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!

Hi Christina, Thanks so much for taking time to answer in detail and share your story, too. It's a good reminder that we all walk different paths -- and that none of them are right or wrong.  It seems like, with time, you've come to be able to identify clearly what your triggers are. I am hoping for this clarity for myself with more time. I am sure it just takes time and lots of experiences. I am 4.5 years in. When my doctor checked my antibodies earlier this year, they were at 8, which was clearly a pretty incredible progress from the 1,118 where they were 4.5 years ago! Because I am working with a different doctor than the one who diagnosed me, he hasn't seen this progress for comparison and just told me I need to be more careful. That felt frustrating. I do not have a dishwasher and I don't share the house with gluten eaters, but that is a great tip for the future, should I live in a place with a dishwasher again! When I moved into my apartment, the oven was already here. Although I don't use the convection setting, cleaned it thoroughly after moving in, and do not share it with gluten eaters, perhaps it would be worth replacing it anyway. It is getting really old as it is...   Thank you again for your response and wishing a lovely Thursday, L

Hi there, thank you very much for sharing your story. It is a condition that requires our effort, learning, and and attention for a lifetime: always new ways to grow and learn, like you said. And looking at it as a way to learn is a beautiful way of thinking about things; thank you. I have done so. I lived alone at my point of diagnosis and still do; when I found out, I got rid of and replaced everything. 

Hello Scott, Thank you for your incredibly thoughtful and kind response to my post.  It's a great reminder that things are often more than what meets the eye and that social media often isn't an accurate representation of reality.  Reading your response reminds me that I have been very diligent in my healing and in trying to find answers. I suppose some things take a lot of time, patience, a multi-factor approach, and the right combination of factors.  My nutritionist wants me to try avocado in several days because it will have been a week after the whole quinoa-flake-debacle. The idea seems to be waiting until my system has calmed down; problem is, my system isn't calm even when eating the simple foods that I am.  I wonder sometimes if it makes sense to add new things when I won't really be able to tell if I am reacting to the foods or simply continuing to react to what feels like life/my surroundings/the situation, but if I keep waiting, I could be waiting forever. I have also heard that sometimes, the more foods you cut out and the longer you don't eat them, the more things the body tends to become adverse to. This feels like a vicious cycle sometimes. I think the nutritionist is very competent and has my best interests at heart, so I should probably just try it. If you (or anyone else) have any anecdotal comments about this, I would be happy to hear them too.   Thank you, again, for your kind and thoughtful response. It did me a lot of good to read it and to remember that this is not all my fault and I am not alone in my struggles. Very grateful for this online community! Thank you deeply for your work here! 

@FayeBr, Yes, blood tests for thiamine are notoriously inaccurate. Thiamine works inside cells.  The blood stream is a transport system, not an accurate measure of the amount of usable thiamine inside cells.  The best way to see if you're in need of thiamine, according to the World Health Organization, is to take thiamine for a while and look for health improvement.   The thyroid is one of the biggest users of thiamine along with the brain and the pancreas.  Thiamine improves the fatigue in hypothyroidism and helps the thyroid function.  Thiamine helps the pancreas produce digestive enzymes and insulin.  Yes, low thiamine can even cause altered thinking, forgetfulness, depression, anxiety, panic attacks, migraines, poor judgement, and brain fog.  Low thiamine causes white spots in the brain in specific areas.   Yes, low thiamine can cause symptoms similar to MS.  Abnormalities in muscle fiber contractions can be very similar in both MS and low thiamine.  Thiamine is water soluble and nontoxic.  There's no toxicity upper limit.  If not needed, the kidneys excrete it easily.   Some Celiac people make tTg 6 antibodies which attack the brain resulting in Ataxia symptoms.    Remember blood tests for Celiac?  Those measure tTg2 antibodies.  TTg 6 antibodies are also found in people with Alzheimer's and Parkinson's diseases, although they don't have Celiac disease.   P.S. I struggled along with low thiamine for years.  I have had great health improvement taking Benfotiamine.