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allison

Dizziness

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Hi everyone,

Just wondering if anyone else has been dealing with dizziness and whether you have found that anything has helped? I can't seem to get rid of it, and it goes in the category of "major-life-disrupter" because it's hard to be out of the house much!

I was diagnosed with POTS (poorly regulated blood pressure that causes me to faint very easily), but this seems to be distinct.

Heeeeeelllllp.

Thanks everyone,

Allison

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Hi Mike sans gluten,

Your experience is helpful! I have been adding more salt, but it doesn't seem to do much. Maybe this is just related to whatever sort of gluten-related relapse I'm in currently...I will also try to make sure I go for a walk everyday...I'm normally relatively active, but when I'm not feeling well that gets sharply curtailed.

Just hoping it will go away!

Allison

Allison,

I went through a period of dizziness prior to going gluten-free... it was really a life-disrupter as you say. I was given a tilt-table, where I tested positive for POTS, but later I found out that test may have been less than useful because I was also anemic, which can cause a false positive. Also, anxiety can cause a false positive for POTS and cause/accentuate the dizziness.

Dizziness was just one of the "neuro" type symptoms I had from the gluten exposure. It took month for it to go away completely after going gluten-free. Some things, like sitting in front of a computer screen for long periods of time, really aggrevated the dizzy feelings.

The doctors gave me some meds for seasickness basically (in case it was inner-ear related), which did not do a darn bit of good. In my case, I found that if I was excercising I felt better, and would rarely get dizzy during a brisk walk or jogging or biking odd as that may be. It was almost always when I was sitting or standing still that it'd hit me. I worked on relaxation techniques and such too. And, with a gluten-free diet and ample time to recover, it all finally dissipated.

Oh, if you happen to have low blood-pressure too, you may need to up your salt intake to help with the POTS -- my cardio told me to start eating more salt, since I had fairly low BP too. I tried that for a while, but mainly the gluten-removal fixed me up more than the salt did.

Hope my experience helps, if for nothing else than to know someone else has been through it.

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Hi

I have had very bad dizzines for months, but the weird thing is its only after going gluten free. i've had an mri and in a month i have some weird ear tests where they spin you around. for me the room sort of shifts which i geuss is a form of vertigo. i havent found anything that works :(

Jess


Diagnosed in March 2006 after being in the hospital due to pancreatitis due to undiagnosed celiac

years of being told i had IBS, taking numerous IBS medications (since the age of fifteen)

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Hi

I have had very bad dizzines for months, but the weird thing is its only after going gluten free. i've had an mri and in a month i have some weird ear tests where they spin you around. for me the room sort of shifts which i geuss is a form of vertigo. i havent found anything that works :(

Jess

I too have had bad dizzy spells and am having one now. I have been gluten free for sometime so I am not sure if there is a correlation. I actually am going to have an mri done the week after next just to make sure it is nothing else. Hopefully that will come back fine. Its just frustrating though.


Diagnosed with Luekemia in 1995- didn't have to have bone marrow transplant but went through strong chemo for a year- ever since have been in remission

Diagnosed with Graves Disease in Oct. of 2004

Diagnosed with IBS in 2001- ever since then had bloating, depression, skin rashes (DH- I assume), stomache pains, heartburn, joint pain and the list goes on - Started doing research of my own on celiac and have been gluten free since November 2004.

Had the blood test came back negative but of course I had been gluten free for 7-8 mos.

I have noticed an enormous improvement bieng gluten free but still suspect I have other food allergies

Mom had breast cancer and is a type II diabetic-

Dad has had Parkinson's since he was 45

A felllow colleague sugested to become a member of this board- it already has helped just by reading through some of the topics i had quesitons on so I am very thankful to have found all of you.

Abbie

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Horrible dizziness was one of my symptoms when I was trying to add spelt into my diet (before I realized I was permanently gluten intolerant) a few years ago. I didn't realize it was related to gluten until I went totally gluten-free.


Liz

Started Specific Carbohydrate Diet on 8-16-09 because son was diagnosed with Ulcerative Colitis and want to give him moral support.

Diagnosed with Minimal Change Nephrotic Syndrome in 2003. Discovered that going completely gluten-free put me in remission.

I would have despaired unless I had believed that I would see the goodness of the Lord in the land of the living. Psalms 27:13

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Yeah, the room-shifting thing sounds familiar. My vision is/was otherwise fine, but every so often everything would sorta "s$#&f" a bit where it'd have me grabbing a table or desk. I would be working at the computer, and all the sudden this wave of visual shifting would come over me, and I would feel like I would fall over, or partially tip to one direction, and find myself grabbing the desk to keep from going down. Usually the episodes were short lived - a few seconds - but sometimes there would be quite a few of those periods during the day. Really sucked! Another thing that went with it was some sort of peripheral neuropathy, especially in my feel. It gave me these weird paresthesias or such where the floor under my feet would feel as though it was moving even when I was standing still. That made for some weird times. Thank god, it is all 95+% gone now, and I sure hope it stays gone as long as I remain gluten-free.

I did suspect that some of the perceptual issues were due to malabsorption during my pre-gluten-free times. I.e., not getting the proper mineral/vitamin absorption, and thus really messing with my brain, nerves, and other organs. At the Columbus Celiac conference last week, one speaker did cover the increased recognition of neurological manifestations of celiac disease including "gluten neuropathy". This was discussed in the context of "novel manifestations and associations", but it seems there are quite a few that have experienced some of this type of thing. I sure hope you find a solution, and that with time (sooner rather than later), your vertigo goes away.

i also had the feeling the floor was moving the other day- its so horrible. the neurologists ive seen have all said inner ear and dont think its celiac related. the weird thing is it started a month after going on the diet, wich doesnt really make sense and its gotten worse. our house is completely gluten-free and i dont susually eat at restuarants so theres no chance of cc. i have no idea what is its but im praying it stops soon. did you have any tests done or any meds that were helpful?

jess


Diagnosed in March 2006 after being in the hospital due to pancreatitis due to undiagnosed celiac

years of being told i had IBS, taking numerous IBS medications (since the age of fifteen)

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Jess,

This may sound really "out there", but do you take Prevacid? I had those exact things happen to me while I was on it--it was very frightening. I wondered if it could be the medication, and as soon as I stopped taking it, the dizziness and vertigo went away.


Patti

"Life is what happens while you're busy making other plans"

"When people show you who they are, believe them"--Maya Angelou

"Bloom where you are planted"--Bev

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Jess,

This may sound really "out there", but do you take Prevacid? I had those exact things happen to me while I was on it--it was very frightening. I wondered if it could be the medication, and as soon as I stopped taking it, the dizziness and vertigo went away.

hi

i dont take prevacid but i take celexa and always wondered if since being gluten free ive been absorbing it differently causing dizzines. its not really an option to go off it right now with my wedding coming up. in the past ive had a very hard time going off those types of meds and have major withrawl symp;toms. i also take birth control, multivitamins, and a probiotic.

Jess


Diagnosed in March 2006 after being in the hospital due to pancreatitis due to undiagnosed celiac

years of being told i had IBS, taking numerous IBS medications (since the age of fifteen)

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i dont take prevacid but i take celexa and always wondered if since being gluten free ive been absorbing it differently causing dizzines.
I think that's a possibility, several people here on the board have had to lower their dosage of different meds because they started to absorb them better after going gluten free. maybe it would be an idea to ask your doctor about, not going off it but just adjusting the amount?

Pauliina

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Yep, I have it. Have had it over a year now--had it before I went gluten/casein free and still have it after being gluten/casein free nearly a year. I describe it as feeling as if my brain is floating. In my case it definitely seems related to blood pressure at least some of the time...I have very low blood pressure and I've tried to take it when I'm having a particularly "dizzy" day...my blood pressure is always lower than normal. I already eat tons of salt, so that doesn't help in my case. I've just started seeing some new doctors so I'm hoping they can help. I've had CT scans, blood tests, inner ear function tests, hearing tests, eye exams, you name it, lol.

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Guest Norah022

Yup live with it constantly. Had it before going gluten free and have it even worse since going gluten free.

Nothing helps....and it a MAJOR life disrupter.

In addition to the dizziness, I have fainted once and I have breathing issues (which we have connected to acid reflux but I am not so sure)

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That's exactly what it feels like--a floating brain--unattached to my shoulders, or maybe even on a balloon string. Weird. I hate it.

I have been trying lately to ignore it and just pretend it is not happening, get over my fear of it (I'm afraid because I do faint sometimes too and I have hurt myself before--and what if I'm in a public place?!)

But I have that breathing thing too!!! They say it is a reflux thing, and I took prevacid for a while (no weird side effects) and it didn't seem to get better, but now that I'm not taking it it does seem to be worse.

quote name='Norah022' date='Nov 12 2006, 01:01 PM' post='232948']

Yup live with it constantly. Had it before going gluten free and have it even worse since going gluten free.

Nothing helps....and it a MAJOR life disrupter.

In addition to the dizziness, I have fainted once and I have breathing issues (which we have connected to acid reflux but I am not so sure)

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I have Benign Paranysm....(long word I can't remember how to spell) Positional vertigo. It is a strange disease where the floaters in your inner ear get dislodged and you get really dizzy.... like falling over for no reason. Every several years for about the last 10, I just start getting dizzy. I tip over & often experience symptoms of the room spinning. First time it happened, I called the doc as I could hardly drive as I felt as if I was going to tip over even while I was driving. It is corrected by putting your head in several odd positions and not laying flat or bending over for 24 hours after putting your head in these odd positions. I know it sounds crazy but it is a real disorder and can be quite annoying. There is also a disease called Meneire's Disease that affects balance and causes dizziness. Check out MayoClinic.com web site either under dizziness or the two diseases that I mentioned. You can also have an inner ear infection that can affect balance and cause dizziness. Good luck.


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Guest Norah022
That's exactly what it feels like--a floating brain--unattached to my shoulders, or maybe even on a balloon string. Weird. I hate it.

I have been trying lately to ignore it and just pretend it is not happening, get over my fear of it (I'm afraid because I do faint sometimes too and I have hurt myself before--and what if I'm in a public place?!)

But I have that breathing thing too!!! They say it is a reflux thing, and I took prevacid for a while (no weird side effects) and it didn't seem to get better, but now that I'm not taking it it does seem to be worse.

I am on Aciphex and it seemed to be working but I have been off of it for a few days and its getting worse so I cant wait to get back on it. In addition to the breathing problem, I have throat issues as well as pressure in the chest. It really sucks being in college and having so much to do and dealing with these issues becuase they really affect every day life.

The one time I fainted was at a concert...i fell into the arms of a security guard...Yeah talk about embarrassing.

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Fortunately I haven't fainted yet, but nearly did in my surgeon's office during a pre-op appointment in January...they routinely take blood pressure when you first go in...they took it immediately when I said I felt like I wsa going to pass out...it had dropped by more than 10 points. That time it felt like the room was going black and starting from the top down. Weird.

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So i have a dizziness update< i had some testing done at the neurologist called "vestibular testing" which was horrible. that came back normal as did the MRI. now i have to some other test on friday called vemp. if those come back normal he is saying my dizziness is from migraines even though i don t get a headache. has anyone heard of this explaining such frequent dizziness before???

thanks

Jess

p. s sorry allison for taking over this topic :(


Diagnosed in March 2006 after being in the hospital due to pancreatitis due to undiagnosed celiac

years of being told i had IBS, taking numerous IBS medications (since the age of fifteen)

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The migraine part I have never heard of, although, I do have migraines.

As for the dizziness, I do have it. I didn't have it before going gluten-free and it's only been bad for the last several months. It started slowly. I would be hugging Kev and look up, he learned to keep his arm tight around me because when I look up, I tip backwards. As of late, any movement around me makes me dizzy, someone tittering their legs, talking with their hands, cars moving very slowly next to me, any movement slowly in my periphreal vision--sometimes it just hits me. I do have neuropathy and the doctor does feel it may be a part of the neuropathy. Weird!


Deb

Long Island, NY

Double DQ1, subtype 6

We urge all doctors to take time to listen to your patients.. don't "isolate" symptoms but look at the whole spectrum. If a patient tells you s/he feels as if s/he's falling apart and "nothing seems to be working properly", chances are s/he's right!

"The calm river of your life approaches the rocky chute of the rapids - flow on through. You are the same water. The rocks cannot hurt you. Remember, now and then, that you are the water and not the boat. Flow on!

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So i have a dizziness update< i had some testing done at the neurologist called "vestibular testing" which was horrible. that came back normal as did the MRI. now i have to some other test on friday called vemp. if those come back normal he is saying my dizziness is from migraines even though i don t get a headache. has anyone heard of this explaining such frequent dizziness before???

thanks

Jess

p. s sorry allison for taking over this topic :(

I've not heard it explained like that. I know there is such a thing as silent migraines, but don't know much about them...I'm wondering if he thinks that's what it is.

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That's exactly what it feels like--a floating brain--unattached to my shoulders, or maybe even on a balloon string. Weird. I hate it.

I know this is an old post, but I just wanted to say I get this too. It doesn't have anything to do with gluten for me. I've traced it down to a shortage in potassium. It seems to happen the most frequently when I am drinking a lot of fluids, which causes frequent urination, which causes a depletion of electrolytes, in particular - potassium. I can alleviate the dizziness by taking about a 1/4 teaspoon of a salt substitute, like No Salt.

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I know this is an old post, but I just wanted to say I get this too. It doesn't have anything to do with gluten for me. I've traced it down to a shortage in potassium. It seems to happen the most frequently when I am drinking a lot of fluids, which causes frequent urination, which causes a depletion of electrolytes, in particular - potassium. I can alleviate the dizziness by taking about a 1/4 teaspoon of a salt substitute, like No Salt.

how did u figure out it was a pottasium. can they test for that in blood work?


Diagnosed in March 2006 after being in the hospital due to pancreatitis due to undiagnosed celiac

years of being told i had IBS, taking numerous IBS medications (since the age of fifteen)

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I used to have a lot of dizziness before finding out about my celiac, now the only time that really happens is if I get glutened bad. I had an episode of dizziness about 3-4 weeks ago while I was at work...not sure if it was gluten related or if it was actually an illness. It made my whole day horrible but I didn't think i could drive home....so I had to wait till the end of the day so hubbie could drive home.


~~~~Gluten Free since 9/2004~~~~~~

Friends may come and go but Sillies are Forever!!!!!!!

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hi

i dont take prevacid but i take celexa and always wondered if since being gluten free ive been absorbing it differently causing dizzines. its not really an option to go off it right now with my wedding coming up. in the past ive had a very hard time going off those types of meds and have major withrawl symp;toms. i also take birth control, multivitamins, and a probiotic.

Jess

I had constant, horrible dizziness when I was on Yasmin. I couldn't stand up without blacking out. Apparantly that particular pill contains some sort of potassium diuretic (or something like that :huh:) . As soon as I switched to a different brand the problem went away.

I thought I'd throw that out there at the off chance that's the one you take.


"Let food be thy medicine, and let thy medicine be food." - Hippocrates

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I had constant, horrible dizziness when I was on Yasmin. I couldn't stand up without blacking out. Apparantly that particular pill contains some sort of potassium diuretic (or something like that :huh:) . As soon as I switched to a different brand the problem went away.

I thought I'd throw that out there at the off chance that's the one you take.

i take orthocept or its called apri in the U.S. not sure if thats similar to Yasmin. maybe i should try going off it?!


Diagnosed in March 2006 after being in the hospital due to pancreatitis due to undiagnosed celiac

years of being told i had IBS, taking numerous IBS medications (since the age of fifteen)

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i take orthocept or its called apri in the U.S. not sure if thats similar to Yasmin. maybe i should try going off it?!

I think most of them don't actually contain that potassium component but it'd definitely be worth looking in to.


"Let food be thy medicine, and let thy medicine be food." - Hippocrates

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how did u figure out it was a pottasium. can they test for that in blood work?

You can, but I just found out by trial and error. I should mention that there are some drugs (high blood pressure ones mostly, I believe) with which you need to be careful about adding extra potassium.

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