Whole body numbness is getting worse. Gabapentin used to help but does not now. Neurologist says it is progressing Parkinsons?

[gl2238]

Numbness no longer helped by Gabapentin

[PDGal4]

I have experienced numbness in my feet and calves, to the point sometimes where walking felt like an act of faith as I could not feel my feet. My hands were numb at times as well.Prior to pandemic, went to acupuncturist, which helped a lot, but do not feel comfortable going now.

Earlier into my diagnosis (8.5 years ago), I ate gluten free for about 9 months and felt better. I was on and off for years. I love food so when we traveled, I ate local cuisine gluten and all. I read recently that in people with gluten intolerance (for which there is no test), gluten can cause numbness. I asked the neurologist about this, and he said celiac disease can cause neuropathy, but there's no evidence otherwise. He's somewhat open minded, but clearly doesn't believe in gluten intolerance.

I've been back eating gluten free since June of this year and numbness is pretty much gone. It takes (according to my acupuncturist, very much in favor of my eating gluten-free) several months to completely clear your body of gluten and there's no such thing as occasionally eating, like sugar on a low sugar diet. I can pass on bread but love pasta, but that has improved immensely from several years ago--even gluten free pastas imported from Italy. And my favorite Italian restaurant makes gluten free pizza.

My experience.

[bookish in reply to PDGal4]

Hi. I'm glad that, like me, you have had improvements from going gluten free. I don't have Parkinson's, but it has been in the family and I suspect relatives would have benefited from GF. I would say that there are things that can be tested in gluten intolerance (although I haven't used them) but you have done the main test - you feel better without it. Unfortunately I actually needed to be grain free (completely) and can't tolerate the pasta substitutes, but I'd much rather ditch the lot than feel so ill, so I have. Quite an achievement for a wheat addicted foodie.

Coeliac testing is good for late stage disease with lots of villi damage but misses too many with earlier stage disease. Genetic testing is a possibility, HLA DQ2 is a marker for Coeliac but some have DQ8 instead or as well. Other types of gluten related disorders can additionally show those two, but also DQ1 and DQ3. (Others may also be involved but not yet identified as far as I know). The genes of course still need to express, this only shows a predisposition, but some suggest long-term monitoring at least of those with the genes. If still eating gluten there is also a whole bunch of Cyrex tests, wallet permitting, looking at IgA and IgG antibodies in blood or IgA and IgM in saliva, for fractions of gluten and transglutaminases. Stress and infections or viruses are common triggers to kick your predisposition into 'actual' - EBV for example is associated as causatory for Coeliac, like several other autoimmune conditions. The common figure seems to be 1 in 100 for Coeliac, although we are sure that many are missed (and many stop eating the gluten before testing can be fully done, so never get a definite answer - like me) but as high as 1 in 7 possibly for Non-Coeliac Gluten Sensitive, which is rather a lot of people who may have an issue and simply don't know.

Best wishes

[beehive23]

as the sympathetic and parasympathetic nervous system starts to go peripheral neuropathy sets in.

Peripheral Neuropathy and Parkinson’s: The Connection

parkinsonsdisease.net/answe....

[JayPwP]

Sorry to hear that you're feeling unwell.

Please do deep breathing, bellows breath and alternate nostril breath. Or join a yoga class.

It is something you can do, is in your control and there are many regenerative benefits of oxygenating the body.

[Somic67]

It may be too much meds for too long. You may need a body or periferal nervous system detox session.