I wonder if someone can clarify for me what blood test should be used to screen for gluten ataxia? My husband had a test but I am not sure if we can trust it to show gluten ataxia or if it was just for celiac disease. I am just confused because I read over and over that the celiac blood test is not an accurate test for gluten ataxia?
Thank you!
I had same problem.. my grand daughter has been diagnosed with coeliacs so thought I would check. I presume I have been tested for gluten ataxia along with everything else but just thought I would ask gp for coeliac test.
she said it could be false negative and only proper biopsy could tell.
However, the treatment would be to have glutenfree diet so easier to just have glutenfree diet than biopsy.
Confusing isnt it!
Yes, it is confusing :-) Based on the preliminary reading I had done before his last round of blood tests I started him on a GF diet immediately afterwards. From reading Neuro Mom's link below I see that he had the celiac blood test, which came back negative. I think you are right about going GF. If there is even a chance that a blood test might show a false negative the best thing to do is to try going GF and see if that makes a difference. We are committed to this for a year. So far - only about 2 weeks in - I don't see any improvement in symptoms but I would just be happy at this point if I didn't see any progression.
Thank you!
Patsy said:
I had same problem.. my grand daughter has been diagnosed with coeliacs so thought I would check. I presume I have been tested for gluten ataxia along with everything else but just thought I would ask gp for coeliac test.
she said it could be false negative and only proper biopsy could tell.
However, the treatment would be to have glutenfree diet so easier to just have glutenfree diet than biopsy.
Confusing isnt it!
Doctors Peter Osborne and Tom Bryant explain this with great clarity on their websites.
They both advise an antibody test which identifies the cellular response to possible irritants.They also have very clear information about self-diagnosis for celiac disease and gluten-sensitivity, which have similar symptoms but celiac is a disease and gluten-sensitivity is a syndrome. They suggest the antibody panel to pinpoint the issue.
However, I agree with Patsy that the elimination diet, (Google it to learn more), works best and is least expensive.
Thank you! This is an excellent link. I see that he had one test, the transglutaminase test. It was negative, which disappointed us because we so hoped it was a gluten problem. We will try to get his neuro to do the full panel, and I know he will have to go back on gluten before he can do that now. But regardless of what the tests say we will go back to GF for an extended period of time and monitor the results ourselves.
Neuro Mom said:
eire, remember, there are often false negatives.
Yes... that's comforting actually. It gives us some hope. It might seem futile, but until they tell us it's a SCA or some other type of hereditary cause we are hoping that it might be something manageable. He is happy to stay GF forever if it makes any difference. Even if it doesn't make any noticeable difference, at this point it seems like a good idea just in case....
Judita said:
eire, remember, there are often false negatives.
Really interesting information! I'm wondering if anyone with a genetically diagnosed, hereditary SCA has benefited from going gluten free? I try so many different things but that one is a huge commitment for the whole family and although I try to eat very little gluten I'm not totally strict yet - but it's on my list of things to try. Just curious.
I asked my neurologist about that test because i wanted to get tested and find out. but she flatly said that it doesnt affect my ataxia. i decided to figure it out for myself. i slowly weaned off wheat filled foods and i feel a lot better. i dont if im allergic to gluten or not but not eating gluten has made me feel better and more energized. I know this for a fact because i lost will power at one point and had pizza and garlic bread with mozarrella cheese. Didnt feel too good the next day.
I have been diagnosed with hereiditary SCA and have had the antibody blood test twice and biopsy --all negative for celiac. However with the encouragement of a neurologist on fellowship I was seeing I went on a gluten free, soy free, casein (dairy) free diet for a year. It took 3 months before seeing improvement and it was subtle–I didn’t believe it. By 6 months in I was certain I had found a cure. At 9 months progress leveled off and at the end of the year I went off the diet and have not been able to stay on it since. However I still have all the progress I had made and overall haven’t slipped back. But when eating lots of gluten, and sweets I do have more symptoms. It is very hard to do a strict gluten free diet. Half way will not do it. You must be very strict. Besides celiac there are many other theories why gluten sensitivity may affect Ataxia. Do some more reading. I think this is something docs know very little about but many of the more forward thinking ones are recommending gluten free for neurological issues. I did both gluten and casein free due to an actress showing progress her autistic child made with this diet on TV. The video showed a remarkable improvement. The problem may not just be gluten but also could be dairy or any food that is creating an autoimmune response.
This is so interesting. Thank you for sharing your story. I think we can't ignore how many people have said that gluten has helped them for sure. Going GF proved relatively easy for my husband but dairy free... that would be a challenge. What you said at the end, though, about 'any food that is creating an autoimmune response' makes sense. Thank you!
maryseas said:
I have been diagnosed with hereiditary SCA and have had the antibody blood test twice and biopsy --all negative for celiac. However with the encouragement of a neurologist on fellowship I was seeing I went on a gluten free, soy free, casein (dairy) free diet for a year. It took 3 months before seeing improvement and it was subtle--I didn't believe it. By 6 months in I was certain I had found a cure. At 9 months progress leveled off and at the end of the year I went off the diet and have not been able to stay on it since. However I still have all the progress I had made and overall haven't slipped back. But when eating lots of gluten, and sweets I do have more symptoms. It is very hard to do a strict gluten free diet. Half way will not do it. You must be very strict. Besides celiac there are many other theories why gluten sensitivity may affect Ataxia. Do some more reading. I think this is something docs know very little about but many of the more forward thinking ones are recommending gluten free for neurological issues. I did both gluten and casein free due to an actress showing progress her autistic child made with this diet on TV. The video showed a remarkable improvement. The problem may not just be gluten but also could be dairy or any food that is creating an autoimmune response.