I've been having some problems like this after going gluten-free. It was driving me insane, I had plateaued and was still feeling terrible while my anemia was still there a bit but otherwise it seemed I was recovering. I then read about gluten ataxia in a gluten-free magazine (Living Without I believe) and realized it described me to a T. Among the other usual ataxia symptoms I would also get stabby sudden headaches (which I noticed were markedly different from the migraines I get).
I have in the past 2-3 weeks gone completely processed food free. Nothing that is labelled gluten-free I use with two exceptions - GIG (Gluten Intolerance Group) Certified spices (from Spicely.com) and a few things from Nuts.com (taking care not to eat too much). I go with GIG certified things because they are tested down to 10PPM and they are actually active about checking. I know in Canada there were standards for the word gluten-free before the US (that new law, right?) but its not as if they have anyone checking, its only after complaints that items are recalled. I'm not sure how it is in the US (or elsewhere) but I know here if something is naturally gluten-free, they can label it gluten-free no matter what crazy stuff it touches on the way to you.
I must say I've been doing a lot better and saw a really big improvement almost immediately. I was a little sceptical at first that trace amounts could be doing anything but I ran out of almond flour from nuts.com and picked up one labelled gluten-free at the store near me and after making pancakes with it I felt terrible all day and had a lot of neuro symptoms.
I have an MRI scheduled soon and I can update you if I have any abnormalities. I finally got an appointment to get one; I started having seizures around January, which only happened a few times, thankfully.
Rereading your questions I have a bit more to add.
One of the theories is that because the cells in your cerebellum are similar to those of your intestines, the body decides to attack those as well as the intestines when the immune system is activated by gluten.
The general consensus is that if you are super diligent then the brain can slowly repair itself but it is slow and there is a point of diminishing to no return (middle age+ and someone still eating gluten). Its incredibly important for someone with ataxia to not slip up as it can set you back quite awhile. This is why I felt so frustrated. I would read about people being glutened and a lot of the times it would be along the lines of, "Whelp, I pooped myself for a week but I'm starting to be on the mend now." (not trying to diminish anyone's suffering, I just couldn't relate to many people's symptoms which left me feeling a little lost) where as it would take a month or more for me to feel anywhere near normal. Anyways, I'm feeling a lot better now and I'm super thankful to have this forum, I doubt I would have found the information I needed to get better without it. Its also great to vent to other Celiacs/NCGS.
Skullgrl, thanks for the info. I am in the middle of reading the article. I love personal stories as it helps me visualize symptoms. A list of symptoms can really bring out the hypochondriac in me. Food bothers me neurologically as well - diagnosed celiac and dairy/egg/soy issues - so I shouldn't be too surprised if my son is too much like me. Who knows. He may have experienced stuff and I never knew since he was diagnosed so young and is only now just starting to verbalize. Even now it's not much.
"My head hurts."
"I need to lie down."
"I feel weird."
"I feel off."
That's about it. His GI doc mentioned calcium deposits and seizure activity. I suppose calcium deposits are a possibility as well (due to celiac and malabsorption). When he was 6 he had a bone scan done and was found to have low calcium. He's so tall though that he really surprised his doctor. He still is tall and is over 95% on the growth chart.
No one has mentioned gluten ataxia to me. I found that on my own and so did my sister-in-law nurse. I just wonder if lab tests can be normal but still have reaction at lower levels? Is that even possible? Does that make sense? Aside from the first 6 months when he was accidentally consuming gluten (thanks to rice milk) all his celiac related labs come back fine.
So, so frustrating, but hopefully we'll get to the bottom of this sooner rather than later. I do have a feeling we're going to have to make our diet stricter for a bit to see if it helps.
Thanks so much,