Johns Hopkins study of MS using OCT

[Poppy7402]

Thought this article may interest some, particularly limbolanders.

Although we've worked out that I definitely have gluten ataxia via a trial last week (when I wanted to curl up and die it was so bad), there are a few things that don't fit that picture, making it look like my GA might have an unwelcome MS buddy.

I'm getting OCT done tomorrow as I had retinal holes in the periphery of both eyes earlier in the year and I'd like to know why.

http://www.bbc.co.uk/news/health-20836082

[supermum_ms]

LOL tonight on the news, they were talking about a research study in Australia that has proven Celiac disease is much more prevalent than first thought, 1 in 60 for females and 1 in 80 for males. Unfortunately I didn't catch the entire thing but it mentioned testing i've read before, blood and genetic markers for Celiac etc i'm looking for the published research, i'll get back to you if there is something new or confirmed.

Your going to find NCGS is fairly new, the separate category was only recognised, um I think it might of only been in the last year or two. A lot of the gluten information is actually based on research done for Celiac, so there is a big avenue for confusion, because even 'gluten sensitive' was previously used in Celiac articles. NCGS is more like food intolerance, sx's are of the lowest scale, definitely less problematic than 'allergic' reaction sx's but the main point is that when you remove the sensitivity/intolerance, the sx's are suppose to stop.

Its still an autoimmune inflammatory response but its totally different type of autoimmune inflammatory response than Celiac and non celiac gluten sensitivity isn't suppose to be able to cause the long term and major damages like Celiac. Gluten ataxia is suppose to be rare even in dxed Celiac's, so it would have to be even rarer to be dxed with gluten ataxia, without having Celiac disease.  

I am thinking if you haven't had blood, stool, biopsy and genetic testing for Celiac, then Celiac may not be out side the realms of possibility yet, btw who dx the gluten ataxia?

Cheers........JJ          

[Poppy7402]

JJ,

I think there's a sequence of events involved in this NCGS thing.  From the article I posted the link to above, my interpretation is that you start off with NCGS and if you don't treat it, then it can morph into gluten ataxia.  (I could be wrong though!!!)

In retrospect, I've had a gluten sensitivity for as many years as I can remember.  It's only in the last 18 months that things have really turned to custard and this supposed gluten ataxia has become apparent.  I'm guessing that if I'd known about the gluten sensitivity earlier, I could have perhaps prevented it's progression??  

The article also seems to suggest that if you don't go gluten free early enough, then full-blown autoimmunity can result with the consequence that becoming gluten free is useless.

Testing seems to be the biggest issue with NCGS.  When I wrote to Dr Rodney Ford, he said the only way to truly know was to go completely gluten free, which I did and lots of my symptoms disappeared, but not all.  

Whether GA and MS can co-exist, I really have no idea!!

Cheers


Poppy

[supermum_ms]

I don't think the OCT is going to be a test used to dx or exclude MS if nothing shows up, its more about it being an alternative monitoring test. Its a cheaper and quicker test than the others (MRI, EVP etc) but its showing promise as a being another potential test, to monitor ocular degeneration from MS.    

[topic change - gluten]

This is article is definitely worth reading if you have an interest in 'cerebella ataxia and gluten sensitivity'
http://onlinelibrary.wiley.com/doi/10.1111/j.1469-8749.2000.tb00087.x/pdf

Gluten sensitivity/intolerance, along with lactose intolerance which commonly go together, are common enough comorbid Autism issues, so I do have a personal interest. My older brothers don't have either but both my kids are lactose intolerant and have been tested for celiac and gluten sensitivities too many times to count. No test, including elimination has ever identified gluten as being a problem but we still have 'had' suspicions with our pastry chef daughter.  

From what I understand, gluten sensitivity doesn't necessarily have any diagnostic test markers, and eliminating gutten from the diet and getting sx improvement or full recovery, is a usual determiner for dx. Celiac on the other hand does have diagnostic test markers (in the majority), and is determined by blood tests and or biopsy.

Celiac, non celiac gluten sensitivity and gluten ataxia are widely acknowledged as being separate gluten disorders, with different autoimmune related inflammatory reactions. Gluten sensitivity with out being a Celiac is labelled 'non Celiac gluten sensitivity' (NCGS).  NCGS doesn't have the recognition of test markers and MRI evidence (eg lesions) etc, like Celiac and gluten ataxia does.  
    
Admittedly i'm a bit confused with a gluten ataxia dx in someone with NCGS, and not Celiac, because its typically related to Celiac and even then its only dx when its idiopathic, so there isn't any other explanation, and MS would be a valid alternative causation of ataxia. In my head a dx of both gluten ataxia and MS, would be highly unusual and maybe even be contradictory. It makes more sense for someone to have MS and still be gluten sensitive, or have Celiac and still have gluten ataxia but I can't reconcile MS and gluten ataxia if for either there can be no other explanation possible for dx.

Sorry for thinking out loud, i am really interested and i don't have any intention to add to the confusion or anything other than trying to understand.

Cheers........JJ

    

[Poppy7402]

I think what they are trying to demonstrate with their study is changes in the retinal nerve fibres over time.  You might start out okay but another six months down the track there be evidence of thinning of retinal nerve fibres??

Anyway, have been and had mine done, it came back normal.

With regards to this gluten ataxia thing, it's well worth anyone in limboland exploring it as an option, particularly those who look like a primary progressive MS.  With GA there are no relapses or remissions until you get rid of the gluten.    Untreated, O bands and a high IgG rate have also been known to occur, as have spinal lesions.  It then becomes even more difficult to differentiate it from MS.  

There's plenty of info on the internet about it, but you have to do a fair bit of digging around.

Hope this helps someone.

Cheers

Poppy

[Corriel]

I had an OCT last fall when my vision loss presented (before my RRMS DX). I was told it was fine so I am very interested in their findings.

Thanks for sharing!

[Sailorsong]

My question about this is! What about those of us that haven't had their vision effected? Will doctors start saying that we don't have MS if an OCT comes back as normal? Just look at how many people are being told they don't have MS because they have no O bands.

Dennis

[Corriel]

I had an OCT done last year for my vision loss (pre-MS DX) and it showed everything was fine so I am intrigued about their findings.

[Poppy7402]

Lulu, Kyle & JJ

Interestingly, I don't have Celiac disease as all my bloods for this were negative.  This is what made tracking down the GA so difficult.

Gluten ataxics seem to be much more sensitive to trace amounts of gluten than Celiacs.  I've now found I can't eat things from Cafe's that are declared gluten free, if they weren't prepared in a gluten free kitchen.  The next day I'm literally a drunk and the pain is terrible.

Gluten ataxia is quite a different beast to 'ataxia' in general because in addition to the ataxia symptoms, it also presents with some or all of the symptoms of MS.  

Although some people have cerebellar atrophy, others have the bright white spots on MRI that look like MS lesions, but they aren't in the classical MS places.  The latter is me at this stage.

This is quite a good article for a quick run down of the GA symptoms.
http://celiacdisease.about.com/od/GlutenAtaxia/a/Gluten-Ataxia-Symptoms.htm

Interestingly, in one article I found over the weekend the researchers are saying that "due to the antigenic similarities between wheat antigens and human tissue, both CD and non celiac gluten sensitivity can result in many autoimmune conditions, including ....... gluten ataxia and multiple sclerosis"
http://www.hindawi.com/crim/immunology/2013/248482/


I can't find references to prove their last statement but it's food for thought at least.  

In my case, I've proved I have gluten ataxia but there are also a few things that don't fit this picture which is why it looks like it could be GA and MS. So, back to limbo and waiting for now.  

Cheers


Poppy

[supermum_ms]

I've actually been aware of OCT being mentioned as an alternate visual MS test for a few years, late 2010 is when i started collecting relevant visual information, so if you look your probably going to find quite a few articles by now. For me personally, years before my vision went double, an OCT picked up a slight thinning of the right (off the top of my head) optic nerve but i still had 20/20 vision.

I'd been having odd periods of blurred vision for probably a decade by then, never had anything show up but when I mentioned the increasing light sensitivity, the optometrist (sp) did the OCT. It was the first visual test showing an abnormal finding, though what it meant was the big question, and even though i was in my late 30's the optometrist thought it might be very early signs of glaucoma.

By 08 i started also having occasional periods of double vision, not often though but with my big bang in 09, my vision was never normal there after. Today I still don't have signs of glaucoma but do have diplopia (double) 24/7, nystagmus and a pale optic disc in that same eye, hmmm i no longer have 20/20 vision too. So it's not hard to speculate, that the OCT could of found evidence years before MS even got thought of with me.  

"Ataxia describes a lack of muscle coordination during voluntary movements, such as walking or picking up objects. A sign of an underlying condition, ataxia can affect your movements, your speech, your eye movements and your ability to swallow. "

No wonder i'm thinking some of my deep white matter lesions would have to be in the cerebellar...........walk like a string puppet [tick], stutter and slurr [tick], lol throw my coffee and poke people in the eye [tick], nystagmus - read hieroglyphics, faces have extra eyes, mouths etc [tick] and I even sometimes can't swallow and weirdly loudly and repetitively gasp in air for no reason at all. err that might not be related though what its related to i haven't a clue :D

Curiosity, I thought celiac was one of the autoimmune MS mimics, neurological issues and other sx's are very similar to MS, so if you've now been dx with gluten ataxia, has that put your MS dx in question or is it as well as MS you have gluten ataxia?  

Cheers...........JJ


        

[kwarendorf]

"Unlike nerve cells in the rest of the brain which are covered with protective myelin, the nerve cells in the retina are bare with no myelin coat.

Experts suspect that this means the nerves here will show the earliest signs of MS damage."

This causes me to doubt all the lernin' I has done about MS. In my lesion encrusted brain, in MS it is the myelin that gets attacked and subsequent nerve damage is collateral damage. This seems to suggest that the nerves themselves, at least those associated with the retina are effected directly.

From this trial it seems as though OCT may serve to evaluate the current state of peoples' MS. I wonder what the data would look like if it were compared to non-MS folk. Maybe it would provide some "smoking gun" diagnostic help?

Kyle

[Lulu54]

Wow! to both of these.  The OCT scan is very interesting and I wonder when they will be finished with their trial studies? That is a relatively simple test to complete from what I just read. Please let us know how it goes and what they find.

Now, about the GA - I had to check to make sure I understood it - you have a gluten intolerance, aka Celiac Disease, right?  The ataxia part had me stumped and for anyone else reading, this is what Mayo Clinic has to say about ataxia

"Ataxia describes a lack of muscle coordination during voluntary movements, such as walking or picking up objects. A sign of an underlying condition, ataxia can affect your movements, your speech, your eye movements and your ability to swallow.

Persistent ataxia usually results from damage to your cerebellum — the part of your brain that controls muscle coordination. Many conditions may cause ataxia, including alcohol abuse, stroke, tumor, cerebral palsy and multiple sclerosis. It's also possible to inherit a defective gene that may cause one of many ataxia variants.

Treatment for ataxia depends on the underlying cause"

http://www.mayoclinic.com/health/ataxia/DS00910