Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

High dosage of B12 gave me life.


ChessFox

Recommended Posts

ChessFox Apprentice

Thanks everyone for helping me out when I first suspected gluten and noticed dramatic improvement! 

So around that time about four months ago I introduced vitamins and just happened to have half a bottle of Vitamin D with Vitamin B12. About three weeks later I was processing and reading voraciously and with ease like never before. That little bottle ran out and I just assumed my multivitamin would be enough since it had a little B12 in it. Every few weeks my memory, concentration, and energy gradually deteriorated until I could not even read, listen to audio books, follow along in movies, etcetera. I finally connected the dots. I started taking a high dosage of B12 and many of my symptoms have completely gone. Here are some of them to see if others perhaps can identify with some of them: anxieties / fears, numbness and tingling in body, fatigue, poor memory and reflexes. Writing a little text message felt like climbing the highest mountain. The tingling did not happen until my early 30s. Everything just got progressively worse unfortunately. The body tingling is about 90% gone and the little that I have is hardly noticeable and does not distract me.

I would imagine many here have been affected by vitamin B12 deficiencies. So I am really interested to hear other experiences with this.

Additional information: currently on day eight and taking 2,000 mcg under the tongue.

 

Thanks again.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



Scott Adams Grand Master

I've experienced similar things when taking B12 supplements, and for me, especially improved memory. I think most celiacs should supplement B vitamins, especially B12, and take D as well.

ChessFox Apprentice

My memory is improving too. I can remember with greater detail some of my most meaningful ones. I am also taking D.

From what I have read B12 supplements can quickly reverse symptoms caused by the deficiency. Since I have gone so long with these symptoms I do not know if there is permanent damage like on my nerves. But I am going to do my best to not think about that until six months to a year of B12 and B complex treatment.

Beverage Rising Star

Hi. I also had big improvement by taking B-12, but not until I used the methyl form Methylcobalamin. I take this one as recommended by others here:

https://www.amazon.com/gp/product/B003BHUZ68/ref=ppx_yo_dt_b_search_asin_title?ie=UTF8&psc=1

My other big improvement, especially with asthma was B-1 Thiamine, as recommended by @knitty kitty , to use the fat soluble form. I experimented with a few different types, and benfotiamine worked the best for me:

https://www.amazon.com/gp/product/B07G7HPK39/ref=ppx_yo_dt_b_asin_title_o03_s00?ie=UTF8&psc=1

I had such problems, and it was hard to know what was doing what.  Now I take one new thing at a time, for a few weeks, before adding anything new.  If stopping something, wait at least 3 days before introducing anything else new.  Also keep a little log of what you are taking and what changes you notice. It can help, and is a good thing to have handy when talking with your doctor.

 

ChessFox Apprentice
On 9/8/2021 at 6:39 PM, Beverage said:

Hi. I also had big improvement by taking B-12, but not until I used the methyl form Methylcobalamin. I take this one as recommended by others here:

https://www.amazon.com/gp/product/B003BHUZ68/ref=ppx_yo_dt_b_search_asin_title?ie=UTF8&psc=1

My other big improvement, especially with asthma was B-1 Thiamine, as recommended by @knitty kitty , to use the fat soluble form. I experimented with a few different types, and benfotiamine worked the best for me:

https://www.amazon.com/gp/product/B07G7HPK39/ref=ppx_yo_dt_b_asin_title_o03_s00?ie=UTF8&psc=1

I had such problems, and it was hard to know what was doing what.  Now I take one new thing at a time, for a few weeks, before adding anything new.  If stopping something, wait at least 3 days before introducing anything else new.  Also keep a little log of what you are taking and what changes you notice. It can help, and is a good thing to have handy when talking with your doctor.

 

Thanks a lot Beverage. I am really happy for you that you made big improvements with B-12 and B-1.

I am currently taking the Methylcobalamin that you mentioned. It is really helping me with my fatigue, concentration, fears, and mild obsessive-compulsive behavior. My short-term memory is still worrisome. I cannot believe how many times I walk into rooms and completely forget why I am there. Or to jog my memory I have to intentionally walk into every room to see if there is something that actually needs to be done.

I want to start B-1 Thiamine today. I have been suffering from peripheral neuropathy but not just numbness and tingling in the extremities but nerves firing off all over the body. Over the last few years it is like their repertoire has expanded because sometimes the sensations are very soft, other times like little mosquito bites, and then sometimes swarms of bees buzzing under the skin in certain areas.

Yesterday, I was actually having a pretty good health day up until I ate smoked salmon. Quickly my nerve pain and activity went up at least 1000%. Apparently smoked salmon has sulfites which destroy thiamine. So that explains why I was in pretty bad shape right after consuming it.

Hopefully a high dose of B-1 Thiamine will help with other things too like memory, ability to handle stress, and more.

It is a tough pill to swallow sometimes because just like celiac disease certain vitamin deficiencies like B12 and B1 are not always the first thing family doctors think about. And I would imagine a lot of other celiacs, especially undiagnosed, have been suffering just like us with a lot of these symptoms. They do say strength and wisdom comes from struggle. That helps me in trying to make sense of all this.

Beverage Rising Star

I am now experimenting with another B vitamin...niacin. Naturopaths have long recommended the flushing form of niacin (nicotinic acid, not nicotinamide) to clear out atherosclerosis. My boyfriend has that really bad, had a heart attack and 4 way bypass, so we were trying it for him, and I started with it also.

I read some studies about flush niacin and some about melatonin as preventatives for Covid, used together, it's kind of amazing.  Also used in recovery after vax for those that had issues, and recovery for people that got Covid and have lingering problems (aka long haulers).  Covid apparently messes with tryptophan, which is part of the melatonin conversion.  This combination seems to be helping a lot of people.  I believe I have read people taking it for the nerve side effects with long haul Covid.  

I have not had Covid, but am trying it for prevention and overall health.  My BP has been improving with the other B vitamin things, but generally around 120's / 70's.  Last night it was 116 / 69 and I felt really relaxed like I used to when I was a young whipper snapper, and sleep is improving.  I've tried it off and on since June, but had some hard times with my kitties getting sick and having to put them to sleep 2 months apart. 

I am trying it again now consistently.  For some they take right before bed and they sleep amazingly.  That didn't work for me, I have problems taking B vits anytime after breakfast, can't sleep, like someone holding my eyes wide open.  My friend suspects I have that MTHFR thing (problem with energy into cells and can get agitated when the energy is not used properly).  So before breakfast or just after, I take the melatonin first, wait 10 minutes, then take the flush niacin.  Amazingly, the melatonin does not make me sleepy at all when done with the niacin.  I must say, I am feeling another boost up in energy, more than anything else I have tried. I am 65 and shoveled 3/4 yard of gravel yesterday, was not exhausted after, just a little tired, and not even sore today.

My friend that has MTHFR suggested the addition of Liposomal Glutathione for that. So that's what I'm going to try adding next.

ChessFox Apprentice

This is very interesting Beverage. I wish you and your boyfriend the best. That is really great that you are feeling the boost up in energy.

My peripheral neuropathy is getting a lot better. Yesterday I did eat way too many portions of vanilla ice cream. About every 10 to 14 days I sometimes crave something like this. I am trying to work on this. My peripheral neuropathy flared up immediately right after and lasted for quite some time. With a thiamine deficiency I have to really be careful with so much refined sugar. Everything is back to normal again.

I'm going to take a look at the flush niacin.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now

  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      125,880
    • Most Online (within 30 mins)
      7,748

    schussb
    Newest Member
    schussb
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.9k
    • Total Posts
      69k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • gregoryC
      Just finished my second celebrity cruise. My first was on one of their oldest ships, it was awesome! Now we have sailed on the edge class. Wow! Not only do they have so many gluten-free options but the selection is mind blowing! Any given day you will have between 5 to 7 different gluten-free cakes to try. Yes that is right, one day at the coffee shop I had to choose between 5 gluten-free cakes not including the several puddings on display. So they gave me a small piece of each. 2 were great, 2 were just good, and 1 I did not enjoy. But never have I had the tough decision of which cake to eat?  These selections are from their normal options available for all guest. In the main dining room they always surprised me with some awesome desserts.  In my opinion the best pizza was on the Millennium class and best buffet on the Edge class. Although these two ship vary in size they are both consistent and serving high quality food from the main dinning room. The edge class gives you 4 “main” dining rooms (all included). I was unsure how this would work with my gluten-free diet? It worked great! I was able to order or see the next night’s menu for each of the four dinning venues finding that very little to no modifications needed to be made due to their extensive gluten free options.  The Millennium and Edge class ships provide the best gluten-free options from any of the cruise lines I have sailed with. You will find a larger selection and options on the edge class ships, however you will not be disappointed with the smaller Millennium class. Which is still my favorite cruise ship to date.   
    • trents
      Welcome to the forum, @ABP! We can't comment on the test numbers you give as you didn't include the range for negative. Different labs use different units and different ranges. There are no industry standards for this so we need more information. If your daughter doesn't have celiac disease she still could have NCGS (Non Celiac Gluten Sensitivity) which some experts believe can be a precursor to celiac disease and is 10x more common than celiac disease. However, there is no test for it yet but it does share many of the same symptoms with celiac disease. Both require complete abstinence from gluten.  It is seldom the case during testing where all tests are positive, even for those who do have celiac disease. This is no different than when diagnosing other medical conditions and that is why it is typical to run numbers of tests that come at things from different angles when seeking to arrive at a diagnosis. It seems like you are at the point, since you have had both blood antibody testing and endoscopy/biopsy done, that you need to trial the gluten free diet. If her symptoms improve then you know all you need to know, whatever you label you want to give it. But given that apparently at least one celiac antibody blood test is positive and she has classic celiac symptoms such as slow growth, constipation and bloating, my money would be on celiac disease as opposed to NCGS.
    • ABP
      My nine-year-old daughter has suffered with severe constipation and bloating for years as well as frequent mouth sores, and keratosis Polaris on her arms. She also has recently decreased on her growth curve her % going down gradually.  After seeing a gastroenterologist, her IgG GLIADIN (DEAMIDATED) AB (IGG) was 22.4 while her IGA was normal. Her TISSUE TRANSGLUTAMINASE AB, IGA was 11.9.  Most recently her genetic test for celiac was positive.  After an endoscopy her tissue showed inflammation of the tissue as well as , increased intraepithelial lymphocytes (IELs) but there was no blunting of the change in the villi.    It seems that every result that we get one out of two things positive rather than all leading to an inconclusive diagnosis. While we do have another appointment with the doctor to go over the results. I'm curious based on this information what others think.    I would hate to have her eliminate gluten if not necessary- but also don't want to not remove if it is necessary.    Signed Confused and Concerned Mama
    • Scott Adams
      I guess using "GF" instead of "PL" would have been too easy! 😉
    • trents
      I was wrong, however, about there being no particular health concerns associated with high total IGA: https://www.inspire.com/resources/chronic-disease/understanding-high-iga-levels-causes-impacts/ So maybe the physician's "borderline" remark is relevant to that.
×
×
  • Create New...