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My Brother Has Ataxia!


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#1 gatita

 
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Posted 13 February 2013 - 12:46 AM

I am still in shock, but my older brother was just diagnosed with ataxia today.

He started having severe balance problems and dizziness around 3 weeks ago and spent yesterday in the ER. After a CT scan and blood test for who knows what, they're saying it's ataxia and referring him to a neurologist.

I am truly hoping it is gluten ataxia because at least that has a treatment. The alternative causes could be tumors, a stroke, MS or....? I mentioned gluten to him today and he said they never said anything about it to him, so I sent him the latest studies, including one saying everyone with unexplained ataxia should be tested for gluten sensitivity.

I am still reeling from this, the effect on my poor brother is devastating -- he can't walk straight, his vision is blurred and he has been vomiting non-stop. This morning he tried to take a walk and he fell. :( And they still may not get him in to see a neurologist by tomorrow!

It also all kind of blows me away because my GI this week said I do not have the celiac genes... but it sure seems like something is running in the family.

I am just hoping my bro will go gluten-free right away. I don't even know if he is supposed to stay on gluten for any testing, but given the seriousness of ataxia and how quickly his seems to be worsening, it seems to me he should go gluten-free immediately no matter what.

Does anyone have any thoughts or experience with this? I'm just scared for him... :(
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#2 mushroom

 
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Posted 13 February 2013 - 01:49 AM

That is very scary and frightening for you. I am so sorry he is going through this. I will certainly keep my fingers crossed for gluten ataxia, that's for sure. I think if I were he I would quit the gluten right now, to heck with any testing. It will be or it won't be when it comes to testing, but his health is what is important right now. I agree with you, immediately. If it is gluten he is extremely sensitive. Are they planning on doing an MRI? Normally if it is gluten it will show UBO's (Unidentified Bright Objects) on an MRI. ravenwoodglass is the one who has had this the worst, I believe. Maybe you could pm her - she hasn't been on much lately with her new job. ravenwood's genes were neither DQ2 nor DQ8.

I will keep you both in thoughts and prayers.
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#3 frieze

 
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Posted 13 February 2013 - 06:15 AM

That is very scary and frightening for you. I am so sorry he is going through this. I will certainly keep my fingers crossed for gluten ataxia, that's for sure. I think if I were he I would quit the gluten right now, to heck with any testing. It will be or it won't be when it comes to testing, but his health is what is important right now. I agree with you, immediately. If it is gluten he is extremely sensitive. Are they planning on doing an MRI? Normally if it is gluten it will show UBO's (Unidentified Bright Objects) on an MRI. ravenwoodglass is the one who has had this the worst, I believe. Maybe you could pm her - she hasn't been on much lately with her new job. ravenwood's genes were neither DQ2 nor DQ8.

I will keep you both in thoughts and prayers.

find out what genes you have, I think DQ1 is the more common with neuro issues...Raven is Dq9 and i can't remember the other...as far as your brother goes, i would wonder about Meniere's. Have they started him on prednisone?
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#4 ravenwoodglass

 
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Posted 13 February 2013 - 07:01 AM

Sorry to hear your brother is having such severe issues. There can be many causes of ataxia that are easily treated so try not to worry too much about this. It might be a good idea for your brother to also see an ear, nose and throat specialist considering how quickly this came on and the severity of it's presentation. While it could be gluten ataxia I don't think that usually has such a sudden occurance. Whatever is causing this I hope it clears up for him quickly. IMHO he is best off calling his GP or Internist and requesting a lab slip for a comple celiac panel before he goes gluten free. If you are diagnosed there should be no problem with the doctor ordering the test since it is advised that any 1st degree relatives be tested once one family member is diagnosed.
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Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#5 gatita

 
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Posted 13 February 2013 - 08:50 AM

Thank you all so much for the quick replies! My genes are DQ6.3 and DQ9, and I have read two studies linking DQ9 to celiac.

He has a neurology appointment and MRIs scheduled right away, so that should tell us more. He hasn't been prescribed anything yet, but I'm fairly sure (not positive) they ruled out Meniere's... I will ask him.

Raven, that is reassuring that there are other treatable causes too. I will remind him to request the celiac panel right away as you say since the doctors still suspect it in me. (I am not officially diagnosed with anything more that wheat allergy at this point, have an endo next week).

He is a starving musician and hasn't been to a doctor in years -- my nieces had to forcefully drag him to the ER!

Oh also, he did have a strange, year-long episode of Bell's Palsy a few years ago, I wonder if it's related.
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#6 Takala

 
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Posted 13 February 2013 - 01:16 PM

I'm glad he seems to have better insurance than I had at the time these symptoms really took off with me - trying to get taken seriously, and tested by specialists at the most common, big name HMO in the state of CA (the one with the catchy jingles on the radio ) was a complete nightmare. Even the Neurologist from Hellâ„¢ that I was stuck with in the next round of insurance strung me along for nearly a near before doing scans of brain and c- spine, then balked on admitting there was damage consistent with celiac/gluten intolerance, and told me I had nothing wrong with me that would cause any symptoms of ataxia- implying I was faking it. As if anyone would go to that amount of trouble to magically make the images show spinal stenosis,blown discs, and holes in my brain- they must be a sort of super- duper Cat scan hacker. :angry: And it was so brilliant I how I made my one eye lose ability to see the full range of color vision and cross all the time. <_<

I keep repeating this story so other people with the gluten- caused neurological damage causing ataxia, peripheral neuropathy, and vision loss don't give up and get blown off if they test negative for celiac by the classic blood test, or if get scoffed at if they are not thin and obviously wasting away from gut troubles. THIS IS A CONDITION WHICH CAN BE CONTROLLED and healing CAN take place with diet adherence.

I haven't done the genetic test and I won't, until we finally have something resembling universal health care coverage in this country. I don't want to give the idiots more fodder to tell me I don't have a "gluten problem," if it turned out I wasn't the carrier of the usual ones, and it's irrelevant anyway, as I am strict about diet adherence and don't need the motivation. I already have the motivation because if I slip up, I get symptoms that render my life dysfunctional, and I don't mean a bit of upset tummy.

Have your brother have the full celiac panel done, a.s.a.p. as others have said, but have them look at the brain if he can get a scan looking for damage for MS or whatnot. The "bright spots" of gluten damage brain lesions will look different. Insist he tell the neuro about his first degree relative with gluten intolerance. Do a google search of "Hadjivassiliou gluten ataxia" and print out some of the Pub Med research for the doctor. If and when the testing is done, and there is no resolution or explanation, or, better yet, there is one, then he can try a strict gluten free diet. MAKE SURE if he is given ANY MEDICATION for anything it is GLUTEN FREE. I have also had some big time weirdo reactions to common medications (acid blockers and large doses of ibuprofen taken together... holy moley :blink: ) that made the ataxia a lot worse. It was my old optician that clued me in that I should look at that stuff to see if not taking it made a difference. Sometimes you get the good advice from the unlikely sources.
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#7 gatita

 
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Posted 13 February 2013 - 05:02 PM

I'm glad he seems to have better insurance than I had at the time these symptoms really took off with me - trying to get taken seriously, and tested by specialists at the most common, big name HMO in the state of CA (the one with the catchy jingles on the radio ) was a complete nightmare. Even the Neurologist from Hellâ„¢ that I was stuck with in the next round of insurance strung me along for nearly a near before doing scans of brain and c- spine, then balked on admitting there was damage consistent with celiac/gluten intolerance, and told me I had nothing wrong with me that would cause any symptoms of ataxia- implying I was faking it. As if anyone would go to that amount of trouble to magically make the images show spinal stenosis,blown discs, and holes in my brain- they must be a sort of super- duper Cat scan hacker. :angry: And it was so brilliant I how I made my one eye lose ability to see the full range of color vision and cross all the time. <_<

I keep repeating this story so other people with the gluten- caused neurological damage causing ataxia, peripheral neuropathy, and vision loss don't give up and get blown off if they test negative for celiac by the classic blood test, or if get scoffed at if they are not thin and obviously wasting away from gut troubles. THIS IS A CONDITION WHICH CAN BE CONTROLLED and healing CAN take place with diet adherence.

I haven't done the genetic test and I won't, until we finally have something resembling universal health care coverage in this country. I don't want to give the idiots more fodder to tell me I don't have a "gluten problem," if it turned out I wasn't the carrier of the usual ones, and it's irrelevant anyway, as I am strict about diet adherence and don't need the motivation. I already have the motivation because if I slip up, I get symptoms that render my life dysfunctional, and I don't mean a bit of upset tummy.

Have your brother have the full celiac panel done, a.s.a.p. as others have said, but have them look at the brain if he can get a scan looking for damage for MS or whatnot. The "bright spots" of gluten damage brain lesions will look different. Insist he tell the neuro about his first degree relative with gluten intolerance. Do a google search of "Hadjivassiliou gluten ataxia" and print out some of the Pub Med research for the doctor. If and when the testing is done, and there is no resolution or explanation, or, better yet, there is one, then he can try a strict gluten free diet. MAKE SURE if he is given ANY MEDICATION for anything it is GLUTEN FREE. I have also had some big time weirdo reactions to common medications (acid blockers and large doses of ibuprofen taken together... holy moley :blink: ) that made the ataxia a lot worse. It was my old optician that clued me in that I should look at that stuff to see if not taking it made a difference. Sometimes you get the good advice from the unlikely sources.


Oh wow, thanks so much for sharing your experience!! It means a lot to me. I am going to tell my niece everything you said so she can share it with him. He can't read emails anymore because his vision is blurred, so she is sort of taking over his treatment.

Unfortunately he has NO insurance, but we're not letting that stop us at this point.

And my niece says he doesn't believe he has gluten ataxia or that it exists. :( But we aren't giving up -- we're sending him the PubMed reports so he can know it's real. And of course his could be caused by something else, so we don't want to assume this is the only answer.

I realize this is all just starting to sink in for him, so I'm trying not to push him -- yet.
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#8 gatita

 
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Posted 13 February 2013 - 06:04 PM

Update -- just talked to him and he promised to get the celiac panel done asap! :)
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#9 ravenwoodglass

 
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Posted 14 February 2013 - 05:43 AM

Update -- just talked to him and he promised to get the celiac panel done asap! :)


Glad to hear that. Just be sure to stress to him that even if the tests come back negative it doesn't mean it isn't gluten ataxia. Encourage him to try the diet after all celiac related testing is done no matter what the results if tests for other stuff comes back negative. Also since the lesions of celiac ataxia resemble the lesions of MS make sure if they find lesions they don't give a MS diagnosis if they haven't done a spinal tap to make sure that is what it is.
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Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#10 gatita

 
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Posted 14 February 2013 - 07:59 AM

Also since the lesions of celiac ataxia resemble the lesions of MS make sure if they find lesions they don't give a MS diagnosis if they haven't done a spinal tap to make sure that is what it is.


Wow, I didn't know that!

My niece and I will remind him the tests can often show false negatives. Last night he was interested in learning more about the diet, so I started to break it down to him and I think he's going to at least try it. :)
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