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Curious As To What This Was


revenant

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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.


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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

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    • trents
      Yes, it does. And joint pain is another celiac symptom that is now well-recognized. 
    • ThomasA55
      Does my iron loss sound like celiac to you?
    • trents
      Being as how you are largely asymptomatic, I would certainly advise undertaking a gluten challenge in order to get formal testing for celiac disease. We have many forum participants who become violently ill when they undertake a gluten challenge and they therefore can't carry through with it. That doesn't seem to be the case with you. The reason I think it is important for you to get tested is that many or most people who don't have a formal diagnosis find it difficult to be consistent with the gluten-free diet. They find ways to rationalize that their symptoms are due to something other than celiac disease . . . especially when it becomes socially limiting.  The other factor here is by being inconsistent with the gluten free diet, assuming you do have celiac disease, you are likely causing slow, incremental damage to your gut, even though you are largely asymptomatic. It can take years for that damage to get to the point where it results in spinoff health problems. Concerning genetic testing, it can't be used for diagnosis, at least not definitively. Somewhere between 30 and 40% of the general population will have one or both of the two genes known to be associated with the development of active celiac disease. Yet, only about 1% of the general population will develop active celiac disease. But the genetic testing can be used as a rule out for celiac disease if you don't have either gene. But even so, that doesn't eliminate the possibility of having NCGS (Non Celiac Gluten Sensitivity).
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    • trents
      Welcome to the celiac.com community, @ThomasA55! Before I give my opinion on your question about whether or not you should undergo a gluten challenge, I would like to know how you react when you get a good dose of gluten? Are you largely asymptomatic or do you experience significant illness such as nausea and diarrhea? You mentioned intermittent joint pain before you began experimenting with a low gluten diet. Anything else?
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