Neuropathy?

[Simona19]

Hi again!

Is there somebody who had neuropathy related to the celiac disease? What were your symptoms?

I have tingling, numbness, muscle spasms in my arms and legs, dizziness, faintness, lower blood pressure, weakness and weight lost- 32 pounds from april. I also have a white lesion on my brain. Could this be a some type of neuropathy, or just vitamins deficiency?

I feel much better on the gluten and casein free diet, but I still have these symptoms. I would like to get better. I don't like to feel like that anymore. I'm sick 4 months now. I want to be healthy again.

Any thoughts?

[ravenwoodglass]

The white lesion is likely from gluten ataxia which can mess with balance. I have multiple lesions and found out years post diagnosis that in some countries they are considered diagnostic of celiac.

The symptoms you describe with the tingling etc is what is associated with neuropathy. Sublingual B12 should help the nerves heal more quickly. It does take a bit more time for the nerves and brain to heal than the gut but they should resolve gluten free.

I don't know for sure if the low BP is associated but my BP was always very, very low prediagnosis and is now in normal levels for the first time in my life.

[dilettantesteph]

My neurological symptoms took longer to heal than the gut symptoms. I had pain and numbness, vision blurriness, irritability,and these come back easily when I get glutened. Irritability comes back most easily and blurred vision too.

[Simona19]

The white lesion is likely from gluten ataxia which can mess with balance. I have multiple lesions and found out years post diagnosis that in some countries they are considered diagnostic of celiac.

The symptoms you describe with the tingling etc is what is associated with neuropathy. Sublingual B12 should help the nerves heal more quickly. It does take a bit more time for the nerves and brain to heal than the gut but they should resolve gluten free.

I don't know for sure if the low BP is associated but my BP was always very, very low prediagnosis and is now in normal levels for the first time in my life.

Hi!

Do I need to see a neurologist? Should I find the doctor whoes specilization is for muscle (neurophaty) or head (migranes)? Do I need to show my Mri scans to neurological surgeon? I have cyst in my left sinus, and the top bone in my sphenoid sinus (in middle of my head) is much lower than on the other side (my brain will go in to the space from time to time- scary thing). Doctors will give me something to cure this, or it have to resolve by itself?

[Kim27]

Have you had your b12 level checked? That can cause numbness, tingling if it's pretty low

[ravenwoodglass]

Hi!

Do I need to see a neurologist? Should I find the doctor whoes specilization is for muscle (neurophaty) or head (migranes)? Do I need to show my Mri scans to neurological surgeon? I have cyst in my left sinus, and the top bone in my sphenoid sinus (in middle of my head) is much lower than on the other side (my brain will go in to the space from time to time- scary thing). Doctors will give me something to cure this, or it have to resolve by itself?

Now that you are gluten free that should help matters if not resolve them. There is really nothing a doctor can do for gluten ataxia other than to tell you to be strict with the diet. As far as the cyst and the sinus issue go perhaps a ENT (ear, nose and throat) can give you some guidance.

Do get some of the sublingual B12 and be strict with the diet. It does take some time for neuro issues to heal fully and for most of us that have them they come back when glutened but will then resolve again once the antibodies clear the system.

[Simona19]

Have you had your b12 level checked? That can cause numbness, tingling if it's pretty low

I had it checked twice 3 months ago, and it was normal. My gastroenterologist told me that was normal. I don't have the result. I don't know the numbers and range. It's posible to be B12 deficient after 3 months on gluten and casein free diet?

[Simona19]

Now that you are gluten free that should help matters if not resolve them. There is really nothing a doctor can do For gluten ataxia other than to tell you to be strict with the diet. As far as the cyst and the sinus issue go perhaps a ENT (ear, nose and throat) can give you some guidance.

I saw the neurological and ENT surgeon last year in april. The bone in the sphenoid sinus is very thin. The cyst is 2 cm. Ent surgeon told me that he would take it out, but because of the bone he can't (it can easily brake and the "water" surrounding the brain could run out trough my nose. I can't do nothing about the cyst. I can't bread when I have a cold, but for now I need to live with that.

[Skylark]

As well as the B12 Raven suggested be sure you are eating healthy fats, and getting enough vitamin D and other B vitamins like thiamine and niacin. Your nervous system needs them to repair the damage. Lecithin (from egg yolks or soy) and omega-3 are particularly important. Don't try to eat a "low fat" style diet as you will starve your nervous system.

[ravenwoodglass]

I had it checked twice 3 months ago, and it was normal. My gastroenterologist told me that was normal. I don't have the result. I don't know the numbers and range. It's posible to be B12 deficient after 3 months on gluten and casein free diet?

It can take awhile for a B12 deficiency to show up in the blood work. Plus did you see the actual results. When I was tested prediagnosis I was told my levels were in the normal ranges but it turned out my level was 260 when the cut off was 250. Even though the results were in the 'normal' range my neuro had me start the B12 sublinguals anyway. Even prediagnosis they helped with the tingling etc. I continued to supplement until my last blood test, 7 years after diagnosis, where the levels were then 1,250 which was 250 over the high level on the range. I now only supplement a couple times a month and have been fine. I found it strange that the normal ranges had such a wide expanse 250 to 1,000. Some doctors will supplement if your under 500. B12 is a water soluable vitamin so don't let the high amount in the sublinguals scare you off. You will simply excrete any excess. I wouldn't advise continueing on them for life but they can help a lot while you are healing.

Skylark gave some good advice for other supplements to take and do have doctors check you levels of vitamin D if they haven't already.

[Simona19]

As well as the B12 Raven suggested be sure you are eating healthy fats, and getting enough vitamin D and other B vitamins like thiamine and niacin. Your nervous system needs them to repair the damage. Lecithin (from egg yolks or soy) and omega-3 are particularly important. Don't try to eat a "low fat" style diet as you will starve your nervous system.

I didn't knew that. I think that I did starve my nervous system. I had pain in my pancreas after I ate something with fat. I also had an inflamation in my stomach and upper Gast. track. Right know I don't eat nothing with fat -not even eggs or soy, soy milk, no olive oil. Everything I'm cooking in the plain water with some salt. Doctor gave me pancreatic enzymes to help me with the fat digestion. I'M able to eat soups with maybe 1/4 of the teaspoon of olive oil when I'm roasting some vegetables. I thing that because I wasn't able to eat fat for 3-4 months I lost lot of vitamines associated with it. Now my muscles are paying the price.

I found the blod work from august 10. Here are the results:

vitamin D total 31 referance range 30 to 100

vitamin D, 25-OH,D2 <4 referance range under <20 indicative of Vitamin D deficiency,

vitamin B12 417 referance range 200-940

iron 35 referance range 35-150

magnesium 1.7 referance range 1.8-2.4

They never checked for the thiamine and niacin, just folate serum which was 8.4 referance range 5.38-24.00.

[adab8ca]

I didn't knew that. I think that I did starve my nervous system. I had pain in my pancreas after I ate something with fat. I also had an inflamation in my stomach and upper Gast. track. Right know I don't eat nothing with fat -not even eggs or soy, soy milk, no olive oil. Everything I'm cooking in the plain water with some salt. Doctor gave me pancreatic enzymes to help me with the fat digestion. I'M able to eat soups with maybe 1/4 of the teaspoon of olive oil when I'm roasting some vegetables. I thing that because I wasn't able to eat fat for 3-4 months I lost lot of vitamines associated with it. Now my muscles are paying the price.

I found the blod work from august 10. Here are the results:

vitamin D total 31 referance range 30 to 100

vitamin D, 25-OH,D2 <4 referance range under <20 indicative of Vitamin D deficiency,

vitamin B12 417 referance range 200-940

iron 35 referance range 35-150

Well, for the D and the iron, you are certainly at the low end of normal! And actually, the second D result looks like it says if you are <20, you are deficient (which <4 certainly is!). You may want to call your Dr. ro confirm. Did they suggest you supplement?

Not to scare you at all but my normal ranges were 75-250 and I was at 70 (every lab has differnt ranges). I have been taking at least 2500 IU of Vitamin D since June 7th and last week my D levels were at 47! So they are still dropping...I am only 2 weeks gluten free, so I expect I am not absorbing that well but just a heads up that you may want to pursue this.

My only symptoms of Celiac were huge weight loss and peripheral neuropathy in my feet (burning, tingling nad pain) and less in my hands...Nerves need nutrition and can take a long time to heal;

Good luck!!!

Ada

magnesium 1.7 referance range 1.8-2.4

They never checked for the thiamine and niacin, just folate serum which was 8.4 referance range 5.38-24.00.

[Skylark]

I assume your doctor prescribed vitamin D? Some celiacs have pancreatic issues that resolve as they heal. As you're able to eat a little more healthy fats, you may start to feel a little better. You could also see if you tolerate choline and inositol supplements if fats are really a problem.

[Simona19]

I assume your doctor prescribed vitamin D? Some celiacs have pancreatic issues that resolve as they heal. As you're able to eat a little more healthy fats, you may start to feel a little better. You could also see if you tolerate choline and inositol supplements if fats are really a problem.

I'm taking the Vitamin D 1000mg every day. With the help of the pancreatic enzymes I'm able to digest some very, very small amounts of fat (like oil when I'm rosting vegetables or meat for dinner - like one spoon in all pot for 4 people). Check my new post Back from Columbia University. You can find there the ideas about the reason why I can't eat fat.

Thank you for the reply!!