Hi!
This is my first post, but I saw your posting and really wanted to respond before I did anything else. :-)
I'm a sufferer from gluten ataxia as well, although I am not under the care of a neurologist. However, I found out something about gluten ataxia that might be of use to you. I also have Celiac Disease; it's only been a little over 2 years GF for me, now. I had vertigo, headaches, mental confusion and memory loss, and other issues that I don't know the technical terms for honestly (part of that issue of no neurologist, I guess!). Just added a level of clumsiness and some nerve issues that ended up with frequent injuries and more pain, is all.
Going gluten free didn't get rid of all my symptoms, either, until I found out something that actually DID. So, here's what I learned, in case it might apply to your situation.
(sorry if any of this is stuff you already know!) First, gluten ataxia can be one of two things. It can be ataxia that was caused by nutritional deficiencies from the celiac disease, or it can be a result of, they think, antibodies that directly attack the nervous system in response to gluten ingestion. The most recent studies are classifying these as two different things entirely, although both can occur in celiacs. However, some people are showing up with the latter gluten ataxia and do not have celiac disease or any gut damage at all.
The reason this matters is this: gluten free processed food, which has a small concentration of gluten allowed in it, is made to be safe for those with Celiac Disease. The amount of gluten allowed in this food is considered safe for most celiacs, as it's usually below their 'gluten threshold,' when they would start reacting. However, there have been no studies whatsoever on what the safe gluten threshold is for those with gluten ataxia.
I couldn't find any studies when I was looking, so I even contacted a couple of the main celiac disease research centers in the USA (the one in Maryland and the one in Chicago). I was told by both places that they don't know of any research done on this, either. Which means that the gluten free food that is keeping us safe as celiacs may not serve the same purpose for us as those with ataxia on top of celiac disease...so, for, uh...Ataxiacs, I guess. ^_^
I found a few posts on some of the major celiac disease forums from those with gluten ataxia who were able to significantly reduce their ataxia symptoms, or eliminate them entirely, only when they went on a sort of super-gluten-free diet. Many of them had to drop all their processed gluten free foods, drop the majority or all grains (these tend to have higher levels of low ppm gluten cc). Instead they eat veggies, fruits, whole meats, and carefully vet their beans/seeds/nuts/dried fruit to make sure wheat wasn't processed in the same facility (because the companies aren't legally required to give that warning). Some definitely had permanent damage that never healed. Some didn't. And some even had healing that was completely unexpected, although I imagine that is rarer.
This super-GF diet is what I ended up doing, even switching to vetted produce from our farmer markets to avoid certain coatings and pesticides (some pest controls are sprayed onto wheat bran and sprinkled over the produce in the fields, for example). Since having done this, my ataxia symptoms are practically nonexistent. It took weeks for some, months for others, but I can't even express how improved my symptoms have become.
However, if I ever screw up and eat something that is supposed to be GF, like, say, a gluten free grain or sauce, even a piece of gluten cc'd produce? The symptoms come rushing back in, worse than they were before. Within a few minutes, my words start slurring, I can barely understand what people are saying around me or figure out how to speak without a great deal of thought, vertigo hits so badly I'm lucky if I stay in my seat upright. The worst symptoms last for hours, and then the vertigo and mental confusion take a few weeks to clear up, as long as I go back to my super-GF diet.
I don't know that this would apply to you, but I know that this information is not something that is easy to find. I was SO thankful someone mentioned it to me so early in my GF dieting that I feel the need to pass it on, you know? A lot of neurologists I've heard of have no idea that gluten free food is not completely gluten free, so they don't even think about it. A lot of GI docs look at our gut health and vitamin levels as celiacs and think that means we're doing great on the GF diet. They don't think about the fact this may not be a good indication of if we're gluten free enough for our ataxia.
For some extra support for gluten ataxia specifically, there's a little yahoo group that came about a few months ago for those who have celiac disease and neurological issues. They have had some good links to research in this area before, although they are not an extremely active group: http://health.groups.yahoo.com/group/CeliacBrains/
There's also a gluten free forum for those who have to eat gluten free but need a more-GF-than-normal diet, which has been helpful for me to find food that I could eat without having my symptoms relapse: http://www.glutenzap.com/forum/index.php
And...okay, now I'll actually look at the real question, eh? For me, when I am having my symptoms, I have been trying to just take it easy. When I push myself, I always end up regretting it, feeling worse, having more problems, and usually falling down and hurting myself and feeling even worse than I did originally.
I can't do what I used to, always, but I have been trying to find other ways to, hmmm, keep from being isolated? I joined an on-line writing group, for example. I make more of an effort to invite maybe one or two people over to visit, where I'm in a safe environment and I can relax but still not feel like I'm becoming a shut-in, you know?
It's a bit more work, in some ways, but I've ended up feeling much better this way, emotionally. I also notice I'm doing better, less crabby and frustrated, with my hubby when I'm feeling better myself. Ha, maybe he was supportive of me doing it this way for more reasons than just support, LOL.
So sorry you're feeling isolated! I know Celiac Disease can add a little of that on in the first place, and with this as well, it's like a double whammy. *big virtual hug, 'cause it's easier to keep our balance that way* ;-D