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Looking For Md Recommendations In Northern Nj, Nyc, Or Ct

granite

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granite Newbie
granite
Posted

I suspect that my husband (70 yrs.old) has gluten ataxia. His celiac panel blood tests for the past 2 years have been positive for DGA-IgG.   His symptoms are not gastrointestinal but mainly nuerological (i.e. mild forgetfullness, word-finding, confusion).   He had an episode after drinking a light beer or two that caused him to become numb in arms and legs to the point of falling, slurred speech, disorientation etc.....very scary experience.  Fortunately he was ok the next day. 

 

 Since then I have read a lot about celiac and gluten ataxia and believe that he suffers from the gluten ataxia form of celiac which I know is not very well understood by the medical community.

 

I would like to hear your opinions as to wether we should see a nuerologist instead of a gastroenterologist or both.

 

I would also appreciate your recommendations regarding doctors in northern NJ, NYC  or CT who may be experienced with gluten ataxia as well as celiac.  Please feel free to send me a private message.

 

Thank you all so much for your help!

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kareng Grand Master
kareng
Posted

I suspect that my husband (70 yrs.old) has gluten ataxia. His celiac panel blood tests for the past 2 years have been positive for DGA-IgG.   His symptoms are not gastrointestinal but mainly nuerological (i.e. mild forgetfullness, word-finding, confusion).   He had an episode after drinking a light beer or two that caused him to become numb in arms and legs to the point of falling, slurred speech, disorientation etc.....very scary experience.  Fortunately he was ok the next day. 

 

 Since then I have read a lot about celiac and gluten ataxia and believe that he suffers from the gluten ataxia form of celiac which I know is not very well understood by the medical community.

 

I would like to hear your opinions as to wether we should see a nuerologist instead of a gastroenterologist or both.

 

I would also appreciate your recommendations regarding doctors in northern NJ, NYC  or CT who may be experienced with gluten ataxia as well as celiac.  Please feel free to send me a private message.

 

Thank you all so much for your help!

 

 

If his Celiac tests are positive, why is he still consuming gluten?  May he should try to eat gluten free and get a negative test and see how he feels?  If this is caused by gluten, perhaps he can heal at least some of the damage.

 

However... I hope you took him in immediately to an emergency room to make sure he didn't have a stroke.

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      Thanks, I’m still dealing with the pain and tingling and itching and feeling like bugs or something crawling around on my face and scalp. It’s been a miserable experience. I saw my eye doc last week, the eye itself was okay, so they didn’t do anything. I did take a 7 day course of an antiviral. I’m hoping for a turnaround soon! My life is full of stress but I have been on / off the gluten free diet for the last year , after being talked into going back on gluten to have a biopsy, that looked okay. But I do have positive antibody levels that have been responsive  to a gluten free diet. I can’t help but wonder if the last year has caused all this. 
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