No Idea What's Going On Now

[Reba32]

I was diagnosed Celiac in Dec. 2009, and went gluten free at that very moment. I've been glutened only twice since, and I don't cheat, I won't even eat anything that the label says "may contain" because I have such a severely painful gut reaction.

Last May I moved back to Canada (Whitby ON) from the US and it took me a while to find a doctor. I've been off balance for several months, I went and had my thyroid levels tested and Grave's antibodies because I thought it had recurred (been in remission since 2007). Thyroid levels and anti-bodies showed no signs of Grave's.

The occasional off balance got worse and increased to CONSTANT very loud ringing in my ears (which had been intermittent since an AC/DC concert in 1984 ) and extreme CONSTANT vertigo. Also exhaustion, muscle weakness, brain fog, and other not so fun things like loss of concentration which led to loss of job

This past Thursday I saw an ENT who says I'm a "special case" and he doesn't know what's wrong with me. He only found some minor hearing loss in my right ear, but nothing else he could see to explain the ringing and vertigo. So he's sending me to another specialist at Toronto General Hospital and goodness knows how long that will take to get that appointment! I'm going to guess a minimum of 8 weeks, and then they'll want to do an MRI that I'll have to wait even longer for.

So I'm trying to think of what else is falling apart now. Is it my ear drums, or my brain? Or both? I know neurological disorders are common with celiacs. I figure I had it pretty much my whole life, but wasn't diagnosed until I was 42, so the damage to my body is likely quite a lot. I've also had fibromyalgia since 1988 and I had Grave's disease for several years before it was dx'd and treated.

I know I'm not accidently being glutened, because I have had no symptoms. Seriously, if I get glutened I double over in pain within 20 minutes of injesting it. I've had nothing in a year. The past few days I've been so dizzy and exhausted I can't stand up straight, and walking my dogs has been a chore to say the least! This heat has not helped either.

And no, I'm not dehydrated. I drink between 2 and 3 litres of water every day.

Anybody else have similar symptoms and maybe some suggestions I can take to the specialist to be quicker for a dx? I don't even know what his specialty is, they're jus sending me there because they don't know what to do with me here. Story of my life, as I'm sure you're all too well aware of yourselves!

[T.H.]

So sorry this has been so hard for you!

So...okay, no total solution, but, here's what I have:

super sensitivity to gluten

previously undiagnosed food allergies/sensitivities that cause no hives whatsoever

Here's some of what I get with them that might match your issues:

extreme vertigo, exhaustion, brain fog, memory and decision making problems, focus issues, increased clumsiness. Sounds become very loud/grating/overwhelming. It's not tinnitus, but it's like sound becomes an assault, so...I guess I'd just say that it affects my hearing, and leave it at that. Also have it worse on the left side, and sometimes ear aches or headaches on the left side too.

I have been to ear doctors, neurologists, etc... - they found nothing.

But going super, super, super gluten free AND getting rid of my food allergies - this stuff all went away. Corn has been especially bad for me. I'm not sure if it's minor gluten cc or corn itself - I'm in the middle of testing for that.

The food allergies - I was given a blood test, but what really did the best was going on an elimination diet and keeping a food journal.

Honestly, after going gluten free, I thought I had the tummy flu for a bit, so didn't eat anything for a while. I started to feel tremendously better. And then I was adding in food one at a time, and if it tracked with a bad issue, I dropped it and kept going. Some of the reactions would happen 24 hours later, so I had to keep the journal going for a few weeks. When we did this with my kids, i dropped the 8 major allergens, cooked everything from scratch, basic ingredients, dropped all grains, checked with allergy sites to make sure there weren't hidden allergens. That helped.

Re: the gluten sensitivity. I have met a few celiacs who get neurological symptoms from gluten who can have levels that are too low to get a gut reaction, but still cause a neurological one. A lot of us seem more sensitive to gluten than normal, so often normal gluten-free foods have too much gluten and are an issue. I've only been gluten-free for 2 years now, but my reactions to gluten have seriously gotten worse over the last year, especially neurologically. I got gluten zapped just a few days ago and I'm motion sick all day long for days now from the vertigo...so much sympathy for the vertigo from over here! *hugs*

I was tested for the celiac antibodies on my new diet, and my blood levels are good. My villi is healed now. But I have to be super careful or my brain seems to go fritzy on me, especially my balance. It's bad for at least a couple weeks when minor gluten cc happens. :-(

But some of the allergies seem almost as bad. I react to sugar cane, for example, and it's like my brain loses the ability to think completely. I'm all out of wack, foggy headed, yuck. Some of the allergens give me ear aches, and that's it. Some just make me exhausted and feel like I've got a case of the flu. It's really weird, but if I avoid these foods, the crap goes away, so I don't really care why it's happening, just that changing my diet makes it stop, you know?

I would really recommend thinking about looking at other foods to see if they might be an issue, if you are certain that gluten isn't the issue, which it sounds like you are. A food journal might help. And if you feel like it, you could definitely do the 'chuck it all and start with basic foods' way. It makes it easier to catch what might be doing you in, you know?

You might want to look up salicylate sensitivity, histamine sensitivity, or sulfite sensitivity, too. These ones cross a broad range of foods, but can really mess with your head. Hmmm...I think yeast over-growth can do some funky things to the body, too.

Just...some things you could research briefly and see if they might fit, ya know?

Hope that you find the answer and can feel better soon!!

[rosetapper23]

You may be suffering from a nutritional deficiency. It sounds as though you may be low in either Vitamin B-12 or Manganese. Take a look at this list of symptoms of nutrient deficiencies and toxicities--you'll see that a Manganese deficiency can cause both tinnitus and dizziness:

Open Original Shared Link

If you test low in Manganese, the chelated form is best; and if you're low in Vitamin B-12, you can get shots.

[Simona19]

I agree with both of them, but I will give you some other ideas.

Question: Are you dizzy when you changing position, or after you eat something?

If you have problem after food, right away, or later after 3 hours, you might have dumping syndrome. Some people might get that together with celiac disease.

If you have problem when changing positions, than you might have problem with low blood pressure. You might need more salt in your diet. If you wouldn

[mommida]

Labrynthitis. Is an infection very deep in the ear canal caused from a virus. Some patients have been put on permanent disabilitly.

I had it about 9 years ago and I was so dizzy trying to stand up it would cause me to vomit. I have had a full recovery.

[Reba32]

Thank you for all of your suggestions, I will start googling

I had all the usual allergy tests before I went for the Celiac tests, everything came up negative response, so I'm fairly certain it's not allergies. Additional intolerances maybe, but not allergies.

I did test as sodium deficient right after my Celiac dx, (along with vitimin and other mineral deficiencies) but since then I have tried to make sure that I get adequate salt every day. I don't eat manufactured foods a whole lot, mostly I have a whole natural diet with lots of veggies, berries, protiens and fats, so I sprinkle salt on pretty much every meal. If I sweat, I put salt in my water with some lemon and/or lime wedges.

The dizziness does not seem to be associated with eating or lack of eating. It is constant. Some days are worse than others, but pretty much all day every day, if I move, my head spins. Even when I'm lying down I can still feel it. Which is what confounded the ENT last week. He said I'm special.

Ok, off to Google!

[Simona19]

Thank you for all of your suggestions, I will start googling

I had all the usual allergy tests before I went for the Celiac tests, everything came up negative response, so I'm fairly certain it's not allergies. Additional intolerances maybe, but not allergies.

I did test as sodium deficient right after my Celiac dx, (along with vitimin and other mineral deficiencies) but since then I have tried to make sure that I get adequate salt every day. I don't eat manufactured foods a whole lot, mostly I have a whole natural diet with lots of veggies, berries, protiens and fats, so I sprinkle salt on pretty much every meal. If I sweat, I put salt in my water with some lemon and/or lime wedges.

The dizziness does not seem to be associated with eating or lack of eating. It is constant. Some days are worse than others, but pretty much all day every day, if I move, my head spins. Even when I'm lying down I can still feel it. Which is what confounded the ENT last week. He said I'm special.

Ok, off to Google!

What you have is vertigo. I had that also. When I was in my bad, my room was spinning. The reason: water build up behind ear drum. My doctor gave me for it special antibiotics that dried the water out and pills for motion sickness. After few days I felt perfect again. Open Original Shared Link

Or you might have this?: Open Original Shared Link

[Reba32]

thanks, but the ENT already ruled out water in my ears and Meniere's disease.

[Simona19]

thanks, but the ENT already ruled out water in my ears and Meniere's disease.

What if you have what I have. After my doctors ruled out all other things I finally found what is wrong with me. My veins doesn't constrict fast enough and I'm not getting blood to my head quickly like it suppose to. My doctor told me that I have problem with parasympatetic nervous system and send me to another neurologist. My CTs and MRIs are always clean, my hearth is healthy, but the little nerves endings are somehow damaged.

Nobody knew what was wrong with me. I saw many doctors, but the last time I saw my doctor he gave me test for autonomic nervous system where I had problem with parasympathetic nervous system. I feel constantly like drunk, like I'm on some drugs. The worse after I will eat something, or 3 hours after food.

Try to right for couple days diary from the time you woke up until you go to sleep. I wrote how much I drank, pee, poop, amounts, ate, how I felt afterwards, how many muscle twitches I had and where, when I got dizzy that I wasn't able to move, what I did when this happened, or how long I lay down on sofa, or in bad, etc. Maybe if you show this to your doctor he would have some idea as my did.

[cahill]

dizziness,ringing in my ears and vertigo are just a few of the symptoms I get when I get CC from soy.

Also have you had your thyroid and your vitamin D checked.??

[beachbirdie]

The occasional off balance got worse and increased to CONSTANT very loud ringing in my ears (which had been intermittent since an AC/DC concert in 1984 ) and extreme CONSTANT vertigo. Also exhaustion, muscle weakness, brain fog, and other not so fun things like loss of concentration which led to loss of job

And no, I'm not dehydrated. I drink between 2 and 3 litres of water every day.

Anybody else have similar symptoms and maybe some suggestions I can take to the specialist to be quicker for a dx? I don't even know what his specialty is, they're jus sending me there because they don't know what to do with me here. Story of my life, as I'm sure you're all too well aware of yourselves!

Here's one more question for you...have you, by chance, had a recent round of antibiotic therapy? With a fluoroquinolone? I know it's a stretch, and I wouldn't have thought to ask except this happened to me early this year. Had a round with ciprofloxacin/flagyl combo, and it gave me tendinitis, tinnitus, fatigue/brain fog, stomach upset,and a lot of other crazy things.

For that matter, have you had ANY new medications recently?

beachbirdie

[Reba32]

Yep, I had my thyroid levels checked already (as mentioned in first post) to check to make sure my Grave's disease hadn't recurred. Everything was within normal ranges, and no Grave's antibodies.

I have not had any medications to trigger this either. No anti-biotics, no anti-virals, nothing. AFTER this all started my GP gave me a script for Serc which is a drug they give you for vertigo, but it did absolutely nothing for me at all. Which is why she referred me to the ENT, who doesn't know what's wrong with me either.

Thanks for more suggestions!

[T.H.]

The dizziness does not seem to be associated with eating or lack of eating. It is constant. Some days are worse than others, but pretty much all day every day, if I move, my head spins. Even when I'm lying down I can still feel it.

Just to check - you mean that the vertigo doesn't wax and wane with eating, or that you've eliminated foods and there was no change?

For me, before I went gluten free and dropped all my foods? I just had constant vertigo, pretty much. For about...I think it was 2 years or so? Maybe a little longer. Every once in a while it would go down to lower levels and get worse again, but it never went away.

Never associated getting worse or better with eating any foods or not eating them, with stress, with anything except maybe getting worse if I tried to turn my head quickly. That type of movement would make my head spin - I remember trying to lean over the bathtub to reach something and going right in because the world spun like mad. I also got that lying down vertigo too - felt like the room was spinning when I wasn't moving at all. Worse if I tried to turn on my side, but there pretty constantly.

It was only after I dropped all the foods and such that it started going away, and since then, it only appears when I eat foods. I suspect in my case it was constant partly because I would come into contact with whatever would trigger it more often than the time it would take to recover from the vertigo, if that makes sense?

Is your vertigo completely constant or is there ANY waxing or waning of it at all? If there's any variation, perhaps tracking that might help give you a clue if there is anything environmental that could be affecting you. An intolerance, like you said, or a chemical sensitivity. Possibly even something like contact with poisons. I know some things like heavy metal poisoning and arsenic can cause vertigo, although I don't know if this is only with an extra large dose or if small doses can cause it too.

So if you have a lot of time in an older house that might have lead paint, that could be an issue. Or was there any known heavy pesticide use in your area that might remain in the soil? Do you feel worse after gardening without gloves? Old pipes in use in your house that might have materials that can leach into the your water? Faulty water filter if you have a well? Our water supply, for example, is so high in natural arsenic that a well needs a good filter to filter it out.

So sorry that nothing seems to match perfectly what's going on with your body so you can have that great 'aha!' moment to get you on the right path to feeling better. I hope something comes out soon for you!

[Reba32]

It does not wax or wane with eating. It is constant. All day, every day.

Use of chemical pesticides and herbicides were banned a couple of years ago in Ontario, so it's not that, and I certainly don't use them in my own garden. No lead paints, no old plumbing, we're on municipal water not a well.

[T.H.]

Use of chemical pesticides and herbicides were banned a couple of years ago in Ontario

Actually, I was thinking of the type that last for decades in the soil, like DDT. Would only even come up if there was a lot of farming in your area at one point. (Open Original Shared Link - article that mentions some of the most common ones that last for decades).

And...crap, since nothing is popping up perfectly, let me just pop out random things I've come across before that caused vertigo in some people.

- toxic mold in the air conditioning or swamp coolers at home or at work.

- a damaged nerve in the ear - there was therapy to help the body relearn how to not get dizzy anymore, for this one, as I recall.

- reactions to something on one's clothing (knew a gal who turned out to react to a pesticide on the cotton clothing she wore.)

- anecdotal only: the normal fluid in the inner ear moving abnormally. 'Too quickly' over the hairs in the ear is what I heard, but I never asked the gal what that meant, so I have no idea how accurate that one is.

Just wishing you didn't feel so miserable.

[Jenny (AZ via TX)]

It's been a while since I've posted, but thought I would add my experience as well. I was dizzy for about a year. It started when I rolled over in bed onto my right side. This was called BPPV. Everything was spinning and was horrible. After that episode I had both vertigo and dizziness for about a year. I went to numerous doctors including eye doctor, family doctor, ENT and a neurologist.

Finally someone told me about a condition called vertical heterophoria. This is a condition where one eye sees higher than the other. A year later I went to an optometrist doctor, Dr. Debby, in Michigan who specializes in this (I live in Arizona and was desperate to get my life back). I still didn't know if I had this or not but when I went on their website, Vision Specialists of Birmingham.com, I had most of the symptoms. It was an easy fix. I had to wear glasses with a prism in them. I couldn't believe I suffered with the dizziness for a year and it could be fixed with glasses!

It turns out the best doctors to diagnose this are optometrists, not opthamologists. Also, it's best to go to one that specializes in vision therapy.

Just for history purposes, this dizziness happened before I was dx'd with celiac and was gone before I was gluten free. I was dx'd with celiac about 6 months after I started wearing the glasses.

I just wanted to put out another option if you have exhausted all others.

I hope you are able to feel better soon!

[T.H.]

Finally someone told me about a condition called vertical heterophoria. This is a condition where one eye sees higher than the other.

It's amazing how many times we find out what's wrong because someone other than a doctor points us in the right direction! Wow.

I'm writing this one down to remember later.

[Reba32]

[rant] well, the dizziness continues, and I have been for so many tests and appointments at the TGH ENT/Balance clinic at my last appointment the doctor suggested I may need to see a psychiatrist because they just can't find anything wrong with me. I'm about to give up with all medical doctors entirely and maybe just go find a shaman in the jungles of deepest darkest Peru

This dizziness has been going on for a year now, and it started a year AFTER I went gluten free, and I didn't have anythign like this in my laundry list of symptoms when eating gluten. But it could be an additional auto-immune disease, I've got 3 of them diagnosed already. EVERY time I mentioned it to anyone at the ENT clinic or with my GP, they all either brushed it off, or quite literally scoffed at me. If I mention that I've read of several celiac patients with secondary neurological disorders, they say "nope, never heard of it". I can't even get a referral to a neurologist! This is so frustrating! I seriously hate doctors. The closest the ENT would get me to a neurology referral is an appointment with their "balance clinic group" where they have a neurologist, a psychiatrist, and a physical therapist (I think?) in a group therapy sort of thing to help you "live your life with balance issues". What crap.

My life is completely not my own anymore. I'm unemployed, can't drive, and my Mother is one of the worst drivers ever! She makes me nauseous just driving me to the grocery store to do shopping. I hate going anywhere with her, as I'm quite sure she's either going to have us killed, or I will throw up in her lap one day! [/rant]