TwitchyMcLurcherson

I have a right hand tremor that doesn't respond anymore to being gluten-free. Have you had an MRI done to check for lesions or a good neuro work-up to make sure there aren't additional problems? I'm trying the b12 route myself, as well as high doses of vitamin D (I have a diagnosed severe deficiency); I'll let you know if it works.

My ataxia and associated neuro symptoms have only increased, so being gluten-free hasn't helped them (granted, this is only after being gluten-free again for three months... I had to do a gluten challenge before my endoscopy). I wish it was reversible for me! But perhaps I have another disorder that isn't related (they'll be checking again in a year to see if it's progressed to clinically definite MS). Or maybe it's caused by my severe Vitamin D deficiency or a multivitamin deficiency- I'm loading up on vitamins now, so we'll see if I'm doing better in 6-8 weeks.

How did it go? I'm trying to find a neurologist through them that also knows celiac.

Well, regardless, there's a lot more to a marriage... and life... than a few sentences I wrote in a forum. I didn't mean to come on here looking to rant. Surely some of you have shared kitchens- how do you manage? What specific tips might you have for keeping things safe? Is it possible without owning a dishwasher? We live in a small urban apartment with two little boys, the oldest (two years old) who has to be gluten-free/cf as well due to being on the autism spectrum (and the diet is working for him!). I also seem to be allergic/intolerant to corn and casein and possibly even to soy now. Do these cross-contaminate the way gluten does?

Oh, we're in couples' counseling for everything else already. It's not doing a thing.

Ha. The irony in this is that my husband IS an Ivy Leaguer (as am I) and the drs, neurologists, and nutritionists that diagnosed me and told me I need to avoid cross-contamination are at Harvard. That's not going to cut it. =/ Currently were screaming at each other because I threw out a couple of boxes of crackers and a loaf of bread. That'll give you some idea of what I'm up against.

Some of us simply ARE more sensitive. For me, it's completely neurological. 30 minutes after getting glutened, I have what amounts to a seizure- and this seizure can continue for hours. If I don't get to my anti-convulsants in those first 30 minutes, it's not going to work. Last night it happened in public and I fell down outside of a cafe. No one helped. ANY level of gluten, whatsoever, sets me off. Count your lucky stars that you don't have to worry about it like that. Some of us are paranoid because we HAVE to be.

I have an EXTREME reaction to gluten in any increment. It affects me neurologically, leaving me confused, blurry eyed, tremoring, tic-ing, stuttering, and unable to walk. And yet my husband absolutely REFUSES to go gluten free in the house as well. He also won't keep separate work spaces, pans, dishes, etc. He won't wash dishes separately- or keep them separately- and won't believe me about cross-contamination, even though he keeps seeing its effects. He'll leave bread crumbs on the counter, my cutting board, piled in the sink... What on earth can I do? How do you all manage with shared space?

For an example of what this looks like in ONE area of my body, here's a video of me today trying to draw with my right hand (I'm right handed). You should see me try to walk. My link

Have your seizures, atazia, and vision problems gone away, or do they continue sporadically (as indicative of irreversible damage to your cerebellum)? I'm getting worse.

The post cut me off before I'd finished. What prognosis is there for neurological gluten reactions? I can't find much. My doctors know little to nothing (so much for Ivy League medical research). I have two children younger than 3. I'm a student. I don't want to end up in a wheelchair or worse. But if that's the reality, I'll accept that. I'd just like to know. Anyone else present neurologically? Please, please tell me your stories, coping mechanisms, and anything else. I don't know anyone else with this at all (supposedly my reaction is extremely rare).

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.