Peripheral Neuropathy

[tallfran]

I have had peripheral neuropathy for about ten years now. I'm female, 61, not diabetic, not officially celiac yet; still waiting to see the GI doc, so am not gluten-free yet.

My neuropathy is burning and tingling in my legs and feet, and tingling and loss of some sensation in my upper extremities. The docter put me on Cymbalta for the neuropathy, and at first it was wonderful. I could hardly walk because of the pain in my feet.

However, I don't like the Cymbalta side-effects. Have you taken anything else that helped? I know there are several newer meds for PN out there now. My current GP just recently started me on Requip for Restless Leg Syndrome, and the lower doses help the restless leg stuff, but does nothing for the burning and tingling.

I hope that it will improve when I go gluten-free, but from what I read, at my age and length of time of symptoms, any improvement will be very slow and minor.

Thanks!

Fran

[ravenwoodglass]

I use a gluten free diet and a sublingual B12. The sublingual is important. I had PN for many many years along with other nerve damage. Most of the problems have gone into remission since my celiac diagnosis but I got considerable relief from the numbness, tingling and burning before diagnosis with sublingual (dissolves under the tongue) B12 supplements.

[ravenwoodglass]

I hope that it will improve when I go gluten-free, but from what I read, at my age and length of time of symptoms, any improvement will be very slow and minor.

Thanks!

Fran

Don't assume that. I was dependant on canes and no reflexes and nerve related incontinence by the time I was finally diagnosed. I am one of the many lucky ones who don't show up in blood work. I was in incrediblly bad shape. The recovery from the pain and tingling was actually pretty quick on the diet and in the last 5 years I have progressed to being able to do pretty much anything with my body I need to. I can even dance again without falling over. Nerves can heal, I can't say how quickly or how completely but you will improve greatly once on the diet if gluten is causing the problem.

[jerseyangel]

My PN went away, for the most part, after I went gluten-free. It took about 4 months or so. I had numbness and tingling in my left arm and both legs, a burning sensation on the bottoms of both feet and in my mouth, facial numbness and an altered feeling in my left arm.

I still sometimes get the facial numbness when tired or glutened--mostly on the left side.

I never took anything for it except B12.

I was sick for 20 years before being diagnosed, and I was very ill at the time of diagnosis--so your recovery from the PN may not take as long as you think. My GI symptoms and anxiety took a lot longer--2 years.

[alamaz]

i've been following a gluten-free, casein free, soy free diet since March and my PN is just now noticably gone. I've been taking magnesium and sublingual B12 in addition to a multi, folic acid and B6. I also had restless leg syndrome and found the magnesium to be the most help with that. Have you considered seeing a knowledgable nutritionist? of course, make sure you find one who knows about celiac and the gluten-free diet but i think it would be beneficial to you to get on a supplement program to help you recover faster.

[darlindeb25]

When I went gluten free, my neuropathy progression slowed, but it did not improve. That was 7 yrs ago, my neuropathy has slowly progressed, mostly full body small fiber neuropathy. I have peripheral neuropathy in both hands and wrists. The only medication I am on for now is 100mg Topamax and if it doesn't improve things by January, then my neuro wants to try something else. I have a very high threashold for pain, my biggest complain is headaches. I have had headaches my entire life and they are worse now. He feels my pain keeps me at a level of sleep that prevents me from getting the proper sleep and that is causing the headaches--I don't know.

I too take a sublingual B12, 3000mcg daily. I have been taking this amount for almost 2 years and was taking 1200mcg for over a year before that. I truly think B12 is very important for most celiac's. I also take a good multiple vitamin--NatureMade Woman +50.

[MyMississippi]

I am 56 and have had PN symptoms for about 6 or 7 years now, maybe longer. Numbness and tingling is much improved after going gluten free in Sept. 2006. I believe nerves can heal significantly eventually.

[ravenwoodglass]

When I went gluten free, my neuropathy progression slowed, but it did not improve. That was 7 yrs ago, my neuropathy has slowly progressed, mostly full body small fiber neuropathy. I have peripheral neuropathy in both hands and wrists. The only medication I am on for now is 100mg Topamax and if it doesn't improve things by January, then my neuro wants to try something else. I have a very high threashold for pain, my biggest complain is headaches. I have had headaches my entire life and they are worse now. He feels my pain keeps me at a level of sleep that prevents me from getting the proper sleep and that is causing the headaches--I don't know.

I too take a sublingual B12, 3000mcg daily. I have been taking this amount for almost 2 years and was taking 1200mcg for over a year before that. I truly think B12 is very important for most celiac's. I also take a good multiple vitamin--NatureMade Woman +50.

Deb you may know this already but this is from the Topamax web site, it can CAUSE PN symptoms:

(The bold is mine)

TOPAMAX is approved for migraine prevention in adults only.

TOPAMAX is not used to stop a migraine after it starts.

IMPORTANT SAFETY INFORMATION

Serious risks associated with TOPAMAX include lowered bicarbonate levels in the blood resulting in an increase in the acidity of the blood (metabolic acidosis). Symptoms could include hyperventilation (rapid, deep breathing), tiredness, loss of appetite, irregular heartbeat or changes in the level of alertness. Call your doctor immediately if you get these symptoms. Your doctor may want to do simple blood tests. Chronic, untreated metabolic acidosis may increase the risk for kidney stones or bone disease.

Other serious risks include decreased sweating, increased body temperature, kidney stones, sleepiness, dizziness, confusion, difficulty concentrating, and increased eye pressure (glaucoma). Call your doctor immediately if you have any decrease in vision or eye pain. These problems can lead to blindness if not treated right away.

More common side effects are tingling in arms and legs, loss of appetite, tiredness, nausea, diarrhea, taste change and weight loss.

[lmvrbaby]

I was on Tompamax once for migraine control and it made me feel like a zombie. I have been on several medications for migraine control and now just started Lyrica. But for the peripherial neuropathy I am on Nuerontin. That seems to help. Also the Lyrica is made for PN and pain from shingles, but a lot of medications are used for pain control for different reasons. Talk to your doctor and see if there is something else. There is always something new and different that may help. Good luck.

[darlindeb25]

Thanks Raven for the info. My neuro has watched me closely while on the Topamax and it doesn't seem to have increased any symptoms, yet, it doesn't seem to be stopping the headaches either. Thankfully, my PN isn't as painful as some speak of, or I am more tolerant, which I know can be true of many. I have had pain for so many years, I just tend to go with it. My mother used to say, "You are too young to be in pain!" Like just telling me that would make it go away. Then she would say, "Well, we are never too young for pain, it's just something we deal with in this family, get used to it!" I actually do not remember ever "not" having a headache! They seem much worse over the last year or so though. All 5 of my kids have headaches too, maybe not all the time, but they do suffer headaches, as do my grandchildren. I have a granddaughter who is on seizure medication now at 9 yrs old because of seizures caused by headaches and her brother at 8 yrs old is on beta blockers for migraines. I guess it is a family trait!

Anyways, in January, I see my neuro again and if the Topamax at 100mgs is not making a huge difference, he will try something new. Buzzing and vibrations are an annoyance, but not painful for me, I can tolerate them. It's when my shoulders get very painful that I am in misery. My peripheral neuropathy is in my wrists and hands, I have small fiber neuropathy in the rest of my body. I originally went to the neuro to find a connection with B12. He does agree that B12 is definitely a hugh factor for many people where neuropathy is concerned, especially celiac patients. I am in many neuropathy forums and it seems like there is rarely one medicine that works for anyone--more like a combination has to be taken. I honestly do not think they know enough about neuropathy yet. It's like celiac, they are searching in the dark still.