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Peripheral Neuropathy


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#1 jebby

 
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Posted 30 October 2012 - 11:40 AM

I have just been diagnosed with a peripheral neuropathy related to celiac disease.
My symptoms started about 1 week after being accidentally "glutened" earlier this month. I began to get numb and tingling sensations in my hands and feet.
My neurologist told me that celiac disease is now the 3rd most common cause of neuropathy (behind alcoholism and diabetes) and the most common cause of ataxia. He told me that the pins and needles sensation in my extremities should resolve within 6 to 8 weeks, but to expect getting it whenever I am exposed to gluten from here on out.

I am wondering if any of you have been diagnosed with a peripheral neuropathy (and if so, what your experiences have been).

Thanks a bunch!
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#2 ravenwoodglass

 
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Posted 02 November 2012 - 04:38 AM

Wow a neurologist who is knowledgeable about celiac!!!!
I found that sublingual B12 helped resolve the neuropathy. If you are not already taking it you may want to see if it will help.
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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)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
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 with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity 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)

#3 AVR1962

 
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Posted 02 November 2012 - 07:18 AM

Wow, amazing to have any doc actually tell you this. I have had issues with neuropathy for 2 years now, had all kinds of tests done, have done lots of reading. Make sure you are taking a very good B complex as the B vits feed the nerves. B12 is very hard to get into the body so we have to take it in greater quantities but a complex has it in the proper purportions. Keep taking your vitamin C as well, as good for the nerves. Are you having actual pins and needles pain? I have had them in my feet. I used L-carnitine, 1000 mg daily for the first year and then was able to reduce it to 500 mg daily.

Just over 2 weeks ago I was able to go off the L-carntine. After repeated visits to various docs and lots of blood tests and you name it, a doc finally figured it was my back that was causing me issues. I ahve been doing yoga now almost daily for 2 weeks (this is after some treatments on my back) and now the left foot is good and only an occasional twing in the right foot.

I would hate to see you go down the road I went. I would make sure this is not coming from your back before you decide for sure it is gluten related. I have 2 bulging discs in my back. 2 different docs said my back was fine but I finally had an MRI and it showed the problem.
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Yesterday is not ours to recover but today is ours to win or lose!

Miscarriage, Kidney stones, Anemia, Pneumonia, Migraines, Restless leg, Bone fractures, Blurred/Double vision, Extreme fatigue, Bone & Joint Pain, Thyroid nodule, Celiac diagnosed 2011, Spine and leg bone loss, GERD, Vitamin deficiencies, Malabsorbtion, Neuropathy issues, Ataxia, Raynaud's Syndrome. Currently on diet with limited grain and sugar.

#4 jebby

 
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Posted 02 November 2012 - 03:51 PM

I am having pins and needles pains in my hands and feet, right more than left. I am on Vit B12 1000 mcg/day and just had my level checked and it is >1000, which I believe is good.
It's funny that you mention yoga, because I am signed up for my first class tomorrow (I last did yoga in college about 15 years ago). I am hoping to do it regularly.
My neurologist is great, he is planning on going to the huge celiac conference in Chicago in September 2013 and seems truly interested in the neuro effects of gluten. This is after meeting another neurologist first who did not know what celiac disease is!
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#5 AVR1962

 
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Posted 04 November 2012 - 12:00 AM

Jebby, that is great! Here is a link to some more info on natural remedies for nueropathy http://www.livestron...ral-neuropathy/
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Yesterday is not ours to recover but today is ours to win or lose!

Miscarriage, Kidney stones, Anemia, Pneumonia, Migraines, Restless leg, Bone fractures, Blurred/Double vision, Extreme fatigue, Bone & Joint Pain, Thyroid nodule, Celiac diagnosed 2011, Spine and leg bone loss, GERD, Vitamin deficiencies, Malabsorbtion, Neuropathy issues, Ataxia, Raynaud's Syndrome. Currently on diet with limited grain and sugar.

#6 frieze

 
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Posted 18 November 2012 - 08:48 AM

I am having pins and needles pains in my hands and feet, right more than left. I am on Vit B12 1000 mc, g/day and just had my level checked and it is >1000, which I believe is good.
It's funny that you mention yoga, because I am signed up for my first class tomorrow (I last did yoga in college about 15 years ago). I am hoping to do it regularly.
My neurologist is great, he is planning on going to the huge celiac conference in Chicago in September 2013 and seems truly interested in the neuro effects of gluten. This is after meeting another neurologist first who did not know what celiac disease is!

That test for B12 wouldn't be accurate, assuming you were taking the supplement right up to the day the level was draw. Need to stop for several days before the blood is drawn. good luck
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#7 gatita

 
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Posted 18 November 2012 - 10:54 PM

I haven't been diagnosed with PN, but the pins and needles numbness in my feet early this year scared the bejeebers out of me (many months before my doc told to try gluten-free). I was sure I had MS.

All I know is that symptom has completely disappeared since going gluten-free. It took about two months to go away. Also, my severe joint pain is mostly gone too.

I still wake up sometimes with that tingly feeling in my hands, but it seems to be connected to sleeping with my arms all twisted up in contorted postions lol.
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Diagnosed with wheat hates me 4/13


#8 Takala

 
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Posted 19 November 2012 - 10:40 AM

It took me longer than 6 to 8 weeks to get rid of it, it was a long, hard slog, but I had had this damage for decades and it was getting blamed on something else.
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#9 Traveller

 
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Posted 20 November 2012 - 07:28 AM

I have PN secondary to gluten sensitivity, or so says one of the leading celiac researchers. My symptoms arise shortly after being glutened, and start with pain in random parts of either foot, progressing to uncontrolled leg movements (leg "jumping"). Unsually the symptoms stop after a few weeks. I went to see the research doctor after the symptoms did not stop. He told me that I must have hidden gluten in my diet. That gluten was stripping myelin off the nerves, and allowing signals to short circuit. He also said that if I found and removed it the hidden gluten, in 6-8 months the myelin should build back up to the point where the symptoms should resolve. I found the hiddel gluten (a package of Hershey's miniatures, of which I was eating 2-3 a day over several weeks), and in 8 months they symptoms disappeared.

But they reappear with each glutening. At least I know why. Interestingly, the symptoms are worse when I fly.
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Diagnosed 03/09
Gluten-free since 03/09 (and manic about it)
Looking forward to a better life since 03/09

#10 KerryLad

 
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Posted 17 April 2013 - 02:03 AM

hi jebby i have the exact same issues with pins and needles i have had it for 3 weeks now. it started when i went out and drank carlberg and got them the monring after dont go out that much but then after i ate mcdonalds and alot of foods kept doing it pins and needles were kinda going but then the weekend ate a lot of taytos sausages etc and came back at me... are u free from this pins and needles now its def after i eat it i get them in my hands like freaked me out at start taught my heart all my bloods came back clear but waiting for celiac desiese like if u can let me know would be greatfull thanks alot 


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#11 jebby

 
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Posted 18 April 2013 - 08:13 PM

Hi Kerrylad, My pins and needles/numbness has totally resolved since taking all gluten out of my home (no more accidental cross contamination). The last time I had it happen was in January after getting gluten cross contamination at a restaurant. Do you have celiac disease or non celiac gluten sensitivity? Have you seen a doctor?
If you are linking the pins and needles sensation to drinking beer and eating at McDonalds, then there's a good possibility that it may be related to gluten. But, you need to make sure that you do to have multiple sclerosis, diabetes, lupus, or Lyme Disease, as these can all cause peripheral neuropathy to begin.
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#12 KerryLad

 
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Posted 19 April 2013 - 12:27 AM

Hi Kerrylad, My pins and needles/numbness has totally resolved since taking all gluten out of my home (no more accidental cross contamination). The last time I had it happen was in January after getting gluten cross contamination at a restaurant. Do you have celiac disease or non celiac gluten sensitivity? Have you seen a doctor?
If you are linking the pins and needles sensation to drinking beer and eating at McDonalds, then there's a good possibility that it may be related to gluten. But, you need to make sure that you do to have multiple sclerosis, diabetes, lupus, or Lyme Disease, as these can all cause peripheral neuropathy to begin.

thanks very much for reply.. had my full bloods done and they are all clear dibities tyroid etc like celiac came back clear in bloods like i know whats im eating this has being going on for months as in stinging in intestines used come and go away id take no notice but recently the last 3 weeks hit with a bang like,, i had salmon yesteday with pastry on it potatoes and veg and cause on top i took the pastry off it and wipped the sause away and after eating it 15 mins later i felt sick and needed to get sick its just the bloods came back negitive cracks me up and these pins and needles are head wrecken and all the doctorrs from my place never heard of pins and needles from it like how long did it take for u to get rid of them and did u feel good on the new diet?


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