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For those of you who experience the neurological side of symptoms, please respond.  I had a bad night last night.  I fell asleep twitching and woke up to an even greater degree of twitching.  it was almost a full blown episode.  I so sick, tired, and frustrated at this sometimes I can hardly think straight.  During the episode, my brain had slowed down far enough I felt like I was in slow motion trying to talk.  I didn't have any gluten to speak of as I would have reacted a whole lot sooner after I ate.  My mom realized what was going on and got the Frankincense for me bless her heart.  It took a while for the twitching/spasming to stop.  This is why I know it wasn't something I ate because the twitching stops almost instantly after the application of the frankincense.  Thanks for letting me ramble a bit.  Things are looking better now this morning after I slept for a bit.

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Hi cstark,

I am sorry to hear of your problems!  It can be pretty scary when our bodies seem to go wonky on us.  I had only minor twitchyness in the past from celiac.   An eye tick and some other minor twitching in various muscles.  That slowly went away after I was gluten-free a while though.  They say nuerological issues are the slowest to resolve.  And that B-vitamins are important for nerve health.  Personally I think vitamin D is also very important for nerve function.

I hope your twitches go away in time.  It might take some patience to wait it out.  IF the symptoms get worse though I'd definitely talk to a doctor about it because it could possibly be a sign of some other condition.  Maybe you could get your doctor to test for vitamin levels now.

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Hi cstark

Running up to the time of my diagnosis - and for some time afterwards - I suffered a lot of twitching in my face: my eyelids twitched and the strangest things brought it on - sometimes even bending over to load the dishwasher! I had weird twitching sensations in my cheeks;  I had twitching in my legs and arms occasionally; lots of buzzing and tingling of the extremities, too.

I remember reading somewhere, and I am sure it was on this website, that 'if it twitches, take a magnesium supplement'.  So I bought some tablets and took one or two a day (never exceeding the recommended daily amount).  At the same time I also got put onto iron supplements by my doctor and took a B12 supplement too (the type that melts under your tongue, a sublingual) as I was iron anemic and low on B12.  And I started taking some good quality cod liver oil (for omega three fats and vitamin D).

I tried to eat more fresh fruit and vegetables and my nutritionalist told me to eat tinned sardines twice or three times a week.  She also encouraged me to eat more eggs and nuts which apparently are packed full of nutrients.  If we have had celiac damage we have not been absorbing trace nutrients for some time and this would be a good way to get these into our diet.  

At the same time - coincidentally - I noticed that someone I know (not a celiac) was going through a lot of stress and their face was twitching a lot. I also read on websites about stress that this sort of twitching can stress induced.  So for me I concluded that the stress of the run up to my diagnosis and also years of, effectively, malnutrition had taken their toll and this was why my muscles were behaving this way!  I'm not a doctor, it is just what I concluded!

Things did calm down in the end but it took some months.  Occasionally I get this again but it tends to be at periods of high stress, when I have not been eating the healthiest of diets and, definitely, glutening.

I think the advice give by GFinDC about getting vitamins tested now is a great idea.

Chances are it is celiac damage that should get better but if not let your doctor know.

 

 

 

 

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Ironictruth - sorry you have had this too but I find it reassuring to know that there are others on this board with the same issues.  Even though neuro problems are a well-documented issue for some celiacs I have only ever met one celiac personally - i.e. not on this forum, in person - with distinct neuro issues since my DX.  However I do know another girl with non-celiac gluten intollerance who had severe neuro sypmtoms and now she is much better having dropped gluten.  Sometimes it can feel a bit lonely being not just a gastric case but it does force me to take my diet very seriously  which is good because I have a celiac friend who cheats even though long term it won't do her any good.

I too have had MRIs and two sets of diabetes tests (for neuropathy) and thyroid tests and nothing has been found. It has taken some time for my doctor and me to believe this could just all be down to pesky gluten and years of damage after all!  I do take hope that posters on this forum also say there is a lot of room for improvement, it just takes time.

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Hi cstark,

There is  also a celiac related condition called gluten ataxia, which some people get.  It can cause difficulty walking (coordinating muscles).  We have a few members that have experienced gluten ataxia.  There is something called UBO's associated with it that can sometimes show up on brain scans.  People do recover from gluten ataxia though.  You might want to read up on it some, just in case.

 

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