Crazy Vertigo All Day Long?

[UnhappyCoeliac]

Have not been following my gluten free diet for a while now possibly a year and a half and it started early in the year with a virus... the feelings of vertigo... I thought of yeah I just threw up this vertigo feeling is a virus, despite the fact I had never had vertigo for the first 23 years of my life

Fast forward a few months... And for the last 3 week I have been having vertigo every 3-4 days. Today my Vertigo came at 9.30am when I was on my morning walk, needless to say it was a bit scary trying to balance myself and get home. That was 9am it is now 6pm, I have been in bed ans sitting all day, but things still CRAZY when I move my head back, Im still dizzy, still tough to walk, still feel like my head is being left in the same spot as before when I move it... It has never lasted 9hours before though has ANYONE experience anything similar.

I went to my doctor (who is poop told him I had celiac he looked at blood tests and couldn't even tell)

He tested for benign posture vertigo... nothing happens Vertigo isnt precipitated by head movement it simply ATTACKS from anywhere at anytime, If Im walking, if I just woke up, If im sitting at computer whatever it comes. anyone? Im gluten free from this point but worried I wont recover from vertigo to see my fav band in 2 weeks.

[Chell]

Oh yes, I know that feeling. Mine turned out to be low B12. Have you had yours checked? You can buy it in the vitamin section if you want to try taking some to see if it helps. I use the sub-lingual drops. But that's not enough for me so I have to get injections every 3 weeks. When mine is low I experience a few other weird symptoms.

Good luck figuring out what is causing yours. Have fun at the concert!

[ravenwoodglass]

You really need to get back on the diet. What you may be dealing with is gluten ataxia which means that the antibodies are attacking your brain. I know it is a pain to be gluten free but it is what you need to do. Sublingual B12 can help the nervous system heal faster but what will help the most is getting back on the diet.

[kareng]

When I was severly anemic, I would get dizzy. I could not get enough oxygen in my blood for my brain and other parts to be happy. Maybe he would teat you for iron, b 12, D, Calcium, the whole anemia CBC panel.

[UnhappyCoeliac]

Its subsided a little today after 30 or so hours. Last time I recovered though and felt good for 4 days or so and it returned, completly eliminated gluten at this point.

Although a bag of chips is hardly ideal but all thats available to me, thanks for the responses

My ears were checked and nothing and havent had vision loss or weakness with the vertigo either so maybe its celiac and I just got eliminate gluten, I hope its that simple.

Had a nutrients checked in the last month, despite not following the diet I had no deficiency which was strange

[UnhappyCoeliac]

Hasnt come back since I havent eaten gluten, but I still feel like it is lurking waiting for tinniest stuff up to give me violent headspins

[UnhappyCoeliac]

I ate toast and gluten-free peanut butter, cooked in my own toaster

bacon and eggs cooked in a clean pan

and packet roast turkey which is gluten free yesterday

AND somehow I feel like I have been gluttened judging by bowl movements. UNBELIEVABLE I think it could only be the butter turkey bacon, all CLEARLY marked as gluten free.

And worst of all I had a 10 minute nap... and bam when I came out of sleep the world was spinning again, just when Ive got a busy week ahead, just when im losing weight, and exercising vertigo strikes me down, and today I am to 'scared' to move out the door in case I start spinning no nothing. Absolutely devastated. I think its the gluten again. Never even experienced to vertigo once to this july I hate how this piece of poop symptom is working its wasy into my life on a weekly basis.

[T.H.]

Right there with ya - vertigo is just the pits. I got glutened a couple days ago, and the vertigo hit, but it's been improving. Then today I just barely tripped on some gravel but the vertigo hit at the same time and I went down like a ton of bricks and really did a number on my ankle. It's shocking how much the vertigo can affect you when it hits, yes?

SThe longer I've been gluten free, the less gluten will set the vertigo off for me, too. I can't have stuff that's <20 ppm of gluten, or <10ppm of gluten - it makes me sick. I have to find stuff that's <5ppm or less, usually less.

So I'm in that same boat, where a lot of food that is labeled gluten free won't work for me. I've now gotten in the habit of calling every company to find out how much gluten the product has (that's how I figured out just how much gluten I can tolerate). It has helped to cut down on gluten reactions, for both me and my daughter. IF they don't test for amounts, I ask about facilities, lines, and even what soap they use to clean their lines with, to see if it seems safe to eat.

[UnhappyCoeliac]

Right there with ya - vertigo is just the pits. I got glutened a couple days ago, and the vertigo hit, but it's been improving. Then today I just barely tripped on some gravel but the vertigo hit at the same time and I went down like a ton of bricks and really did a number on my ankle. It's shocking how much the vertigo can affect you when it hits, yes?

SThe longer I've been gluten free, the less gluten will set the vertigo off for me, too. I can't have stuff that's <20 ppm of gluten, or <10ppm of gluten - it makes me sick. I have to find stuff that's <5ppm or less, usually less.

So I'm in that same boat, where a lot of food that is labeled gluten free won't work for me. I've now gotten in the habit of calling every company to find out how much gluten the product has (that's how I figured out just how much gluten I can tolerate). It has helped to cut down on gluten reactions, for both me and my daughter. IF they don't test for amounts, I ask about facilities, lines, and even what soap they use to clean their lines with, to see if it seems safe to eat.

It is completely disabling can barely even read. Havent had Vertigo again since the last time my doctor says my ears are inflamed and it could be a low grade ear infection, but that doesn't really correlate with the fact vertigo seems worse when gluten is in my system. One doctor looked at my ears and said they are fine, another says they are inflamed and I need anti biotics how do they get payed so much!

The 4th occurrence was set off by gluten, Im pretty sure I ingested a small bit of it in chicken that wasnt labeled gluten free BUT had no gluten ingredients, turns out it has gluten, been gluten-free properly for 3-4 days now... BUT every time I think im over vertigo it comes back so at this stage not even hopeful. 3 concerts and a wedding coming up this weekend omg please lord no vertigo while im in a public place or i'll strangle my doctor!

[T.H.]

You know, don't know if this will help or not, but maybe?

I have to be super, super gluten free to avoid any vertigo, so if it helps, this is a version of my diet that seems to help me, at least. I guess I'd call it the good 'starting' diet to eliminate as much gluten as possible, for a week or two, see if it helps, ya know? Then one could move up and try out different brands to see what helped, later.

No oils, no spices, no nuts, no beans, no grains, no luncheon meats, no dairy, no poultry, no meats cut up at the meat counter. I use RealSalt for my salt (others have still made me react with vertigo).

I eat organic produce, and peel all fruit and veggies that I can peel. I wash all the others with 7th generation soap and rinse really well. Tomatoes haven't done well unless I grew them at home. Herbs haven't done well unless I grew them at home. I eat rarer meats that are processed in places that seem to be more gluten free, like bison meat and elk meat (doesn't always work, but usually). Sometimes beef seems all right, sometimes not. Fish only if it's wild-caught and flash frozen right after catching. I buy winter squash and roast the seeds myself with just a little salt added - you can eat all winter squash's seeds, last I looked, and so far that's proven true for myself.

This particular diet is as gluten free as I've been able to make it. All the stuff I avoid has a higher risk of gluten CC, even if that risk is still low by most celiac's standards. But with the vertigo being so bad - as I know you know - it was REALLY motivating to try this diet out.

Oh, Bariani olive oil is one I hear good things about, CC-wise. Haven't tried it yet, though.

And just....I'm so, so sorry you have to deal with this! I went to an ear, nose, and throat doctor to check for ear problems, balance issues. Went to a neurologist for the same thing. No luck. I also had ear infections and sinus infections a lot before I went gluten free, so I was thinking ears were the issue for a long time. Completely eliminating gluten: that worked for me. Pain in the petutie. But it worked for me.

I hope so much that this, or something that can be easily discovered, is your difficulty so you can get it taken care of and feel better!

[Anya]

I had also severe vertigo, but did not know at that time what I was dealing with. As the first defense I used sudafed and it seemed to help. Not sure why it did. I then finally went on a complete food elimination diet, eliminating gluten, dairy and soy (an a couple of other likely allergens) and got complete resolution. Then I spent years fine tuning what I could eat and what made me sick. In this process I found out that besides gluten I could absolutely not have MSG or "free glutamate" (which includes a list of about 20 or so additives - click on "Download" on this site for a complete list of ingredients Open Original Shared Link). I have to also avoid all dairy. I think that gluten does the damage to the gut, but there are other substances like casein and "free glutamate" that cause symptoms like vertigo. For me, there were plenty of other issues that resolved besides the vertigo, e.g. hypoglycemia, infection in my knee, very itchy rash.

Earlier this year, I had hired a nanny who was celiac and she told me how she was 90% better, but she kept looking for the "hidden gluten" in foods trying to figure out what made her sick. I shared the "free glutamate" list with her and she could relate her reactions to some of the ingredients.

Good luck!

[mushroom]

Anya, your link does not work. I believe if you edit it to eliminate the parentheses at the end that it probably will, i.e., Open Original Shared Link