I only know that I have ataxia because I stagger around. I am dependent on my rollater to get around, and I have fallen several times. I can't write anymore and sometimes I feel that my tongue is thick. My GP says ataxia is a symptom. The neurologist ran MRI's, sent me to ENT who ruled out ear problems. They ran several blood tests to rule out vitamin or mineral deficiencies. No cause was found. GP took two different blood tests and said I do Not have celiac disease. She has me now battling a C-Pap machine thinking sleep apnea is contributing to the problem. I might have sleep apnea, but it is definitely not causing the ataxia.
My question here is: How were those with Gluten Ataxia diagnosed as such? I feel GP is missing something with the celiac tests. I am trying to go gluten free, but not doing too well at it. If it will really help something I will be more dedicated to it. I've only had severe symptoms for about a year, and I can't tell that gluten makes anything worse. I have read that gluten free takes about 6 months to show any change. Since I have no celiac or other symptoms, I don't know right away if I get a little gluten. My daughter who is GF, has some severe reactions digestively when she accidentally gets some gluten in her system.
Good questions "granny".
It's not an easy diagnosis to get. Many doctors are not even familiar with gluten ataxia. I've been blessed to have doctors who understand and agree with the diagnosis. I gave many of them medical articles on research for this diagnosis. They want the facts.
It is very possible to be intolerant to gluten without having Celiac Disease. It's important to be 100% gluten free for it to be affective. This link is really helpful for doing it well.
granny, I suggest you arm yourself with lots of information as this will help you get an answer.
If you can go completely gluten free for about three months you should hopefully have some indication whether gluten is the problem. It can take up to a year of being gluten free for improvement to happen with neurological issues but if the issues have been present for longer than a year, they may not improve at all, you may just arrest progression of your disease.
I suggest you google Dr Rodney Ford. He's an NZ paediatrician and world renowned expert on gluten problems. He has written several books that are very worthwhile reading. They come as E-books and are quite cheap.
Google "Gluten sensitivity: from gut to brain by M Hadjivassiliou". This articles explains the mechanism of GA and talks about how the traditional Coeliac blood tests won't necessarily pick up GA.
Another option is to have a gluten blood test, if you haven't already done so. The IgG blood test should pick up if you have an intolerance to gluten, even if its not Coeliac, but get it done before you go completely gluten free as its much more reliable. US Biotek do testing for a whole range of foods - the panel I had done was for 92 different ones and I came back reactive to gluten and a couple of others that I didn't expect. I'd been off gluten for three months by the time I managed to get it done but it still showed an intolerance, just not as strongly as it might have had I still been eating gluten. Its not cheap (USD385 through Dr Ford) but I found it very worthwhile.
Be prepared for people to tell you that gluten ataxia doesn't exist and that there are no neurological issues caused by gluten. As MS presents quite similarly to gluten ataxia, also be prepared to be told (initially) that this is what you may have. Getting a diagnosis probably won't be an easy road for you, but persevere as I'm sure you'll get there in the end.
Best of luck.