Get email alerts Get E-mail Alerts  

  • Articles  ||  Forum Home  ||  Gluten-Free Mall  ||  Store  ||  Journal of Gluten Sensitivity

  • Ads by Google:

    • Announcements

      • Frequently Asked Questions About Celiac Disease   09/30/2015

        This FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE email alerts What are the major symptoms of celiac disease? Celiac Disease SymptomsWhat testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease ScreeningInterpretation of Celiac Disease Blood Test ResultsCan I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful?The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-FreeIs celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic TestingIs there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and DisordersIs there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients)Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients)Gluten-Free Alcoholic BeveragesDistilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free?Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free DietFree recipes: Gluten-Free RecipesWhere can I buy gluten-free stuff? Support this site by shopping at The Store.For Additional Information: Subscribe to: Journal of Gluten Sensitivity


    Advanced Members
    • Content count

    • Joined

    • Last visited

    Community Reputation

    1 Neutral

    1 Follower

    About TwitchyMcLurcherson

    • Rank
      New Community Member

    Profile Information

    • Gender Female

    TwitchyMcLurcherson's Activity

    1. TwitchyMcLurcherson added a post in a topic Gluten Intolerance & Neurological Problems   

      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.
      • 0
    2. TwitchyMcLurcherson added a post in a topic Gluten Ataxia Neuropathy Neurological Presentation   

      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.
      • 0
    3. TwitchyMcLurcherson added a post in a topic Beth Israel Deaconess Medical Center   

      How did it go? I'm trying to find a neurologist through them that also knows celiac.
      • 0
    4. TwitchyMcLurcherson added a post in a topic Shared Kitchens?   

      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?
      • 0
    5. TwitchyMcLurcherson added a post in a topic Shared Kitchens?   

      Oh, we're in couples' counseling for everything else already. It's not doing a thing.
      • 0
    6. TwitchyMcLurcherson added a post in a topic Shared Kitchens?   

      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.
      • 0
    7. TwitchyMcLurcherson added a post in a topic Are Some A Little Ocd?   

      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.
      • 1
    8. TwitchyMcLurcherson added a topic in Celiac Disease - Coping With   

      Shared Kitchens?
      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?
      • 17 replies
    9. TwitchyMcLurcherson added a post in a topic Gluten Neuropathy   

      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
      • 0
    10. TwitchyMcLurcherson added a post in a topic Gluten Neuropathy   

      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.
      • 0
    11. TwitchyMcLurcherson added a post in a topic Gluten Neuropathy   

      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).
      • 0
    12. TwitchyMcLurcherson added a topic in Celiac Disease - Related Disorders & Research   

      Gluten Neuropathy
      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.
      • 18 replies

    Ads by Google: