18 replies to this topic

[stephaniesherie]

Just wondering do you get tingling in your tongue and face?
Also, do your eyelids get puffy?
I get those symptoms too

[Kiwiwio]

I do not have your same symptoms but i am familiar with people thinking you are making it up, a hypochondriac, lazy, crazy, etc.. Forme, I think this was one of the harder sides of my celiac. When I became soooo ill and they kept misdiagnosing me, my family, doctors and many of my friends thought i was making it up, bulimic (from the constant vomiting), lazy, hypochondriac, etc.. The incredible thing is, one cannot 'make-up' our symptoms. It certainly does shake your trust in people and doctors. Hope things get better!

I've been really struggling since mid June with sudden onset gluten neuropathy. It's getting worse. I think I've had symptoms of gluten intolerance for at least ten years, but it was all gastrointestinal before and misdiagnosed until August of this year.

One afternoon, I fell asleep exhausted on the couch. When I woke up, I was drooling prolifically and could barely get my body to respond to walking or anything... I felt like I'd been drugged. My vision was blurred (ocular ataxia). I soon began vomiting, then my feet turned in and locked (dystonia), then my hands. This came and went. Within a few hours, my torso was jerking (myoclonus), head turning, muscles convulsing, and hands (especially right) tremoring. Slurred speech, stuttering. Unable to walk (ataxia). Needless to say, we went to the ER (of a world renowned hospital). They sent me home, confused with my condition. The next morning, I woke up with an insane migraine and was rushed via ambulance back to the same ER- I don't remember that ride at all. Long story short, MRI revealed very little, other than a couple of white lesions on cerebellum (which they weren't concerned about). The rest of the tests came out negative. No seizures apparent on EKG. They sent me home, again. Neurologists had a no clue- not any of the 15 OR SO that came by to examine me.

The neurologists at Harvard told me, after a five minute cursory exam, that it was "psychological" and that I should see a psychiatrist.

Over the next two weeks, I did my research, went on a trial diet (where I discovered the neuro symptoms returned within 30 minutes of accidentally ingesting gluten), returned to the same doctors, and asked for a blood test for gluten intolerance. They didn't believe me, but ordered the test anyway.

It came back POSITIVE. It's been two months since my diagnosis and I try everything I can to stay gluten free.

So long as I avoid gluten in ANY increment, I don't get the neuro symptoms. But within 30 minutes of getting "glutened", they return in full force, starting with a steady progression (first face flushes, my vision blurs, right hand starts tremoring, 10 minutes later my head starts whipping left, and five minutes after that my muscles seize and feet turn in, locking). I have Diazepam for when this happens, and it's worked so far, so long as I catch it when my hand starts tremoring...

... until last night. Last night it failed to work at all. I was left in public when it happened and fell down outside of a cafe. No one would look at me or help me (I live in a major city- nearly 150 people must have seen me). The medicine didn't work.

It's been 18 hours since and I can't stop tremoring (except when I sleep). I'm ONLY 25 YEARS OLD.

[xpaperbackwriterx]

Sounds like gluten ataxia to me.

[ccheri]

Hi, Twitchy! My name is Cheri; and I, too, have many neurological issues when I eat gluten. I have a B.A. in Criminal Justice, I used to to be a court clerk for 7 years. I worked in a very-high paced environment dealing with hundreds of people a day. Now, I can't even imagine working an 8 hour shift. Most of my life, I've had series of illnesses, I had skin problems, kidney stones, stomach pain for 3 years straight, chronic inflammations in different areas of the body, and so on, and so on. I believe I had neurological issues all my life, but it was masked by allergies, flues, chronic infections. Anyways, I did struggle through work (self medicating), I had no idea what was causing all my problems. I became labeled a hyphochondriac and a drug seeker, right before my neurological issues really kicked in. I had to quit work because I was becoming paralyzed at work, and my vision became erractic. Something happened to me, I had a reaction to medication (not containing gluten). My right hand was twitching radically, I couldn't talk,started studdering, I felt like (the best explanation) I was in deliurum for 3 days, my face was gray and swollen, and I saw at least 6 doctors, and they all told me to see a psychologist. My condition worsen, I woke up paralyzed, had seizures, I was told I had a complex seizure. I had problems talking, walking, depth perception, I basically, looked like I had cerebral palsy, and the medical field turned their back on me. My neurologist, didn't even look at my results of my MRI. I got the results, I had a VMA (venous malformation anomally) on the right parietal lobe. Exactly where it was numb, I basically felt like my neurotransmitters weren't connecting. It said I could of been born with it and it shouldn't cause me problems, then kicked me out the door. I agree with that, but my research and experience is if something affects it , then it causes problems, because I did have seizures when I was a baby. Long story, short, moved to another state after being bed-ridden 2 years, found out it was celiacs. Being gluten-free, has helped me tremendously. When I do get glutened, the right side of my mouth gets numb, my vision goes crazy, anxiety, I'm flushed, hard time talking (ataxia), I start limping, which I think is strange. It's sooo hard to believe that, I went through all of that and it was gluten. So when I do get glutened, I can believe it. I still have issues,I have connective tissue issues, that is disabling now, I rarely have bowel movements, which might be neurological, and my vision will get blurry often. My medical insurance kicks in December, I'm praying for a caring doctor. I'm grateful, that I don't have to take a bunch of medication, I'd be wary of experimenting with them, truly believe gluten-free is probably the only thing that helps, and maybe it was the amount of gluten you were exposed to made your symptoms worse, be extremely careful messing with the brain. I'm comforted knowing that someone else, has the same problem as I do, because, I feel little understanding from people on really how bad it is and how scared I get. But, I'm sorry, you have to go through it. I always tell people, I'm not crazy, it's neurological. Take care.