Jen,

Your symptoms absolutely sound like they could be caused by gluten sensitivity and/or B12 deficiency, and based on your improvement I think you've stumbled upon an answer for yourself. B12 deficiency is not uncommon in celiac disease/ gluten sensitive patients... so, it may be both things contributing to your symptoms.

I personally had many symptoms associated with a B12 deficiency, including the rocking/swaying vertigo/ataxia, that responded remarkably to B12 supplementation. My daughter had symptoms of what I believe to be early gluten ataxia, along with GI symptoms, skin symptoms, and more... that responded remarkably to a gluten free diet.

The testing is discussed thoroughly in the link I've left below. It is important to be eating gluten for at least six weeks prior to any testing for celiac disease / gluten sensitivity. If you have been off of gluten for even a couple of weeks, the blood tests may not be accurate without doing a gluten challenge of at least six weeks.

It is also important to note that you can have gluten sensitivity/gluten ataxia WITHOUT having celiac disease. This means... even if you test negative for the main celiac antibody tests (anti-tTG, anti-endomysial)... gluten may still be causing many problems.

Most doctors have dropped the antigliadin antibody tests because newer tests are more specific to celiac disease, but the antigliadin antibody tests may be the only positive test result in those with gluten sensitivity that manifests as neurological disease. SO... if you decide to do a gluten challenge and the blood testing... just be sure that they include the antigliadin antibodies in the panel of tests.

You could also consider doing a stool test through Enterolab. Enterolab diagnoses gluten sensitity, but cannot diagnose celiac disease. The antibodies remain in the stool much longer than they remain in the blood, so these tests are accurate even 6-12 months after removing gluten from the diet. But, because this is not a mainstream accepted test, most doctors do not put much weight on the results. On the other hand, you will find many patients who went gluten free based on the results of the stool test... who are very happy campers.

You have another choice, and that is, listen to your body and do what you've already discovered is helping. You don't need a doctor's prescription to make dietary changes. If you attend any celiac support group, you will find many are self diagnosed. Many people stumble upon it by doing an elimination diet, just as you did.

I generally encourage people to start with the blood tests because I think a solid diagnosis is worthing having if you can get it. But, because blood tests are not perfect (some studies show 20% of those with celiac disease are seronegative) and because you can have gluten sensitivity without testing positive for celiac disease.... I believe in a dietary trial regardless of the results. When someone, like you, has a long history of symptoms, and discover for themselves that the symptoms improve on a gluten free diet...well, then that might be all the proof you need. I'm not sure a gluten challenge is necessary in that case. But, that is for you and your doctors to decide.

There are tests available for diagnosing B12 deficiency, too, but if you've been supplementing with B12 they won't be accurate either. B12 levels come up fast, although repairs can take months to years. Because B12 is stored in the liver, it can take a long time for the levels to drop back down after stopping supplementation. At this point, I'd stick with the supplements because you seem to benefit from B12, and keep your B12 level in upper range. B12 is safe, and medical literature supports using it in patients with symptoms of B12 deficiency even when the blood tests are inconclusive. Most people who need it, need it for life. The fact that your symptoms improved while taking it, and returned when you stopped... well, that probably says it all.

Here is some information that might be of interest.

Diagnostic Testing
Gluten Ataxia
Antigliadin Antibodies
Vitamin B12 Deficiency
Symptoms of B12 deficiency

Dr. Hadjivassiliou is the authority on gluten sensitivity and neurological disease, especially gluten ataxia. He has consulted with the doctors of several people I've known from the BrainTalk neurology forums. I believe there may be additional tests he'd suggest, as there are other antibodies that may be associated with gluten ataxia. I think if you want to pursue diagnostics for gluten ataxia you should try to find a neurologist who would be willing to contact Dr. H, or do further research on his own. Gluten ataxia is a relatively new discovery, and not many neurologists know a lot about it.

Here is a compilation of his papers~
Dr. Marios Hadjivassiliou


Cara