Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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

Curious As To What This Was


revenant

Recommended Posts

revenant Enthusiast

I'm still trying to figure out some of my childhood symptoms because there were so many, and one has me very curious.

My knees wouldn't be able to buckle, so when I stood my knees would unbuckle and i'd have to catch myself and straighten them out again.

Also, at night I would always do this thing where I would lie on my back before bed, put my arms in the air and try to keep them straight in the air. They would fall to one side almost lifelessly, and I would catch my arm in mid fall, try and put it back straight but instead it would swing around like a pendulum in circles, every few seconds it would fall and hit me in the stomach. Try again. In this way I would also make circles in the air with my arms, but I wasn't able to activate almost any muscles. It's hard to describe the feeling now because I barley remember it... I try now on a gluten free diet and it's impossible for me to do. But it's the same kind of uncontrollable feeling I had in my knees when I stood still. It caused me to stand with my heels together, which earned me the nickname "Flinstone foot" from my father (Apparently the flintones stood like that). I also had trouble speaking and moving my mouth muscles so I would mumble constantly and speak really slowly, almost inaudibly, it drove my mother nuts. Some kind of muscle problem?

Whatever it was, seems to have completely healed without gluten.


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



Celiac.com Sponsor (A8-M):



happybfree Rookie

Interesting, the same thing was happening to me - thank G-d not as bad as you describe it though! But it disappeared after just one week off gluten! I would also love to know why. I remember walking and then nearly collapsing to the ground because one of my knees chose to fail and buckle down at that moment.

GFinDC Veteran

Hi,

It sounds like it could be a nuerological symptom. Celiac can affect the brain, and causes gluten ataxia in some people. Another possible cause would be low B-12 vitamin levels. That is also related to nerve function. And it is also a thing that happens to some celiacs. Some people take sub-lingual B-12 to help get their B-12 levels up. Anyway, it sounds like you are doing something right since your symptoms are better. :)

Here is a link to series of articles on celiac disease and nuerological affects:

Ataxia, Nerve Disease, Neuropathy, Brain Damage and Celiac Disease

This thread might be interesting too.

Muscle Twitching Just Diagnosed

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      130,155
    • Most Online (within 30 mins)
      7,748

    Jodie W
    Newest Member
    Jodie W
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • knitty kitty
      HypOthyrOidism is HashimOtO's thyrOiditis.  HypeRthyRoidism is GRaves disease.
    • mermaidluver22
      @Scott Adams Thank you so much for this thoughtful and encouraging reply 💛 It really helps me feel less alone navigating all of this! I’ve definitely been strict gluten-free, but I’ll admit — in the beginning, I honestly knew nothing about cross-contamination 😅 so it’s very possible my gut is still healing from that. I feel very abnormal because I am not a typical celiac or a typical Crohn's, so it makes me feel very stuck. 
    • nanny marley
      Hi still the same unfortunately, they had to cancel my colonoscopy due to my trapped nerve , I'm awaiting some kind of scan , it was the nurses who  told me to refuse and asked a docter , and I was told to cancel and go back to my consultant , I think because my sciatic nerve is compressed between my herniated discs , the prep was enough I could handle , but the colonoscopy itself , they advised me to seek something different ,due to the position I had to be in and the movements , so I will update Wen I know more , thankyou for asking appreciated 🤗
    • Scott Adams
      It sounds like you're navigating a complex situation with your celiac disease, and it’s understandable to feel confused by the GI world! While celiac disease typically affects the duodenum and proximal small intestine, it’s possible for inflammation to extend to the ileum, especially in cases of more severe or longstanding damage. Since your tTG-IgA remains elevated despite a strict gluten-free diet, this could indicate ongoing healing or subtle gluten exposure. The ileal inflammation might still be related to celiac, though it’s good your doctor is ruling out other conditions like Crohn’s, given the nonspecific biopsy findings. Some people with celiac do report ileal involvement, particularly if...
    • mermaidluver22
      hi, how are u now? any answers?
×
×
  • Create New...