It has some goof information on it, how it's diagnosed, some of the controversy over how to diagnose it, and how they believe it works. There are some studies on this condition as well that are fairly easy to find once you have the terminology (mentioned in the article). Might be worth printing this sucker out, finding some of the studies, and showing them to your consultant.
Oh man - ha! Yes, it's there, I just went and looked. Sorry about that - totally missed that I had a message! I swear, with computers I'm like an idiot savant, but without the savant. :-P
MissCake2 said:
Hi Shaunamom - did you get the message I sent you?
It has some goof information on it, how it's diagnosed, some of the controversy over how to diagnose it, and how they believe it works. There are some studies on this condition as well that are fairly easy to find once you have the terminology (mentioned in the article). Might be worth printing this sucker out, finding some of the studies, and showing them to your consultant.
Hi everyone, I have had gluten ataxia for over two years. My symptoms come and go too. No one has discussed makeup, lotions, shampoos,etc. For me anything that touches my skin that has gluten will make Me have an attack. Does anyone wear a balancing vest? When I got mine, within days I became a different person. I could think again because I didn’t have to worry about balancing and falling. My legs became stronger and I can do stairs now. The vest is weighted to your weak areas. A therapist gives a series of tests then weights the vest and gives the tests again making any adjustments. And truely instantly you have balance. It’s really like a miracle. And about the isolation, gluten ataxia changes your life in so many ways. I have to push myself to call friends and visit, but it’s worth it. I recently read book about a person who’s life was quickly changed like all of ours. He said,"stop thinking about what you can’t do and think about think what about what you can do. He said even think about the smallest things like being able to pick a fork or brush your teeth, etc. It helped me so much. I began to realize all that I can do and how much I appreciate that.
Great point about makeup, lotions, shamopps etc. Glad you mentioned that here! :-)
Ahbee said:
Hi everyone, I have had gluten ataxia for over two years. My symptoms come and go too. No one has discussed makeup, lotions, shampoos,etc. For me anything that touches my skin that has gluten will make Me have an attack. Does anyone wear a balancing vest? When I got mine, within days I became a different person. I could think again because I didn't have to worry about balancing and falling. My legs became stronger and I can do stairs now. The vest is weighted to your weak areas. A therapist gives a series of tests then weights the vest and gives the tests again making any adjustments. And truely instantly you have balance. It's really like a miracle. And about the isolation, gluten ataxia changes your life in so many ways. I have to push myself to call friends and visit, but it's worth it. I recently read book about a person who's life was quickly changed like all of ours. He said,"stop thinking about what you can't do and think about think what about what you can do. He said even think about the smallest things like being able to pick a fork or brush your teeth, etc. It helped me so much. I began to realize all that I can do and how much I appreciate that.
Yes, I have to watch even external products I use including hand soap, etc. It is kind of second nature now since I've been doing it for so long... but I get rashes and hives as well as other symptoms if I use products with any kind of grain in them. I just read labels carefully.
The weighted vest... how interesting! Do you have cerebellar ataxia? It seems I just have the vestibular ataxia, and because my balance issues don't stem from the muscle area - but instead from the vestibular nerve I don't think the vest would work. I have been to physical therapists, and none of them ever mentioned it.
Ahbee said:
Hi everyone, I have had gluten ataxia for over two years. My symptoms come and go too. No one has discussed makeup, lotions, shampoos,etc. For me anything that touches my skin that has gluten will make Me have an attack. Does anyone wear a balancing vest? When I got mine, within days I became a different person. I could think again because I didn't have to worry about balancing and falling. My legs became stronger and I can do stairs now. The vest is weighted to your weak areas. A therapist gives a series of tests then weights the vest and gives the tests again making any adjustments. And truely instantly you have balance. It's really like a miracle. And about the isolation, gluten ataxia changes your life in so many ways. I have to push myself to call friends and visit, but it's worth it. I recently read book about a person who's life was quickly changed like all of ours. He said,"stop thinking about what you can't do and think about think what about what you can do. He said even think about the smallest things like being able to pick a fork or brush your teeth, etc. It helped me so much. I began to realize all that I can do and how much I appreciate that.
Can you tell me how you got diagnosed? My doctor just checked my antibody levels, which were all negative (been gluten free for 2 years). Since they were negative he said I couldn't have gluten ataxia. That's not how it works, is it?
I had the standard blood test given several times and it always came out negative. I also had an endoscopy which was also negative. However, I had been gluten free for six months when that test was given. A nutritionalist told me about a company, Enterolab. They do full genetic screening and stool testing. They Fed Ex a kit for both. The genetic screening is simple. Just scrape the inside of your mouth with a sterile swab they provide. They also sent a container for the stool testing.. You get instructions that are thorough and easy to follow. Within 2 - 3 weeks your will receive a report with notes written from Dr. Fine. You can also call and talk to an assistant. I paid for this testing out of my pocket. I was desparate to find out why I couldn't walk, think, or digest food. I was so sick at that time I didn't think I would live much longer. I learned that I carry the HLA DQ 2 and HLA DQ3 genes. (Warning: some labs only report on the DQ2 and DQ8 genes) Enterolab does full screening. I also learned I was well into the autoimmune state of gluten intolerance. Because I am a double gene each of my children have a gene. I learned about the after seening 4 neurologists, not one of them ever mentioned ataxia or gluten. I stumbled on discovering gluten ataxia by joining a celiac forum. After that I have been very careful to only find doctors that know about gluten ataxia. I am very lucky to have a good team of doctors now. Soon I will be tested by a neurophsycologists to locate the areas in my brain that have damage. If you go to enterolab.com, you can get all the information you need to get thorough testing. Another good website is theglutenfile.com . It is a compliation of medical research. It has a section on gluten ataxia. Let me know about your research. You are the first person I have ever talked to that has gluten ataxia.
Melissa said:
Can you tell me how you got diagnosed? My doctor just checked my antibody levels, which were all negative (been gluten free for 2 years). Since they were negative he said I couldn't have gluten ataxia. That's not how it works, is it?
Sorry I have been so late in my replies. I will check my emails daily now. The vest is called Balance Wear. It is new technology. Most therapists haven't heard of it yet. A woman out of San Francisco developed it. I assume my ataxia comes from the cerebrellum. I was discouraged about finding a knowledgeable neurologist that I quit looking for one until I got tremors. I like the new doc and he is a specialists in ataxia. If I was tech savvy, I would model the vest. I think the most incredible thing about the vest is that after wearing it awhile, you can take it off and be in balance. MissCake2 said:
Yes, I have to watch even external products I use including hand soap, etc. It is kind of second nature now since I've been doing it for so long... but I get rashes and hives as well as other symptoms if I use products with any kind of grain in them. I just read labels carefully.
The weighted vest... how interesting! Do you have cerebellar ataxia? It seems I just have the vestibular ataxia, and because my balance issues don't stem from the muscle area - but instead from the vestibular nerve I don't think the vest would work. I have been to physical therapists, and none of them ever mentioned it.
Ahbee said:
Hi everyone, I have had gluten ataxia for over two years. My symptoms come and go too. No one has discussed makeup, lotions, shampoos,etc. For me anything that touches my skin that has gluten will make Me have an attack. Does anyone wear a balancing vest? When I got mine, within days I became a different person. I could think again because I didn't have to worry about balancing and falling. My legs became stronger and I can do stairs now. The vest is weighted to your weak areas. A therapist gives a series of tests then weights the vest and gives the tests again making any adjustments. And truely instantly you have balance. It's really like a miracle. And about the isolation, gluten ataxia changes your life in so many ways. I have to push myself to call friends and visit, but it's worth it. I recently read book about a person who's life was quickly changed like all of ours. He said,"stop thinking about what you can't do and think about think what about what you can do. He said even think about the smallest things like being able to pick a fork or brush your teeth, etc. It helped me so much. I began to realize all that I can do and how much I appreciate that.
The Journal of Gluten Sensitivity by Celiac.com Winter 2011, Volume 10 Number 1 had a great article written about why the tests are often wrong. Article name "The Conundrum of Gluten Sensitivity: Why the Tests are Often Wrong" By Doctor Tom O'Bryan. It is great knowledge to have when visiting the doctor.
Ahbee said:
I had the standard blood test given several times and it always came out negative. I also had an endoscopy which was also negative. However, I had been gluten free for six months when that test was given. A nutritionalist told me about a company, Enterolab. They do full genetic screening and stool testing. They Fed Ex a kit for both. The genetic screening is simple. Just scrape the inside of your mouth with a sterile swab they provide. They also sent a container for the stool testing.. You get instructions that are thorough and easy to follow. Within 2 - 3 weeks your will receive a report with notes written from Dr. Fine. You can also call and talk to an assistant. I paid for this testing out of my pocket. I was desparate to find out why I couldn't walk, think, or digest food. I was so sick at that time I didn't think I would live much longer. I learned that I carry the HLA DQ 2 and HLA DQ3 genes. (Warning: some labs only report on the DQ2 and DQ8 genes) Enterolab does full screening. I also learned I was well into the autoimmune state of gluten intolerance. Because I am a double gene each of my children have a gene. I learned about the after seening 4 neurologists, not one of them ever mentioned ataxia or gluten. I stumbled on discovering gluten ataxia by joining a celiac forum. After that I have been very careful to only find doctors that know about gluten ataxia. I am very lucky to have a good team of doctors now. Soon I will be tested by a neurophsycologists to locate the areas in my brain that have damage. If you go to enterolab.com, you can get all the information you need to get thorough testing. Another good website is theglutenfile.com . It is a compliation of medical research. It has a section on gluten ataxia. Let me know about your research. You are the first person I have ever talked to that has gluten ataxia.
Melissa said:
Can you tell me how you got diagnosed? My doctor just checked my antibody levels, which were all negative (been gluten free for 2 years). Since they were negative he said I couldn't have gluten ataxia. That's not how it works, is it?
You're right, Melissa, that's not how it works at all.
1. If you've been gluten free, then you will always be negative on your antibody levels. I'm a diagnosed celiac, and my antibody levels are negative now, too. Sadly, this is a REALLY common mistake by doctors - they did a survey of experts in celiac disease, and over half screwed up the question on whether a gluten free person would have positive antibodies. It's pretty sad.
2. Antibodies only say whether you have celiac disease, and that's only if you've been eating at least a couple slices of bread (or the equivalent) daily for 2-4 months straight before the test. The test detects the body's reaction, and it is only sensitive enough to detect that reaction when the damage is to a certain level and so the antibodies are at a certain level. So if, say, you had gluten ataxia due to nutritional deficiencies, you are eating gluten free, but have ataxia issues from one or two moments of gluten contamination in your food, then your antibodies will still be completely negative, in most cases. If you have permanent damage that was caused by nutritional issues from celiac disease, your antibodies will also be negative (if you're eating gluten free).
3. If you have gluten ataxia that is NOT related to celiac disease and involves an actual attack on the nervous system, it doesn't matter what the antibody levels are, at least not the ones they test for in Celiac disease, because this isn't celiac disease. It's something different. The article mentioned previously in this thread, though, on gluten ataxia in...I think it's Living Without Magazine...mentions one antibody that they think may be involved. It's not usually tested for, though, and docs aren't entirely certain what different levels would indicate.
Melissa said:
Can you tell me how you got diagnosed? My doctor just checked my antibody levels, which were all negative (been gluten free for 2 years). Since they were negative he said I couldn't have gluten ataxia. That's not how it works, is it?
I have been gluten free for well over a year and a MD said he refused to do anything for me, because my Gliadin labs were negative. I am already a diagnosed Celiac. I can confirm, many MD's have no clue. Your DR is wrong!! Oops, just saw this thread is a couple of months old, sorry, if it is too late to respond.
He finally ordered an MRI which showed something. That coupled with my terrible increase in symptoms, when exposed to small amounts of gluten (several weeks after), has led him to believe, I probably have it. I explained to him that being gluten free means no antibodies. He is a neurologist and he has no ideas on how to help anyway.
gluten..... I am wondering if there is any possibility that the gluten food is kind of genetic food?
Will you have problem if taking organic instead?
Charmaine
Michael Ward said:
Brian:
I can't have Gluten otherwise I will speak like a drunk?
The doctors don't know why?
My Neurologist say's: "just keep eating a GF diet as it benefits your ataxia!"
We need to do what works for us.
Not everyone has a problem with gluten however many with MS, ATAXIA, Parkinson and a few other diseases seen to have benefits from a controlled diet. Gluten is one of the first on the list of things to omit.
How did it go with your daughter?I am now into Day 4 of Gf and perhaps I am being too optimistic .Havent seen any results so far.I know it isnt a cure but my speech is not slurred like everyone else.It is more staccatto but clear when I speak but not fluent anymore.It gets more difficiult to speak as the day progresses.It is very difficult to speak but I get the usual explantions abput muscles but I am not concinced..I do not get the usual symptoms of ataxia-no pain,fatigue or swallowing difficulties.I do struggle with balance and can only walk inside by furniture walking..Is it worth me persisting with GF.
It can can weeks/months/years to see real results from a gluten free diet. It hides in medicines/makeup/lotions(that will transfer to food to your mouth). So many place gluten can hide. Give yourself time and be persistent. It can be a life changer.
Julie
Marie Turner said:
Hi Michaek
How did it go with your daughter?I am now into Day 4 of Gf and perhaps I am being too optimistic .Havent seen any results so far.I know it isnt a cure but my speech is not slurred like everyone else.It is more staccatto but clear when I speak but not fluent anymore.It gets more difficiult to speak as the day progresses.It is very difficult to speak but I get the usual explantions abput muscles but I am not concinced..I do not get the usual symptoms of ataxia-no pain,fatigue or swallowing difficulties.I do struggle with balance and can only walk inside by furniture walking..Is it worth me persisting with GF.
I do not know what Gluten ataxia is. But I have a inherited ataxia. If I knew I could get a little better going gluten free. I would do it in a heart beat. I go to the doctor this week Im going to ask, If this is something that can help me.
I have learned not to put much stock in most Doctors say about a gluten free diet, especially when it comes to ataxia. I think the only real way to find out, is to try it. However, gluten hides every where. It takes a long time to catch it all. The is all so new and they seem to be coming to new understandings all the time. A doctor can be anywhere on that time line. I have been told the craziest things by Doctors.
If a diet would change my Ataxia I would do it in a heart beat. I do eat good. But everything has gluten in it. I do go to the doctor tomorrow and I will ask her if this will help my kind of Ataxia. And your right we do have to take more care of our bodies!