[beatle]

I just went to a new doc who is testing me for Celiac. I don't know that I have it but I was surprised to learn its link to PN.

http://www.neuropathy.org/site/News2?id=8201

Neurological disorders are estimated to occur in 6-10% of patients with celiac disease with peripheral neuropathy and ataxia being the most frequently described. The peripheral neuropathy associated with celiac disease is most commonly sensory and axonal. The small sensory fibers are frequently affected and a small fiber neuropathy can be diagnosed by skin biopsy. Sometimes patients can develop a more severe generalized or multifocal neuropathy with weakness and sensory loss or with autonomic neuropathy symptoms.

[Lara]

There is a lot of info regarding neurological conditions and Celiac on this page from the Gluten Sensitivity & Celiac Disease Forum here at NT.

http://neurotalk.psychcentral.com/thread1872.html

[beatle]

Thanks Lara. Is the information there current? I see the thread was created in 2006 and the most recent post was over five years ago.

I was not aware of a neurological link to celiac disease. I didn't know that one in 133 Americans are at risk yet only one in 4,700 are diagnosed.

I have supposedly had every test (over 2.5 years) and everything has been ruled out. Apparently not. It may not be my cause, but it is somebody's cause. Those with idiopathic PN should be tested.

https://www.foundationforpn.org/livi...iacdisease.cfm

[Lara]

Hi beatle

I am pretty sure she keeps the info. on her linked site up to date. It's at the very top of that post I left earlier.
I note an update in there for 2014 but haven't double checked all her info there in ages.
https://sites.google.com/site/jccglutenfree/

[mrsD]

Yes, we had a member here who moved to the celiac community, who had gluten induced PN.

This is why I continue to suggest it to newbies here. I also keep to a gluten free life (with only very occasional cheats), but I also have GI problems to reinforce me to it.

If anything, the evidence mounts since Cara made her website, and not the reverse. Her youngest daughter had a seizure disorder that resolved by stopping gluten.

There are many articles on Google like this one:
http://www.neuropathy.org/site/News2?id=8201

[beatle]

My three neuros and two MD's never brought it up while assuring me that we have "checked everything", "ruled everything out" and that we will probably "never know the cause". These are all things that I have been told.

But I never considered it either. I didn't realize it can cause nerve pain, numbness and bone loss, that it can develop later in life and that the hallmarks can present well after the symptoms of PN.

Even if I don't have it, I know I need to keep searching in spite of what I have been told. Thank you again Mrs D for inspiring me to keep going and to be open to possibilities.

[jenng]

I was tested for celiac both blood and biopsy during a colonoscopy. Negative on both. But I've gone gluten free and cut back severely on sugar because I keep reading about gut health and immunity and all that. I need to know I've done what I can to hopefully heal some nerves and feel better. I so miss all my sweets though!

[mrsD]

Just to be more clear....

There is real genetic Celiac... which can be identified with specific blood antibody tests, and DNA markers. The endoscopic test is really not necessary for most people. And given that the news about contaminated endoscopes with drug resistant bacteria being reported now, I'd avoid an endoscope if the blood work shows issues alone.

But the gluten intolerant people, may not test positive with the blood work.Theirs is considered "acquired", for the most part.

The Gluten File is maintained on Google by Cara and has all the newest stuff on it that gets published.

https://sites.google.com/site/jccglutenfree/

[beatle]

My new doctor ordered a celiac panel yesterday. Mrs D, do you think it would be better to consume my normal diet leading up to the test so that any antibodies would be detected or should I refrain from consuming gluten?

[mrsD]

Oh, yes, you have to be consuming gluten for things to show up.

So don't go gluten free before testing. The DNA results should not be affected, but the antibodies will change if gluten is not being consumed.