilyn R]

interesting. I posted a topic a few days ago asking if I had MS because I have experienced most of the symptoms for the autonomic system.

I have had bladder issues, reflux, no hair loss on legs but definitely brittle and ridged nails (toes mostly).

I really like my Celiac doctor but I have to admit something that really bothers me: I continue to experience these symptoms and when I ask my doctor

if it could be related, I am told no, because all of my antibody tests are now in the normal ranges.... Now, does that make any sense??? as if 40 years of being undiagnosed with celiac, suddenly all of my problems are gone with no residual or lasting damage in the nervous system etc.??

Just wnodering if you've had your vitamin D levels checked lately, or any other blood work up. (Mushroom is a whiz at telling you which ones you shoud request, btw.)

[mushroom]

Just wnodering if you've had your vitamin D levels checked lately, or any other blood work up. (Mushroom is a whiz at telling you which ones you shoud request, btw.)

Disclaimer: no expert here. Just learned a few things along the way. One of which that a lot of celiac sufferers, and a lot of their physicians, treat celiac as if it were a faucet - you turn off the faucet and presto!, you are cured Unfortunately, it doesn't work that way. You have years of damage to heal before you are going to be "cured" and some of it has reached a point where it cannot be cured, you just have to live with the residuals and help out where you can. Fortunately, that is not the majority, so be hopeful.

Vitamin D, as Marilyn says, is a biggie because it affects so many functions in the body, not the least of which is bone production, so if your D is low you may well be on your way to osteoporosis. BUT, it can be reversed with supplements, calcium, magnesium and zinc also to help absorb the D. But taking the RDA is not going to do anything for you if you are really low - you need massive doses for quite a while.

Others to check for are anemias, either iron deficiency (check iron/ferritin levels) and pernicious anemia (B12 and folate). Other vitamins that can be affected are A, E and K, and the whole B vitamin complex (it is good always to take a complete B complex anyway). Minerals - calcium, potassium, magnesium, zinc are biggies, and you should have your thyroid function tested too (TSH, free T3 and free T4, as well as antibodies). All that will probably send your HMO (if you have one) into a hissy fit, but if your B12 is low you also need a DEXA scan to check on your bone density Most doctors will not routinely order these unless you push. Do some googling and print out some information for your doc that shows that this is what should be tested to back up your request. My PCP is very good about doing what I ask because she knows she doesn't know much about it (and most of the things I asked to be tested for I was deficient in, so that helped ).

Good luck on your healing journey.

[red island]

Oh I am happy to hear that the neuro stuff sometimes gets worse after going gluten free, I was worried that I was working on yet another immune disease or growing a big ole brain tumor... I think I need to stop obsessing for a while. Thanks for the summaries, they are really helpful.

[AVR1962]

Darn it! I have had so many of these symptoms, why couldnl't I have the "loss of hair on legs" one??? A forst still grows

LOL!!!!

[AVR1962]

Oh I am happy to hear that the neuro stuff sometimes gets worse after going gluten free, I was worried that I was working on yet another immune disease or growing a big ole brain tumor... I think I need to stop obsessing for a while. Thanks for the summaries, they are really helpful.

Several others had posted the same so it was good to see this in writing by somoene in the medical profession.

[MenHen]

Repeat after me, five times: "It is so sad that most doctors know so little about celiac symptoms and effects."

I am SO curious of finding out how much my doctor friend knows about celiac and gluten sensitivity. She is about a year older than me, but we went to grad school for the first year together. She then was accepted to medical school but finished both degrees. I highly respect her knowledge and opinions so far. Unfortunely, she moved 3 hours away from me about the time I considered gluten free. I've told her through email I am gluten-free and how much it has helped me. I still don't know her understanding, compasion or knowledge of this. She just finished her residency in July so I think it would be great to know what her understanding is of this. I will find out soon. I hope that it is encouraging, rather than not. I will share either way just as perspective. Plus maybe she knows the emphasis or lack of emphasis put on Celiac during her timing of school.

[Marilyn R]

Oh I am happy to hear that the neuro stuff sometimes gets worse after going gluten free, I was worried that I was working on yet another immune disease or growing a big ole brain tumor... I think I need to stop obsessing for a while. Thanks for the summaries, they are really helpful.

You could possibly have some other food intolerances too. For instance Quinoa and certified gluten-free Oats don't agree with me, and dairy used to kill me. (I can tolerate dairy now though.)

And Mushroom, thanks for listing those blood draws. I still think you're a whiz about it.

[YoloGx]

You could possibly have some other food intolerances too. For instance Quinoa and certified gluten-free Oats don't agree with me, and dairy used to kill me. (I can tolerate dairy now though.)

I agree, often other intolerances show up after you have gone gluten-free for a while. For me I finally discovered I have to be careful about salicylates. They really mess with my brain. Now amazingly my memory is way improving as well as finding the right word to say rather than spacing it out. I also seem to have considerably less fainting, am more dexterous etc. But it has taken a while.

I am also discovering that the liver detox and gall bladder stimulating herbs are helping me to expand my diet and be more mentally strong and clear. Both the herbs and Hylands homeopathic Leg Cramps PM formula are also helping me to sleep better--along with MSM and frequent epsom salt baths (these last two also help with sulpher absorption which also helps me expand my diet given the salicylic acid sensitivity).

Even though my situation may seem case specific, I have observed other people with neuro/arthritis/fibromyalgia and eczema/psoriasis which makes me wonder if there is some kind of at least frequent connection with skin/liver/arthritis and neuro problems--especially with severe gluten intolerance. I think part of the secret connection might be how the liver and gallbladder affect digestion in our already impaired intestines--as well as all the detoxification that the liver, lymphatic system, skin and kidneys have to do due to leaky gut from damaged villi letting undigested proteins go into the gut. This then creates a general overloaded toxic environment which affects the brain and the rest of the nervous and lymphatic systems, not to mention the nerves themselves not getting many of the nutrients they need due to the damaged villi.

Yes, sure, everything is connected to everything else in our bodies--what else is new? However it is exciting to me that by taking these herbs like dandelion root, marshmallow root, oregon grape root or barberry (I alternate these two) I am able to overcome an otherwise downward cascade.

[red island]

Yes I am finding that I dont do well after eating things like soy and whole grain rice, am trying to avoid soy but its in almost as many things as gluten. So mostly am trying to eat unprocessed foods for now and I started acupuncture again as I found in the past that it really helped my IBS. It definitely has smoothed out the wildly fluctuating hormones and has soothed my digestive system.

Right now I can deal with the symptoms I already have - the neuro symptoms have not got any worse, what scares me now is developing more food intolerances.

[quincy]

Just wnodering if you've had your vitamin D levels checked lately, or any other blood work up. (Mushroom is a whiz at telling you which ones you shoud request, btw.)

yes, I am waiting for my lab results now. My last vitamin D reading was 25,which was down from the previous reading of 52. I am taking vit D2 50,000 IU's a week for now. My recent dexa scan showed slight improvement but I have Osteopenia

[AVR1962]

yes, I am waiting for my lab results now. My last vitamin D reading was 25,which was down from the previous reading of 52. I am taking vit D2 50,000 IU's a week for now. My recent dexa scan showed slight improvement but I have Osteopenia

I also have osteopenia, was taking a great deal of vitD but have recently been able to decrease. Are you getting a low acidic diet to regain growth in the bones? Read about it if you have not heard of it. Also, if your doc is recommending various prscripts to protect the bones be very wary and read on them as well. What happens with some, perhaps not I, is they will put a protective barrier around the bone to preserve what is there but it will not allow for new nutrients to penetrate the bone. When I was tolod this I refused any meds and I have been on a low acidic diet now for months in hopes of regaining.

[AVR1962]

I am also discovering that the liver detox and gall bladder stimulating herbs are helping me to expand my diet and be more mentally strong and clear. Both the herbs and Hylands homeopathic Leg Cramps PM formula are also helping me to sleep better--along with MSM and frequent epsom salt baths (these last two also help with sulpher absorption which also helps me expand my diet given the salicylic acid sensitivity).

Even though my situation may seem case specific, I have observed other people with neuro/arthritis/fibromyalgia and eczema/psoriasis which makes me wonder if there is some kind of at least frequent connection with skin/liver/arthritis and neuro problems--especially with severe gluten intolerance. I think part of the secret connection might be how the liver and gallbladder affect digestion in our already impaired intestines--as well as all the detoxification that the liver, lymphatic system, skin and kidneys have to do due to leaky gut from damaged villi letting undigested proteins go into the gut. This then creates a general overloaded toxic environment which affects the brain and the rest of the nervous and lymphatic systems, not to mention the nerves themselves not getting many of the nutrients they need due to the damaged villi.

Really be carefully with the herbal detoxes. Sounds like you have found something that works well but all too many are overloaded with herbs that actually be harmful in large doses. These are not FDA approved and therefore there is no way to check the product properly. I did a liver detox a year ago and had a terrible react to it, ended up in ER with my heart going nuts. Doc told me the herbs in these products can be as bad for you as drinking 4 energy drinks filled with caffeine and cause the same problems with blood pressure and heart rate.

And yes, you are dead on about neuropathy effecting the various systems. Even though we have major groups of nerves there many many labels (for lack of a better word) for the various neuropathy. There are so many things that can cause problems with our nerves. When you start reading it's almost overwhelming. Everything that happens in our body is connected to a nerve whether that is a voluntary or involuntary movement or sensory related.

[CR5442]

I agree, often other intolerances show up after you have gone gluten-free for a while. For me I finally discovered I have to be careful about salicylates. They really mess with my brain. Now amazingly my memory is way improving as well as finding the right word to say rather than spacing it out. I also seem to have considerably less fainting, am more dexterous etc. But it has taken a while.

I am also discovering that the liver detox and gall bladder stimulating herbs are helping me to expand my diet and be more mentally strong and clear. Both the herbs and Hylands homeopathic Leg Cramps PM formula are also helping me to sleep better--along with MSM and frequent epsom salt baths (these last two also help with sulpher absorption which also helps me expand my diet given the salicylic acid sensitivity).

Even though my situation may seem case specific, I have observed other people with neuro/arthritis/fibromyalgia and eczema/psoriasis which makes me wonder if there is some kind of at least frequent connection with skin/liver/arthritis and neuro problems--especially with severe gluten intolerance. I think part of the secret connection might be how the liver and gallbladder affect digestion in our already impaired intestines--as well as all the detoxification that the liver, lymphatic system, skin and kidneys have to do due to leaky gut from damaged villi letting undigested proteins go into the gut. This then creates a general overloaded toxic environment which affects the brain and the rest of the nervous and lymphatic systems, not to mention the nerves themselves not getting many of the nutrients they need due to the damaged villi.

Yes, sure, everything is connected to everything else in our bodies--what else is new? However it is exciting to me that by taking these herbs like dandelion root, marshmallow root, oregon grape root or barberry (I alternate these two) and now some yellow dock I am able to overcome an otherwise downward cascade.

This is awesome Bea that you are getting such good results from the herbs. I was doing well until I got to the end of my cycle this month, then had three days of insane itching - it was a big full moon yesterday too. My liver is overloaded again... but I suppose three out of thirty isn't all that bad! We have had some bugs flying around too so I suspect I'm fighting those off too. I told you I was on Oregon Grape Root too? I have another 6 herbs in my mix. In a way the herbal approach is a very gentle and gradual detox, not radical like the liver flushes that some people do. Glad you are also able to add some things back in to your diet... same here!

[AVR1962]

This is awesome Bea that you are getting such good results from the herbs. I was doing well until I got to the end of my cycle this month, then had three days of insane itching - it was a big full moon yesterday too. My liver is overloaded again... but I suppose three out of thirty isn't all that bad! We have had some bugs flying around too so I suspect I'm fighting those off too. I told you I was on Oregon Grape Root too? I have another 6 herbs in my mix. In a way the herbal approach is a very gentle and gradual detox, not radical like the liver flushes that some people do. Glad you are also able to add some things back in to your diet... same here!

Caroline and Bea, please do share what herbs you are using and how they are helping, I would be inteeted in the information.

The product (Ellimis) that I used was a 3-staged, 3 month program that was supposed to flush (detox) the liver. It definately detoxed my liver but it tore up my stomach and cuased stones in my kidneys. I have been extremely careful with all herbs since.