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

Diagnosed with potential Guillain Barre could it be celiac related?


Nattific

Recommended Posts

Nattific Newbie

Hello, I am 24, and I got officially diagnosed a few months ago, but I'm nearly positive I've had celiac since childhood. I noticed that with a lot of my reactions, I would have neurological symptoms- dizziness, brain fog, issues with coordination- but it would always go away the farther I got from the reaction. Well, 4 weeks ago, I had my first big exposure in two years. I got a salad from work, asked for grilled chicken, they put breaded chicken on, and put on a lot of dressing, so I couldn't tell until I was bout 50% finished eating it. I had all my regular miserable symptoms, diarrhea, vomiting, bloating, joint pain- all the works. But then, right around when the GI symptoms stopped, I developed neurological symptoms. I started feeling dizzy, and then the dizziness progressed to numbness in my legs, then weakness to the point that I fell down stairs. After I fell, I went to the ER, and now I have been admitted with Guillain-Barré. I developed paralysis and lots of issues with my cranial nerves. At its worst, my paralysis went up to my knees, but after 5 days of IVIG treatment, I'm now no longer paralyzed in my legs, just incredibly weak and struggling to walk. The problem is that a lot of my tests are coming back normal, which I'm told can happen with Guillain-Barré, especially this early, so that's my diagnosis, but the other differential diagnosis is "functional neurological disorder." So if my EMG test winds up being negative, it looks like that will be my diagnosis.  I'm wondering if it winds up not being Guillain-Barré, if this could be a rare form of neurological involvement of celiac disease? I don't really agree with the functional neurological disorder differential, as I have no preexisting mental health problems, i actively meditate, go to therapy, and am genuinely a quite calm and pleasant person. Functional neurological disorder seems to be the brain's response to trauma, and is more of a psychiatric condition than a physical one, so I can't help but disagree and be more inclined to think it's a neurological side effect of my diagnosed celiac disease. Just want some opinions. 

Also for reference, before all of this happened, I was working as a nurse full-time, enjoying my off days with friends and family, had a vacation planned, and was genuinely doing fine from a mental health standpoint. This also happened right after a reaction, which is leaning me towards celiac disease. 

Any opinions are greatly appreciated, thanks friends!


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



Celiac.com Sponsor (A8-M):



Scott Adams Grand Master

This is a very complex and difficult situation, and your intuition about a potential link to celiac disease is medically plausible. While Guillain-Barré Syndrome (GBS) is often triggered by infections, it can also be precipitated by other immune system events, including a significant gluten exposure in a person with celiac disease. The timeline you describe—neurological symptoms appearing after the GI symptoms subsided—is classic for post-infectious (or in this case, post-exposure) GBS. Furthermore, there is a recognized, though rare, neurological condition directly linked to celiac disease called Gluten Ataxia, which affects coordination and can cause gait problems. However, the rapid onset of paralysis and cranial nerve involvement you experienced is more characteristic of GBS than typical gluten ataxia. It's also important to know that a negative EMG early in the course of GBS does not rule it out, and "Functional Neurological Disorder" (FND) is not purely psychiatric; it is a real and complex disorder where there is a problem with the functioning of the nervous system, not its structure, and it can be triggered by physical illness or stress. The most critical step is to continue working closely with your neurologists. You should absolutely bring up your celiac history and your theory, as it is a relevant piece of the diagnostic puzzle. They may consider specific antibody tests related to gluten neuropathy or ataxia to help differentiate the cause. 

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

      Recovery from gluten challenge

    2. - annamarie6655 posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      0

      Airborne Gluten?

    3. - trents replied to Mell2's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      13

      Rectal pain

    4. - Celiac and Salty replied to Mell2's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      13

      Rectal pain


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,242
    • Most Online (within 30 mins)
      7,748

    TwinJan
    Newest Member
    TwinJan
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Scott Adams
      This article may be helpful:  
    • Kirita
      I’m wondering if anyone has had any experience with the gluten challenge. My teenager completed a gluten challenge over the summer, it ended up being 10 weeks although she stopped being consistent eating gluten after 6. Her previous endoscopy was negative but this past August it was positive after the gluten challenge. If you have done the gluten challenge, how long did it take you to feel back to normal? It took about two months before she got “glutened” again but now she’s having difficult coming back from that and has a lot of fatigue. I’m hoping someone has some advice! 
    • annamarie6655
      Hello everyone, I was on here a few months ago trying to figure out if I was reacting to something other than gluten, to which a very helpful response was that it could be xanthin or guar gum.    Since then, I have eaten items with both of those ingredients in it and I have not reacted to it, so my mystery reaction to the Digiorno pizza remains.    HOWEVER, I realized something recently- the last time I got glutened and the most recent time I got glutened, I truly never ate anything with gluten in it. But i did breathe it in.    The first time was a feed barrel for my uncle’s chickens- all of the dust came right up, and most of what was in there was wheat/grains. The second time was after opening a pet food bag and accidentally getting a huge whiff of it.    When this happens, I tend to have more neurological symptoms- specifically involuntary muscle spasms/jerks everywhere. It also seems to cause migraines and anxiety as well. Sometimes, with more airborne exposure, I get GI symptoms, but not every time.    My doctor says he’s never heard of it being an airborne problem, but also said he isn’t well versed in celiac specifics. I don’t have the money for a personal dietician, so I’m doing the best I can.    is there anyone else who has experienced this, or gets similar neurological symptoms? 
    • trents
      I was suffering from PF just previous to being dx with celiac disease about 25 yr. ago but have not been troubled with it since. Not sure what the connection between the two is of if there is one. But I do know it is a very painful condition that takes your breath away when it strikes.
    • Celiac and Salty
      I have dealt with proctalgia fugax on and off for a year now. It feels almost paralyzing during an episode and they have started lasting longer and longer, sometimes 20+ minutes. I was recently diagnosed with celiac disease and wonder if the 2 are related. I did request a prescription for topical nitroglycerin for my PF episodes and that has helped tremendously!
×
×
  • 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.