My story - Please help

[P-Thomas22]

Hi all,

I wanted to share my story with you all to get some support, guidance, and help. Back in June 2019 a returned from a trip to Canada and immediately after I had this weird dizziness effect happen along with horrible brain fog and confusion. I went home from work and slept it off. Next day back in work and it happens again. It's not so much that the room is spinning but almost like I am stepping through the floor and just not connected to my surroundings. This scared me a lot and I went to the ER thinking I might be having a stroke or something. I was held overnight for observation and had an MRI and scans of my heart and arteries. Everything came back normal. I left the hospital and not a few hours later all the feelings returned. Dizzy, confusion, tinnitus, headache. I followed up with neurology, cardiology, ent, and primary. All were kind of pointing to the others to follow up with. I was tested for seizures, and BPPV and all came back negative. Stress tests on my heart all were great. After a few months is just sort of went away.

Fast forward to June 2020 and I just moved from VA to CO and almost immediately my symptoms returned. I tried to ignore them and focus on my new job but they got so bad that I had to leave work and went to the ER again as it is just the most horrible thing I've experienced and know something is wrong with me. Rinse and repeat of 2019. This time though I have a better neurologist that is trying his best to work with me and figure it all out. I also have a great otolaryngologist that is doing all he can as well. Over the months of them trying to figure everything out nothing is improving and the pressure in my ears is increasing and tinnitus is getting louder. I have some post nasal drip but in all my scans I show no sinus problems or infection. My dizziness seems to have two types that rotate on how they effect me. Sometimes I get true vertigo attacks that are like the world is spinning and I almost need to stop and just sit where ever I am and hope it goes away. Usually I just try my best to walk back home and get safe. The other is the trampoline effect. Sometimes it is like I have sunk up to my knees with each step and my legs are not my own. I also get irritable and anxiety when this happens. The ringing in my ears usually gets louder and increased pressure. I feel like I constantly need to yawn to pop my ears. The best my doctors have come up with is that I have migraines along with menieres disease in my left ear and possibly something called MdDS which is sort of land sickness that doesn't go away after traveling. I am currently on long term disability and not able to work. This is a daily struggle for me and obviously there are days of bad depression, anger and frustration. I work in the cycling industry and am an avid cyclist and I have had to give all that up and feel lost and my health has stolen my passion.

I had a wonderful friend reach out to me that went through a lot of this a while back and it turned out it was Celiac disease and once eliminating gluten her symptoms went away. So I am about a week into being gluten free and sticking with it but I wanted to know if others have had this experience and what helped and what your story is/was.

Thank you for you time and thoughts!

 

-Phil

[trents]

Phil, welcome to the forum.

You have a range of symptoms that may all fit under the common heading of neurological distress. Though no one person with Celiac disease will share all your symptoms, some of your symptoms have probably been experienced by various members in the forum community who suffer with celiac disease. 

It is well-known that gluten causes neurological problems for a significant percentage of people with gluten sensitivity and Celiac Disease.

If I were you, I would request that your primary care doc order a celiac antibody panel done, which is a blood test. If it turns up positive, he or she may also arrange for you to have an endoscopy done to examine and biopsy the small bowel. Celiac disease damages the mucosa of the small bowel and that damage can be observed microscopically. If your doctor is not sure what tests to order, you might help him with this information: https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/

But, now here this! Don't attempt to start eating gluten free before having any testing done, either the blood antibody test or the endoscopy/biopsy. They will be invalidated if you do.

Edited December 29, 2020 by trents

[GFinDC]

12 hours ago, P_Thomas22 said:

Hi all,

I wanted to share my story with you all to get some support, guidance, and help. Back in June 2019 a returned from a trip to Canada and immediately after I had this weird dizziness effect happen along with horrible brain fog and confusion....

I had a wonderful friend reach out to me that went through a lot of this a while back and it turned out it was Celiac disease and once eliminating gluten her symptoms went away. So I am about a week into being gluten free and sticking with it but I wanted to know if others have had this experience and what helped and what your story is/was.

Thank you for you time and thoughts!

-Phil

Hi Phil,

Welcome to the forum!

I think it's obvious you are severely addicted to Canada!  Withdrawal is the problem... :)  Joking!

Trents has it right.  Keep eating at least some gluten daily until your celiac disease testing is complete.  The blood antibody testing depends on the immune system being actively producing antibodies which show up in blood tests.

Celiac can cause nerve damage in some people.  There is a condition called gluten ataxia that might be an issue.  There is also a possible relation to vitamin B-12 deficiency.  Celiac can cause gut damage and that impairs our ability to absorb nutrients like vitamins and minerals.

The endoscopy is often several months after the blood tests.  Although during the pandemic they may decide it is too risky to do it at all.

Going off gluten for several months and then going back on gluten for testing is called doing a gluten challenge.  Some people report worse symptoms during a gluten challenge than before they ever stopped gluten.  So it's best to get tested before stopping gluten.

 

Edited December 29, 2020 by GFinDC

[DJFL77I]

celiac causes dizziness and off balance but I don't think vertigo

[Scott Adams]

Actually vertigo is a symptom of celiac disease, and it is a symptom that I had before being diagnosed.

[Posterboy]

On 12/28/2020 at 6:48 PM, P_Thomas22 said:

Hi all,

I wanted to share my story with you all to get some support, guidance, and help. Back in June 2019 a returned from a trip to Canada and immediately after I had this weird dizziness effect happen along with horrible brain fog and confusion. I went home from work and slept it off. Next day back in work and it happens again. It's not so much that the room is spinning but almost like I am stepping through the floor and just not connected to my surroundings. This scared me a lot and I went to the ER thinking I might be having a stroke or something. I was held overnight for observation and had an MRI and scans of my heart and arteries. Everything came back normal. I left the hospital and not a few hours later all the feelings returned. Dizzy, confusion, tinnitus, headache. I followed up with neurology, cardiology, ent, and primary. All were kind of pointing to the others to follow up with. I was tested for seizures, and BPPV and all came back negative. Stress tests on my heart all were great. After a few months is just sort of went away.

Fast forward to June 2020 and I just moved from VA to CO and almost immediately my symptoms returned. I tried to ignore them and focus on my new job but they got so bad that I had to leave work and went to the ER again as it is just the most horrible thing I've experienced and know something is wrong with me. Rinse and repeat of 2019. This time though I have a better neurologist that is trying his best to work with me and figure it all out. I also have a great otolaryngologist that is doing all he can as well. Over the months of them trying to figure everything out nothing is improving and the pressure in my ears is increasing and tinnitus is getting louder. I have some post nasal drip but in all my scans I show no sinus problems or infection. My dizziness seems to have two types that rotate on how they effect me. Sometimes I get true vertigo attacks that are like the world is spinning and I almost need to stop and just sit where ever I am and hope it goes away. Usually I just try my best to walk back home and get safe. The other is the trampoline effect. Sometimes it is like I have sunk up to my knees with each step and my legs are not my own. I also get irritable and anxiety when this happens. The ringing in my ears usually gets louder and increased pressure. I feel like I constantly need to yawn to pop my ears. The best my doctors have come up with is that I have migraines along with menieres disease in my left ear and possibly something called MdDS which is sort of land sickness that doesn't go away after traveling. I am currently on long term disability and not able to work. This is a daily struggle for me and obviously there are days of bad depression, anger and frustration. I work in the cycling industry and am an avid cyclist and I have had to give all that up and feel lost and my health has stolen my passion.

I had a wonderful friend reach out to me that went through a lot of this a while back and it turned out it was Celiac disease and once eliminating gluten her symptoms went away. So I am about a week into being gluten free and sticking with it but I wanted to know if others have had this experience and what helped and what your story is/was.

Thank you for you time and thoughts!

 

-Phil

Phil,

I do a lot of deep research on Vitamins and nutrition....so after a while you find solutions for people....though most people don't listen to it....because they have to find out these things for themselves.

I had a friend who had your problem....but he would never take Magnesium to help himself......maybe you will.

Thiamine, Magnesium and Sulfites can all trigger or treat tinnitus.

Also for your Dizziness/Vertigo try the "Epley Manuvere"

Here is some links that might help you.

https://www.webmd.com/brain/home-remedies-vertigo#1

Here is the research on Magnesium......Glycinate and Citrate are the best forms of Magnesium to take....

See this research entitled "Phase 2 study examining magnesium-dependent tinnitus"

https://pubmed.ncbi.nlm.nih.gov/22249877/

Here is the research on Sulfites....

https://www.sciencedirect.com/science/article/abs/pii/S1756239208000785

See this tinnitus talk link on how Thiamine treated their tinnitus...

https://www.tinnitustalk.com/threads/thiamine-pyrophosphate-tpp-stopped-my-tinnitus.13673/

I hope this is helpful but it is not medical advice.

Posterboy,

[Kate333]

On 1/1/2021 at 1:02 PM, Scott Adams said:

Actually vertigo is a symptom of celiac disease, and it is a symptom that I had before being diagnosed.

Hi Scott.  Just wondering...how long ago did you have this symptom (vertigo, room spinning sensation) before your celiac disease diagnosis?  AFTER your celiac disease diagnosis and beginning of a gluten-free diet and return to "normal" G blood test range, did you STILL struggle with it, or ever have lingering "lightheadedness"?   Can you recommend any tips to manage these symptoms as one heals?  I'm thinking perhaps it takes awhile for the body--including the neuro system--to fully heal. Thanks.  

My story:  I had a sudden vertigo attack late last year, shortly after I had the TTG blood test and learned about celiac disease.  VERY scary experience!  I'm not sure the trigger was solely due to gluten exposure or acute, chronic anxiety because it happened during a time of severe stress in my life due to other non-celiac disease factors.  Fortunately, it has not recurred since then.  I'm not sure if that's due to being so strictly gluten-free but I hope so.

However, I STILL have chronic weird, lightheaded "drunk"-like sensations if I move around, walk (I am fine lying in bed or sitting still).     I've also read that many people--even those without celiac disease--who first experience the shock of sudden vertigo often have lingering, chronic lightheaded sensation because of chronic stress, extreme fear of it recurring.  

Phil, not sure what advice to give, except to hang in there the best you can and do all you can to help your psyche to heal from the understandable shock of those events.  If it's any comfort to know, I was literally bedridden after that happened to me in 2019.  It did take awhile to rebuild my confidence so I could return to a "normal" routine without help from others.  I started with a wonderful, encouraging PT and friends who helped me right after it happened.  After a month I was so fed up with living in extreme fear that I just challenged myself to get out of bed and slowly return to trying to do small tasks (walking around my neighborhood, short shopping trips, showering/dressing etc.).  Most tips are old fashioned, common sense:  Get enough rest, eat healthy.  Relaxation tapes.  Consider therapy and anti-depressants.

[DJFL77I]

I had off balance feeling when walking when my symptoms first began..  like the sensation that I was going to fall to the left or right when walking..   that went away but I still have mild dizzy sensation and feeling like I'm in a bit of "daze"...   that improved.. but still not 100% gone..

I'm not sure if that's from the celiac or I might have allergies .. going back to the ENT Dr to check that out more later this month.

[Scott Adams]

@Kate333 My vertigo symptoms included a spinning sensation, and the feeling that I was going down in an elevator when I wasn’t in an elevator, and the feeling like you get if your standing on the edge of a tall building looking down. This sometimes triggered panic attacks which made it far worse.

These symptoms actually started as far back as when I was in high school, but got much worse in my early 20’s after my full blown celiac disease was triggered, probably by an illness I had when traveling in Europe with friends.

These symptoms gradually decreased after I went gluten-free at around 26 years old, but it took about two years in the diet before they ended, and I realized they were associated with gluten. Before this I (and my doctor) thought I might need anxiety meds, but never went that direction.

[cristiana]

On the gluten front,  I have a feeling of being at sea when I am glutened which lasts a good couple of weeks or so after the event.  It makes me feel mildly sea-sick, or like when you have been travelling too long in a car, kind of car-sick, and is related to eye movement often.  It usually catches me unawares.  Sometimes it is mildly nauseating but other times when I look down, I feel like I'm about to fall over, or even scrolling the computer screen can bring on a feeling of swooning.  

I also get a different sensation, like the room is spinning, but I don't think that's to do with glutening.  My husband also gets it - it is to do with an inner ear problem in his case and I assume it is with me - but I have been known to fall over with it when getting up suddenly from bed, etc!

However, one other dizziness came just after my diagnosis when I started to feel like I was walking on a moving deck at sea, or walking on marshmallow.  It was particularly bad on hard surfaces like roads but less noticeable on uneven ground and on the beach.  Going into a supermarket also was really odd - seeing all those rows of shelves made me feel so dizzy.  I kept going back to the doctors about it and they kept reassuring me it would pass (I was a frequent visitor in those days and I suspect they attributed it to Health Anxiety!) Nothing was done until I finally got tinnitus in my right ear.  I was sent off for a head and neck MRI and found that in fact it wasn't an ear problem but a neck problem.  Cervical Dizziness.  My neck was in a dreadful state, to quote my ENT.  Apparently the neck is a really important part of balance - have you got any neck issues?

Anyway, for months I'd been blaming  gluten but then I suddenly realised that all these symptoms occurred a few days after a neck injury, a kind of mild whiplash after carrying my seven year old over my head, aeroplane style, but I had never put two and two together.   The tinnitus was just incidental.  I first had this sensation in July 2013 and it lasted a few months.  

 

[Kate333]

On 1/3/2021 at 12:02 PM, cristiana said:

However, one other dizziness came just after my diagnosis when I started to feel like I was walking on a moving deck at sea, or walking on marshmallow.  It was particularly bad on hard surfaces like roads but less noticeable on uneven ground and on the beach.  Going into a supermarket also was really odd - seeing all those rows of shelves made me feel so dizzy.  I kept going back to the doctors about it and they kept reassuring me it would pass (I was a frequent visitor in those days and I suspect they attributed it to Health Anxiety!) Nothing was done until I finally got tinnitus in my right ear.  I was sent off for a head and neck MRI and found that in fact it wasn't an ear problem but a neck problem.  Cervical Dizziness.  My neck was in a dreadful state, to quote my ENT.  Apparently the neck is a really important part of balance - have you got any neck issues?

Anyway, for months I'd been blaming  gluten but then I suddenly realised that all these symptoms occurred a few days after a neck injury, a kind of mild whiplash after carrying my seven year old over my head, aeroplane style, but I had never put two and two together.   The tinnitus was just incidental.  I first had this sensation in July 2013 and it lasted a few months.  

 

Hi Cristiana.  After you realized you had neck problem and tinnitus, how was it treated?  PT?  Chiro?  Did the tinnitus go away when the dizziness resolved?  Have you had any recurrence of these symptoms since 2013?  I've had dizziness, tinnitus, along with audiophobia, all of which seemed to develop several months ago.  I also have a constant daily feeling of body heaviness, weakness.

Although I haven't lifted any 7 year old kids over my head, I do notice neck "stiffness" and crepitus, but I just assumed that all comes with age.  (After age 35 or so, most people show "degenerative" changes in their spine/neck on MRIs, x-rays.)  I also don't recall any acute injuries prior to developing it.  I just chalked these symptoms up to extreme, work-related stress and insomnia, the celiac disease diagnosis and acute vertigo attack in 2019, plus the stress of the continuing, worsening pandemic.  Of course, these symptoms only fuel/feed high stress which makes them worse.  A vicious cycle I would LOVE to break!😵

On a personal note, I hope you and your family are doing well in the UK amidst the latest quarantine.

Kate   

[cristiana]

Hi Kate!

Thanks so much for asking about us here in Britain. 😊The scientists announced this evening that they consider 1 in 50 people now have the virus, and of course we have a new mutation that is really driving the numbers through the roof.  Sadly for a very long time a sizable minority have been flaunting the rules left right and centre and that hasn't helped at all, either.    I'm hoping and praying that finally the message is getting through to them - one person I know has suddenly completely changed, and is trying really hard to obey the rules now - if one watches the news, it would be really hard to think it's OK to bend the rules, even just a little bit.

Anyway, back to the neck problem and tinnitus.  The neck problem:  I did have a bit of pain the day it happened, but it then went away completely, and only resurfaced some time after the injury.  That's why I didn't put two and two together.   I did have some physio which interestingly always left me with a feeling of fullness in the ear, and I always thought I'd pass out after a session.  But in the end I didn't think it was doing much good so I just stopped going and after a few months the pain seemed to settle, as did the dizziness.   I was given some balance exercises to do during this time but in the end I think my brain kind of re-educated itself, I think that can happen!  Occasionally after an awkward neck movement it can come back for a bit.  (The other thing I notice with it is sometimes my arms didn't feel as if they belonged to me - they worked OK, but they didn't feel like they were mine, and yes, kind of weak  - I think that was all related).

As for the tinnitus, I now have it in both ears but it waxes (no pun intended) and wanes, and as a dear old WWII veteran once told me (who had lifelong tinnitus following his time as aircrew on Lancaster Bombers) you can somehow learn to ignore it.  I do find it plays up when I'm stressed but when I'm happy I hardly notice it.   

I think the fact that you have neck stiffness means some of the problem may well be in your neck. And then stress makes us so aware of everything around us. 

I am a professional hypochondriac and when I was suffering from all this stuff in 2013 there were occasions that I was hyper aware of every step I took, every arm movement, and it just made things so much worse.  I'm not saying it's all in our imagination, but I think sometimes when one is stressed one becomes over aware of things that normally one would hardly give any thought to. 

But it did take until around January 2014 before I saw real improvement .. not a quick fix in my case. 

The other thing I should say is I have met so many people with balance issues since that time living very normal lives.  I didn't realise how common it was. That has made me feel a bit more relaxed about it.

[knitty kitty]

A case study of a Celiac with thiamine deficiency....

https://med-read.org/journals/medread-journal-of-neuroscience-and-neurological-disorders/fulltext/rare-cause-of-central-vertigo-of-metabolic-origin-due-to-vitamin-b1-deficiency-case-report

Another article....

https://www.dizziness-and-balance.com/disorders/central/wernickes.html

Thiamine deficiency listed as a cause of dizziness.....

https://www.michiganneurologyassociates.com/blog/what-causes-a-balance-disorder-and-what-can-i-do-about-it