Very interesting Anti Gad has some long name and this guy, Prof H. of Sheffiled also wrote about it. I found it on the Internet. I will check this out and show it to my dr,
gfgill said:
Neta, what is anti GAD?
The test which was shown in The Ataxian was from results published in the Journal Neurology by Prof Marios Hadjivassilliou in Sheffield - you might find that paper? The article in The Ataxian reads (part of it): 'patients with cerebellar ataxia of unknown cause are currently tested for gluten sensitivity using a blood test for antibodies called gliadins. If they test positive they are given a diagnosis of gluten ataxia and are recommended to go on a gluten free diat. Diagnosis is very important as this is one of the few treatable ataxias if diagnosed early enough. In this new study, the team in Sheffield and collaborators in Cardiff hypotehsisted that a different antibody against a brain enzyme called transglutaminase 6 (TG6) couldd be used as a diagnostic test for gluten ataxia. they found that a high roportion of those diagnosed with gluten ataxia in the traditional way also tested positive for TG6 antibodies (and as expected, the healthy controls tested negatively). In addition, a Finnish group showed that after one year on a gluten free diet the TG6 antibodies decreased in 11 out of 12 patients. These results show that the TG6 antibody test is a sensitive test for diagnosing gluten ataxia.
The researchers in Sheffield then also tested 65 patietns with cerebellar ataxia of unknown cause who were negative for the gliadin antibodies and thus would have had a negative diagnosis for gluten ataxia. They found that 21 (ie 32%) of these were positive for TG6. This suggests that the TG6 test might be more sensitive than the anti gliadin antibody test, and that the prevalence of people with gluten ataxia is higher than previously thought'.
Maybe the full article would be available on the Ataxia UK website or someone who recieves this by email could maybe forward it. Food for thought?
Yes, I am significantly better. I am grateful!! I gained a LOT (80 lbs) before my diagnosis. Some people loose weight with gluten intolerance. I have since then lost the weight. Not only do we (husband and I) eat 100% Gluten Free but we also eat vegan now too. THAT's a challenge, but the results have been nothing short of amazing.
I do live in Colorado. It's a gorgeous place. I grew up in the midwest (Iowa) and can really appreciate the beauty here. It's home now.
neta said:
Dear Julie,
Thanks for responding. I tested normal for gluten and never had any gut issues. But who knows maybe the tests are/were wrong.
The blood tests only showed a certain abnormality in various antibodies, which pointed to an auto-immune problem. I do have gas but I chalked that up to the anti-depressant that I am taking. I wonder what are the other "signs" of gluten ataxia? I have sudden weight gain. Is that also a gluten clue?Or just over-eating?
So now that you are glutenfree so to speak, you should be much better regarding ataxia, right? Sorry to hear u suffered so much. Do you really live in Colorado? I hear it is mega-beautiful. N
Julie in Colorado said:
Neta,
I have Gluten Ataxia. I was also diagnosed with Celiac Disease. However, many people can still be sensitive to gluten without having Celiac Disease. I never had gut symptoms (gas, diarrhea)
In 2008 I was so sick that I was essentially carried out to a car and driven home my last day of work. I looked very much like someone who has Multiple Sclerosis. My head dropped, arms don't swing, legs drag. Extreme fatigue (worse than when I had anemia). I was sleeping 10-12 hours every night then napping through out the day. I was only able to crawl down the hall to the bathroom and bedroom, but could do nothing else to care for myself. My skin was very dry. My cognition was tested and fell into the 7-9% on memory, reasoning and speech. The test is called a neuro-physic exam. Three different kinds of neuropathy. Extreme vertigo. Everything hurt. Speech problems, I couldn't even think of words for common object (rice, bird, ) or understand what people where saying to me. It felt like people where speaking Chinese to me (not my native language).
I was diagnosed in January 2009. Both my gastroenterologist(gut doctor) and neurologist understand gluten ataxia. Most don't. Six months later I had most of my function returned. I still have some lingering ataxia and neuropathies. This is in part because I was older (over 50) when I was diagnosed and had gone for years without a diagnosis. If I accidentally eat any gluten now, within 16 hours the ataxia is back in full force. This will last 3-6 weeks. I am on disability because of it.
So, yes. Gluten can cause ataxia. It's not common, but does happen. I hope this helps you.
The jury is still out re gluten. My husband is going on a business trip today and I will use the time to kick off my gluten-less campaign. Is there anything special to know? I know to avoid the obvious such as bread, cake,cookies, quiche,pizza etc. Basically, anything that has wheat, and ths may include sauces and sorts of food not to be expected, right? I was macrobiotic for a while, (bread is allowed) but I found the regimen too hard. No meat, no dairy, special pots, water, roasted nuts, daily fresh vegetables and Japanese food that was hard to get. Also a Westerner, I didn't quite believe in the diet. But this is unrelated to gluten Just wondering..... did you also test normal for gluten-sesitivity? etc. etc My blood work came back normal but I understand that there are more/better markers to test for gluten sensitivity. N
Julie in Colorado said:
Yes, I am significantly better. I am grateful!! I gained a LOT (80 lbs) before my diagnosis. Some people loose weight with gluten intolerance. I have since then lost the weight. Not only do we (husband and I) eat 100% Gluten Free but we also eat vegan now too. THAT's a challenge, but the results have been nothing short of amazing.
I do live in Colorado. It's a gorgeous place. I grew up in the midwest (Iowa) and can really appreciate the beauty here. It's home now.
neta said:
Dear Julie,
Thanks for responding. I tested normal for gluten and never had any gut issues. But who knows maybe the tests are/were wrong.
The blood tests only showed a certain abnormality in various antibodies, which pointed to an auto-immune problem. I do have gas but I chalked that up to the anti-depressant that I am taking. I wonder what are the other "signs" of gluten ataxia? I have sudden weight gain. Is that also a gluten clue?Or just over-eating?
So now that you are glutenfree so to speak, you should be much better regarding ataxia, right? Sorry to hear u suffered so much. Do you really live in Colorado? I hear it is mega-beautiful. N
Julie in Colorado said:
Neta,
I have Gluten Ataxia. I was also diagnosed with Celiac Disease. However, many people can still be sensitive to gluten without having Celiac Disease. I never had gut symptoms (gas, diarrhea)
In 2008 I was so sick that I was essentially carried out to a car and driven home my last day of work. I looked very much like someone who has Multiple Sclerosis. My head dropped, arms don't swing, legs drag. Extreme fatigue (worse than when I had anemia). I was sleeping 10-12 hours every night then napping through out the day. I was only able to crawl down the hall to the bathroom and bedroom, but could do nothing else to care for myself. My skin was very dry. My cognition was tested and fell into the 7-9% on memory, reasoning and speech. The test is called a neuro-physic exam. Three different kinds of neuropathy. Extreme vertigo. Everything hurt. Speech problems, I couldn't even think of words for common object (rice, bird, ) or understand what people where saying to me. It felt like people where speaking Chinese to me (not my native language).
I was diagnosed in January 2009. Both my gastroenterologist(gut doctor) and neurologist understand gluten ataxia. Most don't. Six months later I had most of my function returned. I still have some lingering ataxia and neuropathies. This is in part because I was older (over 50) when I was diagnosed and had gone for years without a diagnosis. If I accidentally eat any gluten now, within 16 hours the ataxia is back in full force. This will last 3-6 weeks. I am on disability because of it.
So, yes. Gluten can cause ataxia. It's not common, but does happen. I hope this helps you.