Are Certain Tests More Accurate For Those With Neurological Symptoms?

[greenbeanie]

For anyone diagnosed with celiac who had significant neurological problems, which of the blood tests came up positive for you? Are some tests better at testing the neurological manifestations of celiac than others? I've read conflicting information on this. Some sources say that the older anti-gliadin tests are actually better at detecting celiacs with neurological issues, while most other sources say that the older IgA and IgG tests are no longer recommended for anything. 

 

I finally see a GI doctor next Monday. My daughter was just confirmed with celiac through blood tests and biopsy, so I'm hoping the GI will agree to do an endoscopy on me on the basis of life-long symptoms and family history, even though my blood tests were negative (while gluten light). They only ran the tTG-IgA and DGP tests on me. Should I request the older IgA tests?

 

I have been in the ER three times in the past ten years for unexplained ataxia and other weird neurological symptoms. The first time I was low on potassium, and they gave me some in the ER and it helped with the immediate problem, but we never figured out the root cause. The second time I tested positive for anti-nuclear antibodies, but a follow-up MRI with a neurologist was normal and again they dismissed it as some weird idiopathic  problem. The third time I lost 10 pounds in one week without trying, was extremely dizzy and disoriented, had weird vision problems, and kept forgetting words. This time they admitted me to the hospital and ran all sorts of tests (but not celiac tests), but again they found no cause. For what it's worth, one of my daughter's main symptoms was neurological problems (reflex problems and twitching in her sleep without evidence of seizures, sensory integration disorder, and extremely frequent explosive tantrums). After just a week gluten-free, her neurological problems are hugely improved. Regardless of my own diagnosis, I will also go gluten-free as soon as testing is over. But I just hope the GI will take me seriously and do an endoscopy even though my blood tests were negative.

[Carolann444]

For anyone diagnosed with celiac who had significant neurological problems, which of the blood tests came up positive for you? Are some tests better at testing the neurological manifestations of celiac than others? I've read conflicting information on this. Some sources say that the older anti-gliadin tests are actually better at detecting celiacs with neurological issues, while most other sources say that the older IgA and IgG tests are no longer recommended for anything. 

 

I finally see a GI doctor next Monday. My daughter was just confirmed with celiac through blood tests and biopsy, so I'm hoping the GI will agree to do an endoscopy on me on the basis of life-long symptoms and family history, even though my blood tests were negative (while gluten light). They only ran the tTG-IgA and DGP tests on me. Should I request the older IgA tests?

 

I have been in the ER three times in the past ten years for unexplained ataxia and other weird neurological symptoms. The first time I was low on potassium, and they gave me some in the ER and it helped with the immediate problem, but we never figured out the root cause. The second time I tested positive for anti-nuclear antibodies, but a follow-up MRI with a neurologist was normal and again they dismissed it as some weird idiopathic  problem. The third time I lost 10 pounds in one week without trying, was extremely dizzy and disoriented, had weird vision problems, and kept forgetting words. This time they admitted me to the hospital and ran all sorts of tests (but not celiac tests), but again they found no cause. For what it's worth, one of my daughter's main symptoms was neurological problems (reflex problems and twitching in her sleep without evidence of seizures, sensory integration disorder, and extremely frequent explosive tantrums). After just a week gluten-free, her neurological problems are hugely improved. Regardless of my own diagnosis, I will also go gluten-free as soon as testing is over. But I just hope the GI will take me seriously and do an endoscopy even though my blood tests were negative.

I have those symptoms also, ataxia, double vision, dizzy, confused, can't think, drop things, etc.  I guess I should call my doctor and find out exactly what they tested.  But my allergist told me that both the antibodies were highly elevated and I tested positive in both areas.  So I guess I should find out what that means!  He diagnosed me as celiac and said there is no doubt.  I am gluten free now and the only time I have those neurological symptoms is usually 30 mins after I have eaten and I can track what went wrong and how I was accidently glutenized!

[greenbeanie]

It's good to hear that it got better after going gluten-free. I can't wait until all this testing is done so that I can stop eating gluten and start feeling better!

Does anyone who had neuro symptoms remember which tests on the celiac panel they were positive for?