Dizziness

[guitarplayer4God]

Does anyone experience dizziness as part of celiac disease?

[TiffersAnn]

Yes! and this is something that I've experienced as a child. My doctors told my parents that I'd have to "get used to" and to "be careful not to get up too fast..." because they said nothing was wrong with me. Since I've gone gluten free my dizziness has seriously reduced, and I no longer get car sick like i used to do.

[jennyj]

A few years ago I had dizziness so bad they did a ct-scan. It lasted about 2 months then went away. Last week it started again when I get out of bed or when I look up.

[dionnek]

I've always had dizzy spells and occassional black outs. The dr's said it was b/c of my anemia, even when I was taking 3 iron pills a day! I think it is the celiac, although I haven't been gluten-free long enough for it to get any better.....

[ravenwoodglass]

I have had gluten ataxia since childhood. I also had low blood pressure and absent reflexes that were never explained. This eventually progressed to serious nerve damage. Almost 4 years gluten-free and almost all nerve damage has healed with most obvious improvement at 6 months. In addition to the iron I would consider taking sublingual gluten-free B12 also. Even before I was diagnosed and became gluten-free the B12 helped a bit.

[kimjoy24]

Yes, I had terrible dizziness a couple of years ago that has slowly resolved over the past year since going completely gluten-free. At first, I was told it was low blood pressure, and I was put on a high salt diet that made me completely ill. I had a MRI done, but like others mentioned, I was told I would just have to live with it. Officially they diagnosed me with positional vertigo. And as someone else mentioned, mine is associated with looking up. I still get bouts of it now and then, especially if I'm in a store with tall shelves, like a grocery store.

I tried the sublingual B-12 but found it didn't really help me. Others have obviously had better results. I was sent to a physical therapist who gave me exercises to do. Most of them are readily available on the Internet. The idea is to challenge and correct your brain signals by engaging in the activity that makes you dizzy. At first, I felt like they were completely useless, but at some point, the dizziness began to resolve itself so perhaps the exercises did some good.

[guitarplayer4God]

wow thanks 4 all the replys I thought I was the only one that got dizzy. I've been to about 20 doctors and they could never figure out what was trigering the dizziness I've even been to Mayo clinic and they didn't help either. But I think the dizziness is related to the celiac.

[dionnek]

I have had gluten ataxia since childhood. I also had low blood pressure and absent reflexes that were never explained. This eventually progressed to serious nerve damage. Almost 4 years gluten-free and almost all nerve damage has healed with most obvious improvement at 6 months. In addition to the iron I would consider taking sublingual gluten-free B12 also. Even before I was diagnosed and became gluten-free the B12 helped a bit.

Just curious - do any of you "dizzy people" also have problems getting heart rate readings on machines? My blood pressure has always been extremely low, and I can never get a reading on the heart rate monitors (on exercise equipment, at grocery store, etc. - I know it's not the machine b/c I've had my husband come along behind me and it works for him!). I also have problems with those stupid touch screens at ATMs - it won't read my finger/thumb! One dr. said I had "absent reflexes", and I can't spread my toes, which apparantely you are supposed to be able to do? Very weird.

[jerseyangel]

Just curious - do any of you "dizzy people" also have problems getting heart rate readings on machines? My blood pressure has always been extremely low, and I can never get a reading on the heart rate monitors (on exercise equipment, at grocery store, etc. - I know it's not the machine b/c I've had my husband come along behind me and it works for him!). I also have problems with those stupid touch screens at ATMs - it won't read my finger/thumb! One dr. said I had "absent reflexes", and I can't spread my toes, which apparantely you are supposed to be able to do? Very weird.

I was always dizzy--to the point where I had some cardiac testing to make sure my heart was ok (it is). I also was anemic--and that was most likely the reason for the dizziness. I still get dizzy if I get glutened. Otherwise, the anemia and dizziness are gone. My doctor has told me more than once that it is hard to get (hear) a reading on my blood pressure--although mine tends to run high. She says the same about my pulse--hard to find and feel. Years ago, a doctor told me I had no reflex in my ankles (?).

[Susan123]

On the other side of the coin. I have been dizzy since last july and my mother has been dizzy for 11 years. I am still dizzy after being gluten-free for 6 months. It was determined that mine was Positional vertigo. I went to a ENT doctor who referred me to a Vestibular Therapist. They run many tests but usually can pinpoint the cause based upon eye movements after having you do certain things. I was then referred after it was determined it was positional vertigo (inner ear) to a vestibular therapist who gave me eye exercises to do twice a day. It helps because when I don't do them I get dizzy again. My dizziness is related to headaches and when my eyes move from left to right or up to down in order words from one extreme to the other. I was told it was caused from air pressure of flying and anatomy. I am predisposed due to the shape and size of my ears to have problems... the air pressure loosened these granules that hang off hairs in your ears. When they disconnect they bounce around the sensitive ear drum causing balance issues. Two aunts of mine have it too. So you might want to check it out also in case it is not related to celiac and gets worse.

[ArtC]

I was dizzy for many years prior to finding out that I had Celiac Disease. I was diagnosed with Dysautonomia, Postural Orthostatic Tachycardia Syndrome (POTS). I have to eat a very high salt diet. I have been Gluten free almost 4 years and my dizziness is going away. (I had dizziness, very low blood pressure, rapid heartbeat, black outs, couldn't stand for very long, etc.) After many years of trying to find answers, I found the right doctor at Mayo Clinic who knew what was going on and could test me for it. My Celiac doctor says he has several patients with POTS. I think the Gluten had a big part in it.

[CarlaB]

Just curious - do any of you "dizzy people" also have problems getting heart rate readings on machines? My blood pressure has always been extremely low, and I can never get a reading on the heart rate monitors (on exercise equipment, at grocery store, etc. - I know it's not the machine b/c I've had my husband come along behind me and it works for him!). I also have problems with those stupid touch screens at ATMs - it won't read my finger/thumb! One dr. said I had "absent reflexes", and I can't spread my toes, which apparantely you are supposed to be able to do? Very weird.

Sometimes my "mouse" on my laptop doesn't register my finger. If I put hand lotion on or get my finger wet, it does. Same thing in those elevators that have touch sensitive buttons. Sometimes I have to ask someone else to touch the button.

I have low blood pressure and often get dizzy.

[queenofhearts]

Yes, yes, yes! I have always been a "dizzy dame!" Yet another of my mystery symptoms that seems to be linked to Celiac-- it's just amazing. I do have rather low blood pressure too, & occasional fainting spells... especially in my teens I seemed to crumple often for no apparent reason. Also when I was pregnant... hmmm, maybe changing hormones are involved now that I think of it.

I'm going on 3 weeks gluten-free (though I think I may have had some glutened vitamins for part of that time) & though the dizziness still bothers me, I'm now looking forward to being rid of it too! Hurray!

Leah

[Mandy F.]

I had some serious problems with dizziness a couple of years ago. I would wake up so dizzy that I would have to crawl out of bed to get my Antivert, take it, wait for it to kick in, then start my day. It took a while, but I finally saw a doctor who figured out that it was just allergies causing fluid build up in my ears. I still get it occaisionally if I'm doing a lot of work outside or something but as long as I take an allergy pill, I seem to be o.k.

[Ashley]

Yes, especially during the time I was suffering from Celiac undxed. A lot of times my vision would black out from getting up too fast. I've also gotten so dizzy and fatigued that I passed out. Now that I'm gluten-free, this has gone down tremendously.

-Ash

[TCA]

I get dizzy a lot too. Never thought about the gluten connections, though.

[jesscarmel]

Hi

I went to the doctor jsut yesterday for my dizzniess where room doesnt spin but shifts........its really weird and makes me nauseous and very anxious. he gave me meclazine for it but said it should go away on its own. he said it was from an inner ear imbalance with no known cuase. he did not think it was related to celiac. ive only had it since ive been gluten free so who knows............its really scary though.

is anyone taking meclazine for dizziness?

Jess

[Guest amyjack]

I get this weird sensation of dizziness and it almost feels like an out of body experience. I feel like I'm looking down on myself. It passes after 30 seconds or so, but happens several times a day during a bad attack. Any doctor I've told has no explanation and I believe some think I'm a little nuts. It just gets me so down.

[floridanative]

B12 deficiency causes dizziness for some - it did for me. Once I went off gluten and added a B12 otc supplement all my neuro sypmtoms went away. I'm getting my B12 level tested tomorrow along with my iron so I can try and stop taking both since I'm now absorbing nutrients. Also, Dr. Rudert (Celiac expert in Atlanta) said that not drinking enough water causes dizziness as well.

[aspenkeep]

Just curious - do any of you "dizzy people" also have problems getting heart rate readings on machines? My blood pressure has always been extremely low, and I can never get a reading on the heart rate monitors (on exercise equipment, at grocery store, etc..

I get dizzy a lot also and it's always been attributed to low blood pressure.

I got a kick out of your heart rate monitor problems. I've never had an automatic heart rate monitor, blood pressure machine or pulse machine work for me. Even when my biopsy was taken, the machines wouldn't work. Before I was put under, I kept teasing the nurse about it. "Am I dead again?" I didn't think that was related to Celiac though, just being small and having low blood pressure.

Don't you just hate the automatic blood pressure machines that keep retesting if they don't get results the first time? Puts my arm to sleep.

[dionnek]

I've started taking a B12 supplement, so hopefully with that and the other vitamins and (eventuallY) my gut healing, the dizzyness will stop. Don't know if I'll ever be able to use the heart rate monitors though

[cgilsing]

YES! I don't now that I'm gluten-free, but I used to be really dizzy at night! If I got up to pee or anything at night I had to hold onto things to keep my balance! Like so many things it's one of those things that I hadn't really thought about getting so much better until I read this post! I don't know how many times something like that has been on this board and I read it and think....oh yeah! I haven't had that happen in a long time!

[mesmerize]

I've always had issues with dizziness off and on, and my current doctor (the GOOD one who finally diagnosed me with celiac) says it has something to do with my adrenal function, which was having problems because of my inability to absorb the right things because of the celiac. (She explained it in a very long and complicated way, sorry I don't remember all the details!) I had an adrenal test after that and sure enough my levels were low. We decided to hold off on trying to treat it since hopefully the problem should resolve itself once I get all healed up. I haven't had a major dizzy spell in a while now... so far so good, I guess!

I wish I could remember the exact way that my doctor explained all this... how my celiac, thyroid problems, and adrenal problems are all interrelated, and how the celiac caused the other two. The way she explains it makes so much sense!

~Sara~

[des1713]

I was also recently diagnosed with POTS after 2years of having symptoms of dizziness, tachycardia, fatigue orthostatic intolerance and pre-syncope on a daily basis. The dizziness came on at the same time I had a positive biopsy for Gluten Intolerance. The cardiologist I finally saw who is an expect in dysautonmia said it is very common that an autoimmune disorder in the gut will trigger autoimmune damage to nevrous system and thus POTS. I am slowly getting better but the prognosis is 2-5 years for recovery.