B12 and neurological issues

[Hawk4]

I posted a month or so ago because I was experiencing increasingly concerning neurological impacts post diagnosis (diagnosed January 2024).  Sharing in case this helps someone else.

About 2-3 months after diagnosis, I started experiencing buzzing and other sensations in my toes, and then in my fingers. I experimented with diet, but the symptoms continued to increase, and I had a few dizzy spells.  After initially hitting a brick wall in my efforts with my HMO, I did some research, including on this site. This led me to, among other things, B12.  (All other aspects of celiac were resolving, including my tTg-IgA values, which, while still high, had dropped significantly.)

I had been taking high quality B-complex supplements (tablets), which included B12 as methylcobalamin, since my diagnosis in January (along with D and some other stuff).

In July, I switched to a liquid sublingual B12, as methylcobalamin and adenosylcobalamin.  I started feeling better in two weeks. A month out, my symptoms have almost fully resolved; my energy level has increased; and a sense of well-being has returned.   This is the B12 I switched to: Vimergy USDA Organic B12, 30... https://www.amazon.com/dp/B07HS2T8FS

I’m grateful for this site, and other patient oriented sites, that provide critical information when issues seem to go beyond the basic care that celiac requires. Now that I have read up on absorption issues and obtained a higher level of care at my HMO, I suspect that many older adults diagnosed as adults with celiac may benefit from sublingual B12 as methycobalamin.

I think celiac treatment has to progress beyond simply a direction to stop eating gluten, and basic nutritional evaluation and supplementation.  And with all the resources directed to pediatric cases, some specialized approaches for older adults would be beneficial.

[Scott Adams]

Thank you for the update, and I hope you've seen improvement in your symptoms. Note that B vitamins work together in tandem--to be most effective you may want to consider taking a B complex.

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.

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