Balance Issue Ataxia?

[blueshabooMoon]

Hi, new here, it is a comfort to know not alone, initially was loosing my mind. Celiac sufferer, just diagnosed and started Gluten free, this will be easy for me as I am so desperate. Also GI Dr. did endescopy for celiac biopsy and found `stricture gastroesophogeal juncture=inflammation swelling shut of esophogus", small Hiatel Hernia.

Worse problem besides hideous initial 10 weeks suffered 30X day diarhea, is Balance, Falling feeling, starts as pressure under left rib then head, was told could be ataxia and could improve with gluten free strict diet. I could even be sitting down at desk and Bam, a jolt-falling feeling, it is so scarey to say least. Anyone else experience this and what was your personal experience, did it improve with diet? What did your Dr.`s do and say about it? thanks from panic woman, Terri

[eatmeat4good]

The ataxia went away completely in a few weeks after going gluten free.

I would have unexplained falls, in the shower, while walking, or I would be so light headed and dizzy I had to actually think about every single step I was taking. First the dizziness went away, then the falls stopped, then I no longer felt I had to think about every step I took. It was and is Wonderful! My Dr. said....nothing...just looked at me puzzled and said hm....

My son had ataxia in his walking...sort of shuffled or stumbled intermittently while walking. We long thought we were just uncoordinated. Until we learned about gluten. Many other symptoms cleared up too. Within weeks his symptoms of walking uncoordintedly stopped completely. He runs now...for the first time in his life. Thank god for people who share information about gluten. My god...the lives it steals. Hope yours resolves very quickly too.

I was a little concerned having read that neurological problems can be the last to go and may never resolve completely. I was fully prepared we might be one of those but was very relieved to find that we are not. Hoping for your full recovery.

[blueshabooMoon]

The ataxia went away completely in a few weeks after going gluten free.

I would have unexplained falls, in the shower, while walking, or I would be so light headed and dizzy I had to actually think about every single step I was taking. First the dizziness went away, then the falls stopped, then I no longer felt I had to think about every step I took. It was and is Wonderful! My Dr. said....nothing...just looked at me puzzled and said hm....

My son had ataxia in his walking...sort of shuffled or stumbled intermittently while walking. We long thought we were just uncoordinated. Until we learned about gluten. Many other symptoms cleared up too. Within weeks his symptoms of walking uncoordintedly stopped completely. He runs now...for the first time in his life. Thank god for people who share information about gluten. My god...the lives it steals. Hope yours resolves very quickly too.

I was a little concerned having read that neurological problems can be the last to go and may never resolve completely. I was fully prepared we might be one of those but was very relieved to find that we are not. Hoping for your full recovery.

Awesome...bless You..hearing Any Good News at all is sooooo refreshing..you give me hope, thanx million, Terri

[AVR1962]

Hi, new here, it is a comfort to know not alone, initially was loosing my mind. Celiac sufferer, just diagnosed and started Gluten free, this will be easy for me as I am so desperate. Also GI Dr. did endescopy for celiac biopsy and found `stricture gastroesophogeal juncture=inflammation swelling shut of esophogus", small Hiatel Hernia.

Worse problem besides hideous initial 10 weeks suffered 30X day diarhea, is Balance, Falling feeling, starts as pressure under left rib then head, was told could be ataxia and could improve with gluten free strict diet. I could even be sitting down at desk and Bam, a jolt-falling feeling, it is so scarey to say least. Anyone else experience this and what was your personal experience, did it improve with diet? What did your Dr.`s do and say about it? thanks from panic woman, Terri

Terri, for me the off-balance issue was the hardest of all of my symptoms to correct. Docs could not figure out what was wrong with me and I went thru numerous tests. When I initially went off wheat I wasn't looking at package ingredients and I didn't understand about cross contamination and how important it was to buy oats and the like that were labeled "glute-free." So no doubt it took me longer but from the time I started on my gluten-free diet til the time my off balance stopped was 5 months. Besides not having a real clean diet at first I also learned I had an issue with high fructose which was giving me the same symptoms.

Now I realize I can have no glutens or high fructose, even the smallest amount in a marinade, gravy mix, etc. My first symptom is a odd headache, the stomach stuff, struggle with my memory, become tired, and my balance is off and I will be that way about 3 days.

I have tried Ginger supplements which are supposed to help with nausea from motion sickness and I have tried over-the-counter meds to help with motion issues for flights and they do not work for me. I have to really watch the glutens and make no exceptions.

[Takala]

Gluten ataxia-

Yes, it improved with diet, but it took a while longer for me, as I also have c- spine issues and have not had a doctor who could sort it out - I learned about this by reading, reading, reading trying to match symptoms to what could improve with diet- in the beginning when I gave up grain, I got better and was told this was not related since they were on the "it must be MS kick" - In Europe they acknowledge that gluten causes neurological damage, but here in America it's not made it to "common knowledge" stage yet. I had a lot of numbness in my hands/feet, besides the balance issues. I swear if I ever met Dr. Hadjivassiliiou I'd be wanting to hug him, I kept running into this big, long name in the pubmed searches at first, because he's written up studies about it that are readable.

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The clinical characteristics of 68 patients with gluten ataxia were as follows: the mean age at onset of the ataxia was 48 years (range 14

[ravenwoodglass]

Hi, new here, it is a comfort to know not alone, initially was loosing my mind. Celiac sufferer, just diagnosed and started Gluten free, this will be easy for me as I am so desperate. Also GI Dr. did endescopy for celiac biopsy and found `stricture gastroesophogeal juncture=inflammation swelling shut of esophogus", small Hiatel Hernia.

Worse problem besides hideous initial 10 weeks suffered 30X day diarhea, is Balance, Falling feeling, starts as pressure under left rib then head, was told could be ataxia and could improve with gluten free strict diet. I could even be sitting down at desk and Bam, a jolt-falling feeling, it is so scarey to say least. Anyone else experience this and what was your personal experience, did it improve with diet? What did your Dr.`s do and say about it? thanks from panic woman, Terri

Yea that falling feeling even when sitting down is scarey and can be one of the first signs for me that I have been glutened. My ataxia was quite advanced by the time I was diagnosed. I was thought for a while to have MS but while I had the white lesions on my MRI they weren't in the right place for MS and my neuro was clueless about them. I got to the point where I needed canes to walk in open spaces and used the walls for support at home. Things did improve on the diet and within 6 months the ataxia was pretty much gone...unless I got glutened. I did have a physical therapist who helped speed things along.

[Simona19]

Hi, new here, it is a comfort to know not alone, initially was loosing my mind. Celiac sufferer, just diagnosed and started Gluten free, this will be easy for me as I am so desperate. Also GI Dr. did endescopy for celiac biopsy and found `stricture gastroesophogeal juncture=inflammation swelling shut of esophogus", small Hiatel Hernia.

Worse problem besides hideous initial 10 weeks suffered 30X day diarhea, is Balance, Falling feeling, starts as pressure under left rib then head, was told could be ataxia and could improve with gluten free strict diet. I could even be sitting down at desk and Bam, a jolt-falling feeling, it is so scarey to say least. Anyone else experience this and what was your personal experience, did it improve with diet? What did your Dr.`s do and say about it? thanks from panic woman, Terri

Hi!

Can you have dumping syndrome? After meal your stomach would pass all food- undigested to quickly to the small intestine. The small intestine doesn

[blueshabooMoon]

Gluten ataxia-

Yes, it improved with diet, but it took a while longer for me, as I also have c- spine issues and have not had a doctor who could sort it out - I learned about this by reading, reading, reading trying to match symptoms to what could improve with diet- in the beginning when I gave up grain, I got better and was told this was not related since they were on the "it must be MS kick" - In Europe they acknowledge that gluten causes neurological damage, but here in America it's not made it to "common knowledge" stage yet. I had a lot of numbness in my hands/feet, besides the balance issues. I swear if I ever met Dr. Hadjivassiliiou I'd be wanting to hug him, I kept running into this big, long name in the pubmed searches at first, because he's written up studies about it that are readable.

See how it mentions ocular signs?

Even my freaking eyeglasses exam doctor could see that something was wrong but when they sent me to this lousy, nasty HMO opthamologist doctor I was completely blown off.

I was really surprised to get the color vision mostly back in the one eye, and get rid of the nightblindness, but it's probably been screwed up since childhood, and my eyes still do not track well together. Another neurologist was caught flat - footed by the white matter "hyperintensities" on my brain scan. I don't care if you have never heard of something, when patients have real symptoms and real abnormalities on tests, the answer is STILL NOT "it's all in your head."

Wow~Thanks for all Great info,I too swear my eyes are worse, ready make appointment Eye Dr., suffer like you from these `ocular` problems,night-blindness now, very sensitive bright lights [put dimmer switch on lamp by easy char living room],I swore years ago had an MRI and they will never get me in that thing alive again I am sooooo clostraphobic-ha ha, but am serious.People like yourself are a God-send, more informative and sensitive than doctors. This may sound cruel but have often wished that my doctor could experience exactly what I felt when was at my worst weeks[ 4-6 weeks not eating, non stop bathroom trips, vomit,near blacking out,unable walk-,then they could comprhend & know and be barely make it sink for water to take meds, etc.]better prepared to help you.And family members tire easily of hearing whining complaints & has to be hard for them to understand why you can`t go to functions with them. Thank you soooooo much for posting info about this Dr., Terri

[blueshabooMoon]

Gluten ataxia-

Yes, it improved with diet, but it took a while longer for me, as I also have c- spine issues and have not had a doctor who could sort it out - I learned about this by reading, reading, reading trying to match symptoms to what could improve with diet- in the beginning when I gave up grain, I got better and was told this was not related since they were on the "it must be MS kick" - In Europe they acknowledge that gluten causes neurological damage, but here in America it's not made it to "common knowledge" stage yet. I had a lot of numbness in my hands/feet, besides the balance issues. I swear if I ever met Dr. Hadjivassiliiou I'd be wanting to hug him, I kept running into this big, long name in the pubmed searches at first, because he's written up studies about it that are readable.

See how it mentions ocular signs?

Even my freaking eyeglasses exam doctor could see that something was wrong but when they sent me to this lousy, nasty HMO opthamologist doctor I was completely blown off.

I was really surprised to get the color vision mostly back in the one eye, and get rid of the nightblindness, but it's probably been screwed up since childhood, and my eyes still do not track well together. Another neurologist was caught flat - footed by the white matter "hyperintensities" on my brain scan. I don't care if you have never heard of something, when patients have real symptoms and real abnormalities on tests, the answer is STILL NOT "it's all in your head."

Hi,ps. forgot to mention I also have degenerative cervical neck spine issues.Terri

[T.H.]

Simona19 - thank you for that dumping info. - I've heard of that before, but never in such detail. There's a friend I know with these symptoms who has been stymied as to what's wrong. I'm going to pass that along!

Re: ataxia

I've got that too, oh heck yeah. Before diagnosis, I was at ear, nose, and throat doctors and neurologists. Neither of them had a clue what was wrong. The neurologist basically blew me off and declared the headaches and vertigo were results of stress, and implied that I just needed to relax and stop worrying about my health so much, and then I wouldn't have these issues.

And one other thing that might relate - I have noticed that when I get glutened now (even midly) it affects my senses! Lights are too bright, noises are more grating or too loud. After becoming aware of this, I've now realized that my taste and smell change, too. I'll try a dish one day and it's very bitter or sour, but if I try it again a couple days later, it tastes fine. And when I DO try it originally, no one else notices any problems.

My daughter gets this same thing. It lasts for a few days after getting glutened, and slowly dissipates.

I have NO idea why this is, or why it happens with gluten, but it tracks every time. I have not really seen this in any medical literature, but in conversations with other celiacs, it's turned out to be an issue for others, too, but they thought that it was something they 'just had,' before we all started talking. No everyone had all the senses affected, but often at least one or two senses.

One thing that I have discovered for myself is that I am VERY sensitive to gluten. I can't have most gluten free processed foods or grains without getting a reaction. Cross contamination is a huge issue. I have met a number of other celiacs with neurological issues who also seem to be on the more sensitive end of the spectrum when it comes to gluten, too.

My doctors know that this reaction has disappeared on the gluten-free diet, but no help or anything from them, really. The GI and allergist are really happy for me, but the neurology stuff isn't their field, so they are just urging me to continue being really careful with my diet. My normal doc has noted it down, but he's just trying to keep track of everything at this point, and leaving most of the stuff to the experts.

I haven't even bothered going to a neurologist right now. I don't think I will unless I start having symptoms that don't stay resolved on the diet. Haven't been all that impressed with those I've seen.

[Simona19]

Simona19 - thank you for that dumping info. - I've heard of that before, but never in such detail. There's a friend I know with these symptoms who has been stymied as to what's wrong. I'm going to pass that along!

I want to tell you that you don't have to have surgery on your stomach to have dumping syndrome. There are also other causes, like gastrointestines juices, or neurological issues (I might have this because I have also orthostatic hypotention, dumping syndrome, muscle twitches in legs and arms, and my veins don't constrict fast enough to pump blood into my head which can be a sign of something more serious. I don't have tumor, cyst or cancer, but something is off. I have appoitment to see another Neurologist on August 16. and Neuro Eye doctor on September l. I hope they will find what is wrong with me very soon.)

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[blueshabooMoon]

Hi!

Can you have dumping syndrome? After meal your stomach would pass all food- undigested to quickly to the small intestine. The small intestine doesn

[Simona19]

Hi, try google vasal vagus effect or response...very similiar symptoms, the bowel goes all way up the left abdomin and wraps around the spleen, digestive disorders can set off the vasal vagus nerve that is next to it and cause lightheadedness, syncope fainting feeling ,pass out and balance issues, diorientation confusion, blood pressure drops, weak shakey, almost feels like a diabetic response episode to people experiencing. Terri

I thought the same thing at first, but the tests that I had were normal for vasal vagus, or vasovagal syncope. I hade Tilt table test, stress test, echo, many ECG, twice Holter monitor- everything negative, or normal.

Doctors think that I might have dumping syndrome, but I think I have POTS and some illness that is causing POTS. From the list of things that can cause POTS my doctors had ruled out half of them.

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Check the video on the bottom of page. The first part- that is me. And I'm doing the same thing with food, or I won't eat anything for 5-6 hours, just to avoid the episode. I will eat something and I will lay on sofa with the face like her, not able to move. I also have almost every symptom from the list.

I came across this just yesterday. I want to show this to my neurologist. I also made video from myself. I hope that it will be helpfull.

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[ArcticLotus]

Light and noise sensitivity are also symptoms of migraine.

(another under-diagnosed and misunderstood severe health condition)

Not all migraines have a headache for that matter.

Migraines commonly are accompanied by dizziness, nausea, and sometimes vomitting.

More severe cases (like I used to have) can include fainting, temporary loss of speech, and ocular migraines can include dancing lights, waving patterns, and temporary loss of peripheral vision.

I recently read a study where a university tested a few hundred children with migraines. Only a small handful of them were diagnosed previously as being gluten intolerant or Celiac. They put ALL the children on a gluten free diet, and ALL of the children experienced serious reduction or complete obliteration of their migraines.

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blueshaboomoon

"stricture gastroesophogeal juncture=inflammation swelling shut of esophogus", small Hiatel Hernia."

This sounds exactly like what my husband was going through for years before he found out he was allergic to dairy. The doctors didn't bother to mention that the strictures were caused by food allergies, so he had surgery 3 times to stretch it (he was on liquids only and down to 115 lbs). Now that we figured out his allergy, he eats fine, the hiatal hernia is gone, and his last surgery was over 2 years ago (hopefully never again). If you are experiencing stricture, you may want to talk to you dr about getting an epi pen, just in case you go anaphylactic from getting glutened.

(After more research, the strictures are usually caused by eosenophilic esophagitis, which is where the white blood cells are concentrating in your throat rings, trying to attack the "foreign substance", in this case, the gluten that you are allergic to, hense the risk of anaphylaxis.)

Best of luck, it gets better from here!