Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

last night

cstark

By cstark
in Introduce Yourself / Share Stuff

Recommended Posts

cstark Enthusiast
cstark
Posted

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.

  • 2 weeks later...
Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


GFinDC Veteran
GFinDC
Posted

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.

cristiana Veteran
cristiana
Posted

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.

 

 

 

 

ironictruth Proficient
ironictruth
Posted

I get twitching, numbness, head pressure, visual stuff, eye pain... all sorts of weird neuro stuff. 

 

cristiana Veteran
cristiana
Posted

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.

GFinDC Veteran
GFinDC
Posted

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.

 

Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,855
    • Most Online (within 30 mins)
      7,748
    Tara M
    Newest Member
    Tara M
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • cristiana
      Ibuprofen

      By cristiana · Posted

      @Colleen H   I am just curious,  when you were tested for coeliac disease, did the doctors find out if you had any deficiencies? Sometimes muscle pain can be caused by certain deficiencies, for example, magnesium, vitamin D, calcium, and potassium.   Might be worth looking into having some more tests.  Pins and needles can be neuropathy, again caused by deficiencies, such as iron and B12,  which can be reversed if these deficiencies are addressed. In the UK where I live we are usually only tested for iron, B12 and vitamin D deficiencies at diagnosis.   I was very iron anemic and supplementation made a big difference.  B12 was low normal, but in other countries the UK's low normal would be considered a deficiency.  My vitamin D was low normal, and I've been supplementing ever since (when I remember to take it!) My pins and needles definitely started to improve when my known deficiencies were addressed.  My nutritionist also gave me a broad spectrum supplement which really helped, because I suspect I wasn't just deficient in what I mention above but in many other vitamins and minerals.  But a word of warning, don't take iron unless blood tests reveal you actually need it, and if you are taking it your levels must be regularly monitored because too much can make you ill.  (And if you are currently taking iron, that might actually be making your stomach sore - it did mine, so my GP changed my iron supplementation to a gentler form, ferrous gluconate). Lastly, have you been trying to take anything to lessen the pain in your gut?  I get a sore stomach periodically, usually when I've had too much rich food, or when I have had to take an aspirin or certain antibiotics, or after glutening.  When this happens, I take for just a few days a small daily dose of OTC omeprazole.  I also follow a reflux or gastritis diet. There are lots online but the common denominators to these diets is you need to cut out caffeine, alcohol, rich, spicy, acidic food etc and eat small regularly spaced meals.   When I get a sore stomach, I also find it helpful to drink lots of water.  I also find hot water with a few slices of ginger very soothing to sip, or camomile tea.  A wedge pillow at night is good for reflux. Also,  best not to eat a meal 2-3 hours before going to bed. If the stomach pain is getting worse, though, it would be wise to see the doctor again. I hope some of this helps. Cristiana    
    • Me,Sue
      Knowing what to do when feeling unwell.

      By Me,Sue · Posted

      I was diagnosed with coeliac disease a couple of years ago [ish]. I love my food and a variety of food, so it's been hard, as it is with everyone. I try and ensure everything I eat doesn't contain gluten, but occasionally I think something must have got through that has gluten in. Mainly I know because I have to dash to the loo, but recently I have noticed that I feel nauseous after possibly being glutened. I think the thing that I have got better at is knowing what to do when I feel wiped out after a gluten 'episode'. I drink loads of water, and have just started drinking peppermint tea. I also have rehydration powders to drink. I don't feel like eating much, but eventually feel like I need to eat. Gluten free flapjacks, or gluten free cereal, or a small gluten free kids meal are my go to. I am retired, so luckily I can rest, sometimes even going to bed when nothing else works. So I feel that I am getting better at knowing how to try and get back on track. I am also trying to stick to a simpler menu and eat mostly at home so that I can be more confident about what I am eating. THANKS TO THOSE WHO REPLIED ABOUT THE NAUSEA .
    • Francis M
      The Happy Tart review

      By Francis M · Posted

      Thanks. Since the back and forth and promises of review and general stalling went on for more than six months, the credit company will no longer investigate. They have a cutoff of maybe six months.
    • Scott Adams
      The Happy Tart review

      By Scott Adams · Posted

      Is this the same restaurant? https://www.facebook.com/TheHappyTartFallsChurch/ Is it too late to take this up with your credit card company? Normally you have a few months to do a chargeback with them. It seems very odd that they are taking this approach with someone who is likely to be a regular customer--not a good business-minded way of handling things!
    • Scott Adams
      Stomach burning and neuropathy

      By Scott Adams · Posted

      Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months. Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal. This article may be helpful: The most common nutrient deficiencies associated with celiac disease that may lead to testing for the condition include iron, vitamin D, folate (vitamin B9), vitamin B12, calcium, zinc, and magnesium.  Unfortunately many doctors, including my own doctor at the time, don't do extensive follow up testing for a broad range of nutrient deficiencies, nor recommend that those just diagnosed with celiac disease take a broad spectrum vitamin/mineral supplement, which would greatly benefit most, if not all, newly diagnosed celiacs. Because of this it took me decades to overcome a few long-standing issues I had that were associated with gluten ataxia, for example numbness and tingling in my feet, and muscle knots--especially in my shoulders an neck. Only long term extensive supplementation has helped me to resolve these issues.        
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.