Celiac Disease And Mental Disorientation And/or Vertigo?

[StClair]

Sorry to ask yet another question!  About a year ago, I was in a meeting at work, and suddenly I did not know where I was.  In an environment as familiar as my own home, I had to piece together clues, unsuccessfully, to figure it out.  I had no idea how to get back to my office, and just started walking, hoping to get there by instinct, which I did.  When it cleared after about 20 min, I was sent for a CT and later an MRI, which thankfully showed nothing.  It was diagnosed as Migraine Aura, but in my 25+ years of getting migraines this had never happened before, or since.

 

I have also had several unexplained nasty experiences of vertigo.

 

Now my migraines are virtually gone since the removal of gluten three weeks ago, and I'm looking back at everything with a new perspective.  For sure, the celiac caused the migraines, which caused the disorientation.  This has been a long story to ask a simple question!  Has any of this happened to any of you?

 

Thanks again.  I appreciate your patience with my questions!

[cyclinglady]

No problem.  I never had migraines or headaches when I was younger.  My mom did.  But, during perimenopause, I suffered with two migraines each lasting for a few days.  It was as if I were in a bubble.  People were talking to me at work and I could not hear them.  Weird!  Had to go home.  Within minutes that weird sensation was gone, but I could not tolerate loud noises, etc.  Back to a traditional migraine.  

 

Now in retrospect -- celiac disease or perimenopause?  Who knows?  Research shows now that celiac disease affects the brain and nervous system.  Research gluten ataxia.  

 

Keep those questions coming!  

 

(Now I need to stave off dementia!!!!   and keeping up on this forum helps!)

[StClair]

Sounds very similar. It is tempting to think of every little thing now as a celiac symptom! I wouldn't have had this hangnail if I hadn't eating gluten for decades, ha, ha. But it is kind of amazing to think that the migraines, the osteoporosis, the joint pain, the anxiety, all had a common link. Now if I could just get over the fatigue, I'd have enough energy to be excited about it!

You guys all sound pretty on top of it, which is very encouraging. I'm so paranoid about accidentally ingesting gluten, it's crazy. Bet you get a handle on that too.

[cyclinglady]

No, I am still pretty paranoid about getting glutened.  I guess it's because I like feeling well.  A glutening can set me back for over a week.  Having a gluten free home has been essential for me.   At least there is one place I can let down my guard.  It helps that my husband is gluten free too.  He went gluten free 14 years ago per the poor advice of my allergist and his GP.  "Ah, trying getting off gluten and see if it helps."  Amazingly, it did.  His first symptom?  Snoring.  So, it's easy to see when he gets glutened and easy for him to adhere (I am the snoring police!).  A glutening triggers flu-like symptoms for him (severe body aches, etc.)   I was pretty shocked when I was diagnosed.  Just had life-long anemia.  Had one genetic one and well....I am a women.  So, it was never caught until after menopause.  Two of us with celiac disease?  That was shocking.  But not really.  Our families all have various autoimmune diseases.   Our daughter has tested negative, but we keep on top of it.  We joke that she is doomed!    She gets her gluten fix while away from home.  

 

 I too, have osteoporosis and I have had two vertebrae fractures doing NOTHING!   That occurred about two months into my celiac disease diagnosis.  I was so unhappy! That was worse than the celiac disease diagnosis.    I was off my bike for more than six months.  I worried about more fractures, but I healed and have not had any since (two years).  I go for another bone scan in July.  I am hoping that exercise, supplements and hormones are helping me build bone.

 

The good news is that you can get better!  Your fatigue will soon go away.  Patience is one thing I have learned about since my celiac disease diagnosis. 

[MinnesotaCeliac]

St Clair, YES!  I had a very similar experience. A very unnerving and surreal experience! If someone described the symptoms I would believe they were having a stroke. I had also experienced vertigo and was seeing doctors for it just prior to being DX'd with Celiac. Prior to going gluten free I used to have migraines at least about a third of the days during the month. Since going gluten free I can count on one hand how many migraines I have had (It is coming up on four years).

 

Just remember to enjoy life and don't let living gluten free make your world small.  I'm still working at it.  It gets easier as time goes by. So much easier! 

 

~Cheers

[StClair]

Cyclinglady, you are SO lucky to have a gluten-free household. My biggest fears are traces of Raman noodle water adhering invisibly to something and dishwasher sediment, so I wash everything twice, once right before I use it. One son just tested negative, and the other will test in a couple of weeks, so fingers crossed there. Your husband's snoring experience made me wonder if the congestion in my ears from a dust mite allergy might also have some gluten connection. The coughing and post nasal drip have improved noticeably post-gluten.

Understanding and adapting to all this has become quite a big part of my life, a huge "hobby" of sorts, but not the really fun kind, ha, ha.

Thanks again for the generous input!

[StClair]

Minnesota, yes, wasn't it strange? They thought I was having a stroke or a brain tumor, but I kind of knew I wasn't. The whole thing is pretty fascinating, but worries about lurking problems and lingering fatigue do take a bit of a toll at this point. When I get the energy, I'm sure I will be marveling at how so much of my weird health history makes sense now.

I'm going to take cycling lady's advice and look up gluten ataxia. Thanks for the encouraging words!

[cristiana]

First aura migraine I ever had, whilst expecting my first child, I could hardly speak, and my hands felt like they weren't mine.  Very disorientating.  I thought I was having a stroke too.  MRI scans showed nothing of concern.  This was preceded a few months before with a mouthful of awful ulcers (which now I totally attribute to being a celiac).  There were also some episodes of hypnopompic hallucinations which started in my pregnancy (seeing weird patterns when I woke up).  Again, all never explained at the time.  Go gluten free when I finally get DXd a couple of years ago and all these symptoms disappeared.  Sometimes the room looks a bit green when I wake up for a split second, if I am in a very light room.  I suspect gluten might be the problem when that happens, I have had a clean MRI since that one started too!

 

I got vertigo after going gluten-free and despite measures to avoid CC etc I ended up having to see an ENT when I also developped tinnitus.  Turned out it I had put my neck out and it was this that was causing the vertigo, which got better without treatment.  It is indeed a puzzle sometimes to know whether to blame gluten or not.

[notme]

i had vertigo (o my gosh, i had the worst attack of it while DRIVING - i do not wish that on anyone.  plus, i was at the edge of a steep mountain cliff, so i'm lucky i got the car stopped without going over the edge) but now i'm fine.  i don't know that i'll ever bungie jump (HA HA NOT A CHANCE!!!)  but my migraines went away, as well.  asthma cleared up.  a whole mess of other 'unrelated' symptoms *poof* gone.  the wierdest thing?  ability to make decisions <didn't know it was a problem until i started sorting through all the things i had put aside because i was too tired/overwhelmed to deal with them.........  makes me mourn a little for the 25 years i went through in a fog  

 

lolz - of course your hangnail is from years of undiagnosed celiac !!!   :D

[caro7]

I had all those things happen to me. Still do if I get gluten in my system, I have learned not to panic but still wonder if it could be a stroke.  The first time it happened was years ago, I could not figure out how to start my car and had to sit for a while and think of whereI was. MRI came back normal also.