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Neuropathy

pcooley4195

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pcooley4195 Rookie
pcooley4195
Posted

New to the celiac forum... After being diagnosed with celiac after a year of bouncing around from Doctor to Doctor wondering what was causing all my knee pain ( at one point I was told that I dislocated my knee by immediate care and went to PT for 2 months) then the pain was in my other knee... I finally talked to my doctor about celiac after researching for months and had the endoscopy done as well as blood work which confirmed I did indeed have Celiac, My main question is what can I do to get rid of this neuropathy in both legs and left arm it makes concentration almost impossible... And I only showed low in vitamin D. Appreciate any attempt at help.

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cyclinglady Grand Master
cyclinglady
Posted

Welcome!  

I am sure others will offer you excellent advice, but neurological issues unfortunately are the last to resolve.  Keep to a very strict gluten free diet at least until you see some symptom improvement.  This includes a Whole Foods, less-processed,  diet and avoid going out to eat.

  Were your B-12 levels checked too?  

pcooley4195 Rookie
pcooley4195
Posted
  • Author

Yes.. Also it's only been 2 months since my diagnosis, and from all my research I understand healing takes time. But I was told I wasn't low in any vitamins just a little low in vitamin D. However it was slightly strange because I had been taking b12/magnesium/ Vitamin D for my strange muscle pains that I now know are from the celiac.

icelandgirl Proficient
icelandgirl
Posted

Hi Pcooley!

For my peripheral neuropathy I take magnesium.   My Dr recommended 200-400 mg a day.  I started with 100 and found 300 to be the magic number for me.  I take a chelated magnesium.   It has reduced my symptoms almost completely.  It was so bad at one point that I had a hard time sitting and reading.

Are you supplementing with a good D3 for your deficiency?  That will help things as well.

Hole that helps!

pcooley4195 Rookie
pcooley4195
Posted
  • Author
4 hours ago, icelandgirl said:

Hi Pcooley!

For my peripheral neuropathy I take magnesium.   My Dr recommended 200-400 mg a day.  I started with 100 and found 300 to be the magic number for me.  I take a chelated magnesium.   It has reduced my symptoms almost completely.  It was so bad at one point that I had a hard time sitting and reading.

Are you supplementing with a good D3 for your deficiency?  That will help things as well.

Hole that helps!

That's exactly what I mean when I say it makes concentrating difficult, when I'm working on my college assignments or in class it's extremely hard to stay focused. I've been supplementing with magnesium/B12/D3 for about 6 months even before I knew I had celiac I also take a multivitamin. How long did it take you to notice the benefits of the magnesium?

GFinDC Veteran
GFinDC
Posted

@PCooley,

Another thing that can cause joint pain is nightshades.  You could try cutting out nightshades for a month or so and see if it helps.

pcooley4195 Rookie
pcooley4195
Posted
  • Author
39 minutes ago, GFinDC said:

@PCooley,

Another thing that can cause joint pain is nightshades.  You could try cutting out nightshades for a month or so and see if it helps.

My joint pain has definitely decreased the main issue I have currently is lower back pain... It seems my lower back is inflamed and the neuropathy in the legs and arms.

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cristiana Veteran
cristiana
Posted
45 minutes ago, pcooley4195 said:

My joint pain has definitely decreased the main issue I have currently is lower back pain... It seems my lower back is inflamed and the neuropathy in the legs and arms.

I had inflammation of the sacroiliac joints which felt like lower back pain, and sometimese referred to my groin, abdomen and thigh.  It was a burning sensation which showed up a few months after going gluten free, hung around for a while, then left me.  I still get it midly from time to time, especially when I've been carrying heavy weights.  It is apparently quite common in coeliacs.  You might want to look it up.

As regards neuropathy, two other things to consider:

I recently tested low/borderline normal for folate.  I hadn't been supplementing it to the extent I have been taking B12 and I'm pretty sure it could be a contributing factor.

Also, how are your ferritin levels/hemoglobin.? Again, this can cause tingling. I'm borderline anemic again (perimenopause thing) and again I think its part of my problem.

 

pcooley4195 Rookie
pcooley4195
Posted
  • Author
1 hour ago, cristiana said:

I had inflammation of the sacroiliac joints which felt like lower back pain, and sometimese referred to my groin, abdomen and thigh.  It was a burning sensation which showed up a few months after going gluten free, hung around for a while, then left me.  I still get it midly from time to time, especially when I've been carrying heavy weights.  It is apparently quite common in coeliacs.  You might want to look it up.

As regards neuropathy, two other things to consider:

I recently tested low/borderline normal for folate.  I hadn't been supplementing it to the extent I have been taking B12 and I'm pretty sure it could be a contributing factor.

Also, how are your ferritin levels/hemoglobin.? Again, this can cause tingling. I'm borderline anemic again (perimenopause thing) and again I think its part of my problem.

 

I'll definitely check with my doctor this Thursday in terms of a more in depth look at my hemoglobin levels as well as Ferritin, much appreciated. And my back pain started when I went to Pt who thought my tingling in my legs was from a lower back issue and after doing excersizes that targeted the lower back it made everything feel aggravated.

Alwayssomething Contributor
Alwayssomething
Posted

Don't know if you are already doing this, but for me I had to stop wearing certain things to avoid the extensive pain in my legs, arms and even in my hip from neuropathy.    I still can't wear some of them without getting a flare.    Nothing with elastic in the arms or legs, socks were tough but I just wore the ones that were lower on the foot.  This helped a lot!   For me seams running up on my hip like in jeans were a huge pain trigger and I had to switch to Columbia hiking pants.    Cost me  fortune but it was well worth it and after years I can wear jeans again without an issue, although I don't push it and wear them every day.    I have been gluten free for 7 years and still have some neuropathy here and there but nothing like before.   For me nightshades cause joint issues but not neuropathy.  By the way my Vitamin D and B12 are just now in the middle of the normal range where my dr wants them, but I can't stop taking Vitamin D or doing the B12 shots or my numbers slowly drop back down, I don't think I will ever be able to go without.    

cristiana Veteran
cristiana
Posted
58 minutes ago, Alwayssomething said:

Don't know if you are already doing this, but for me I had to stop wearing certain things to avoid the extensive pain in my legs, arms and even in my hip from neuropathy.    I still can't wear some of them without getting a flare.    Nothing with elastic in the arms or legs, socks were tough but I just wore the ones that were lower on the foot.  This helped a lot!   For me seams running up on my hip like in jeans were a huge pain trigger and I had to switch to Columbia hiking pants.    Cost me  fortune but it was well worth it and after years I can wear jeans again without an issue, although I don't push it and wear them every day.    I have been gluten free for 7 years and still have some neuropathy here and there but nothing like before.   For me nightshades cause joint issues but not neuropathy.  By the way my Vitamin D and B12 are just now in the middle of the normal range where my dr wants them, but I can't stop taking Vitamin D or doing the B12 shots or my numbers slowly drop back down, I don't think I will ever be able to go without.    

Wow Alwayssomething - so I'm not the only one!  I have had this problem with elasticated and tight waists too.  I had to stop wearing certain clothes too.  Any pressure on my waist or hips was a disaster.  I think it pressed against my SI joints, but also added the pressure of trapped wind to an already painful area.

 

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