Dizziness? Anybody else?

[AhhhNold]

Back on ingesting gluten for the next few weeks until my EGD and sometimes struggle with dizzziness. Tonight especially and I consumed the most bread today that I have all week today. It gets better when I lay down, but man when I walk and really move around I get almost light headed, and I feel like if I'm walking in a straight line like my steps are out of sync. Anybody else deal with this craziness? Get any answers as to what it is? Im a service manager for a contracting business, I'm constantly moving, driving, on the go, working with tools. Something like this could be bad for my work.

[tessa25]

I was anemic when I was in my teens. I used to get dizzy and almost blackout. Never occured to me to tell my mom.  Lol. She found out when I got up from a chair and promptly fell to the floor. Iron pills fixed me right up.

Have your doc order a blood test of your iron levels.

[Ali Montone]

I am dizzy when upright, mostly on standing still, after a year of testing I ended up at the cardiologist. He performed a tilt table test.. I was diagnosed with POTS..postural orthostatic tachycardia syndrome...Unfortunately, like Celiac, lifestyle modification is the only "cure"...

[Ennis-TX]

Yeah gluten causes me nerve and brain issues, look up gluten ataxia and peripheral neuropathy. Causes sorta of a out of balance meh state where things just do not seems to work right. After years being gluten-free I noticed when I get major glutened (has happend twice in 2 years) My entire body looses motor control and I collapse.   Most of the time a slight reaction to inhaled flour or residue will cause numbness and disorientation at times. Really messes you up with you cook a lot, should see the burn and cut scars on my hands lol.

[Jmg]

5 hours ago, Ali Montone said:

I am dizzy when upright, mostly on standing still, after a year of testing I ended up at the cardiologist. He performed a tilt table test.. I was diagnosed with POTS..postural orthostatic tachycardia syndrome...Unfortunately, like Celiac, lifestyle modification is the only "cure"...

I have this, well self diagnosed as I'm not going back on gluten to reproduce it. The good news is that following the diet all but eradicated it. 

[apprehensiveengineer]

13 hours ago, AhhhNold said:

Back on ingesting gluten for the next few weeks until my EGD and sometimes struggle with dizzziness. Tonight especially and I consumed the most bread today that I have all week today. It gets better when I lay down, but man when I walk and really move around I get almost light headed, and I feel like if I'm walking in a straight line like my steps are out of sync. Anybody else deal with this craziness? Get any answers as to what it is? Im a service manager for a contracting business, I'm constantly moving, driving, on the go, working with tools. Something like this could be bad for my work.

I have been super anemic (ferritin 0, hemoglobin 9 g/dL) and also experience dizziness as a result of gluten consumption.  The feelings of dizziness and vertigo are pretty similar in my experience, but when I was anemic blackouts due to vertigo were more common. That said, I was undiagnosed at the time of being very anemic, so it's difficult to delineate the response I guess.

It's usually one of the first signs that something is amiss for me - if it's a low level CC, my stomach problems aren't usually bad enough to be obviously caused by gluten, but if I start feeling dizzy, then I know I messed up. The feeling ranges from feeling I'm kind of floating/in some bizarre virtual reality to the spins (which sometimes leads to vomiting if I'm unlucky). I have found that riding in cars or moving around a lot makes it worse (or makes me notice it more). 

Caveat here is that I've not seen a doctor about this. Like many neurological issues that are transient, it's difficult to get much if you aren't presenting with symptoms in the office (I've worked with specialists in this area on work matters and this is a huge problem in general). Plus, I get the sense that most doctors I've seen wouldn't think this problem was potentially related to celiac, since many of my more well-known non-GI symptoms (DH-like skin rash) have been dismissed before. Good on you for trying though.

[Gemini]

Yup.....another Celiac symptom that doctors never connect because it's from eating gluten and they just don't get that.  I had extreme dizziness for YEARS  and it all resolved on the gluten-free diet.  Give it some time but it should resolve on its own.