Peripheral neuropathy

[Andrew West]

Hi everyone,

I was diagnosed with celiac a year ago, and my digestive symptoms have improved with the gluten-free diet (despite now having some IBS which appears stress related). However, I have also had peripheral neuropathy (tingling and burning feet, more often in the evenings when my feet are up) for a few years.

The PN seemed to be getting better until July, when it got worse. And yesterday while eating out I noticed it quite suddenly, as soon as I was eating. 

I have been taking a B-complex and a Vitamin C + Zinc supplement. Can anyone advise on a few things?:

- can being glutened trigger neuropathy immediately? (Perhaps that happened yesterday)

- should I try Magnesium, Vitamin D3, and/or additional Vitamin Bs? (In my current complex B1 is 50mg, B6 is 50mg, B12 is 50mcg)

- the internet says too much B6 can cause PN. Is 50mg too much?

- does anyone try capsaicin cream, lidocaine or other topical treatments for PN (mine is not really painful, just uncomfortable)

Thanks!

[trents]

Welcome to the forum, Andrew!

Your current B-complex has plenty of B6 but I doubt too much. It would not hurt to add in a sublingual B12 as the amount of B12 in your current B-complex is quite small. I would add in 5000 IU of D3 and magnesium glycinate or citrate (not magnesium oxide).  Magnesium oxide is the most common form you will find on store shelves but it is not absorbed well and therefore can easily cause diarrhea. Sublingual B12 is absorbed much better than that which is swallowed. If you have Costco near you, their Kirkland Signature and NatureMade line of vitamins and supplements are good choices and most are gluten free if not all. It will clearly state so if it is on the packaging or bottle.

Do you eat out often? Eating out is the number one way to sabotage a gluten free diet. May we ask what is your age? Were you experiencing PN prior to your celiac diagnosis?

I am also including this link as I wonder how thorough you are being with your gluten free diet:

Gluten exposure can come not only through foods but thorough personal hygiene products and pills.

Edited August 26, 2023 by trents

[Scott Adams]

Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months.

Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal.

This article may be helpful:

 

The most common nutrient deficiencies associated with celiac disease that may lead to testing for the condition include iron, vitamin D, folate (vitamin B9), vitamin B12, calcium, zinc, and magnesium.  Unfortunately many doctors, including my own doctor at the time, don't do extensive follow up testing for a broad range of nutrient deficiencies, nor recommend that those just diagnosed with celiac disease take a broad spectrum vitamin/mineral supplement, which would greatly benefit most, if not all, newly diagnosed celiacs.

Because of this it took me decades to overcome a few long-standing issues I had that were associated with gluten ataxia, for example numbness and tingling in my feet, and muscle knots--especially in my shoulders an neck. Only long term extensive supplementation has helped me to resolve these issues.

 

 

 

[Andrew West]

Thanks Scott & trents.

I am 50 and the PN started about 18 months before my celiac diagnosis, although I have had leg twitches and restless legs while sleeping for years. 

I've been very careful with the diet and limit my eating out to a few places I trust, but I recently tried adding a Vietnamese place which may not have worked (although I find it very difficult to know as I don't have any immediate gut issues)

I've picked up some of those supplements you recommended and will have to keep a closer watch for other intolerances.

Thanks for the help!

 

 

[Scott Adams]

For me magnesium citrate helped with my RLS issue.