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Small Nerve Fiber Neuropathy


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18 replies to this topic

#16 Neshema1

 
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Posted 23 June 2011 - 04:22 PM

Thank you for your thoughts!
While researching my symptoms for 3 years, I read about POTS---but I do not have all these symptoms.
After I posted this topic, I saw my doctor, a physiatrist (pain management Dr.) and 2 physical therapists.
My doctors say the nerves will regenerate in time. I no longer "tingle", except in the lumbar region. The physical therapists both say the burning is nerve compression and trigger point referred pain and shortened muscles and have given me stretching exercises and massages.

This, plus a gluten-free diet for 6 months--- and I am seeing a lessening of symptoms. It's slow, but better. My fingers are crossed.

Thanks again for replying!


Well, I am really glad to hear you do not have POTS! It is a real drag on top of your other issues. I wouldnt wish POTS on my worst enemy! So, good luck with your symptoms. I hope things improve quickly!
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#17 Luddie

 
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Posted 23 June 2011 - 08:24 PM

This, plus a gluten-free diet for 6 months--- and I am seeing a lessening of symptoms. It's slow, but better. My fingers are crossed.

[/quote]
I've been on a gluten free diet for at least a year but seem to get glutened anyhow. I'm so very careful. Would any of you share with me your IgA and IgG numbers? Apparently the Mayo Clinic is now doing just a <10 or ,<20 etc. instead of what I am used to, such as 2.3 or 3.8
Just wondering where I stand compared to others.
Thanks to all who are on these forums and provide such support. It really gets discouraging and kind words and information help!
Luddie
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#18 IrishHeart

 
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Posted 24 June 2011 - 05:42 AM

This, plus a gluten-free diet for 6 months--- and I am seeing a lessening of symptoms. It's slow, but better. My fingers are crossed.


I've been on a gluten free diet for at least a year but seem to get glutened anyhow. I'm so very careful. Would any of you share with me your IgA and IgG numbers? Apparently the Mayo Clinic is now doing just a <10 or ,<20 etc. instead of what I am used to, such as 2.3 or 3.8
Just wondering where I stand compared to others.
Thanks to all who are on these forums and provide such support. It really gets discouraging and kind words and information help!
Luddie


Hi Luddie!

Anytime I get "glutenized" (as we call it in our house :lol:) I can almost always point the finger at what has caused it.
(1) I eat at my sister's house (which we call gluten- landmine- hell. :lol:) They are all BIG gluten eaters and it's a sea of bread, cookies and baked goods. She's a sweetheart and no matter how hard she tries to keep my food safe for me(preparing everything separately)-- I still get sick after. I just bring my own food now (and wash my hands frequently ) and she's cool with that.
(2) I try a "gluten-free" product on a "safe list"--snickers bar, Rice dream rice milk, for example. Low levels or cross contamination perhaps?
(3) I try something from a "gluten-free" menu in a restaurant. :angry:

Why does this happen? well, I think I am just super-sensitive and even the small doses of cross-contamination get me.

As for my "numbers"--I am afraid I cannot help you there. I am one of many who test negative on a blood test. Yet, I am a celiac nonetheless. On a separate IgG panel, my soybean IgG number was through the roof. "Severe" it was labeled--very high antibodies.

Are you sure these are gluten reactions you are having and not just a reaction to other food proteins? Casein? Soybean? I feel like I have been glutenized --when in fact, it is a reaction to soy and dairy. Have you read about how we can so easily develop other food intolerances?

Also, as much as I hate the idea myself, some people may take up to two years to heal the damage in the gut. :unsure:

Do you live with gluten-eaters?
Do you work around foods with gluten?
I do not know your circumstances so I do not know what else may be contributing to your glutenings, despite your being so careful. Just offering some thoughts to you!

Your question about IgG numbers may be something you wish to post as a topic so that people can help you with their thoughts on that!
Best wishes!!
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#19 Kim69

 
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Posted 01 July 2011 - 08:57 PM

In reply about blood tests. I have recently had tests done 1 yr post dx on a gluten-free diet.

AGA IgG <10 (less than 20 is negative on this test) so happy days

T-glutaminase <5 (less than 5 is negative)

So both are negative. Over the past year I have had these tests a few times and they have shown a steady decline.

In November last year I had the following results:
Anti gliadin IgA <10 (0-20)
Anti gliadin IgG 22 (0-42)
Endomysial antibodies negative
T transglutaminase IgA <5

And in may 2010 just after I was biopsy dx Coeliac:
AGA IgA 10 (0-20)
AGA IgG 84 H (0-42) positive
Endomysial Ab positive
T transglutiminase >100 very positive!
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May 2010 Diagnosed coeliac via biopsy - on gluten-free diet, now not anaemic
March 2010 Still Anaemic and very fatigued, abdominal pain still (Drs had thought it was related to abdom operation)
May 2009 Anaemic - had abdominal surgery; hysterectomy to remove large fibroid
March 2009 Vestibular neuritus (not sure if related but who knows!)
November 2008 Depression (still on meds - working well)




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