Eye symptoms

[cristiana]

In the international room, JMG and I have been talking about the unexplained eye symptoms that we have had that we believe has been a result of gluten damage.

We wanted to know if anyone has had eye symptoms which the medical profession have either diagnosed or have, you feel, mis-diagnosed.  I have had aura migraines in both eyes in the past but about three years ago I started to get sparkles in my right eye only which matched this pic of a scintillating scotoma, except the pretty sparkles were limited only to the centre of my eye and never took over my vision.  It lasted about ten minutes and there was no headache afterwards.  No temporary blindness either.

https://en.wikipedia.org/wiki/Scintillating_scotoma#/media/File:ScintillatingScotoma3.webp

Now I get odd bright lights either in a horizontal line or sometimes in a circle, both affecting my central vision, when I have been doing a lot of paperwork or screen work, or sometimes just after straining to look downwards with my right eye.   It can go a bit weird in my central vision, hard to describe as I can see past it - almost like looking through raindrops on glass.  T I only notice it in certain light conditions.    I notice that it goes away very quickly afterwards.  I have had retinal scans, which were perfect.  Diabetes tests and cholestoral tests.  All fine. I had an MRI when I started to get tinnitus just before the scotomas started and it was fine.

I've been told it is another variant of migraine but I'm not so sure as I can't see these lights when my eyes are closed and it only ever effects the one eye.  JMG and I have been wondering if maybe what we have is damage to the optic nerve - neuritis.  

Has anyone else had anything similar?

 

 

 

[ironictruth]

I had migraines as a kid, floaters developed at age of 23 after some visual disturbances and have recently developed migraines again. I also had stabbing pains in my eyes, but my eye doc said that was due to dry eye caused by xanax most likely. 

But I am not dx. Some conflicting antibody blood work, DQ2, and non specific intestinal inflammation. 

[Jmg]

I experience moments where my eyesight is obscured by grey patches. Sometimes it's just a small patch, at other times its like I'm in a grey tunnel with just a small part of my vision in one eye available. They don't last too long, maybe a couple of minutes. Once I excluded gluten they all but disappeared. I have experienced them rarely since and have put this down to a bout of cross contamination or inadvertant exposure. I'm using a shared kitchen and recently Christmas meant my risk level was up.

My best guess is optic neuritis. I hope its just gluten affected and not a precursor of MS! 

[cristiana]

Thank you for posting your experiences. I hope others might chime in, but meantime I found this old article which gives me hope that what I have is to do with celiac disease, although I find it unnerving (excuse the pun) that it could be nerve damage and that it might get worse.

My optician seems pretty unconcerned which I should be glad about but I don't like these episodes because to me they aren't like my previous aura migraines that I could see with my eyes closed.  But then again, if the water on glass effect that I get - i.e. feel like I'm looking through a windscreen with raindrops on it, has been described as something migraine sufferers get. What I find odd is that I can't see the water droplets when I'm in the dark or with my eyes closed - only in certain light conditions.  That is so unlike my previous aura migraines.

Open Original Shared Link

[manasota]

Cristiana,

I had symptoms almost exactly how you described in our original post, when I was 12 years old.  I was terrified.  Nobody else seemed concerned.  Luckily, this only lasted a year.   I developed classic migraine symptoms when I was 26 years old.  These lasted for decades.  Way back then, migraines were dismissed as merely "headaches" that were likely my fault because I was "tense".    Ignorance is bliss???????

Eventually, the migraines stopped.  Not sure why.  Maybe old age.  (I am now 67 years old.  Hooray I made it!!)  Maybe acupuncture.  No idea.

At this point in time, I still have plenty of eye-related symptoms (redness, swelling, watery discharge, etc.).  However, I have recently been diagnosed with a Mast Cell Disorder and believe this is the current cause of my eye problems (and many other problems as well).  Going gluten free did very little to remedy my symptoms.

Not sure if this is any help for you.  I can say I had similar issues that didn't kill me or blind me.  I guess all you can do is seek medical advice, research on your own, and keep trying everything.  Sorry I could not be more help.

Oh, my best advice is to LISTEN MOSTLY TO YOURSELF!  YOU KNOW YOUR BODY BETTER THAN ANYBODY!  Yes, get good medical advice; but, in the end, YOU be the judge.

Sending you hugs because that is all I have to give you.

[cristiana]

Hello  Manasota.

I am truly grateful to you for taking the time to write. It is comforting to me that your eye symptoms that resembled mine passed, although it seems you have much else to deal with - I am sorry.  The thing I find very difficult as a celiac is that our condition could explain so much, and yet could always be something else!  

Did you have the water on glass type migraine, out of interest?

JMG - I am wondering if sharing a kitchen could be causing CC issues.  I think I'm going to try to pay more attention there.

[Jmg]

18 hours ago, cristiana said:

JMG - I am wondering if sharing a kitchen could be causing CC issues.  I think I'm going to try to pay more attention there.

I think so, firstly no matter how careful others are it's never in their minds as much as it is for me. Plus gluten is so ubiquitous there's just so many ways it can get into things.  When I have something now, like the eye thing I got again for first time in while recently I can't often pin it down to one thing. It could just be a wooden spoon used in cooking something gluten-free  or a baking tray, crumb in a wooden chopping board etc etc.

 

[cristiana]

41 minutes ago, Jmg said:

I think so, firstly no matter how careful others are it's never in their minds as much as it is for me. Plus gluten is so ubiquitous there's just so many ways it can get into things.  When I have something now, like the eye thing I got again for first time in while recently I can't often pin it down to one thing. It could just be a wooden spoon used in cooking something gluten-free  or a baking tray, crumb in a wooden chopping board etc etc.

 

I think I need to take this all much more seriously.  Strange as I have a couple of celiac friends who sail very close to the wind and don't take all these precautions and seem to be fine. Whereas I get all this odd stuff and try to tell everyone why I am being careful and they think I'm being silly.  I suppose the only real way to be absolutely sure is to go completely whole food and be very scruplulous about the kitchen environment.  The symptoms we have could be or could not be gluten, that is the question, (wonder if Shakespeare was a celiac) and I guess the only way for me to really find out is to become much more careful in 2017.

I was listening to a Radio 4 programme a while back and they said in the production process of one of those hot chocolate drinks (they didn't name a brand) the product or its ingredients might go through 25 different processes - lots of room for CC, I thought to myself, knocking back the Chocolate Options drink.

[Jmg]

Like you say there are some celiacs who seem to be ok with being adventurous. Sometimes it seems foolhardy, like the guy I know who cheerfully drinks lager now because 'his stomach has healed'  At other times I envy them for being more carefree.I think of it as a balancing act. I don't want to get so paranoid about it that I never eat out etc but I also have to keep a handle on just what I'm eating. 

I dont have a celiac diagnosis to fall back on. One of the things which stops me taking risks is that my primary symptoms are neurological, take time to disappear and make me feel miserable! I just dont want to feel that way again, ever...

Having said all that I still allow myself gluten-free baked stuff, rice, corn etc. I was half thinking about cutting all those out for awhile and seeing how I felt then. But a life without treats doesn't sound much fun... 

[cristiana]

18 hours ago, Jmg said:

I dont have a celiac diagnosis to fall back on. One of the things which stops me taking risks is that my primary symptoms are neurological, take time to disappear and make me feel miserable! I just dont want to feel that way again, ever...

Yes, I imagine not having a diagnosis is difficult. A friend of mine doesn't have celiac disease (she had all the tests) but her awful neurological symptoms are now getting better as a result of a gluten free diet that she took up to keep someone else company.  So it just shows how important that people who have neurological problems look into celiac disease and then even if they don't have it come off gluten for a bit to see if that might be behind it.

And I so agree about treats!

 

[Jmg]

This:

 

1 hour ago, cristiana said:

So it just shows how important that people who have neurological problems look into celiac disease and then even if they don't have it come off gluten for a bit to see if that might be behind it.

is so spot on. I'm worried sometimes on here when I'm reading people that have got a negative celiac test and immediately they discount gluten, despite having symptoms that fit the profile very closely. I think one of the problems is that Gastroenterologists are supervising the diagnostic process and if Celiac is excluded then they feel their task it at an end. It's the same mindset that I ran into years ago when I was in hospital for chest pains. Once the cardiologist excluded my heart they effectively told me to ignore the pain and live with it. That cost me 20 years of sometimes terrifying pain, not to mention all the other symptoms. There doesn't seem to be much holistic medicine practised sadly?

It's funny, I was almost disappointed when the biopsy came back negative  At least, I'd thought, with a positive diagnosis I'd be in some way validated, especially as so much of the symptoms are internal and can't be seen or easily demonstrated. Afterwards I realised that I'd attached too much importance to the validation of others. 

I still have doubts as to whether the NHS screening tackled all the markers that could've identified coealiac (back to UK spelling for a fellow Brit), whether the 4 biopsies taken were sufficient or of a capsule endoscopy may have given another reading but in the end life's too short. I'd already made the decision to give up gluten and the gastro endorsed that and promised to write it up in my records. So there wasn't much to be gained other than the approval of the medical establishment and these days I don't care so much for their opinions as I once did! 

I suspect eventually Celiac, Gluten Sensitivity / Intolerance and Gluten Ataxia will all be understood as subsets of a wider issue between gluten and humans. The latter two are just a bit further down the road for medical science and the tests or general awareness isn't there yet. So I'm quite happy telling a waiter that I'm celiac as that way I'll get the absolute no messing about gluten free food that I need.  As it turns out the neurological symptoms are more common with non celiac gluten intolerance in any case. 

 

[cristiana]

1 hour ago, Jmg said:

Hear, hear. 

It must be incredibly tough for people who haven't got coeliac disease to fall back on in restaurant situations, etc.  

Re: the the person I know with neurological problems that I just mentioned.  I seem to remember I suggested she came off gluten some time before she actually did but she was a bit sceptical.   What finally brought it about was a personal situation where she needed to come off gluten to help a friend out that had coeliac disease.  It was extraordinary as within weeks all sorts of nasty symptoms started to disappear.  She then started eating gluten again and they came back with a vengeance.

It is quite incredible the difference this has made to her life - I certainly hope the medical profession are pooling this information somewhere.

 

 

1 hour ago, Jmg said:

 As it turns out the neurological symptoms are more common with non celiac gluten intolerance in any case.