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

Anyone Have Their Legs Collapse On Them?


Nantzie

Recommended Posts

Nantzie Collaborator

A few months ago, before I found out about celiac, I woke up out of a sound sleep to the phone ringing. I jumped out of bed, and my legs collapsed right out from under me. I just dropped like a sack of potatoes. I thought at first that my legs were just asleep, but once I dragged myself back into bed (using nothing but my arm strength), I felt my legs and I could feel everything, and I could move them, wiggle my toes, etc. I tried to stand up again and I just didn't seem to have any muscle strength whatsoever. It was like standing on cooked spaghetti. It was about five minutes before I could stand up. At the time I wrote it off as being sleep paralysis, where sometimes people wake up and can't move for a few minutes because their bodies still think they're asleep.

It hasn't happened again, but now, knowing about the neurological aspects of gluten, along with already having balance problems, it just makes me wonder.

Has anyone here had problems with something like this?

Nancy


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



RiceGuy Collaborator

Well, I have recently been having pain in one leg only. So much so that I could not stand on it. It was also very weak, but since you didn't mention extreme pain, I'd guess it's not exactly the same thing. It would spasm at the slightest change in pressure as I tried to get around. There was noticable numbness too, but not the entire way down - mostly above the knee. That lasted for quite awhile. Almost a month! Ever try walking around on one leg?

Now it is a lot better, but still not very good. There is residual pain in one spot of the knee. Both ankles hurt all the time, but I think that's just because of the way I had to drag myself around for so long.

I still don't know what brought it on, so I'm proceeding cautiously.

ravenwoodglass Mentor
A few months ago, before I found out about celiac, I woke up out of a sound sleep to the phone ringing.  I jumped out of bed, and my legs collapsed right out from under me.  I just dropped like a sack of potatoes.  I thought at first that my legs were just asleep, but once I dragged myself back into bed (using nothing but my arm strength), I felt my legs and I could feel everything, and I could move them, wiggle my toes, etc.  I tried to stand up again and I just didn't seem to have any muscle strength whatsoever.  It was like standing on cooked spaghetti.  It was about five minutes before I could stand up.  At the time I wrote it off as being sleep paralysis, where sometimes people wake up and can't move for a few minutes because their bodies still think they're asleep. 

It hasn't happened again, but now, knowing about the neurological aspects of gluten, along with already having balance problems, it just makes me wonder. 

Has anyone here had problems with something like this? 

Nancy

<{POST_SNAPBACK}>

Yes,

Fortunately it was only one leg. Sometimes I used to have to use my hand to move my leg, made it a real pain (and probably dangerous) to drive. I used canadian canes for a few years prediagnosis because of this and the ataxia. It also made them think MS, but they ruled that out. After about 3 months gluten-free my neuro symptoms were pretty much gone, unless glutened. I even have reflexes now, something I hadn't had since childhood when I first started to drag my leg. I don't know if my response was typical, ie. basic full remission, but I hope it'sa the same for others. Celiac can cause some nasty neuro problems, I was very happy when they went away.

danikali Enthusiast

YES! :unsure: And it's scary isn't it????? There have been a couple of times where I get up during the night to go to the bathroom and as soon as I put any weight on my legs when I get up, I FALL! :blink: It probably looks funny :lol: but it is NOT FUNNY AT ALL! :( It's like I'll get paralized for a little bit..........I'm glad to hear I'm not the only one who's had this problem!

And also, with those of you who have pain in only one leg, I GET THAT TOO! (Sporadically)........It's like, it will start out with a little cramp, and before I know it, my whole leg is throbbing! It's usually my left leg, but a couple times I have gotten just the "cramps" -not the whole throbbing thing- in my right leg too. But it's only one leg at a time..... :huh:

Scary stuff! :unsure:

Rusla Enthusiast

I had that happen at work, before I found out any of this. I went to stand up and I couldn't and had extreme pain in my hips and legs. Sometimes I will get it in just one leg. But for the very short time I was gluten-free I did not have even the pains in my legs. Now, this week it is back with a vengence because I have to eat gluten this week.

jerseyangel Proficient

I have not had my legs go out, but at times they feel so weak that I've thought maybe they would. Also, I get hip pain on the right side while laying in bed that is so painful that its hard to change position. Thankfully, these things do not happen too often.

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - xxnonamexx replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      30

      My journey is it gluten or fiber?

    2. - trents replied to jenniber's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      Disaccharide deficient, confusing biopsy results, no blood test

    3. - jenniber replied to jenniber's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      Disaccharide deficient, confusing biopsy results, no blood test

    4. - Samanthaeileen1 replied to Samanthaeileen1's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      7

      Thoughts? Non-endoscopic Celiac diagnosis in two year old

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      132,823
    • Most Online (within 30 mins)
      7,748

    Kayaker
    Newest Member
    Kayaker
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • xxnonamexx
      Is there a digestive enzyme that helps build a healthier gut? I see people taking them but not sure what really works
    • trents
      So the tTG-IGA at 28 is positive for celiac disease. There are some other medical conditions that can cause elevated tTG-IGA but this is unlikely. There are some people for whom the dairy protein casein can cause this but by far the most likely cause is celiac disease. Especially when your small bowel lining is "scalloped". Your Serum IGA 01 (aka, "total IGA") at 245 mg/dl is within normal range, indicating you are not IGA deficient. But I also think it would be wise to take your doctor's advice about the sucraid diet and avoiding dairy . . . at least until you experience healing and your gut has had a chance to heal, which can take around two years. After that, you can experiment with adding dairy back in and monitor symptoms. By the way, if you want the protein afforded by dairy but need to avoid casein, you can do so with whey protein powder. Whey is the other major protein in dairy.
    • jenniber
      hi, i want to say thank you to you and @trents   . after 2 phone calls to my GI, her office called me back to tell me that a blood test was “unnecessary” and that we should “follow the gold standard” and since my biopsy did not indicate celiac, to follow the no dairy and sucraid diet. i luckily have expendable income and made an appt for the labcorp blood test that day. i just got my results back and it indicates celiac disease i think 😭   im honestly happy bc now i KNOW and i can go gluten free. and i am SO MAD at this doctor for dismissing me for a simple blood test that wouldn’t have cost her anything !!!!!!!!!!! im sorry, im so emotional right now, i have been sick my whole life and never knew why, i feel so much better already   my results from labcorp:   Celiac Ab tTG TIgA w/Rflx Test Current Result and Flag Previous Result and Date Units Reference Interval t-Transglutaminase (tTG) IgA 01 28 High U/mL 0-3 Negative 0 - 3 Weak Positive 4 - 10 Positive >10 Tissue Transglutaminase (tTG) has been identified as the endomysial antigen. Studies have demonstrated that endomysial IgA antibodies have over 99% specificity for gluten sensitive enteropathy. Immunoglobulin A, Qn, Serum 01 245 mg/dL 87-352
    • JoJo0611
      Thank you this really helped. 
    • Samanthaeileen1
      Okay that is really good to know. So with that being positive and the other being high it makes sense she diagnosed her even without the endoscopy. So glad we caught it early. She had so many symptoms though that to me it was clear something was wrong.   yeah I think we had better test us and the other kids as well. 
×
×
  • 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.