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Neuropathy Getting Worse

mbr22m

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mbr22m Rookie
mbr22m
Posted

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.

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nvsmom Community Regular
nvsmom
Posted

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.  :(

GF Lover Rising Star
GF Lover
Posted

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

 

Colleen

KEMB Rookie
KEMB
Posted

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.

mbr22m Rookie
mbr22m
Posted
  • Author

Thank you all :-) I do take B complex everyday, along with a protein shake every morning that has a lot of vitamins in it. I'll get the B6 checked. I know calcium, D, magnesium, potassium and B12 are all normal.

mbr22m Rookie
mbr22m
Posted
  • Author

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?

KEMB Rookie
KEMB
Posted

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.

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ravenwoodglass Mentor
ravenwoodglass
Posted

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. 

cristiana Veteran
cristiana
Posted

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. 

icelandgirl Proficient
icelandgirl
Posted

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!

mbr22m Rookie
mbr22m
Posted
  • Author

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!

  • 2 weeks later...
Ed in Baja Rookie
Ed in Baja
Posted

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!

mbr22m Rookie
mbr22m
Posted
  • Author

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)

frieze Community Regular
frieze
Posted

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

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