Misdiagnosed as MSA?

[d.sig]

Hello.  Has anyone been told by a neurologist that they most likely have MSA-C?  Dr ordered a DatScan and even that came back ok.  The celiac panel (very basic one) came back and was told not celiacs, however have been mostly gluten free for 1 1/2 years. There have been numerous times of  gluten slip ups along the way and am usually more dizzy and balance/coordination gets worse for a bit.  I'm concerned my friend is going to slip into a negative mindset with the whole "we're not sure what it is or what's causing it so we're going to call it MSA-C" diagnosis and after reading all the symptoms and short course of the incurable  disease.  I was just curious if anyone else has encountered this. Thank you for any guidance!

[trents]

The thing that needs to happen is that you need to go off of the gluten-free diet for two or three weeks before having that Celiac testing done again. You may need to explain the circumstances to your care provider so they can justify a repeat of the blood work. But I would not assume anything at this point about what is causing these symptoms.

[Ennis-TX]

MSA looks quite serious, you might opt in for doing a gluten challenge if you can stand it and redoing the blood test. You have to eat gluten for 12 weeks daily for it show in testing. If you hardly eat any and been mostly gluten free...testing will not be reliable.
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Gluten Ataxia is something I and some others get with celiac disease. the damage can show up in a MRI in some if I recall. Gluten Ataxia can even be present in non celiacs according to some ataxia research I had seen in the past.

[d.sig]

Thank you both for your input!