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Question? Neuro Symptoms (Twitching + peripheral neuropathy)

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Sorry, I think I posted this in the wrong place a minute ago... I think I'm in the right forum now.

 

Hey everyone, 

New here. Always been a bread eater. About a year ago, I started developing terrible joint pain. Had to stop going to the gym (had been body building for 5+ years). I thought maybe giving my body a break would be the fix, but then I started getting terrible twitching that began in my quads and spread to all four limbs, stomach, face, inner ear (didn't know that was possible lol). Started freaking out thinking I had ALS and doctor google was helping. Anyway, then one day I woke up with terrible pain and weakness in my left arm. Went to spinal specialist and he said I had peripheral neuropathy (he noted weakness in arm). I was put on a heavy does of gabapentin (1800 mg per day) which helped with pain but did not resolve anything (and it made my work productivity go way down for 6 mo). anyway long story short, got two EMGs, saw too many doctors and was sent home the doctors saying I'm totally fine... 😕 They even sent me for a neck MRI... nothing... 

 

Finally, found some obscure case study of some guy who was celiac and had twitching/peripheral neuropathy. So I thought, "I'll try the diet thing." After a month gluten free, my arm pain completely resolved and my twitching reduced slightly. My full strength is almost completely back in my left arm and my joint pain has been reduced substantially. Back in the gym too :)

 

So 3 questions: 

 

1. Anyone else gets twitching/fasciculations related to celiac? 

 

2. Any recommend resources for adult onset celiac disease? 

 

3. This is probably a dumb question, but does this whole thing sound like celiac at all? I've been freaking out for year about all these symptoms and kinda just want to know what's going on and if anyone else has a similar story. 

 

Anyway, sorry for the long post! Thanks in advance for your input! 

 

Edit: Maybe worth mentioning. I'm 24. 

Also, Get terrible gut reactions literally every time I eat out. No problems if I watch diet at home and make sure there's no gluten in my meal. 

Also, slightly elevated liver enzymes. 

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For some people with gluten sensitivity or celiac disease it manifests primarily as a nerve disorder (see the link below for many scientific articles on this). By going gluten-free already, it will now be difficult for you to get screened for either (you need to be eating gluten daily for at least 6-8 weeks before any screening can be done). 

Be sure to discuss these symptoms with your doctor, as it could be something else, but certainly if the gluten-free diet has helped relieve symptoms the cause could be gluten sensitivity, and the gluten-free diet won't hurt you, just be sure to get enough fiber and overall good nutrition.

https://www.celiac.com/articles.html/celiac-disease-amp-related-diseases-and-disorders/ataxia-nerve-disease-neuropathy-brain-damage-and-celiac-disease/ 

You've found a great resource here, certainly there are others out there, but you could likely spend years on this site going through its many resources.

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Yes I get neuropathy and it will return if I am cc. I find I must ensure I get adequate b vitamins and on bad neuropathy day I take a b vitamin and sublingual b12

 

Good luck

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