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Tinnitus And Balance Problems/mild Vertigo


Pegleg84

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Pegleg84 Collaborator

woo, lots of info here, and hopefully helping many readers!

Another update: I got the results from my balance test. According to the text, the amount of dizziness caused by the water-in-ear test was the same on both sides, and any non-visual test was normal as well, so that pretty well rules out a vestibular problem. So, it's not my ear, and not Meniere's or anything like that (phew!)

However - and Jenny, this makes me curious about your problem - I had some trouble with the visual tracking parts of the test. Now, my vision is bad, and has gotten dramatically worse over the past year. I have trouble using both eyes at once, so not too surprised it came out abnormal. However, is it possible that problems with my vision are causing/aggravating the vertigo? Or is it something neurological?

The ENT doc suggested I see a neurologist (incidentally, I just saw one, and am getting another MRI done (for something unrelated, so I hope), but its with the contrast dye, so if anything is up with my pteutary or something, he should be able to see it. I will discuss my vertigo problem with him after the test

I am also seeing an opthomologist next month. I saw one for most of my life (since age 2) until my doc retired a few years ago. Will discuss any links to vertigo as well (I do find that when I have to shift my eyes from one thing to another frequently the vertigo gets a bit worse)

So basically, my vertigo is not vestibular. Back to square 1

In response to all the discussion here:

Still not sure about this Gluten Ataxia thing. Or at least I don't think I have it. I will eat things I have cooked myself, 99.99% guaranteed gluten free, and still get dizzy. Alternatively, I'll get glutened and not feel particularly dizzy. I don't think gluten is causing the vertigo, but of course, it certainly doesn't help. For me it still seems to be aggravated by salt more than anything.

Kamma: Your description of your head/upper body suddenly rotating. That's totally me! When I first got vertigo (while in Japan a few years ago, before gluten-free, in terrible humidity) that's how I was, feeling like and/or physically bobbing back and forth. Of course, focusing on the sensation and stressing about it makes it worse.

Do you find it pulses slightly? maybe along with your heartbeat?

I'm also considering if the problem might be linked to the circulatory system as well? I have a very strong heartbeat, though my bloodpressure is more or less normal, low cholestorol, nothing that would affect my heart...

Aanyway, even though I don't have a vestibular problem, keep the discussion going! Lots of information here and help for all of us.

In the meantime, my best advice is to keep away from the gluten, pay attention to other foods that aggravate your symptoms, and don't stress about it

Good luck all

Peggy

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  • Replies 51
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T.H. Community Regular

Well darn it - so frustrating that they are not finding it yet! Hopefully it is something with an easy fix, like the visual problem.

Although curious about the salt aspect of things - is there any way to get a false negative on the tests for Meniere's, by any chance? I know that's affected by salt, but that's as far as my knowledge goes in that arena. I know nothin' about the testing for it, really.

I keep perking up my ears when I hear issues with dizziness, now, in case it's something that might relate here! :)

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Jenny (AZ via TX) Enthusiast

Pegleg, for me my eyes were not able to see at the same point together. One eye seemed to see a little higher than the other. The prism sort of tricks the eyes to see at the same point together. I had gone to a neuro also for possible MS. I had many problems besides the dizziness. I had a stiff neck all the time and when I walked I felt like I leaned to the right. After I got the glasses I felt so much better. I don't know how long before my stiff neck went away, maybe a month. But I didn't feel like I was walking so weird anymore.

Please look at her website and see if any of those symptoms pertain to you. She is the nicest doctor and will take the time to talk to you. She is in Michigan. Her website is vsofb.com.

I was dizzy for a year and it had to be the worst year of my life. So debilitating (sp?). I had a lot of anxiety when I was dizzy.

Good luck to you in finding the right answer.

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Kamma Explorer

Jenny, I tried to take their online test for the eye problem at the website you gave but it won't recognize my email address (it has a .ca endng as I'm in Canada)! It's odd.

Pegleg, you are about the first person that I've come across in the past two years that has had this head bobbing, torso rotating movement in addition to the vertigo. I'm very pleased as I feel like a real oddball and it's been very disheartening trying to pigeonhole this experience and label it as this or that. Being able to name something and consequently deal and manage it is so important.

I just had a balance test this week as well where the glasses / camera are put over your eyes and the water in the ears thingy. As soon as the technician put the glasses on, my head started to do the bobbing thing so I wonder how much I'm using my eyes to compensate for the vertigo that's always in my head. I had more induced vertigo in one ear (right) than in my left ear when they shot the the water in. I'll get my results in a few weeks.

Just want to say thank you to everyone for sharing their experiences. It's been a very lonely last few years trying to figure stuff out and having to reduce my life to accommodate what I'm experiencing physically. You guys are very heartwarming!

Kamma

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Jenny (AZ via TX) Enthusiast

Kamma, you may want to call them. They are so nice there, I'm sure someone can help you. I feel like they gave me my life back in a way. A whole year of being dizzy every day and not being able to participate in anything was so hard for me.

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UnhappyCoeliac Enthusiast

lot of long replies here but so far I have it down to.

Meniere is related to Coeliac

Going gluten free is unlikely to help your ears but having to go Gluten Free means you are more likely to have or develop Menieres.

I been gluten-free for a week and the tinnitus hissing is as loud as ever. Starting to think they are not related, low sodium might be the key

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UnhappyCoeliac Enthusiast

can people give me a rough timeframe here been going a week no difference so far, at what point does Gluten-Free = less vertigo and tinnitus?

Although it seems I have Meneires which sucks I still cling to hope I just have to remain gluten-free.

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GFinDC Veteran

Hi UC,

I am sorry to hear you are having problems. There are other possibilities besides Menier's though right? You may have low B-12 or other vitamin levels from malabsorption. That can cause nerve damage. Some of that might correct given enough time gluten-free, so that your intestine can heal and start absorbing nutrients correctly. Have you read up on gluten ataxia? Gluten ataxia is caused by celiac also and has some similar symptoms. They say that the nerve damage issues take a while to resolve, if they do resolve. Six months or more perhaps.

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Kamma Explorer

Unhappy Coeliac,

I'm on gluten right now in preparation to be tested for celiac but during the summer when I started to suspect that my ataxia, vertigo, tinnitus, exhaustion were gluten related, I eliminated it from my diet. For me, it took about a week to two weeks before I began to see an improvement. I was already on a low sodium diet as it was recommended by an ENT so that probably helped too.

There was some speculation months ago that I might have meneire's but while I had three of the four symptoms of classcal meneires, I did not have the hearing loss. Do you have hearing loss in addition to your tinnitus, vertigo and ear pressure?

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UnhappyCoeliac Enthusiast

Unhappy Coeliac,

I'm on gluten right now in preparation to be tested for celiac but during the summer when I started to suspect that my ataxia, vertigo, tinnitus, exhaustion were gluten related, I eliminated it from my diet. For me, it took about a week to two weeks before I began to see an improvement. I was already on a low sodium diet as it was recommended by an ENT so that probably helped too.

There was some speculation months ago that I might have meneire's but while I had three of the four symptoms of classcal meneires, I did not have the hearing loss. Do you have hearing loss in addition to your tinnitus, vertigo and ear pressure?

yes sadly I have hearing loss in the classical kind of meniere's way, worse at the lower frequencies. I've had a brain scan and there is apparently nothing wrong so the ENT said probably it's neurological. Low salt diet is quite extreme in my eyes, basically confines me to veggies which make me gag for potentially the next 2/3's of my life. No alcohol no nothing I am still a young man will ruin my life and make me even more miserable!

I have had a cold maybe thats making the tinnitus worse hopefully it is because being strictly gluten free has no had an affect so far. It's been completely underwhelming really I thought I would also be sleeping less being Gluten-Free but no, I should just go back to eating pizzas!

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Kamma Explorer

Nah, don't give up on it yet. Give it a few more weeks to let your body re-adjust.

Regarding the salt, once you get into it, your tastebuds acclimatize and things don't taste bland nor do you miss tasting the salt. There's a period of adjustment where you go, "wow, this tastes like nothing without salt!" but that disappears eventually and you begin to taste the actual flavours of the food. Now, even if a little bit of salt is added to food that someone else prepares, I am able to taste it right away.

Im sorry to hear you have the hearng loss as well. Is it in both ears or just the one?

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Reba32 Rookie

can people give me a rough timeframe here been going a week no difference so far, at what point does Gluten-Free = less vertigo and tinnitus?

Although it seems I have Meneires which sucks I still cling to hope I just have to remain gluten-free.

for me, the vertigo didn't even present until more than a year after I'd been gluten free. And I have not had any cross contamination in quite some time, I'm extremely careful with what I eat, and I *know* it when I've been cc'd, because within 20 to 30 minutes, I'll be in pain, doubled over and can't breathe.

The easiest way to lower your salt intake is to stop eating manufactured foods and cut out bubbly soft drinks. Salt is necessary in the diet, but if your diet consists mainly of packaged man-made foods, you're getting too much of it. If you eat whole, natural foods, and just salt to taste, you can do ok. Up to 1/2 tsp of salt per day is fine, and that's quite a lot, if it's just sprinkled on your meals.

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  • 2 years later...
Eboronkay Newbie

I was diagnosed with Menieres almost 30 years ago. Dizziness, nausea, tinnitis, ears feeling stuffed with cotton, reduced hearing. The meds they gave me knocked me out so badly that my 3 year old climbed up the cabinets unnoticed, found the matches, and I woke up to the carpet on fire. Thank God for adrenaline. Put it out immediately and then called the doctor. He was older and said that before the moderns meds he used to prescribe alfalfa as a diuretic and niacin (not niacinamide) to open the capillaries allowing inner ear to drain properly. Worked like a charm for years. I also have not had significant hearing loss.

It got bad again about 10 years ago and a doctor added Dramamine and Bonine to my regimen. If one didn't work the other one usually did.

Then salt became an issue. I work on keeping the sodium low. Plus my acupuncturist suggested ginkgo biloba which promotes circulation in the head. Much better. I take it daily and highly reccomend Kroeger Herb as they use the powdered leaf with the extract instead of fillers.

Then sugar became an issue. Then gluten. And forget alcohol of any kind in any amount. Instantly dizzy. Arrrrghhh.

So now I use my whole bag of tricks to get thru an attack plus a new one I found in CVS, of all places. It's called DiVertigo. It's a small bottle of essential oils. You rub 1-2 drops behind each ear. It was expensive but they said I could bring it back. No way. Not only does it help the vertigo, it also has helped the tinnitus.

Ingredients: lavender, peppermint, ylang ylang, frankincense, chamomile, and myrrh.

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0range Apprentice

I have tinnitus, and on/off vertigo as well. No real abnormality vestibular-system wise. I also have a corresponding neurological issue called "visual snow". This all started after I was overmedicated on T4 medication (for my thyroid). Early on during the year, a month or two after my overdose episode, I could not even handle alcohol (one sip would make me instantly dizzy). These days, I can have a drink or two without any 'adverse' effects.. adverse as in beyond you would normally expect from typical alcohol consumption lol. I am currently still eating gluten (not a dx celiac) but believe I am gluten-intolerant; trying to wean myself off it in the new year. I have been lactose intolerant since I was 12 and find that now, I get some sort of weird "ear inflammation" whenever I ingest dairy. This has never happened before. If I have a little bit of a dairy dessert, I will find that shortly after that I get 'popping' in my ear... I will swallow, and my ears will pop several times. This goes on for a while before subsiding. Anyone else have this?

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  • 2 weeks later...
Pegleg84 Collaborator

Ooh look, one of my topics was revived! This is a pretty old post, but it does contain some good information, so maybe ok to keep going. Also interesting to look back and remember what I was going through a couple years ago. I was CONVINCED something was wrong with my inner ear. After all the tests came back negative, in 2012 I worked on my diet instead. I cut back on salt, which helped, cut out dairy, which helped a lot more, and then eventually had to cut out soy as well, which REALLY helped! I now believe that my "vertigo" dizzies are a symptom of my sinuses/ear canal filling up when I eat dairy/soy/too much salt. I still get it a little bit on occasion, but not nearly as bad as it used to be. Soy is now the bane of my existence, even harder to avoid than gluten, and the symptoms hit me right away (though don't last as long). Dairy is less bad, as in I can handle tiny bits every so often (a bit of butter in something, or a tiny piece of cheese), but it gets my sinuses going (that full-ear feeling). I haven't been as strict with the low-salt lately, but if I have anything too salty, MAN do I feel it.

 

As for the tinnitus, it's never gone away, but hasn't gotten any worse and i don't notice it as much.

In any case, I now know that my issues is a sinus problem as a symptom of my intolerances, not an inner ear issue

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Jonvon Newbie

Hello,

Sorry for the long post.

I'm new to this. I has experienced some lightheadedness at time last summer. It made me nervous as the summer went on, I decided to quick smoking cold turkey September 22. I smoked for 20 years. The quitting went well. About a month later I was more dizzy. The doctor blew it off, along with my heart burn, tingly toes and fingers and intermittent diarrhea. After a second visit he put me on a antibiotic for a "possible ear infection". Then thing became worse: sever dizziness, ear pressure and tinnitus. I also had non stop diarrhea. I should have never takin the amoxiciline. My fiancée sent me to the emergency room, that doctor ordered a MRI, visit to a ENT and neurologist. What happened! I was healthy maybe a lite overweight 2 months before this.

We'll my primary doctor did not like me going to the other doctors and stated you are perfectly healthy and maybe had the start of meniers.

Neurologist suggested B12 deficiency. Turns out my dad has this and gets shoots. Not the answer for me my B12 is fine. Each appointments is one month away.

ENT and audiologist. Dizzy chair test and ear tests revealed nothing. They do think it is inner ear related.

I found one guy posting about dizziness much like mine and after six months it turned out to be celiac. I read the Mayo clinic symptoms and it mentioned: Nervous system injury, including numbness and tingling in the feet and hands, and possible problems with balance. I also have some rashes on my butt, elbow and shoulder. The rashes aren't supper bad or supper itchy. My teeth are dis colored which is mention on the university of chicagos web site.

I have cut gluten out of my diet. Maybe a bad move before it can get in to a gastro doctor. I did not want to wait because I have been dizzy for 3 months now and want relief ASAP so I can help my family and play more with the kids. After being gluten free I might have some slight improvement in my dizziness, brain fog has improved greatly, heart burn gone, stomach still very burrpy at times. I have lost about 22 lbs since mid October (lucky it have some pounds to spare). I do eat and never go feeling hungry.

Does anyone know how long it would take the dizziness to get better? Any thoughts on this story?

Thanks and happy new year

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GFinDC Veteran

Hi Jonvon,

 

Sorry, I have no idea on the recovery time for balance problems related to the ear.  Celiac disease can cause ( and often does cause) malabsorption of nutrients, which can lead to problem throughout the body.  So a wide range of symptoms can appear in  people.  The thing to do is keep 100% away from gluten and see if things improve over the course of a year.  Sometimes it take s a year or more for symptoms to improve.  But the improvement is worth waiting for.

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Kamma Explorer

Hello,

Sorry for the long post.

I'm new to this. I has experienced some lightheadedness at time last summer. It made me nervous as the summer went on, I decided to quick smoking cold turkey September 22. I smoked for 20 years. The quitting went well. About a month later I was more dizzy. The doctor blew it off, along with my heart burn, tingly toes and fingers and intermittent diarrhea. After a second visit he put me on a antibiotic for a "possible ear infection". Then thing became worse: sever dizziness, ear pressure and tinnitus. I also had non stop diarrhea. I should have never takin the amoxiciline. My fiancée sent me to the emergency room, that doctor ordered a MRI, visit to a ENT and neurologist. What happened! I was healthy maybe a lite overweight 2 months before this.

We'll my primary doctor did not like me going to the other doctors and stated you are perfectly healthy and maybe had the start of meniers.

Neurologist suggested B12 deficiency. Turns out my dad has this and gets shoots. Not the answer for me my B12 is fine. Each appointments is one month away.

ENT and audiologist. Dizzy chair test and ear tests revealed nothing. They do think it is inner ear related.

I found one guy posting about dizziness much like mine and after six months it turned out to be celiac. I read the Mayo clinic symptoms and it mentioned: Nervous system injury, including numbness and tingling in the feet and hands, and possible problems with balance. I also have some rashes on my butt, elbow and shoulder. The rashes aren't supper bad or supper itchy. My teeth are dis colored which is mention on the university of chicagos web site.

I have cut gluten out of my diet. Maybe a bad move before it can get in to a gastro doctor. I did not want to wait because I have been dizzy for 3 months now and want relief ASAP so I can help my family and play more with the kids. After being gluten free I might have some slight improvement in my dizziness, brain fog has improved greatly, heart burn gone, stomach still very burrpy at times. I have lost about 22 lbs since mid October (lucky it have some pounds to spare). I do eat and never go feeling hungry.

Does anyone know how long it would take the dizziness to get better? Any thoughts on this story?

Thanks and happy new year

 

Jonvon,

 

Check out this site for information / research papers of Dr. Marios Hadjivassilliou, a U.K. neurologist and the leading expert on Gluten Ataxia.  Open Original Shared Link

 

After being diagnosed with gluten ataxia a few years ago, my vertigo took months to resolve on a strict gluten free diet (i.e. I don't eat any 'gluten free' products at all and stick to eating vegetables, legumes, fruit and some fish).  The brain fog slowly disappeared as well.  After about a year I felt 'normal' for the most part but still have seizures and/or vertigo if I inadvertently get glutened.

 

It's not a quick fix (sorry!) and Dr. Hadjivassilliou recommends to be very strict in what you eat as it appears by the research that gluten ataxia/neuro people are extremely sensitive to the lower amounts of gluten that can be found in 'gluten free' products.

 

Please note that if you do have gluten ataxia and got a celiac test done, it will most likely be negative as gluten ataxia actually involves a different enzyme than what the traditional celiac panel tests for.  The celiac panels only test for ttg 3 and ttg 2. (ttg is Tissue Transglutimanase enzyme) Gluten ataxia is caused by an antibody reaction to ttg 6.  There are tests being developed by Dr. Hadjivassilliou but they are not on the market yet.

 

The best indicator at this point if you have gluten ataxia is to go gluten free and if the symptoms resolve chances are you have it.

 

Take care,

Kamma

PS - Prior to getting my diagnose, I went through three years of increasing dizziness/vertigo, stumbling, falling/walking like a drunk and seizures. The neurologist kept sending me to all these other experts for testing which included the ENT/Vesitibular Testing which came back normal.  

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GladGirl Rookie

Hi, All,

 

I have not been on this system for some time...basically it is due to such unusual changes, I still find it difficult to understand.  I was diagnosed through Hematology for Celiac Disease (latent) 3 years ago, became gluten free and so many things got better!  My liver enzymes became normal again, my frozen shoulder was painless again, and I lost weight which I needed to lose.  However...I have learned that lesson of having one autoimmune diagnosis can lead to more....

 

I developed tinnitus in my left ear over 12 years ago, met with an ENT who did some tests in his office with the "fork tuning" and a few other types, and then he ordered an MRI because he said I may have a brain tumor called Acoustic Neuroma.  I bought a copy of that MRI from the hosptial and kept it...there was no tumor, but I was concerned.  Glad I did!  This I will add to another topic.

 

My most recent experience took me to the Mayo Clinic and I wanted to give you this information I have thus far concerning my tinnitus and vertigo:

 

Open Original Shared Link

Condition

Effective Dates

Status

Health Status

Informant

Loss Hearing Mixed Conduct Sensorineural(Confirmed)

 

Active

   

Open Original Shared Link

Substance

Reaction

Severity

Status

Glutens

Arthritic pain

Severe

Active

 

This is not going to go away according to my Neuro-Surgeon and neurologist.  Not even being gluten free will/has changed this.  They suggested possible hearing aids to assist, but I have far too many other concerns right now...this will keep in pending.  I deal with my most debillitating time to sleep at night by having my husband turn the TV on with sound...and then I can fall asleep.  Other than that, I have become used to this and from time to time it will vary in intensity.  Take care all, will post on another topic for what is going on regarding other immune system problems.  Gladgirl

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cristiana Veteran

Dizziness/vertigo/imbalance can be such a difficult thing to live with but what interests me is that judging by the websites devoted to the subject it is a problem that blights the lives of many non-celiacs and often there is no formal diagnosis made - or after a while, a different diagnosis is given.

 

My problems started in July three months into the gluten-free diet.  It is strange but when I  mentioned these feelings to various healthcare professionals as possibly having something to do with celiac no one has ever really pursued that tack.  However when in October I started to get tinnitus in one ear, and a feeling of fullness in both, I was referred to an ENT who did lots of tests and thought that as I was encountering feelings of imbalance since July, when I also picked up something too heavy and hurt my neck and lower back, that it could be a problem with my neck rather than my ears.  A follow up MRI scan of my head was fine, but one of my neck revealed bulging discs and a thyroid problem, so perhaps the problems are in my neck after all.    The tinnitus has almost gone now - but I am glad that I had it if it meant I could have the investigations to rule out other things.

 

My question is - if one has ataxia, would it necessarily shown up on my MRI scan of my brain?

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Kamma Explorer

Hi Christiana

 

Gluten Ataxia only shows up in some people's MRI as shrinkage of the cerebellum region in the brain.  I say some people because if the ataxia is caught soon enough, there is no shrinkage of the cerebellum.

 

I'm not sure if there is a different set of protocols that Neuroimagers use in setting up the MRI for suspected different diseases.  For example, in a suspected cause of multiple sclerosis, the MRI is set to scan only those probable areas of the brain where multiple sclerosis leaves lesions.

 

Kamma

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cristiana Veteran

Hi Christiana

 

Gluten Ataxia only shows up in some people's MRI as shrinkage of the cerebellum region in the brain.  I say some people because if the ataxia is caught soon enough, there is no shrinkage of the cerebellum.

 

I'm not sure if there is a different set of protocols that Neuroimagers use in setting up the MRI for suspected different diseases.  For example, in a suspected cause of multiple sclerosis, the MRI is set to scan only those probable areas of the brain where multiple sclerosis leaves lesions.

 

Kamma

Thanks for that Kamma - that is v. helpful.

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GladGirl Rookie

Hi Christiana

 

Gluten Ataxia only shows up in some people's MRI as shrinkage of the cerebellum region in the brain.  I say some people because if the ataxia is caught soon enough, there is no shrinkage of the cerebellum.

 

I'm not sure if there is a different set of protocols that Neuroimagers use in setting up the MRI for suspected different diseases.  For example, in a suspected cause of multiple sclerosis, the MRI is set to scan only those probable areas of the brain where multiple sclerosis leaves lesions.

 

Kamma

Hi, Kamma,

I thought I would send some notes from my neuro surgeon that approaches the protocol of my own new MRI...his concerns were as follows:

 

ASSESSMENT AND PLAN

My impression is that Mrs. Pfeiffer is a 61-year-old female with a left

temporal lesion. I cannot differentiate at this point a brain tumor, primary

or metastatic, versus cavernous malformation that is less likely.

The tumor seems to have a dural-based component, but it is very worrisome the T2

abnormalities surrounding the mass. The plan is to repeat an MRI of the head

with gadolinium with T1 stealth sequence and also GRE. We will make further

recommendations after the MRI. I discussed all this with Mrs. Pfeiffer. She

understood and agreed to proceed with the plan. I am also providing her a

prescription for levetiracetam generic per her request. Her insurance

company does not cover Keppra. Once again, I appreciate the opportunity to

participate in the care of the patient very much.

 

His further comments were also related to stating my cerebellum was unaffected.  So there are certain pieces as you indicated that the protocol is specific to certain types of MRI's.  Thanks for being here.  

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GFinDC Veteran

Hi Gladgirl,

 

Here are a couple threads that talk about UBO's or unidentified bright objects.

 

 

Ubo's, Epilepsy And Celiac

https://www.celiac.com/forums/topic/20198-ubos-epilepsy-and-celiac/?hl=%2Bunidentified+%2Bbright+%2Bobject

 

Okay So Now I'm Mad At Them

https://www.celiac.com/forums/topic/33798-okay-so-now-im-mad-at-them/page-3?hl=%2Bunidentified+%2Bbright+%2Bobject#entry367552

 

Dr Hadjivassiliou is a leading researcher on brain issues related to celiac and gluten.  Your doctor might get some info by contacting him about recent research he has done.

 

Search for Hadjivassiliou

https://www.celiac.com/gluten-free/index.php?app=core&module=search&section=search&do=search&fromsearch=1

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Kamma Explorer

 

 

Hi, Kamma,

I thought I would send some notes from my neuro surgeon that approaches the protocol of my own new MRI...his concerns were as follows:

 

ASSESSMENT AND PLAN

My impression is that Mrs. Pfeiffer is a 61-year-old female with a left

temporal lesion. I cannot differentiate at this point a brain tumor, primary

or metastatic, versus cavernous malformation that is less likely.

The tumor seems to have a dural-based component, but it is very worrisome the T2

abnormalities surrounding the mass. The plan is to repeat an MRI of the head

with gadolinium with T1 stealth sequence and also GRE. We will make further

recommendations after the MRI. I discussed all this with Mrs. Pfeiffer. She

understood and agreed to proceed with the plan. I am also providing her a

prescription for levetiracetam generic per her request. Her insurance

company does not cover Keppra. Once again, I appreciate the opportunity to

participate in the care of the patient very much.

 

His further comments were also related to stating my cerebellum was unaffected.  So there are certain pieces as you indicated that the protocol is specific to certain types of MRI's.  Thanks for being here.  

 

You're welcome, Gladgirl. 

 

When do you go in for your next MRI?

 

I also have a brain tumour in the pituitary/optic chiasm called a craniopharyngioma.  Slow growing.  At this point they don't want to operate as the symptoms are far more preferable to the excision.  

 

Kamma

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    • BluegrassCeliac
      Hi,   Not saying Thiamine (B1) couldn't be an issue as well, but Mg was definitely the cause of my problems. It's the only thing that worked. I supplemented with B vitamins, but that didn't change anything, in fact they made me sick. Mg stopped all my muscle pain (HCTZ) within a few months and fixed all the intestinal problems HCTZ caused as well. Mom has an allergy to some sulfa drugs (IgG Celiac too), but I don't think I've ever taken them. Mg boosted my energy as well. It solved a lot of problems. I take 1000mg MgO a day with no problems. I boost absorption with Vitamin D. Some people can't take MgO,  like mom, she takes Mg Glycinate. It's one of those things that someone has try and find the right form for themselves. Everyone's different. Mg deficiency can cause anxiety and is a treatment for it. A pharmacist gave me a list of drugs years ago that cause Mg deficiency: PPIs, H2 bockers, HCTZ, some beta blockers (metoprolol which I've taken -- horrible side effects), some anti-anxiety meds too were on it. I posted because I saw he was an IgG celiac. He's the first one I've seen in 20 years, other than my family. We're rare. All the celiacs I've met are IgA. Finding healthcare is a nightmare. Just trying to help. B  
    • Scott Adams
      It sounds like you've been through a lot with your son's health journey, and it's understandable that you're seeking answers and solutions. Given the complexity of his symptoms and medical history, it might be beneficial to explore a few avenues: Encourage your son to keep a detailed journal of his symptoms, including when they occur, their severity, any triggers or patterns, and how they impact his daily life. This information can be valuable during medical consultations and may help identify correlations or trends. Consider seeking opinions from specialized medical centers or academic hospitals that have multidisciplinary teams specializing in gastrointestinal disorders, especially those related to Celiac disease and Eosinophilic Esophagitis (EOE). These centers often have experts who deal with complex cases and can offer a comprehensive evaluation. Since you've already explored alternative medicine with a nutrition response doctor and a gut detox diet, you may want to consider consulting a functional medicine practitioner. They take a holistic approach to health, looking at underlying causes and imbalances that may contribute to symptoms. Given his low vitamin D levels and other nutritional markers, a thorough nutritional assessment by a registered dietitian or nutritionist specializing in gastrointestinal health could provide insights into any deficiencies or dietary adjustments that might help alleviate symptoms. In addition to routine tests, consider asking about more specialized tests that may not be part of standard screenings. These could include comprehensive stool analyses, food intolerance testing, allergy panels, or advanced imaging studies to assess gut health.
    • Nacina
      Hello, I am a 45 year old mom, who was diagnosed at 29 with Celiac. My now 14 year old son was diagnosed just before his 4th birthday. Needless to say, we are old pros with the diet. He was experiencing some issues, overall health took a major plummet a year ago, and through a bit of work, was diagnosed with EOE. Tried diet alone, but his follow up endoscopy didn't show the improvements his DR. wanted to see, so I tried the medication. (Steroid). He became extremely backed up, and they had him taking Miralax daily. His health plummeted. He is a straight A honor's 8th grader who plays club soccer very competitively. His health continued to decline and at 13 had a colonoscopy and another upper gi. (He was still compacted even with the prep). I finally pulled him off all meds and mira lax, after reading much negative literature online, and put him on a gut detox diet and took him to a nutrition response dr. Finally things have improved. However...over a year later and he is having relapse stomach pain, debilitating stomach pain. Missing a day of school a week, to three this week. This is where we downward spiral with him. He says it doesn't feel the same as when he has gotten backed up before. He is eating prunes, taking his supplements, drinking water...all of the things. Yet, he is feeling horrible. Pain is abdomen, headache, lethargy, diarrhea . He is on a strict gluten dairy, egg free diet. He has adapted well in regards to diet. But I feel like we are missing something here. He is too active, too outgoing to be feeling sick all of the time. His Bilirubin is constantly high. His white blood count always runs slightly low. His vitamin D was very low last time he ran tests, (last month) when he was sick for a week. His celiac markers show negative, so it isn't that. His last endoscopy showed no Eosinaphils in his esophagus.  I have taken him to multiple Ped. Gastro specialists. They run tests, and we get zero answers. I meticulously go through labs, hoping to make some sense and maybe catch something. Any thoughts or ideas would greatly be appreciated. 
    • trents
      But if you have been off of wheat for a period of weeks/months leading up to the testing it will likely turn out to be negative for celiac disease, even if you actually have celiac disease. Given your symptoms when consuming gluten, we certainly understand your reluctance to undergo  the "gluten challenge" before testing but you need to understand that the testing may be a waste of time if you don't. What are you going to do if it is negative for celiac disease? Are you going to go back to merrily eating wheat/barley/rye products while living in pain and destroying your health? You will be in a conundrum. Do I or do I not? And you will likely have a difficult time being consistent with your diet. Celiac disease causes inflammation to the small bowel villous lining when gluten containing grains are consumed. This inflammation produces certain antibodies that can be detected in the blood after they reach a certain level, which takes weeks or months after the onset of the disease. If gluten is stopped or drastically reduced, the inflammation begins to decrease and so do the antibodies. Before long, their low levels are not detectable by testing and the antibody blood tests done for diagnosing celiac disease will be negative. Over time, this inflammation wears down the billions of microscopic, finger-like projections that make up the lining and form the nutrient absorbing layer of the small bowel where all the nutrition in our food is absorbed. As the villi bet worn down, vitamin and mineral deficiencies typically develop because absorption is compromised. An endoscopy with biopsy of the small bowel lining to microscopically examine this damage is usually the second stage of celiac disease diagnosis. However, when people cut out gluten or cut back on it significantly ahead of time before the biopsy is done, the villous lining has already experienced some healing and the microscopic examination may be negative or inconclusive. I'm not trying to tell you what to do I just want you to understand what the consequences of going gluten free ahead of testing are as far as test results go so that you will either not waste your time in having the tests done or will be prepared for negative test results and the impact that will have on your dietary decisions. And, who are these "consultants" you keep talking about and what are their qualifications? You are in the unenviable position that many who joint this forum have found themselves in. Namely, having begun a gluten free diet before getting a proper diagnosis but unwilling to enter into the gluten challenge for valid testing because of the severity of the symptoms it would cause them.
    • Fluka66
      Thank you very much for your reply. I hadn't heard of celiac disease but began to notice a pattern of pain. I've been on the floor more than once with agonising pain but this was always put down to another abdominal problem consequently I've been on a roundabout of backwards and forwards with another consultant for many years. I originally questioned this diagnosis but was assured it was the reason for my pain. Many years later the consultant gave up and I had a new GP. I started to cut out certain food types ,reading packets then really started to cut out wheat and went lactose free. After a month I reintroduced these in one meal and ended screaming in agony the tearing and bloating pain. With this info and a swollen lymph node in my neck I went back to the GP.  I have a referral now . I have also found out that acidic food is causing the terrible pain . My thoughts are this is irritating any ulcers. I'm hoping that after a decade the outlook isn't all bad. My blood test came back with a high marker but I didn't catch what it was. My GP and I have agreed that I won't go back on wheat just for the test due to the pain , my swollen lymph node and blood test results.  Trying to remain calm for the referral and perhaps needed to be more forceful all those years ago but I'm not assertive and consultants can be overwhelming. Many thanks for your reply . Wishing you all the best.
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