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Diagnosed with potential Guillain Barre could it be celiac related?


Nattific

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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!


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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. 

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