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. - trents replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      9

      how much gluten do I need to eat before blood tests?

    2. - Scott Adams replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      IBS-D vs Celiac

    3. - Scott Adams replied to Amy Barnett's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Question

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

    • Total Members
      133,323
    • Most Online (within 30 mins)
      7,748

    bttyknight83
    Newest Member
    bttyknight83
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • trents
      I might suggest you consider buckwheat groats. https://www.amazon.com/Anthonys-Organic-Hulled-Buckwheat-Groats/dp/B0D15QDVW7/ref=sr_1_4_pp?crid=GOFG11A8ZUMU&dib=eyJ2IjoiMSJ9.bk-hCrXgLpHqKS8QJnfKJLKbKzm2BS9tIFv3P9HjJ5swL1-02C3V819UZ845_kAwnxTUM8Qa69hKl0DfHAucO827k_rh7ZclIOPtAA9KjvEEYtaeUV06FJQyCoi5dwcfXRt8dx3cJ6ctEn2VIPaaFd0nOye2TkASgSRtdtKgvXEEXknFVYURBjXen1Nc7EtAlJyJbU8EhB89ElCGFPRavEQkTFHv9V2Zh1EMAPRno7UajBpLCQ-1JfC5jKUyzfgsf7jN5L6yfZSgjhnwEbg6KKwWrKeghga8W_CAhEEw9N0.eDBrhYWsjgEFud6ZE03iun0-AEaGfNS1q4ILLjZz7Fs&dib_tag=se&keywords=buckwheat%2Bgroats&qid=1769980587&s=grocery&sprefix=buchwheat%2Bgroats%2Cgrocery%2C249&sr=1-4&th=1 Takes about 10 minutes to cook. Incidentally, I don't like quinoa either. Reminds me and smells to me like wet grass seed. When its not washed before cooking it makes me ill because of saponins in the seed coat. Yes, it can be difficult to get much dietary calcium without dairy. But in many cases, it's not the amount of calcium in the diet that is the problem but the poor uptake of it. And too much calcium supplementation can interfere with the absorption of vitamins and minerals in general because it raises gut pH.
    • Scott Adams
      What you’re describing really does not read like typical IBS-D. The dramatic, rapid normalization of stool frequency and form after removing wheat, along with improved tolerance of legumes and plant foods, is a classic pattern seen in gluten-driven disease rather than functional IBS. IBS usually worsens with fiber and beans, not improves. The fact that you carry HLA-DQ2.2 means celiac disease is absolutely possible, even if it’s less common than DQ2.5, and many people with DQ2.2 present later and are under-diagnosed. Your hesitation to reintroduce gluten is completely understandable — quality of life matters — and many people in your position choose to remain strictly gluten-free and treat it as medically necessary even without formal biopsy confirmation. If and when you’re ready, a physician can help you weigh options like limited gluten challenge, serology history, or documentation as “probable celiac.” What’s clear is that this wasn’t just random IBS — you identified the trigger, and your body has been very consistent in its response.
    • Scott Adams
      Here are some results from a search: Top Liquid Multivitamin Picks for Celiac Needs MaryRuth's Liquid Morning Multivitamin Essentials+ – Excellent daily choice with a broad vitamin/mineral profile, easy to absorb, gluten-free, vegan, and great overall value. MaryRuth's Liquid Morning Multivitamin – Classic, well-reviewed gluten-free liquid multivitamin with essential nutrients in a readily absorbable form. MaryRuth's Morning Multivitamin w/ Hair Growth – Adds beauty-supporting ingredients (biotin, B vitamins), also gluten-free and easy to take. New Chapter Liquid Multivitamin and New Chapter Liquid Multivitamin Orange Mango – Fermented liquid form with extra nutrients and good tolerability if you prefer a whole-food-based formula. Nature's Plus Source Of Life Gold Liquid – Premium option with a broad spectrum of vitamins and plant-based nutrients. Floradix Epresat Adult Liquid Multivitamin – Highly rated gluten-free German-made liquid, good choice if taste and natural ingredients matter. NOW Foods Liquid Multi Tropical Orange – Budget-friendly liquid multivitamin with solid nutrient coverage.
    • catnapt
      oh that's interesting... it's hard to say for sure but it has *seemed* like oats might be causing me some vague issues in the past few months. It's odd that I never really connect specific symptoms to foods, it's more of an all over feeling of unwellness after  eating them.  If it happens a few times after eating the same foods- I cut back or avoid them. for this reason I avoid dairy and eggs.  So far this has worked well for me.  oh, I have some of Bob's Red Mill Mighty Tasty Hot cereal and I love it! it's hard to find but I will be looking for more.  for the next few weeks I'm going to be concentrating on whole fresh fruits and veggies and beans and nuts and seeds. I'll have to find out if grains are truly necessary in our diet. I buy brown rice pasta but only eat that maybe once a month at most. Never liked quinoa. And all the other exotic sounding grains seem to be time consuming to prepare. Something to look at later. I love beans and to me they provide the heft and calories that make me feel full for a lot longer than a big bowl of broccoli or other veggies. I can't even tolerate the plant milks right now.  I have reached out to the endo for guidance regarding calcium intake - she wants me to consume 1000mgs from food daily and I'm not able to get to more than 600mgs right now.  not supposed to use a supplement until after my next round of testing for hyperparathyroidism.   thanks again- you seem to know quite a bit about celiac.  
    • trents
      Welcome to the celiac.com community, @SilkieFairy! You could also have NCGS (Non Celiac Gluten Sensitivity) as opposed to celiac disease. They share many of the same symptoms, especially the GI ones. There is no test for NCGS. Celiac disease must first be ruled out.
×
×
  • 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.