I still feel like this! Am I the only one?
I’ve always been an outgoing person and I was looked upto because I was very good at sports. This illness body change has really caught me unprepared even though I’ve had it for many years. From what I read here I’m not alone.
Hello community, this is my first post. My father has ataxia, but the doctors here in Greece dont know what kind, after 2 years of examinations the doctors found… nothing wrong! well i wouldnt let it go so after a lot of search i came upon the term ‘‘gluten ataxia’’, my father has 100% the symptoms… what bothers me most at this point is where we can have blood tests for anti-tTG2 and anti-tTG6 i called everywhere in greece they dont even know about them… i dont know if it is the right post to ask… but do you have any idea where we can do these tests? he is already in gluten free diet and after 2 weeks he has control of his hands again…
“Ataxia” is a symptoms which can be caused by different illnesses. It may be 'Hereditary" or “Acquired”. The term “Gluten Ataxia” is used, when antibody to Gluten also damages your cerebellum, thus causing ataxia. The test for Gluten Ataxia " anti-transglutaminase-6 " was written up extensively in Sheffield, UK by Dr.Hadjivassiliou. http://theglutensummit.com/team/marios-hadjivassiliou/ .This test is done only in few centers in the USA, since the physicians here, has not completely embraced the reality of “Gluten Ataxia”. But if you find a place where they do anti-TG6 test, your father has to be back on Gluten containing diet for at least 2 weeks before the test. Did he have any genetic testing to rule out “hereditary” form of Ataxia?
thank you @Shoaib. I have already contacted the institute in Sheffield, they send me a lot of information. At the moment i am waiting response from them on where we can do the tests in Europe! On a leaflet they sent me it says that the antibodies take up to 6 months on gluten free diet to leave the body so the tests will detect them… the biocy needs the patient not to be on gluten free diet… ofcourse they will quide me i hope if he needs to start gluten again… but i dont think he will he feels much much better only after 2 weeks! he has done all the tests bloods available in greece. it is not "hereditary’’ form
Just my 2 cents!
Bear at the NAF site gave the proper test information to detect Gluten Ataxia. As I remember, the standard Gluten Sensitivity test was not the proper test. I don’t know much about it but all I know is that information is long gone and NAF doesn’t have those old forum threads anymore. Perhaps you can find out more at the Ataxia site on Facebook.
My recommendation is to continue doing a Gluten-free diet since it has already shown some improvement. Unless those Gluten sensitivity tests are the proper ones why waste the money. Nevertheless, I wish you the best of luck.
Yes it is possible to be sensitive to gluten and test negative for celiac. I would recommend seeing a functional medicine provider–they are going to look for these types of things. You can find one in your area here:
You are wise to be guided by information given by Sheffield. Prof Marios Hadjivassiliou is a world authority on Gluten Ataxia Strict adherence to a Gluten Free diet is essential for anyone diagnosed with this particular type of ataxia. Gluten is sometimes detected in medications, and toiletries, so particular care needs to be taken to prevent flare ups of symptoms. I hope you get good news re availability of local testing. xB
I soo get that. Yesterday I was binge watching UK reality TV (I’m in the US). There was this 700 or so lb lady talking about how she would hear kids playing outside her window and all she wanted was to get up and run around with them-live a normal life.
I had an unusually unkind, knee jerk thought. I said to myself, “What a piece of sh—. She did that to herself, and can recover, and yet she doesn’t have the decency to try.”
I agree with you in a lot of ways, since I would love to do the same, and nothing I do let’s that happen. On the other hand, losing ten pounds is really hard. Imagine trying to lose five hundred. She has a disease, too. It is more controllable than outs, but maybe not for her.
Marjorie, I don’t think you’re alone confessing to such thoughts, it’s human nature. Just this morning, after I came out from a Hospital appointment, my husband was remarking on how some people abuse their bodies with drugs and a poor diet, and yet often aren’t a lot worse off for it. I hold the gene pool responsible 
xB
I just wanted to add to this thread that I feel that my Nystagmus is right up there and actually may be second.
You may be interested to know that someone was prescribed Carbamazaphine for Nystagmus, and got considerable relief. Even though it’s primarily prescribed for Epilepsy. I googled and found it can be prescribed for Nystagmus 
xB
Thanks for the reply and information. My Nystagmus is lateral so I can still drive. However, if strongly affects my depth perception along with bright lights and honestly, I’m afraid to take any medication for it because I don’t know how it will affect me.
It never hurts to get potentially useful information 
My Nystagmus is downbeat, I don’t take any medication and I can still drive, although never at night. Being on foot in the dark is bad enough, without adding speed, and headlights 
It would be extremely illadvised I really miss having good perception of depth, perfect spatial awareness and manual dexterity xB
I have been Diagnosed with SCA6. It is a milder form of ataxia than many of you have, and I consider myself very blessed. I do have trouble walking, being off balance in general, and with slurred speech. I have to walk with a cane The thing that bothers me most , besides being accused of drinking, is when someone says “You only have a mild case.” Walk in my head for one day then tell me about my mild case.
I too have sca 6. My mother had it also. I take ashwaganda, coq10 and I think it helps some. The nystagmus is a problem along with gait and balance. I have been researching and talking to Drs about stem cell therapies. I am considering it. They are having some improvements with it.
Sorry to do this but I need to vent some. Yesterday, I had lunch with two of my golfing friends. Yes, I can still play AT golf but nothing like before Ataxia. This is probably because of all my exercise but it also has to do with my athletic ability. Nevertheless, I don’t keep score anymore because it doesn’t mean that much to me anymore. I know when I’m playing decently. If I shoot a good score, I’m probably not likely to repeat it.
Anyway, I don’t play when the temperature goes below 60 degrees F. When my legs get chilled, they get somewhat stiff and palsied and I lose a lot of the athletic coordination. I was supposed to play tomorrow [Sunday] but the temperature high is only supposed to reach 59 degrees F. I tried explaining to them about when my legs get chilled but they kinda said “sure.”
Besides having Ataxia as being the worst, I think that healthy folks not understanding ranks right up there as well with me.
