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Gluten Neuropathy
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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.

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You poor thing. I can't believe no one would help you. You need to call the doctor back and tell them the drug is not working. That must have been a really scarey experience for you. If you are in public and you feel the event coming try to get to somewhere where someone can call an ambulance or phone someone to get you. I am so sorry you din't have even a single person try to help. You are in a great place to learn what you need to do to keep yourself safe. There is a lot to learn about being gluten free and you are likely to be very sensitive. Please read as much as you can here and do ask any questions you need to.

I have neuro issues with gluten also but not as severe as your have been. I did have seizures on gluten but they were mild compared to what you are going through. I also had vision issues and for a long time had 2 pairs of glasses, one to wear when glutened and one for days when I wasn't. I also have the ataxia and those little white spots on the MRI are called 'UBOs" or unidentified bright objects. Unfortunately here those are considered a mystery and doctors don't think they mean anything. In other countries they are diagnostic of celiac antibodies attacking the brain. I would have been diagnosed literally years before I was if my neuro had known what those 5 bright white spots were.

I am glad that you know what caused the problem. Know your not alone in having the neuro issues and that you can heal.

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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).

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You poor thing. I can't believe no one would help you. You need to call the doctor back and tell them the drug is not working. That must have been a really scarey experience for you. If you are in public and you feel the event coming try to get to somewhere where someone can call an ambulance or phone someone to get you. I am so sorry you din't have even a single person try to help. You are in a great place to learn what you need to do to keep yourself safe. There is a lot to learn about being gluten free and you are likely to be very sensitive. Please read as much as you can here and do ask any questions you need to.

I have neuro issues with gluten also but not as severe as your have been. I did have seizures on gluten but they were mild compared to what you are going through. I also had vision issues and for a long time had 2 pairs of glasses, one to wear when glutened and one for days when I wasn't. I also have the ataxia and those little white spots on the MRI are called 'UBOs" or unidentified bright objects. Unfortunately here those are considered a mystery and doctors don't think they mean anything. In other countries they are diagnostic of celiac antibodies attacking the brain. I would have been diagnosed literally years before I was if my neuro had known what those 5 bright white spots were.

I am glad that you know what caused the problem. Know your not alone in having the neuro issues and that you can heal.

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.

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I feel for you. I wanted to give you some encouragement. I have only minor neural issues. The longer I remain gluten free, the less severe and more rare are my glutenings. The neural issues took the longest to heal, it seemed, but they don't come back as fast either. Hopefully over time your glutenings will become less debilitating.

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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.

Yes mine for the most part went away. I did however have to be really strict. I live in a gluten free house and I eat mostly whole unprocessed foods. I eliminated it from everything I came in contact with. I have to be very careful to not get CC'd because the symptoms come back if I do. I also found I am sensitive to distilled gluten grains so I avoid them in pickles, vinegar and alcohol.

Be sure you have checked with the maker to be sure all meds and supplements are gluten free. Be sure to read the whole label with supplements as some will have barley and wheat grass in them and still be labeled gluten free. You don't want any with either grass in it.

Do follow up with your neurologist about the med your on. Hopefully being really strict with the diet will resolve some of the issues. Over time my neuro effects, while still there when glutened, have improved a great deal and their effects when I am glutened are milder. Hopefully the same will hold true for you.

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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

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I too do have some neuro symptoms with celiac.

It's just a mild to moderate vertigo-like attack though lasting a few days into a week sometimes. It's what I would describe as tolerable as compared to you. I will keep you in my thoughts and prayers as it's got to be very frustrating to go through something like that being so young. I'm 28 and my co-workers are convinced I'm falling apart.

It's a good thing you have caught what the culprit is though and this gluten-free thing DOES get easier :)

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I worked with a lady who had very similar symptoms to these. We worked together as dance instructors. One day at work in the break area I found her passed out cold in the floor. She came to pretty fast, disoriented for a bit. It scared us all and she never told us what was wrong. Then another day, she ate a salad from chick fil a which was not her usual routine, and she started loosing her motor skills, including speach. I immediately got her in the bathroom, where she was again disoriented, slurred speach, jerky movements, etc. And passed out again. She soon after quit her job because of the health problems, but told us that she had had a stroke before, and had brain lesions, but didn't still know why. Months after she quit, I called her up, and she told me she had been diagnosed with Celiac disease. I hope this helps some, even though I can't tell you much more about it.

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Have you been worked up for any kind of concurrent seizure disorder? Had an EEG done, etc? It's possible that instead of needing diazepam only when you get symptoms, you should be on it full-time to prevent attacks.

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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).

Hi Twitchy.

I can understand how you feel as I have numerous neorological symptoms.

I was diagnosed with Chronic fatigue 20 years ago and only 18months ago did I realize that I was gluten intolerant. I didn't have a diagnosis but as soon as I went on the diet, all my stomach problems subsided. Unfortunately my neorological ones didn't and I suffer with bad muscle weakness which lead to tremours, twitching and shaking.

Over the past 10 years I have taken different supplements and one which I take regularly is Pantothenic acid (B5). 6 months ago I started to get excrutiating pains in the head which left me unable to speak, I thought I had a tumour as I also went deaf in one ear. I eventually had an MRI scan which showed I had inflammation of the Menancoccal lining of the brain, which my dodctor couldn't explain. Anyway to cut a long story short I have found out that my diet, which is rich in Brown Rice and also I drink Rice milk, together with the B5 is making my head pains worse or could be causing the problem. I went onto google and saw the symptoms for overdose on Pantothenic acid which mirrowed mine. The only conclusion that I can come up with is that I must now be ingesting the vitamins in my diet as I have been gluten free for 18months and the Pantothenic acid is just too much for me to cope with.

I still have all the neorological problems, like twitching and tremours, pounding in the head. I am exhausted most of the time and now that I cannot eat Brown Rice its another blow because the diet is even more restricted as I am intolerant to Soya, Milk Oats, Maize, goats milk.

The B5 acted like a steroid as it feeds the Adrenal glands, so I am going around like a rag doll at the moment.

Is there anyone else who sounds like this?

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There is an expert on gluten-caused neurological symptoms in the UK who has published extensively, Marios Hadjivassiliou MD. Perhaps you could email him to ask if he knows of anyone in your area who might have some experience working with severe gluten neuropathy. I will PM you his contact info from a recent research paper.

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My daughter and I believe we have neuropathy from gluten intolerance or Celiac. Mine started in March of this year, my daughter in July. My symptoms are mild, peripheral neuropathy and tremors now and then. My daughter gets severe migraines, much more persistent and painful neuropathy, and tremors as well.

The most harsh of the symptoms disappeared when we started gluten-free, but she still gets some of the symptoms which worries us that more foods might be an issue as well, or perhaps there was damage.

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I started having seizures before I was dx with celiac disease... The doctors told me it was all in my head. I was too young (at 15) to have all of the problems I did..

I wanted smack him! He did NOTHING of a 15 year old girl having seizures! They all completely paralyzed me until it was over, and during 1, I fell the floor and my face was stuck in blanket... I was suffocating! He said I was doing it to get attention!!

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Hi Twitchy,

I think we've posted back and forth a few times. I have gluten ataxia with all the weird symptoms as well as celiac disease and terrible GI problems. Also emotional problems related to food reactions (Depression, ADHD, GAD, etc.).

Found this tonight online while I was doing some gluten ataxia research for myself. This is a real gem! Surprised I never read it before! Google "gluten ataxia unidentified bright objects" and you'll hit some interesting finds.

http://dfwceliac.org/html/brain_study.html

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Just wondering do you get tingling in your tongue and face?

Also, do your eyelids get puffy?

I get those symptoms too

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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.

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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.

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    • I found when I went gluten free I started eating more dairy and that gave me worse stomach aches and bloating than the gluten did. So now I have to avoid gluten and dairy.  Maybe you have a similar problem with something you are eating.  I hope you feel better soon.  
    • Hi! I received my "official" celiac diagnosis last week. I had an endoscopy last month that was originally looking for ulcers and h. pylori, but they did some biopsies of my duodenum since they were in the neighborhood and the biopsy came back "consistent with Celiac's disease" and later. They urged me to get my blood checked and follow up with my primary doctor. My blood work came back negative, but my doctor was confident it's Celiac so told me to stay away from gluten. I've been completely gluten free (or to the best of my knowledge) for 2 weeks now, and my results are mixed. At first, I felt great! My stomach was no longer CRAZY bloated once I stopped eating pasta and bread, my acne started healing, and the red rash on the back of my arms started to fade. That was the first few days. Lately, though, my acne is once again flaring up and I've been SO EXHAUSTED. I feel so tired all the time. Even now I have fatigue in my head, limbs, and I could hardly walk or move my body earlier today. I'm overweight and I like to go to the gym, but what used to be an easy workout for me is kicking my ass! I used to go to the gym and tear it up: HIIT on the treadmill followed by 40 minutes of heavy weight lifting. Now I can hardly finish 3 reps in my first set without feeling like a nap. I can't run anymore because my body feels clumsy and heavy. Also, I'm still bloated. I don't suffer from painful, acute bloating, but I struggle to pass gas and I look like I have pregnant belly. I think I'm also retaining water all over my body, and I'm not sure if that's normal? For whatever reason, I have this belief that water is mainly retained in the core and not arms, legs, and face. Anyway, I'd love to hear what you have to say/what you've experienced. Is this typical to first going gluten free?
    • Thanks Stephanie & Gemini for the info. that the 4 of 5 doesn't apply to children. I wasn't aware of that until now. 
    • I think the posters above have given you very good information and I will throw in my 2 cents worth.  I am surprised that they did not test her DGP IgA also.  I am sure that would have been positive.  They switched off with antibody classes and usually they do both tests for both antibodies.  IgA is more specific to Celiac but the IgG is also useful.  The testing shows your daughter is producing antibodies to the gluten in her diet. (DGP IGG). THe tTg shows positive for some damage or inflammation. You know........your daughter is only 4.  She hasn't been on the planet or eating gluten that long. It can take years for enough damage to occur for it to be able to be found on biopsy.  I would say it is highly likely that this is Celiac, especially with her symptoms. But because the damage hasn't graduated to bad enough yet, they won't diagnose her. I think you need to do what others have said and get all copies of testing and find someone else who will take a look and give a diagnosis, especially if they have you do a dietary trial and her symptoms go away.  That might be the only recourse if you want faster proof. I know I would want faster.  I would not really be happy if I thought I had to keep feeding her something that was making her sick.  If you keep her on gluten long enough, the diarrhea will probably show up. BTW.........the criteria mentioned regarding diagnosis does not apply to kids.  I know it's silly and stupid but most leading Celiac specialists do not go by this criteria for kids.......adults only.  Keep that in mind because it might come up.  You could recognize it but they might not. Have you considered gene testing, to help bolster a diagnosis? As far as false positives go, it's the other way around. False negatives happen more frequently than many people think.  It's a recurring theme here.  With her symptoms, which is what I had, a bloated belly and tummy aches are telling.  Have they tested her for lactose intolerance?  That can cause similar symptoms, although it sure won't raise those 2 blood tests.  Keep looking for Celiac because there are many red flags here.
    • This 4 out of 5 criteria does not apply to children. I was never given a reason why, but it isn't.     That said, you may try to get a second opinion from another GI who may be willing to give her a firm dx.  We were in your boat 6 years ago and while I'm sure I'll get slammed for it, I wish we had kept gluten in our kiddos diet till he scoped positive for a variety of reasons.  Again, even family is different and you have to find what is best for you!
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