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

Vertigo, Ataxia After gluten-free


ctenny

Recommended Posts

ctenny Rookie

I've been Gluten free for 3 and a half weeks. In my opinion, I've been pretty careful to only eat gluten-free products.

Just this past week, I've had vertigo a couple of times after sitting down/sitting up. I am also a college student and just during this past week have I noticed a couple times where I feel very uncoordinated and it feels as if my body is wobbly and with each step I have to additionally reassure myself to keep myself "up straight" so as not to fall over (left or right).

I had vertigo and ataxia a couple times before going gluten-free, but they were sporadic and few (maybe twice a month for vertigo but nearly daily for weird unbalanced walking).

Why do I still feel like I can't walk a staight line? I actually can walk a straight line but I have to focus on not teetering to the right or left.

What about the vertigo? Could it just be from vitamin deficiencies since going gluten-free? I think I'm eating a pretty balanced diet still.


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



Celiac.com Sponsor (A8-M):



Bubba's Mom Enthusiast

Gluten gives me that effect. I got some gluten-free deli lunch meat 6weeks ago that *might* have been cc? I've been dealing with the off-balance issue since then. It is getting less in intensity though. Neurological symptoms can take a while to heal.

Double check to make sure there's nothing that's sneaking into your diet.

ctenny Rookie

Thanks Bubba's Mom! I appreciate your answer. I suspect it may have been cc'd. It's a shame... as careful as you can be, you can never be totally sure you're always eating gluten-free and that's a bummer :( because I just want to heal!

red island Newbie

I've been gluten free for about 6 months, early on every time I got cc'd I would get neurologican symptoms which included vertigo and ataxia. Once I got the cc issues under control I went 3 months without any symptoms - just got contaminated 2 weeks ago and while I got the usual GI signs, no neuro symptoms at all! I wonder if the early symptoms were part of the leaky gut thing. And maybe as yours heals these symptoms will gradually disappear too? I hope that happens for you cause of all the discomforts I have suffered, I found the spaceyness and brain fog and vertigo etc to be the most difficult to deal with emotionally. Good luck.

AVR1962 Collaborator

Ataxia was one of my worst symptoms with the exception of nueropathy. I was dizzy everyday, all day for 9 months, like you explained being unsteady to walk and feel like you could fall over. It took REALLY cleaning up my diet and any chance of CC. I had to dig into every product I used to find the wheat.....I found it in my cooking spray, changed my chapstick. Stopped using my wooden butcher blocks and wooden spoons. Used only scrubable cookware. No toaster or pasta strainer. My husband and daughetr had to learn to never double dip into jars of mayo, jelly, etc. Cheese had to be cut on glass surface with clean hands and everyone had to use the same method to avoid crumbs. Once I did all that it took 4 weeks to get the ataxia to go away.

Also, I found I was getting vertigo from other foods......high fructose, the various gums like xanthan, carageenan so I had to stay away from all of them for 8 months while my system repaired. I can eat them now but I am still very careful.

Hope that helps!

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 Roses8721's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      8

      GI DX celiac despite neg serology and no biopsy

    2. - Roses8721 posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      0

      gluten-free Oatmeal

    3. - Roses8721 replied to Roses8721's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      8

      GI DX celiac despite neg serology and no biopsy

    4. - Scott Adams replied to Ginger38's topic in Related Issues & Disorders
      5

      Shingles - Could It Be Related to Gluten/ Celiac

    5. - Scott Adams replied to Xravith's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Challenges eating gluten before biopsy


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,472
    • Most Online (within 30 mins)
      7,748

    kygirlsusan
    Newest Member
    kygirlsusan
    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

    • trents
      Certainly, it would b wise to have a gene test done if your physician is open to it as it would provide some more data to understand what's going on. But keep in mind that the genetic test for celiac disease cannot be used as to diagnose celiac disease, only to establish the potential to develop active celiac disease. About 40% of the general population possess one or both of the primary genes known to be associated with the development of active celiac disease but only about 1% of the population actually develop active celiac disease. So, the gene test is an effective "rule out" tool but not an effective diagnostic tool.
    • Roses8721
      Had Quaker gluten-free oatmeal last night and my stomach is a mess today. NO flu but def stomach stuff. Anyone else?
    • Roses8721
      So you would be good with the diagnosis and not worry to check genetics etc etc? Appreciate your words!
    • Scott Adams
      As recommended by @Flash1970, you may want to get this: https://www.amazon.com/Curist-Lidocaine-Maximum-Strength-Topical/dp/B09DN7GR14/
    • Scott Adams
      For those who will likely remain gluten-free for life anyway due to well-known symptoms they have when eating gluten, my general advice is to ignore any doctors who push to go through a gluten challenge to get a formal diagnosis--and this is especially true for those who have severe symptoms when they eat gluten. It can take months, or even years to recover from such a challenge, so why do this if you already know that gluten is the culprit and you won't be eating it anyway?  Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS--but those in this group will usually have negative tests, or at best, elevated antibodies that don't reach the level of official positive. Unfortunately test results for celiac disease are not always definitive, and many errors can be made when doing an endoscopy for celiac disease, and they can happen in many ways, for example not collecting the samples in the right areas, not collecting enough samples, or not interpreting the results properly and giving a Marsh score.  Many biopsy results can also be borderline, where there may be certain damage that could be associated with celiac disease, but it just doesn't quite reach the level necessary to make a formal diagnosis. The same is true for blood test results. Over the last 10 years or so a new "Weak Positive" range has been created by many labs for antibody results, which can simply lead to confusion (some doctors apparently believe that this means the patient can decide if they want more testing or to go gluten-free). There is no "Weak Negative" category, for example. Many patients are not told to eat gluten daily, lots of it, for the 6-8 week period leading up to their blood test, nor asked whether or not they've been eating gluten. Some patients even report to their doctors that they've been gluten-free for weeks or months before their blood tests, yet their doctors incorrectly say nothing to them about how this can affect their test, and create false negative results. Many people are not routinely given a total IGA blood test when doing a blood screening, which can lead to false negative interpretations if the patient has low IGA. We've seen on this forum many times that some doctors who are not fully up on how interpret the blood test results can tell patients that the don't need to follow a gluten-free diet or get more testing because only 1 of the 2 or 3 tests done in their panel is positive (wrong!), and the other 1 or 2 tests are negative.  Dermatologists often don't know how to do a proper skin biopsy for dermatitis herpetiformis, and when they do it wrongly their patient will continue to suffer with terrible DH itching, and all the risks associated with celiac disease. For many, the DH rash is the only presentation of celiac disease. These patients may end up on strong prescriptions for life to control their itching which also may have many negative side effects, for example Dapsone. Unfortunately many people will continue to suffer needlessly and eat gluten due to these errors in performing or interpreting celiac disease tests, but luckily some will find out about non-celiac gluten sensitivity on their own and go gluten-free and recover from their symptoms. Consider yourself lucky if you've figured out that gluten is the source of your health issues, and you've gone gluten-free, because many people will never figure this out.    
×
×
  • 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.