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MLynn

Dizzzzy...

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:wacko: I notice after eating badly I wake up the next day feeling really dizzy....has anyone else experienced this feeling. It usually lasts for 2 - 3 days, sometimes it has gone on for a week! I assume it is because of my celiac, but not certain. It is the most uneasy feeling...anyone?

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I've had vertigo so bad that I've fallen off the couch when I was SITTING on it. I get dizzy when I get glutened, when you say 'eating badly', do you mean cheating? Or just a sugar overload or soemthing?

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Dear MLynn,

My friend on here has Benign Positional Vertigo. Celiac probably caused it. Jacqui has had some major balance difficulties. I would not be surprised if the Celiac caused in you as well. This disease is notorious for causing all kinds of issues, neurological, gastrointestinal, and it can also result in nutritional deficiencies. Have you have your iron levels checked?

Dizziness can be a symptom of anemia, which I have had in the past, which is Celiac related.

Sincerely,

NoGluGirl

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I will throw this out for what it is worth. I haven't suffered from the sort of dizziness being mentioned (only dizziness from time to time when I first stand up), but I am prone to a balance disorder known as mal de debarquement syndrome. It causes a sufferer to feel like she is on a rocking boat and follows cruises or long plane trips. (yes, it is mostly something suffered by affluent, middle-aged white women, which means that many doctors think it is all psychological :angry: ... them not knowing of the disorder and unable/unwilling to do any research)

Anyway, in the course of diagnosing myself -- and my doctor later agreed with me, so I'm not nuts :rolleyes: -- I found one medical school balance clinic's web site. It mentioned that ginkgo has been found useful for some balance problems. Having tried a variety of other things without success (there being no accepted medical treatment), I tried the ginkgo and the rocking went away in one day. I had rocked for two months at that point and was concerned it was permanent, which happens to some unfortunate souls. Now I always travel with the stuff and even take it prophylactically before trips. (My doctor had told me not to take the ginkgo, but I paid him no heed.)

It might be worth a try. Just don't take it if you are on any blood thinners or have a bleeding disorder, because ginkgo works by improving capillary blood flow. This is why it is being tested for effectiveness against cardiovascular problems, dementia, etc.

Of course, now I wonder if undiagnosed gluten problems (I have that pesky neurological nasty, double DQ1) is what causes the MdDS.

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Dear Glutefreefamily,

My mother was told by a doctor that he thought she has Meniere's. She also has high blood pressure. There are times that she has had so much trouble with it, she had to lie down. Maybe I should tell her to avoid caffeine, salt and msg to see if it helps. I am glad you mentioned this. A lot of people do not know about this disease.

Dear hathor,

Thank you for posting about Mal de Debarquement Syndrome. I had never heard of this condition before. I have experienced this. However, mine also started out of nowhere a while back. The "on a boat" feeling can really make you feel strange. Someone said that is how they felt before they were diagnosed with Lyme and Babesia, a co-infection of Lyme. Meanwhile, I will be sure to keep the Ginkgo in mind!

Dear MLynn,

Another thing that can cause dizziness is low blood pressure. There is a condition called Neurally Mediated Hypotension that I may have. It can be caused by various things. You get very sensitive to heat, feel like you are going to pass out a lot, and are very fatigued. Sometimes I have nearly blacked out standing up or stretching. People who have it typically have low to normal blood pressure. A friend of mine said she had these symptoms from having Lyme.

Sincerely,

NoGluGirl

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Dear Glutefreefamily,

My mother was told by a doctor that he thought she has Meniere's. She also has high blood pressure. There are times that she has had so much trouble with it, she had to lie down. Maybe I should tell her to avoid caffeine, salt and msg to see if it helps. I am glad you mentioned this. A lot of people do not know about this disease.

Sincerely,

NoGluGirl

Every time I go to the hospital they have me list off my health problems and the nurses always say what is menieres disease? One time a dr asked me.

There are a slew of possible triggers that come with Menieres disease, you wouldnt believe the list of things that have worked with people. Lemon bioflavonoids, lipoflavonoids, gluten free diet, glycemic index diet, allergy triggers, artificial sweeteners. Nucca treatments by chiropractors have worked with some since the atlas bone if out of alignment causes vertigo. Vitamin deficiencies and sometimes a combination of things. I would definitely recommend a gluten free diet for her since you must get it from somewhere :) and keeping a journal of everything she eats, how she feels and any allergy symptoms she may be having to help her figure out a pattern.

I would have her look into Migraine Associated Vertigo and Benign Paroxysmal Positional Vertigo since they can mimic Menieres and they are much more common. Menieres can be a junk diagnosis (similar to ibs in regards to celiac disease) since Ent's diagnose menieres disease, neurologist diagnose migraine associated vertigo and neurotologists diagnose Benign Paroxysmal Positional Vertigo. BPPV is totally fixable. Menieres disease stinks. I often vomit from vertigo since the room can be spinning for hours and I have problems hearing as it sounds like Im underwater with ringing in my ears. I have only had this a short time myself so Im still in the process of accepting it and not being angry lol!

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Dear hathor,

Thank you for the link! I have it in my favorites now. This could be some of my trouble. I may have Lyme, so there is no telling! I see my doctor tomorrow. I know my blood pressure gets low, and Neurally Mediated Hypotension is a good possibility as well.

Dear Glutenfreefamily,

My mother refuses to do a gluten-free diet. No matter how hard I try, she will not do it. If I had to guess, the Celiac is most likely on her side of the family. It is so frustrating! Still, a friend of mine has BPPV, and I would not rule that out, either. I always feel like I am on a boat, and someone said that feeling like you are going to passout can be caused by Lyme and its co-infections. My mother's situation is similar to yours in symptoms. For her, the room was spinning, not the feeling I get, kind of like your brain is floating. This can freak you out!

Sincerely,

NoGluGirl

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Guest thatchickali

I'm dizzy every single day, I'm about to start a new post about it but I can tell you I have been to every doctor for it except and Ear Nose and Throat doc, and that's my next try.....

Nothing, except they told me to load up on salt, maybe this is hurting me?

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Dear hathor,

Thank you for the link! I have it in my favorites now. This could be some of my trouble. I may have Lyme, so there is no telling! I see my doctor tomorrow. I know my blood pressure gets low, and Neurally Mediated Hypotension is a good possibility as well.

Dear Glutenfreefamily,

My mother refuses to do a gluten-free diet. No matter how hard I try, she will not do it. If I had to guess, the Celiac is most likely on her side of the family. It is so frustrating! Still, a friend of mine has BPPV, and I would not rule that out, either. I always feel like I am on a boat, and someone said that feeling like you are going to passout can be caused by Lyme and its co-infections. My mother's situation is similar to yours in symptoms. For her, the room was spinning, not the feeling I get, kind of like your brain is floating. This can freak you out!

Sincerely,

NoGluGirl

Check out migraine associated vertigo also, it is nicknamed the floating head disease. It makes you so loopy, brain fog and out of it. If you think it might be migraine associated vertigo a good book to read is "Heal your headaches" it helped me tremendously with an elimination diet as I have MAV too. Its very hard to figure out these symptoms as they mimic so many things. I was lucky and tried the migraine diet and it worked to the "T" so thankfully it answered it for me without having to go through alot. I have forgotten many things when I have a migraine and most times I dont have a headache at all which is a common misconception of migraines that they always are a headache.

I hear my daughter waking up again so I'll pm you back tomorrow :)

Good Night :)

April

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Dear April,

That is so funny you mentioned that! I get migraines. They have been much worse since my wisdom teeth on the bottom began coming in. My previous doctor thought I was experiencing silent migraines and that it was causing my nausea before. I am going to do some research on that. My neck is always stiff, no matter what position I sleep in, and this gets very uncomfortable. Thank you for the info! PM me when you can!

Dear thatchickali,

An ENT might be a good bet. My mother was told by one she has Meniere's. That is how she found out what that could be. Normally, it makes you feel like the room is spinning. I get the on the boat type of feeling. I seem clutzy because of it, too.

Sincerely,

NoGluGirl

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Dear April,

That is so funny you mentioned that! I get migraines. They have been much worse since my wisdom teeth on the bottom began coming in. My previous doctor thought I was experiencing silent migraines and that it was causing my nausea before. I am going to do some research on that. My neck is always stiff, no matter what position I sleep in, and this gets very uncomfortable. Thank you for the info! PM me when you can!

Dear thatchickali,

An ENT might be a good bet. My mother was told by one she has Meniere's. That is how she found out what that could be. Normally, it makes you feel like the room is spinning. I get the on the boat type of feeling. I seem clutzy because of it, too.

Sincerely,

NoGluGirl

Jin

Two possibilities also might be TMJ as that can cause dizziness or with the stiff neck it could be the atlas bone being out of place which only a nucca certified chiropractor can fix. They are hard to find as they are a rare specialty. I'll pm you more information on it if you want.

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I'm dizzy every single day, I'm about to start a new post about it but I can tell you I have been to every doctor for it except and Ear Nose and Throat doc, and that's my next try.....

Nothing, except they told me to load up on salt, maybe this is hurting me?

Salt is definitely a trigger for menieres disease. Its also a common trigger for migraines.

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Dear April,

I do have TMJ. I know that for sure. My jaw is severely misaligned. It causes me a lot of trouble. The wisdom teeth are causing it according to my dentist. If I have Lyme, getting them removed is not a good idea unless you are sure you can avoid cavitations. The bacteria hides in those crevices, and can evade treatment. I would appreciate more information. That would be great if you could PM me.

Sincerely,

Jin

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Dear April,

I do have TMJ. I know that for sure. My jaw is severely misaligned. It causes me a lot of trouble. The wisdom teeth are causing it according to my dentist. If I have Lyme, getting them removed is not a good idea unless you are sure you can avoid cavitations. The bacteria hides in those crevices, and can evade treatment. I would appreciate more information. That would be great if you could PM me.

Sincerely,

Jin

TMJ is what has caused me headaches and dizziness and the feeling like my ears were leaking, etc. I'm non Celiac, if that makes a difference and I had dizziness and nausea symptoms long before I felt pain in my jaw.

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Dear buffettbride,

Thank you for sharing this. It makes sense. TMJ can cause many problems. Full body pain is part of it as well from what I hear. This all started after my wisdom teeth on the bottom began coming in. I have had the weird feeling for a while, though. It began about three or four years ago.

Sincerely,

NoGluGirl

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I could go on and on about TMJ. It started with symptoms I never would have put together. The dizziness was killer. Everything spinned all the time and I seriously felt like I wanted to stick a needle in my ear and "pop" what felt like fluid.

I've always been a teeth grinder and it's been a stressful year or two which means more teeth grinding. Plus, about 5 years I had a wisdom tooth pulled and another tooth filled which has given my problems since then. I had to have it re-filled because the tooth-colored fillings made my tooth too sensitive. It still is to this day, to hot OR cold which triggers awful headaches.

The TMJ I don't feel so much in my jaw really, but it pops regularly. Most of my pain is in the back of my neck, behind my ear, and in my shoulder. I can't get my husband to squeeze it hard enough. Ibuprofin doesn't touch the pain (thank goodness for my Pharmacy of Mom who has a lifetime supply of codeine due to Fibromyalgia).

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Dear buffettbride,

I just tough out the pain with the Fibro. Not much helps it. The TMJ is something I know for sure I have. However, I also could have Lyme. The stiffness in my neck and shoulder could be linked to that as well.

A mix of all kinds of things could be the culprit. The dizziness is actually more like I am on a boat, not the room spinning. My mother may have Meniere's, which causes that. I get migraines from my wisdom teeth, but I know my jaw is badly misaligned. I also get excessive amounts of earwax. Sometimes, I have to clean my ears out four times a day.

Sincerely,

NoGluGirl

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Guest thatchickali

My mom and I have TMJ and she has BPPV and I just found out I have MAV.

Genetics suck.

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I was just reading some posts from August of 2006, where several persons in this forum complained of light-headedness, etc. There was some discussion of how giving up gluten can reak havoc on your blood sugar levels and also that the dizziness might be linked to glucose dumping? People said it gets better though. I have experienced this - dizziness, etc. 1 to 3 hours after eating... SMALL MEALS with LEAN PROTEINs throughout the day might be a way to combat this. Just some thoughts...

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I will throw this out for what it is worth. I haven't suffered from the sort of dizziness being mentioned (only dizziness from time to time when I first stand up), but I am prone to a balance disorder known as mal de debarquement syndrome. It causes a sufferer to feel like she is on a rocking boat and follows cruises or long plane trips. (yes, it is mostly something suffered by affluent, middle-aged white women, which means that many doctors think it is all psychological :angry: ... them not knowing of the disorder and unable/unwilling to do any research)

Anyway, in the course of diagnosing myself -- and my doctor later agreed with me, so I'm not nuts :rolleyes: -- I found one medical school balance clinic's web site. It mentioned that ginkgo has been found useful for some balance problems. Having tried a variety of other things without success (there being no accepted medical treatment), I tried the ginkgo and the rocking went away in one day. I had rocked for two months at that point and was concerned it was permanent, which happens to some unfortunate souls. Now I always travel with the stuff and even take it prophylactically before trips. (My doctor had told me not to take the ginkgo, but I paid him no heed.)

It might be worth a try. Just don't take it if you are on any blood thinners or have a bleeding disorder, because ginkgo works by improving capillary blood flow. This is why it is being tested for effectiveness against cardiovascular problems, dementia, etc.

Of course, now I wonder if undiagnosed gluten problems (I have that pesky neurological nasty, double DQ1) is what causes the MdDS.

What brand and what kind of ginkgo do you take? Thanks in advance!

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What brand and what kind of ginkgo do you take? Thanks in advance!

The stuff I took years ago when I had the MdDS really bad apparently doesn't exist anymore. I remember taking a 24% standardized extract product (a smaller mg total too) and it not working. Then I upped it to a higher standardized extract and a higher mg (basically the highest I could find) and found immediate relief. I remember spelling it all out on a MdDS discussion board, but that board doesn't seem to exist anymore either.

But searching the internet, I can't find anything other than 24%. Perhaps the other stuff isn't sold anymore in the US because it is so potent?

What I've been taking in recent years is whatever 120 mg extract pills I can find (best price). Obviously I bought PRIOR to my food intolerances being identified. There is nothing on what I have in my cupboard that indicates gluten free and it mentions containing lactose! Ooops :blink: Plus they are old ... they apparently aren't even sold anymore. The company has been bought out and the new company doesn't offer anything like what I have.

It distresses me that I never thought to check out the contents (or age :rolleyes: ) of these pills before my recent vacation.

I'm going to have to do some research to find out what to use next time. Searching around, I see that Amazon has some vegetarian ones that list being free of assorted things. Some of the others may be OK too (have to contact companies).

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Dear thatchickali,

I may have MAV. I know I have TMJ. That is very painful, too. My wisdom teeth are causing it. The trouble is, I may have Lyme, and could impair my immune system further by getting those teeth removed. I need to know whether or not I have it. I am waiting on my doctor to see if she can get the labwork I need done. Co-infections of Lyme can cause the symptoms I have as well.

Dear Mbelle,

I have suffered with low blood sugar for several years. I have been gluten-free for more than a year. My father gets low blood sugar as well. I always make sure to eat every four hours. I do best on The Zone, because it helps balance blood sugar, but even then, my glucose tends to be a little low. I have an overgrowth of yeast, too. That could be why.

Dear hathor,

Thank you for the information! I do not know why they always stop selling the stuff that works. They do that all the time. Maybe it worked too well, so it was outlawed. It would not be the first time.

Sincerely,

NoGluGirl

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