Newbie here.Do i have GLUTEN ATAXIA?

[hayleyhappyface]

Hi there,

I am a 38 yr old recently diagnosed with hypothyroid after 22 yrs of being ill.I am on medication (early days)-so no improvements yet.My symtoms are many and varied and fill an intire sheet of A4 paper! they seem to affect my entire body-physical ,mental and emotional.The symtoms i have do seem to fit nicely into the desciptions of hormonal imbalance and so i dont doubt i have these at all BUT there are a cluster of very strange and disabling symptoms that i have had for all this time and have never found answers to.They appear to be unrelated to the hypo.I have been reading up about gluten ataxia and think i may have stumbled upon my answer.

These are my symtoms-

what i call- 'swimmy eyes'.My eyes feel like they are swaying around in my head.They feel sleepy and drowsey (My whole head feels drowsey too).I feel drunk, my eyes are 'fidgetty' and wobbly.When i turn my head my eyes feel like they are playing 'image catch-up' slow to refocus.If i focus on an image it appears to move and jitter around.It feels like the eye muscle is tired.I get blurred vision that comes and goes but is always there to one degree or another.I lose my balance easily- falling sideways into walls often.I have to concentrate to walk in a straight line.I'm clumsy too.Mentally my cognitive skills are terrible.I cant think straight, lose the thread of what i'm saying alot,slurr my words,forget everything,cant concentrate easily.I say words back to front aswell.....basically with all my hormone imbalances aswell ,i feel a total mess.

I am adressing lots of vit and min defeciences that i uncovered myself- 3 months in and still i feel no better.I am on T3 for my hypo (as t4 made me worse).I am on progesterone cream for severly low in that hormone.All of thesse are early days (the last 2 weeks) so i know i have to be patient but it's thses 'brain' symptoms that trouble me the most.I've had this for 22yrs, so i feel at the end of my tether.i must add that these symtoms are CONSTANT there is no break at all,ever.Also i have had a celiac test done by my G.p and that was negative.I also have very few digestive issues other than - wind and a bit of bloating (but then my tummy has been 'bloated' since giving birth a year ago! and the progesterone imbalance does'nt help).I was never bloated before though.....

Please,please if any of you lovely people out there have anything you think could help me i'd be so happy.

thank-you,

hayley X

[Lexy]

There is another entry on this Questions page from 6 May which mentions gluten ataxia, I think the member was called 'glutenhater'. Maybe you could connect with that person?

[Irene Administrator]

@Hayley - we do indeed have another query re gluten ataxia which you could have a look at. However I'm curious to know whether you have had a full blood screen and more importantly whether your B12 levels have been checked? A deficiency in this vitamin can, long term, causes various symptoms including being unsteady on your feets, pins+needles in hands/feet and balance problems e.g. walking into obvious items, misjudging door frames etc. Gluten ataxia is a condition that causes a myriad of symptoms but would be good to rule out simpler causes.

[hayleyhappyface in reply to Irene]

Hi Irene,

sorry i replied in the wrong box- could you plaese take a look on my question thread.Your help is very much appreciated.

[hayleyhappyface]

Hi Irene,

Thanks for your reply Yes, i have had the full blood screen -is there anything i should be looking for with ataxia?

Also all my vit and min levels are being corrected aswell (i'm 3 months in)- i was low accross the board in everything including b12 but that has alredy been tackeled (the doc gave me a course of jabs) and my level is now over 1000- but unfortunetly i feel no different...

Can i ask - is there a test that gives a more reliable result than the one the nhs use /or is there another test the nhs can do that may show 'markers' for celiac or gluten intolerance?

many thanks

[Eccentrica]

I get those symptoms when my B12 is out of kilter.......

I need to be well above 1000 to feel fine and have over the past year gone from 12 weekly to 6 weekly injections.

Might be worth a follow up if all you had were loading doses and now don't have any follow up??

E,x

[hayleyhappyface in reply to Eccentrica]

Thanks Eccentrica!

I was also taking Jarrows methyl b12's at 5000mcg but have run out now and no longer have the jabs either-but will re-stock on the methyl's i think.....

It's a bummer these brain symptoms -it would be so much easier if i just knew what they were down to? ...maybe it's a bit of everything as i have hypothyroid and other hormone imbalances, low blood sugar,low blood pressure -so they could all be causing it.BUT really it's the dizziness that's the worst.My next lead is inner ear disorders......oh god when does it all end eh! :/

XX

[Candlemas]

I see this was three years ago but still I feel compelled to reply. Hayley you may as well be writing about me. I have the exact same symptoms. If you are still around and reading this and you are still suffering I strongly suggest seeing a particular neurologist to test for gluten intolerance. I am not sure that we are allowed to say who so please pm me. He does a different test to the normal blood tests and has a special ataxia clinic ...gluten and hypothyroidism go together...stop taking gluten and you will feel like a different person.