gatita

Thanks Kamma for the warm thoughts. Unfortunately, Dr. H said my brother's MRI did not appear typical for gluten ataxia, although he stressed that MRIs are not definitive. My brother's neuro has him back on gluten after several months gluten-free, because she wants to do a celiac endoscopy in a couple of months. I don't see the point since he never...

Just posting an update here about my bro and thanks again to all who responded. I sure hope you all have found some relief! The bad news is my brother's condition is much worse. He is wheelchair-bound and also suffers severe "rubral" tremors (full body tremors pretty much anytime he reaches for something.) The tremors are worse than the ataxia! His doctor...

Thanks for all the tips! I saw Green's at my natural foods store but it was like $7a pint... I've tried New Planet and loved it. Omission was also super good. I was afraid to try it but it didn't bother me at all. I thought I was super sensitive, but it says less than 20 ppm. But if I can find New Planet, I'll stick to that because it was like a good...

I am brand new to the whole gluten-free beer thing, since I prefer wine. But the heat wave here in Cali has me wanting to try beer again. I used to like India Pale Ales and ambers, and brands like Gordon Biersch or Sam Adams. My local Safeway has two brands: Omission (this one scares me because it's made from barley with the gluten 'removed') and Redbridge...

Double Amen! So here's the update. Thank goodness our info was wrong about the CT scan -- it was negative. Don't know if the receptionist said something wrong or my brother misunderstood her, but we thought it was something really serious. So that's the good news. My brother started a dialysis kind of thing this week. For ten days they filter all...

Thank you for this! I sure wish they could do the test now... My brother's getting some more news this afternoon, I will update soon. His neurologist said yesterday she was sure he's having an extreme autoimmune response... but now an abdominal CAT scan is showing something else. It's very scary.

I will and thanks.

Frieze -- Thanks, I will look into CoQ-10. Kamma, I will ask him what the MRI showed. All I know is they said "nothing definitive." I also read in PubMed that Transglutaminase 6 antibodies are a good blood test marker for GA, but I wonder if or how anyone ever gets tested for that? It doesn't sound like it's the same TTG that's part of routine celiac...

Just a quick update here... My brother still has no diagnosis as to the cause of his ataxia; they ran a full celiac blood panel and all was negative. He's getting a spinal tap today to rule out MS and some kind of cancer. It seems to be getting worse, he told me he had to crawl to the kitchen the other day. It breaks my heart. Any more info about...

Hey, welcome!

Oh honey, try not to worry too much. If it were me, I'd get him a quick note, email or phone message mentioning in a friendly way that you recall some strange bits of conversation and just want to clarify that you respect him and are grateful for his abilities. You can use the pretext of thanking him for conducting a safe procedure. Then he'll know but you...

Thank you so much for the helpful replies. I'll pass the info on to him. My bro has his MRI scheduled for this morning, so we'll see what they say. He's also requesting the celiac blood panel.

My brother who was just diagnosed with ataxia (cause still unknown) wanted me to ask this so he can have a sense of what he might expect if his ataxia is indeed caused by gluten. Of course he knows everyone is different, but he still would like to get a general sense of how long it took for any of you ataxia sufferers to respond to the gluten-free diet...

Dang, I did not know that such an occupation even existed! But welcome, by the way, although I am pretty much a newbie here too. I'd sure like to hear if others have experience good/bad with that type of therapy.... I feel a bit skeptical because it seems "It's in your head," is the most common thing some doctors say. Not ruling it out though, but like...

OK nowwww I get the Frank Burns thing... doh!