Celiac.com Sponsor (A1):



Celiac.com Sponsor (A1-m):


0
mbr22m

Neuropathy Getting Worse

Rate this topic

Recommended Posts

Hi all,

I was diagnosed with celiac about ten years ago through biopsy and blood test. About 5 years after going gluten-free, I started having neurological symptoms (tingling, cool like numbness in my hands). It was during a stressful time in my life. I went to a neurologist and she did an eval to check my reflexes, balance etc and it was fine. I increased my B12 and it went away. Now, It returned and much worse. It's mostly at night and I wake up with numb, tingling hands and feet and patches on my legs. I'm really scared and started researching on here and it seems to be common. Has anyone else has this happen after being gluten-free for so long? I know it's not CC because my GI just ran a battery of tests to see if I was still inadvertently being exposed and all came back negative. I have another appointment with neurologist for the nerve conduction study.

Share this post


Link to post
Share on other sites

Join eNewsletter


Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8):


If you have been gluten-free for that long, I would doubt that celiac disease is the main cause.  Sometimes celiac disease will give symptoms that cannot be fixed and then it will get worse as time goes by.  It is not that celiac disease is affecting it now, but time is making something worse... That is the only way I could see it linked to celiac disease.

 

Good luck with the test. I hope you get it figured out.  :(


Nicole 

"Acceptance is the key to happiness."

ITP - 1993

Celiac - June, 2012

Hypothyroid - August, 2012

CANADIAN

Share this post


Link to post
Share on other sites

Join eNewsletter

I agree with Nicole.  Most likely not Celiac Related.  Do check for additional AI Disease that may have popped up.

 

Colleen


HAVE A SUPER SHINY DAY

 

LTES gem 2014


*Multiple AI Diseases

*General Insanity


"We cautiously travel through life to arrive safely at our death" - J. R. C. , my Son.

 

Are We There Yet? and Dad says...All you have to do it ride it out.

 

Comments/views/opinions expressed on the site are my own and are not representative of Forum Admin/Owner

Celiac.com - Celiac Disease Board Moderator

 

smiley-face-making-cocktail.gif

Share this post


Link to post
Share on other sites

Join eNewsletter

Have your neurologist check on vit B6 levels (pyroxidine).  I've been gluten free more than 10 years but recently discovered I have toxic levels of B6 in my blood even though I was not taking very high B6 supplements, but still well above the MDR.  You have to check the blood levels, because numbness/tingling (which I have) is a symptom of both high and low B6.  There are also many other symtoms than may occur with B6 toxicity.

Share this post


Link to post
Share on other sites

Join eNewsletter

I'm just do tired.. every month, It's something different to the point that my primary care thinks I'm a neurotic hypochondriac. . I'm tired of being asked if I'm under a lot of stress, then handed a rx for xanax.. Does it ever get better?

It's too soon for me to say how quickly the B6 toxicity symtoms go away - especially the neurological ones which people say can take longer - but it does seem that some are subsiding, including the fatigue.  Just very tired some days but most are better.  My PCP did the complete blood count, complete metabolic panel, thyroid TSH, and vitamin D blood tests and all were fine so it stopped there.  Like you, I felt the symptoms were being written off as stress and/or depression.  I found the neurologist on my own and he ordered several other tests, including the B12, B6, glucose tolerance, ANA autoimmune panel, glycohemoglobin, and immunoelectrophoresis serum blood tests.   I continued to try to push through my fatigue throughout all of this and stick with my exercise program as much as possible, even if I could barely get through it.  I think that puts you in a better place to recover from.

Share this post


Link to post
Share on other sites

Join eNewsletter

You might also consider seeing a chiropracter.. Since it mainly comes on at night and while you are sleeping it could be something simple like a misalignment pressing on some nerves. 


Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

Share this post


Link to post
Share on other sites

Join eNewsletter

You might have something called ulnar compression - my hands and fingers are sometimes numb when I wake up (plus tingle during the day sometimes). The nerve conduction study will find that out for you.  I go through periods of patches of tingling on my arm, face and legs and stress seems to set it off.  I am sure it is either deficiency or too much of one vitamin or mineral and I need to get it tested, really.  I agree, B6 needs to be looked at. 


Diagnosed by blood test and endoscopy Spring 2013

Adopted a gluten-free diet in May 2013

 

BRITISH

Share this post


Link to post
Share on other sites

Join eNewsletter

I'm just do tired.. every month, It's something different to the point that my primary care thinks I'm a neurotic hypochondriac. . I'm tired of being asked if I'm under a lot of stress, then handed a rx for xanax.. Does it ever get better?

Aww...that's such a hard way to feel. ((((Hugs)))). I've felt the same way and absolutely hate going to the Dr. I get so much anxiety going that I have to sit in the waiting room doing deep breathing until they call me. Then they're so impressed by my BP...wow 105/67...or something similar. What they don't realize is that I've had to get myself into a semi meditative state to get in there. Lol!

Anyway...it does at times feel like there's always something and yes,in fact, that in itself can make us anxious.

I think definitely have B6 checked. I'm pretty sure those B's can build up in your system and that too much B6 can cause neuro issues. If it's not that...maybe it's time to look at another AI. That's no fun, I know, but seems to happen to a lot of us.

Hang in there and keep us posted!


January 2014-Celiac

August 2014- Hashimoto's

"You never know how strong you are, until being strong is your only choice."

Bob Marley

Share this post


Link to post
Share on other sites

Join eNewsletter

Thank you all :) Yes icelandgirl, Just thinking about having to see another doctor gives me anxiety too. My mother has 4 AI diseases (lupus, AI hepatitis, sjogrens and hashi) so I am always worried about heading down the same path. I swear she has celiac too but she refuses to even try going gluten-free to see if she improves, and her health continues to decline. Thanks ravenwoodglass, I have appt with my chiropractor Friday for an alignment. I hunch over a computer all day so maybe it could be a pinched nerve. I hope!

Share this post


Link to post
Share on other sites

Join eNewsletter

Actually, there are many case studies showing that neuro problems can progress in the absence of gluten in the diet. I found them when I was puzzled as to why my symptoms progressed. Its most common in people who present with neuro problems, and may have very few classic celiac gut issues. That was my case.It's also clear that therapies such as an appropriate exercise program, physical therapy, acuncture, massage can help, and it sounds like there are a lot of people responding to you about vitamin problems, that's the great thing about this site.

Don't despair! I have the hand issues also, but it is a minor nuisance compared with the other neuro problems. I try to focus on what I CAN do.

Hang in there!

Share this post


Link to post
Share on other sites

Join eNewsletter

Thanks, Ed. I saw the neurologist and she suspects that low iron may be the cause and is running an iron panel. It does get discouraging when I eat healthy, exercise and take vitamins and still have issues that don't seem to improve, but I try and be grateful for the days I feel good :-) Neurologist said it is possibly restless leg syndrome, but still arranged for nerve conduction study. Still waiting on that appt. I still don't understand how that could explain tingling in hands though. Hopefully iron panel might reveal answers. Also found out my vitamin D was on the low side (I thought it was ok)

Share this post


Link to post
Share on other sites

Join eNewsletter

Thanks, Ed. I saw the neurologist and she suspects that low iron may be the cause and is running an iron panel. It does get discouraging when I eat healthy, exercise and take vitamins and still have issues that don't seem to improve, but I try and be grateful for the days I feel good :-) Neurologist said it is possibly restless leg syndrome, but still arranged for nerve conduction study. Still waiting on that appt. I still don't understand how that could explain tingling in hands though. Hopefully iron panel might reveal answers. Also found out my vitamin D was on the low side (I thought it was ok)

always get your lab results, with norms!  good luck

Share this post


Link to post
Share on other sites

Join eNewsletter

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.

Guest
Reply to this topic...

×   Pasted as rich text.   Restore formatting

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

0


Join eNewsletter