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

Tingling, Buzzing And Twitching


cristiana

Recommended Posts

cristiana Veteran

Hello All

 

Well it is nearly two years now since my gastro symptoms started, although I think I could say that before that I had tingling in my fingers, buzzing on the back of my legs, twitching in my face, for about six months - minor but annoying.  I was then diagnosed with celiac disease in the Spring of 2013. My blood iron and B12 levels were very low so I took supplements, plus magnesium and cod liver oil and all this nerve stuff faded, with a few blips en route.  

 

Odd thing some of this tingling and buzzing has started up again over the last three weeks although the twitching hasn't (yet!).    I am as strict as I can be with avoiding gluten.  The only thing that is happening at the moment is I am going through a raft of tests for other conditions and I do feel a bit edgy about them at times.  Do you think anxiety in itself can reignite old nerve problems?  Is there anyone out there who gets this nerve stuff come back from time to time?  

 

In case of interest, I have had some MRIs on my brain and spine since DX which were all entirely normal.

 

Thanks.


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



Celiac.com Sponsor (A8-M):



icelandgirl Proficient

Hi Cristiana,

I think that stress and anxiety can bring out our physical ailments or make the existing ones worse. That's been my experience at least.

I have also had tingling in my feet, toes and fingers. I always wonder if it has something to do with my thyroid because that thing is having issues.

Have you had your b12 and ferritin levels checked recently? If not it might be worth having them checked.

In the meantime, take good care of yourself...a nice Epsom salt bath with a good book is my favorite. Or go for a nice walk or just whatever feels good to you.

It does feel, to me at least, that there is always something.

(((Hugs)))

cristiana Veteran

Do you know, Icelandgirl, there is always something!  I think I shall change my user name to alwayssomething.   Just back from hospital tests on Friday, looking forward to a bit of a breather until the next blood tests, and then this buzz in my face starts up again!  And in my legs! I am thinking I will go private to get my iron and B12 checked again.  My nutritionalist told me when my B12 level wasn't improving much with supplements that she was surprised I wasn't offered an injection just to get me started back on the right track.  I have lapsed with the sublinguals so perhaps it is time to take them again, religiously.  Thank you for your tip about the bath with Epsom salts, that sounds a really good idea too.

icelandgirl Proficient

If you do that I shall change mine to alwayssomethingtoo. Because that's what it feels like! I do think getting the levels checked is a smart idea. If they're low you know that supplementing can help. I get very annoyed with my tingling when it becomes pronounced...it can be hard to ignore.

janpell Apprentice

Do you get all over tingling? Do you have inflammation that may be compressing nerves in that area? When my knee swells I get tingling down my leg because I think my nerves are compressed. I hate it so much. I find if I eat too many sweets (had a prune binge over a couple of days) and noticed an eye twitch during this time. I am staying away from fruit all day and so far so good - I don't really eat sugar but over indulge in some natural sweets at times and get bothered by even that. I have no idea where any of this comes from but my own conclusions what is happening with me.

cristiana Veteran

janpell... hi.  Not all over tingling.  The ball of my left foot, around the ankle; sometimes in the toes (left and right); sometimes up the back of my left calf; a spot on my right calf; I sometimes wake up feeling my fingers have gone to sleep (I do have a DX for carpel tunnel and ulnar compression but some days are definitely worse than others) and the odd twitch and buzz on my face.   I took a good dose of magnesium the other day and the facial twitching ended overnight. Maybe it is partly inflammation, not sure?  I think malabsoption might also be the cuprit - and as icelandgirl says - stress.  One phenomenon I have noticed is since around DX if I get pins and needles, say, after kneeling for a while or sitting in a bad position, it takes much longer to recover.  I asked a clinical neurologist about this and he says after having had all these deficiencies our nerves start to complain.   I am beginning to think that my gut can't have healed as well as I'd hoped if my nerves are still complaining!  

  • 3 weeks later...
MomBTired Newbie

Read about small fiber neuropathy. My son has the automatic one. His neuromuscular doctor told us that many people who have celiac end up with this form of neuropathy.

 

Open Original Shared Link


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



Celiac.com Sponsor (A8-M):



cristiana Veteran

Hi MomB - thanks for sharing.  Apart from all the other things I mention, I have noticed that for about a year now I have found it really painful on one side of my body if I wear tight clothing.  I thought it might be shingles without the rash - a line along my chest to my spine on the left, it has really hurt to the point of it feeling almost like a burning sensation.  I had the same thing on my left hip round to my spine.  If I wear tight waistband or bra I still feel bruised there.   It is a pain which gets worse as the day goes on, I don't have it at night but at night I wear loose pyjamas.   I wish I knew what it was caused by - celiac, shingles.  All I know is I didn't have it pre-diagnosis!

  • 1 month later...
cristiana Veteran

Back on this topic, again.  I am thinking about going back to my doctor as I do think I have small fibre neuropathy symptoms returning to the levels I had at DX -   MomBTired's posted link has really made me think.   I guess I could have blood sugar issues but I am not so sure.  In recent months I have stopped supplementing and the tingles and buzzes have got worse.  However, in the last couple of weeks this has prompted me to go back on magnesium, B12 and other B vitamins and I believe I am already feeling the benefit.

 

I have also found the following link helpful and I realise, in reading it, I need to go back to trying to get more calcium in my diet, too.  Posting all this in case it is of help to anyone else.

 

Open Original Shared Link

icelandgirl Proficient

That was a good read Cristiana. I wonder sometimes if I'm getting the right nutrients. Besides cutting out gluten and soy, I'm very dairy light. I don't know if I get enough calcium or magnesium or any of the B's. So much of the gluten food I used to eat was fortified with all of this. If you look at the breads, cereals, pastas that contains gluten they have a lot of vitamins and minerals. Most of the gluten free ones don't. So...how do we know if we're getting enough? I don't know. Thanks for sharing that...lots to think about.

cristiana Veteran

I don't understand why gluten-free alternatives aren't fortified in the way that mainstay stuff is, such as bread and cereals, here in the UK.   I am sure we need the vitamins more than the average person!

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. - trents replied to Matthias's topic in Coping with Celiac Disease
      1

      Unexpected gluten exposure risk from cultivated mushrooms

    2. - Matthias posted a topic in Coping with Celiac Disease
      1

      Unexpected gluten exposure risk from cultivated mushrooms

    3. - trents replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      9

      how much gluten do I need to eat before blood tests?

    4. - Scott Adams replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      IBS-D vs Celiac

    5. - Scott Adams replied to Amy Barnett's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Question

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

    • Total Members
      133,324
    • Most Online (within 30 mins)
      7,748

    mao5617
    Newest Member
    mao5617
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Who's Online (See full list)

    • There are no registered users currently online
  • Upcoming Events

  • Posts

    • trents
      Welcome to the celiac.com communiuty, @Matthias! Yes, we have been aware that this can be an issue with mushrooms but as long as they are rinsed thoroughly it should not be a problem since the mushrooms don't actually incorporate the gluten into their cellular structure. For the same reason, one needs to be careful when buying aged cheeses and products containing yeast because of the fact that they are sometimes cultured on gluten-containing substrate.
    • Matthias
      The one kind of food I had been buying and eating without any worry for hidden gluten were unprocessed veggies. Well, yesterday I discovered yet another pitfall: cultivated mushrooms. I tried some new ones, Shimeji to be precise (used in many asian soup and rice dishes). Later, at home, I was taking a closer look at the product: the mushrooms were growing from a visible layer of shredded cereals that had not been removed. After a quick web research I learned that these mushrooms are commonly cultivated on a cereal-based medium like wheat bran. I hope that info his helpful to someone.
    • trents
      I might suggest you consider buckwheat groats. https://www.amazon.com/Anthonys-Organic-Hulled-Buckwheat-Groats/dp/B0D15QDVW7/ref=sr_1_4_pp?crid=GOFG11A8ZUMU&dib=eyJ2IjoiMSJ9.bk-hCrXgLpHqKS8QJnfKJLKbKzm2BS9tIFv3P9HjJ5swL1-02C3V819UZ845_kAwnxTUM8Qa69hKl0DfHAucO827k_rh7ZclIOPtAA9KjvEEYtaeUV06FJQyCoi5dwcfXRt8dx3cJ6ctEn2VIPaaFd0nOye2TkASgSRtdtKgvXEEXknFVYURBjXen1Nc7EtAlJyJbU8EhB89ElCGFPRavEQkTFHv9V2Zh1EMAPRno7UajBpLCQ-1JfC5jKUyzfgsf7jN5L6yfZSgjhnwEbg6KKwWrKeghga8W_CAhEEw9N0.eDBrhYWsjgEFud6ZE03iun0-AEaGfNS1q4ILLjZz7Fs&dib_tag=se&keywords=buckwheat%2Bgroats&qid=1769980587&s=grocery&sprefix=buchwheat%2Bgroats%2Cgrocery%2C249&sr=1-4&th=1 Takes about 10 minutes to cook. Incidentally, I don't like quinoa either. Reminds me and smells to me like wet grass seed. When its not washed before cooking it makes me ill because of saponins in the seed coat. Yes, it can be difficult to get much dietary calcium without dairy. But in many cases, it's not the amount of calcium in the diet that is the problem but the poor uptake of it. And too much calcium supplementation can interfere with the absorption of vitamins and minerals in general because it raises gut pH.
    • Scott Adams
      What you’re describing really does not read like typical IBS-D. The dramatic, rapid normalization of stool frequency and form after removing wheat, along with improved tolerance of legumes and plant foods, is a classic pattern seen in gluten-driven disease rather than functional IBS. IBS usually worsens with fiber and beans, not improves. The fact that you carry HLA-DQ2.2 means celiac disease is absolutely possible, even if it’s less common than DQ2.5, and many people with DQ2.2 present later and are under-diagnosed. Your hesitation to reintroduce gluten is completely understandable — quality of life matters — and many people in your position choose to remain strictly gluten-free and treat it as medically necessary even without formal biopsy confirmation. If and when you’re ready, a physician can help you weigh options like limited gluten challenge, serology history, or documentation as “probable celiac.” What’s clear is that this wasn’t just random IBS — you identified the trigger, and your body has been very consistent in its response.
    • Scott Adams
      Here are some results from a search: Top Liquid Multivitamin Picks for Celiac Needs MaryRuth's Liquid Morning Multivitamin Essentials+ – Excellent daily choice with a broad vitamin/mineral profile, easy to absorb, gluten-free, vegan, and great overall value. MaryRuth's Liquid Morning Multivitamin – Classic, well-reviewed gluten-free liquid multivitamin with essential nutrients in a readily absorbable form. MaryRuth's Morning Multivitamin w/ Hair Growth – Adds beauty-supporting ingredients (biotin, B vitamins), also gluten-free and easy to take. New Chapter Liquid Multivitamin and New Chapter Liquid Multivitamin Orange Mango – Fermented liquid form with extra nutrients and good tolerability if you prefer a whole-food-based formula. Nature's Plus Source Of Life Gold Liquid – Premium option with a broad spectrum of vitamins and plant-based nutrients. Floradix Epresat Adult Liquid Multivitamin – Highly rated gluten-free German-made liquid, good choice if taste and natural ingredients matter. NOW Foods Liquid Multi Tropical Orange – Budget-friendly liquid multivitamin with solid nutrient coverage.
×
×
  • 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.