Doctor Confirmed I Need To Be Gluten Free - But Still Thinks I Need An Mri

[lesliev523]

I went to a new doctor, and she confirmed that regardless of the fact that I had a negative blood test, that I need to be gluten free. And she completely understands that I don't want any more testing if I have to go back to gluten.

She still wants me get an MRI of my brain to rule out MS. I still have a lot of weakness in my hands, and the neuropathy is still there. I have only been STRICT in my gluten-free diet for a couple weeks though.

I am wondering if I should hold off on the MRI to see if my hands start working better, or if I should just go for it.

Does anyone have experience with the neuropathy symptoms? When I might see it improve?

[Cara in Boston]

I had an MRI for MS about 2 years before I was diagnosed with celiac.

My symptoms were dizzy spells and loss of balance. About a year after that, the symptoms were numbness/tingly feeling in my fingers and toes, and briefly, pain in my hands and wrists and a lack of strength in my hands (couldn't open a jar or turn the shower knob.)

Anyway, within days/weeks of being gluten free, my other symptoms went away 100% (GI symptoms, fatigue, brain fog, etc.) It took much longer for the neuro symptoms to go away and I still get the numbness a year later. Not as often, but it did not completely go away. The other stuff (pain, dizzy spells) is all gone.

I would get the test - mostly so you don't spend time and energy worrying about it.

Cara

[lesliev523]

I had an MRI for MS about 2 years before I was diagnosed with celiac.

My symptoms were dizzy spells and loss of balance. About a year after that, the symptoms were numbness/tingly feeling in my fingers and toes, and briefly, pain in my hands and wrists and a lack of strength in my hands (couldn't open a jar or turn the shower knob.)

Anyway, within days/weeks of being gluten free, my other symptoms went away 100% (GI symptoms, fatigue, brain fog, etc.) It took much longer for the neuro symptoms to go away and I still get the numbness a year later. Not as often, but it did not completely go away. The other stuff (pain, dizzy spells) is all gone.

I would get the test - mostly so you don't spend time and energy worrying about it.

Cara

Thank you! Yes, I had told her of a few day episode that I had where I kept tripping over my own feet.

I have very little strength in my hands and loss of find motor skills. So we will go in for the test at least.

My doc does think it is all gluten related, but wants to be sure. I guess I will go with the MRI.

Thanks!

[Takala]

If you have insurance that will cover this, go for it. Just be absolutely sure you get a copy of the test results and keep it.

It can provide proof that you have celiac damage if they find "bright spots" or brain lesions. These spots will look different than MS lesions on the MRI. This is how I self diagnosed after being jerked around for several years, by different insurance plans and doctor's groups. Ironically, the doctor ( aka "neurologist from he((™ ") who finally condescended to do the test realized she now had a credibility problem with me once the results were sitting there as plain as could be, she had also ordered a scan of my cervical spine which also showed previous damage, and this meant that her IGNORING every thing I had told her about my past conditions/diagnosises was not exactly ethical. Because of cancelled appointments (by her office!) and refusal to give test results, I had to get them in person, and then demand a follow up appt where this fruitcake then pretended that everything was normal, insisted that gluten intolerance and gluten in the diet has nothing to do with brain damage, and said I had no reason for any of my symptoms. I guess her PubMed was broken and she got lost in the innertubals.

Warning: some of the "experts" who study this ataxia/neurological gluten damage phenom are pessimistic as to if recovery is possible. Recovery IS possible, but it takes time. Just stick to the gluten free diet (strictly) and be patient.

A recent discussion thread where I and other people put some links: