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Dizziness? Anybody else?

AhhhNold

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AhhhNold Rookie
AhhhNold
Posted

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.

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tessa25 Rising Star
tessa25
Posted

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 Newbie
Ali Montone
Posted

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 Grand Master
Ennis-TX
Posted

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 Mentor
Jmg
Posted
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 Community Regular
apprehensiveengineer
Posted
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 Experienced
Gemini
Posted

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.

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    • knitty kitty
      Son's legs shaking

      By knitty kitty · Posted

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    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

      Neither of them were anemic 6 months after the Celiac diagnosis. His other vitamin levels (d, B12) were never low. My daughters levels were normal after the first 6 months. Is the thiamine test just called thiamine? 
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      Yes, I do think they need a Thiamine supplement at least. Especially since they eat red meat only occasionally. Most fruits and vegetables are not good sources of Thiamine.  Legumes (beans) do contain thiamine.  Fruits and veggies do have some of the other B vitamins, but thiamine B 1 and  Cobalamine B12 are mostly found in meats.  Meat, especially organ meats like liver, are the best sources of Thiamine, B12, and the six other B vitamins and important minerals like iron.   Thiamine has antibacterial and antiviral properties.  Thiamine is important to our immune systems.  We need more thiamine when we're physically ill or injured, when we're under stress emotionally, and when we exercise, especially outside in hot weather.  We need thiamine and other B vitamins like Niacin B 3 to keep our gastrointestinal tract healthy.  We can't store thiamine for very long.  We can get low in thiamine within three days.  Symptoms can appear suddenly when a high carbohydrate diet is consumed.  (Rice and beans are high in carbohydrates.)  A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function, so symptoms can wax and wane depending on what one eats.  The earliest symptoms like fatigue and anxiety are easily contributed to other things or life events and dismissed.   Correcting nutritional deficiencies needs to be done quickly, especially in children, so their growth isn't stunted.  Nutritional deficiencies can affect intelligence.  Vitamin D deficiency can cause short stature and poor bone formation.   Is your son taking anything for the anemia?  Is the anemia caused by B12 or iron deficiency?  
    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc.  Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food. The only processed food they eat regularly is a bowl of Cheerios here and there.  Could shaking legs be a symptom of just a one-time gluten exposure? I guess there's no way to know for sure if they're getting absolutely zero exposure because they do go to school a couple times a week. We do homeschool but my son does a shared school 2x a week and my daughter does a morning Pre-K 3 x a week.  At home our entire house is strictly gluten free and it is extremely rare for us to eat out. If we eat at someone else's house I usually just bring their food. When we have play dates we bring all the snacks, etc. I try to be really careful since they're still growing. They also, of course, catch kids viruses all the time so I  want to make sure I know whether they're just sick or they've had gluten. It can be pretty confusing when they're pretty young to even be explaining their symptoms! 
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