Avatar universal

Celiac, OcularMigraine and Difficulty Swallowing

I’ve been having ocular migraines since about 1970.  In 1999 I had a bad episode of them, loosing partial sight in my left eye for a week.  I was diagnosed as having drusen spots at the time and the Ophthalmologist recommended that I start on Centrum Silver even though I was 42 because it had some extra nutrients known to be helpful for this and the condition was linked to macular degeneration.  After 6 months I quit having them and never connected the dots until this very moment.    
I started having what I thought to be ocular migraines again in January of 2008.   These were different however, hitting me like a Mack truck.  Quite often when I get them I have to sit down or risk passing out.   They occur in three different forms now.  
The mild ones are the squiggly line variety I remember having since 1970.  They are the longest lasting, maybe half an hour an hour at most.  
The second type is like a curtain forms over one of my eyes, never both at the same time.  It’s like light can get through at the top 20% of the field but below that is a brown out.  Not total darkness but not enough light to see; only brown filters through, with some barely visible light filtering through.  These last for no more than a minute at maximum strength and then they fade out.  
The third type of visual symptom is probably the scariest of them all even though I can minimize the danger it can cause when driving by covering one eye.  It is however accompanied by a state of confusion where my brain is not functioning properly.  On top of the kaleidoscope effect it causes with my vision my brain feels like it is short circuiting.  The sensation it causes reminds me of those old fashioned monitors in the 1980 when you bumped them pretty hard, they kind of flicked out for a few seconds, only these symptoms last for a few minutes or maybe time just slows down during these episodes I’ve never timed them before.
I’ve been living with all three of these type episodes since January of 2008 and I’d been through a couple ophthalmologists who finally sent me to a neurologist who sent me through a battery of tests MRI’s Cat Scans and whole slew of blood work back in 2008 to 2009 I think he’d given up and tried sending me back to the Ophthalmologist saying he didn’t think he could help me.  I quit going to see him in the fall of 2009 and in the spring of 2010 was diagnosed with celiac disease when my liver enzymes started going up.  This wasn’t even my regular doctor.  I was just seeing him to get a refill for my asthma medications.   The More I read about this celiac disease the more I am beginning to believe it’s all connected.   My brother died 6 years.  Three months before he died he told me he had this celiac disease.  He said it was like an allergy to wheat and I should get tested.  He told me it was killing him but he couldn’t live like that.  He died of liver and kidney failure and at the time I contributed it to his drinking and taking statins for his heart, he’d had a quintuple bypass surgery in 1997.  He was also taking painkillers to combat the chronic joint pain he’d developed, probably caused by the statins,  And if the  .My great Uncle and my Grandpa both died of the same diagnoses that my brother had postmortem.  They all died young, between 57 and 61.  I don’t think I just have the alcohol, statins and opiates weren’t enough to ruin his liver and kidneys,  surely the Tylenol they put in those pain killers would.  So you see I forgotten that he’d even told me he had celiac disease and it was killing him.  I have a battery of different tests over the last year, supposedly to rule out everything they’d forgotten to rule out before, because the number of times I would get these ocular migraines went from a few times a week back in 2008 to 10 or more a day in 2011.  Still nothing.  
About 6 months ago I started having these episodes of difficulty swallowing.  They only occurred at night after a particularly strenuous workout and having a drink or 2 before I would go to bed.  I use to have a drink or 2 every night up until 2008 when my brother died.  Ever since then I will only have an alcoholic drink on Friday or Saturday nights.  Even then it would only be a drink or 2.  So these episodes only occurred on Friday nights and pretty infrequently at that.  It was like I’d forgotten how to swallow extremely weird huh.  This week for the first time at night I felt a milder form of this swallowing problem without working out or having anything to drink.  My grandfather and my Uncle Oscar died of liver and kidney failure as well both attributed to alcohol abuse.  I’m beginning to wonder.  I believe I may have a particularly malignant form of this celiac disease.  The medical community just appears to be totally incompetent.  I was the one who discovered about magnesium from researching on the internet.  As far as testing the only things they have come up with is a thickening of the white matter in the brain that has not changed in size since 2008 and Auditory testing that saw a difference from one left and right ears by flowing warm water over the tympanic membrane and checking for different level of nystagmus.  And despite the considerable difference in the dizziness I felt and the people doing the test both times showing amazement at the numerical differences the doctors are now saying it was a normal exam.
About 6 months ago I learned that magnesium could help the ocular migraines.  They went away totally at first but started to come back gradually even on the magnesium which I’ve been taking twice a day.  I back to 2008 levels of having the attacks a few times a week and now these episodes of not remembering how to swallow.
Can anyone offer some particular suggestions?  I thought about the possibility of Myasthenia Gravis but if that was the case magnesium shouldn’t have been so helpful.  This is a real perplexing problem
6 Responses
1340994 tn?1374193977
You can get tested for Celiac disease, but since it seems to run in your family, docs shouldn't argue with you about testing.  

If you change your diet and take it seriously like I do, your health can still improve remarkably.  Because of the damage to your intestinal tract, you may do best if you abstain from dairy and nuts too, at least for a while.  
Avatar universal
I'd also like to suggest you get tested for gluten issues and also find out if you cross-react to dairy - many with gluten-sensitivity do and that issue can also cause problems. When you get tested, find out which genes you carry in addition to checking if you are currently producing antibodies.

My husband has the gluten and diary problem and his health has improved considerably since he is very strictly off gluten and all forms of dairy. It's not as hard as it sounds and his improved health is well worth it.

Blood tests can be notoriously inaccurate in some of the early stages of gluten issues. That may be one problem with why docs don't always follow-up on symptoms that suggest gluten issues. If there's any question of 'what is it' in your case, consider using a fecal antibody test instead of blood testing. Many within the celiac community consider fecal antibody testing superior to blood tests.
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I have already been tested and my titer was >100 anti-tissue transglutaminase antibodies (tTG).  I guess they don't bother to titer for a higher number.  Which is why I have been Gluten free for over 2 years now.  My last test was measured at less than 4 the 2nd year in a row.  It has however not doing anything for the ocular migraines.  In fact they have gotten significantly worse.  The only thing that has done anything was magnesium supplements.  But now I have this new perplexing ailment.  I get so tired some nights that I forget how to swallow.  It's downright bizarre not to mention a little bit frightening at times.
Avatar universal
Have yourself checked for cross-reactivity to other foods. those with gluten issues often cross-react in an autoimmune life fashion.
Avatar universal
I hope you are doing better since this posted. I just wanted to share with you that I have Gluten Ataxia and have been GFree for only a year now. But in my horrible time of diagnosis process I too would "forget" how to swallow..it was like I knew to swallow but couldn't do the actual Gulp ..and not like choking because sometimes I wouldn't even be eating and I would "forget " how to swallow.  It was most definitely nerve racking. I'm wondering if you are getting some sort of Cross Contamination..some people (like me) are just sO neurologically affected at the tiniest trace of gluten. Good luck and I pray for those Ocular migraines to go away!!!
Avatar universal
To Kkoopmann

My tTG has been below 4 the last two times it was tested,  So it sounds like you had the exact same problem as I have.  Luckily mine has never occured while eating.  As a matter of fact it only seems to occur in the evening, usually when I'm extremely tired.  Are you still getting those episodes?    
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