Peripheral Neuropathy question

[RMJ]

I have celiac and am on a gluten free diet, although my DGP level is still slightly elevated.  I am having troubles with peripheral neuropathy (tingling) in my feet.  Certain positions make it worse, as if a nerve is being pinched.  I have a question for those who have had peripheral neuropathy that is related to gluten.  Do position and/or activities matter?  Or is the pain/numbness/tingling constant?

[cristiana]

Hi RMJ

I started to experience mild tingling in both my feet and my left calf the summer before I was DX'd.    It got worse when I exercised in certain restrictive footwear.   I was finally DX'd in the spring of 2013,  but months prior to that I also found myself waking up with numb fingers and arms on occasion, which would soon pass if I moved my arms and hands around.   I also discovered that twisting a jar lid off, for example, would start off the tingling.

Since then my symptoms have waxed and waned.   There are days when I have no symptoms at all.  Other days it is really obvious.  Sometimes I get it after exercise, other times not.  I really can't explain why it varies so much.  Perhaps gluten exposure?  I think I have read thyroid problems can also cause tingling.  Nutritional deficiencies can also be another contributing factor.

I have since been officially diagnosed with ulnar compression.  My clinical neurologist told me if celiac is untreated for a while the nerves start to complain!

I cannot find the link I want, I'm sure I once saw an article somewhere that said that carpal tunnel and ulnar compression are common in celiacs, but in the meantime these links might be helpful.

 https://www.celiac.com/articles/21993/1/Migraines-Carpal-Tunnel-Syndrome-Depression-Personality-Change-and-Psychosis-Common-in-Celiac-Disease/Page1.html

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I think I experience peripheral neuropathy but  I think ulnar compression and something similar might be going on in my calves/feet too?

Reading a lot as I have about the issue I think  there is real hope that sticking to the diet should result in improvement in peripheral neuropathy,  in the end!   

It is also important that we get checked for deficiencies.   B12, iron and Vitamin D are important.  Also, one can have too much of a good thing - someone recently posted that had v. high B6 readings and that was cause of their tingling, so that ought to be checked too.   

I am not sure I have been very helpful, but hopefully others will chime in.

[RMJ]

Thank you for the reply and the links.  I was tested for nutritional deficiencies when I was originally diagnosed with celiac and was fine (high B12 and folate).  My doctor is testing my thyroid, I see her Monday for the results.  Tingling in the right foot started while doing physical therapy exercises for tingling in the left thigh, so it may be that the exercises compressed a nerve, but it is getting worse even after stopping the exercises.

[icelandgirl]

Hi RMJ,

I too have had peripheral neuropathy...particularly bad in my feet, but in my fingers at times too.  And I had high-ish B12, so it wasn't that.  I do have Hashimotos so was going to suggest thyroid first...let us know how those tests come out.  Hopefully your Dr did a full thyroid panel.  I have noticed that mine gets worse when I'm hypo.  

Even getting my thyroid in a good spot didn't completely take care of the tingling though.  I asked my GP about it last year as it was really driving me crazy.  He suggested  magnesium...I started that and it has helped so much!  He suggested 200-400mg a day.  I'm super sensitive to everything, so I started off slow with 100 and slowly worked my way to 300 and have stayed there.

This has made a huge difference for me...you could try it and see?

I hope you get some answers and this stops for you...I know how annoying it can be.

[Awol cast iron stomach]

Hi I hope you get well as soon. This is one of my symptoms over the past 4 years and I would consider mild. The tingling can be frightening, then annoying, and in time hopefully will improve and just be an indicator of exposure. Try your best to limit exposure. That is the goal to respect ourselves and our bodies. 

I get bouts of tingling in my right toe after waking from a nights sleep or tingling in my upper left arm. My issues are related to gluten consumption or exposure and sedentary/ restful positions. I notice it less when moving about or active. My arm tingles when sitting and my toe upon waking from sleep. I do not lose feeling in my limbs I just get tingling like limb is "falling  asleep" I know in the past my  body responds this way and it was one of the "new" symptoms in recent 4 years that had myself and my husband question if my past IBS diagnosis was celiac instead. I went off gluten the tingling subsided 4-8 weeks later. It is just me knowing myself over my lifetime that tells me this is my body's multi level cascade systemic response to gluten.  Hope this helps you in your quest for knowledge and I am sending good thoughts that yours will subside too.

Be well.

[RMJ]

Thyroid tests normal.  It appears to be a mechanical problem (compression of nerve), possibly in my back.  Next step is MRI.  I'm just thankful that it is merely tingling and not pain!

[cristiana]

RMJ, thanks so much for the update.   Wonder if you can let us know what happens once you have the MRI, it would help us other tinglers to know what might being going on with us!

Awol and Icelandgirl, your responses are also very helpful.

Neuropathy appears on plenty of lists of symptoms; there are quite a lot of older posts on it on this website although is it my imagination, not so many recently?  I find it very reassuring I'm not only one here.   Thanks for sharing.

[icelandgirl]

Hi RMJ...I'm glad you've gotten some results and are closer to an answer.  Please do let us know what comes out of your MRI!

[RMJ]

Will do!  Thanks to all for sharing your experiences and for your support.

[RMJ]

My spine is fine, at least fine for my age (has some expected issues for a 61 year old).  Still don't know what is causing the tingling.  Oh well.  At least it has stopped getting worse.

 

[icelandgirl]

1 hour ago, RMJ said:

My spine is fine, at least fine for my age (has some expected issues for a 61 year old).  Still don't know what is causing the tingling.  Oh well.  At least it has stopped getting worse.

 

Hi RMJ...I'm so glad that your spine is fine...that's great news!  Think abouthat trying magnesium?  It has helped my super annoying tingling so much.

Thanks for letting us know.

[cristiana]

RMJ - thanks for coming back to us.  Keep us posted if you do get any answers.  I think magnesium is definitely worth a shot, no pun intended.  As I said in an earlier post, mine tends to come and go - I really don't know why but if I get any answers I'll let you know, too.   I suspect sometimes that it cross contamination, as well as perhaps damage that has accrued over the years.