How long did it take you Neuropathy symptoms to go away? LOOKING FOR STORIES OF HEALING so if you are still struggling please do not share

[ChantalTG]

Hi. I really need some positive support. I started getting neuropathy symptoms right at the moment I was diagnosed a month ago. My vitamin levels are all good and I have been 100% gluten free for 30 days. It isn't very painful but it can be overwhelming and extremely scary. Feels like a sunburn that rolls around my body. Face, hands, legs, arms. It goes up and down but never goes away completely. My biggest concern is that it is going to get worse. I am waiting to see a GI doctor and the neurologist for guidance. My GP really doesn't know anything. I cannot troll the internet looking for answers because it just sucks me into fear. I am looking for stories that will help uplift me and calm my anxiety which is through the roof. I am praying there are people in this group who can do this. So if you also had neuropathy and it has gone away I would love to know. If you are still struggling  please do not share here. Lets just let the good stories roll in to offer hope. Thanks you very much. 

[cristiana]

Hi Chantal

My neuropathy was predominantly tingling although I had some burning pain too at times.  I've also had buzzing sensations, raindrop sensations (except it wasn't raining) and some numbness on waking in my arms, which was put down to ulnar compression but seemed to recover with the rest of me.  Twitches too - eyes, face, calf muscles

I really thought it would never get better.  It did - it took a while as my TTG blood results were sky high initially - but got there in the end.   I'd say what little neuropathy I have I have got used to and don't even notice it.  TBH, I think the tingling I do still have may be down to a dodgy back or carpal tunnel problems and nothing to do with gluten these days.

Assuming you are being scrupulously gluten free, the other thing to address would be to discover if you have deficiencies.

Have you been tested for deficiencies?  Here in the UK they don't do many tests as standard but my B12 was borderline normal, which in some nations, such as Japan, would be deemed at below normal levels, so I supplemented with B12 tablets from Solgar, which dissolve in the mouth.  I took iron tablets which I was definitely deficient in.  I read lots of stories on this forum about magnesium helping with all the  twitches and it began to work quite quickly.  Also, check D levels - mine have actually gone down since being gluten-free so I have to supplement.  I think this is in part because I am outdoors less, but also that in the UK foods are often fortified but their gluten-free equivalents aren't.

Vitamin C is important too for healing.  Make sure you are getting enough of that.

Also, have your thyroid levels been tested - that can sometimes contribute to tingling, if you have it?

Cristiana

 

 

Edited May 4, 2023 by cristiana

[cristiana]

PS  Do make sure you aren't over-supplementing as I have read this can also cause symptoms, apart from being dangerous in many cases.   It is particularly important that you only supplement iron with doctor's supervision.

[Scott Adams]

I agree that certain vitamins and minerals can be toxic when taken in high doses for long periods.

I had gluten ataxia symptoms for over 20 years, and it wasn't until I began taking Magnesium Citrate and B1 that I began to find relief. I did not realize that I did need to supplement much more than I was, nor did my doctor discuss supplements with me whenever I complained about my neuropathy symptoms. More about this is here: