Jump to content
  • 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

What Is Causing The Numbness


holdthegluten

Recommended Posts

holdthegluten Rising Star

I have been having numbness and weakness in my legs,feet,arms,and hands. What is causing this tingly feeling? Its kind of scary. Any info. I dont have any nutritional deficincies. My tests all looked good. I got glutened about a week ago.


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



Celiac.com Sponsor (A8-M):



wowzer Community Regular

It could be from getting glutened. That went a way for me when I went gluten free. I will get the tingling if I get glutened. I hope it goes away for you soon. Wendy

Betty in Texas Newbie

I know how you feel I was having this for about a year and finally figured it out. I started taking 500 mg of B12 letting it melt in my mouth. About a month it has all gone a way. It was bad it would wake me up in the middle of the night and I would be shaking my hand trying to get the feeling back in it my husband thought maybe I was loosing it but he under stands . He is just so happy I finnaly found out what was causing it . I am 55 and found out I celiac 3 years ago lot of suffering. Hope this helps I dont go to a lot of Drs. I try to figur it out on my own since I don't have insurance any more since it went to a $ 1,000 a month could't afford that. But I will be fine and I hope you start felling better.

ravenwoodglass Mentor
I have been having numbness and weakness in my legs,feet,arms,and hands. What is causing this tingly feeling? Its kind of scary. Any info. I dont have any nutritional deficincies. My tests all looked good. I got glutened about a week ago.

This is a result of your glutening. The suggestion to start taking sublingual B12 is a good one. It should help. If your B12 levels are down, and different folks feel this lack at different levels, mine was still over 200 but I was having severe symptoms at diagnosis. My doc considered this an OK level but by looking through my old labs I discovered that it had been dropping from about 500 steadily over a couple years.

Also if your celiac presentation has neuro features often these will show up full force when glutened. These neuro features can mimic symptoms for disease like MS, in fact many of us go through a lot of tests for MS and some are misdiagnosed with it from the symptoms alone. It will resolve once the neurotoxin is out of your system.

Hopefully this will pass for you quickly. Try to eat as much whole unproccessed food as you can for a bit while you heal that will help. Feel better soon.

darlindeb25 Collaborator

When doing bloodwork, you must ask for a B12 count or they don't even check it. Then, if the doctor tells you it is in the normal range, then you probably need more. The normal range is much lower than your B12 should actually be. You can't really get too much B12, your body eliminates what you do not need daily. I take 2400mcg daily, the recommended daily 100% value of B12 is 6mcg, which is nothing. I take 40,000% of the daily recommended value. I do have neuropathy and I honestly think the additional B12 has slowed the progression.

Once you have a B12 deficiency, you will always need to take additional B12. I started out at 1200mcg and my B12 level at testing was 1237 with the ranghe being 200-1100. No one told me you must stop taking your B12 several days before testing to get a true level.

If the numbness and weakness continues, ask your doctor to order a nerve conduction test, or a doppler for neuropathy. It's fairly painless, just some little shocks.

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - xxnonamexx replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      45

      My journey is it gluten or fiber?

    2. - JoJo0611 posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      0

      Yeast extract

    3. - trents replied to Seabeemee's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Labs ? Awaiting in person follow up with my GI

    4. - Seabeemee posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Labs ? Awaiting in person follow up with my GI

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,166
    • Most Online (within 30 mins)
      7,748

    rgfeeg
    Newest Member
    rgfeeg
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • xxnonamexx
      Thanks bumped it up and now take all 3 vitamins 2 capsules each with the super b complex at breakfast. I will give it some time to see if I notice a difference. I am going to track my eating daily diary on a myfitness pal app to see if the "claimed" gluten free foods bother me or not.
    • JoJo0611
      Please can anyone help. I was diagnosed on 23rd December and I am trying my best to get my head around all the things to look out for. I have read that yeast extract is not to be eaten by coeliacs. Why? And is this all yeast extract. Or is this information wrong. Thanks. 
    • trents
      Welcome to the celiac.com community, @Seabeemee! The fact that the genetic testing shows you do not have either of the two genes associated with the potential to develop celiac disease (HlA DQ2 and HLA DQ8) pretty much ensures that you do not have celiac disease and the biopsy of the small bowel showing "normal villous architecture" confirms this. But you could have NCGS (Non Celiac Gluten Sensitivity) which would not damage the villous architecture. You could also have SIBO (Small Intestine Bacterial Overgrowth) or H. Pylori infection. Both of these conditions would thrive on carbs and you do say you feel better when you don't eat a lot of carbs. And with your resection of the small bowel, that could be causing it's own problems like you describe. When was that surgery done? You have had over 1 foot of your small bowel removed by that surgery in 2022 so that would certainly challenge digestion and nutrient absorption.  Edited
    • Seabeemee
      My Doctor messaged me that I have no sign of Celiac disease so until I meet with her next week I don’t know what the labs mean. I am being evaluated by my new GI for Celiac disease because of digestive issues (bloating, distention, fullness in mid section, diarrhea).  I also have been diagnosed with GERD and some associated issues hence the endoscopy. I also was diagnosed with NAFLD after an abdominal CT scan in December - which surprises me because I gave up alcohol 5 years ago, workout 5 days a week, cardio / weights and cook from scratch every night. Anecdotally,  I do feel better when I do not eat a lot of carbs and have been staying away from gluten 95% of the time until my follow up.  History: I had an emergency bowel obstruction operation in August 2021 for a double closed loop obstruction, open surgery removed 40 cm of my small intestine, my appendix, cecal valve and illeocectomy. Beside the fact that this put me in the situation of no longer being able to absorb Vitamin B12  from my diet and having to  inject Vit B 12 2x a month, I also became Iron deficient and am on EOD iron to keep my levels high enough to support my Vitamin B12 injections, as well as daily folic acid. I tested positive for pernicious anemia in 2022 but most recently that same test came back negative. Negative Intrinsic Factor. My results from the biopsies showed 2nd part of Duodenum, small bowel Mildly patch increased intraepithelial lymphocytes with intact villious architecture. Comment: Duodenal biopsies with normal villous architecture and increased intrepithelial lymphocytes (Marsh I lesion) are found in 1-3% of patients undergoing duodenal biopsy, and an association with celiac disease is well established however the specificity remains low. Similar histologic findings may be seen in H pylori gastritis, NSAID and other medication use including olmesartan, bacterial overgrowth, tropical sprue and certain autoimmune disorders. So my GI ordered Labs for Celiac confirmation: Sorry I couldn’t upload a photo or pdf so typed below: TEST NAME                               IN RANGE and/or RESULTS RESULTS:  IMMUNOGLOBULIN A :           110 GLIADIN (DEAMIDATED) AB (IGG, IGA)                            <1.0 GLIADIN (DEAMIDATED) AB (IGA)                                     <1.0 GLIADIN (DEAMIDATED) AB (IGG)                                    <1.0 TISSUE TRANSGLUTAMINASE ANTIBODY, IGG, IGA TISSUE TRANSGLUTAMINASE AB, IGG                                     <1.0 TISSUE TRANSGLUTAMINASE AB, IGA                                     <1.0 INTERPRETATION: <15.0 ANTIBODY NOT DETECTED  > OR = 15.0 ANTIBODY DETECTED RESULTS: HLA TYPING FOR CELIAC DISEASE INTERPRETATION (note The patient does not have the HLA-DQ associated with celiac disease variants) More than 97% of celiac patients carry either HLA-DQ2 (DQA1*05/DQB1*02) or HLA-DQ8 (DQA1*03/DQB1*0302) or both. Genetic counseling as needed. HLA DQ2 : NEGATIVE HLA D08: NEGATIVE HLA VARIANTS DETECTED: HLA DA1* : 01 HLA DA1* : 05 HLA DQB1*: 0301 HLA DQB1*: 0501 RESULTS REVIEWED BY: Benjamin A Hilton, Ph.D., FACMG I appreciate any input, thank you.         
    • trents
      Let me hasten to add that if you will be undergoing an endoscopy/biopsy, it is critical that you do not begin efforts to reduce gluten beforehand. Doing so will render the results invalid as it will allow the small bowel lining to heal and, therefore, obscure the damage done by celiac disease which is what the biopsy is looking for.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.