Greetings and thanks for all the warm welcomes I have received since becoming a member.
I am not sure if this group is for me! Honestly, I became a member under the impression that this was a group of people who developed GLUTEN Ataxia. I read the article recently published by Living Without, http://www.livingwithout.com/issues/4_12/ataxia-2366-1.html?pg, and followed some of the links and ended up here!!
My story is that after finding out I was gluten intolerant in 2009, I became very interested in researching the subject. I was one of the few people I knew who had Ataxia symptoms -- caused by the gluten. (NOTE: If you would like to read my story, it is here: http://www.squidoo.com/living-with-gluten-and-dairy-allergies).
Anyway, after eliminating gluten, dairy and eggs, I still have moments of Alzheimers -- I still have a bit of brain fog from time to time -- I still run into door frames, and I worry about my changing eye sight. I just put two and two together and figured I have a slight case of Ataxia caused by gluten poisoning!!
Having said all of that, am I at the right place? Does any one else have Ataxia due to gluten?
Hello, even if this is not the right site for you at least you know a bit about Ataxia and the problems it can cause. I hope you are more understanding of our problems and can let others know about Ataxia. Eg took me ages to type this due to the shakes and correcting spelling mistakes because I’ve hit the wrong button.
Hi Sandy,
As far as I can think the Ataxic symptoms are the same whether it is due to Gluten or cerebellum or other medical terminologies. Since you are sure of your symptoms, still you have mingled with the right family! Stay strong.
Welcome Sandy! I have not been diagnosed with "gluten ataxia", mine is sporadic cerebellar ataxia (non-hereditary/unknown cause). I do eat basically gluten free as in my opinion, gluten is not good for anyone, ataxia or not. Also, many people with ataxia advocate a gluten free diet, as they say it helps their ataxia. There are many people on this site that have "gluten ataxia" specifically though. Even so, those of us with ataxia share many of the same symptoms, so we can be supportive and understanding of each other. I hope you find this site helpful...
Yes I do! I've haven't been officially diagnosed, however, after a series of MRI's and a spot that appeared and then disappeared on my brain stem and leaving my doctors stumped I went off of gluten competely and my symptoms greatly improved. I was randomly falling, dizzy, stumbling around like I was drunk, blurred vision and the list goes on (I'm 33). I now follow the Paleo diet http://thepaleodiet.com/. My understanding of this support group is that it is for anyone with ataxia which can happen for different reasons. Feel free to contact me if you want to chat more. :)
Unless I'm wrong you still suffer with some form of Ataxia. Since Ataxia is a rare disorder there aren't enough people to segregate into separate forms of Ataxia.
Sandy
I’ve been experimenting with gluten/dairy free eating as a cause for my ataxia, the verdict is still out but likely I’m sensitive but main cause is likely SCA. All my tests are negative for everything but I improved substantially on a gluten/dairy free diet for one year. It leveled off however so I went off it. Now am seeing big improvements with semi restricted diet and good exercise. No one in my family has ataxia except my mom. It’s qute a mystery. Hang out with us and you may learn a bunch more than the docs know. Most docs I’ve seen are VERY limited in their knowledge of ataxia. It can be frustrating.
I had a blood test that said that I was in the normal range and didn't have Celiac but my Dr. suggested that I go off of all Gluten to see how I felt. I stopped triping as much and got rid of a siatic nerve along with so many other things too. I have been Gluten free since 2006.
I was diagnosed having Sporatic Spinal Cerebellar Ataxia which really means that the Dr's don't really understand how I got ataxia because Hereditary has been ruled out so far. I believe it's from toxins. I was a hairstylist that injested chemicals in doing hair and in my foods!
I found it almost easier to give up all flours so I wouldn't have to read lables. I started this before there were so many substitutes out there. Now there is so much but being off flours for so long now I find I only have GF flour exstemely rarely if ever!
There are quite a few other's here that have sinsitivity to Gluten and have Gluten Ataxia. Now I haven't gone back having any to test it to see what would happen actually since I've lost so many symtoms I'm afraid to have any. And I'm ok with not having any Gluten at all I really don't care to test it.Who knows if those symtoms would come back to stay.
I see it as poison which to me it really is. Yes, I think your in the right place. There are lot's of other's here that are sinsitive to Gluten. I really don't think anyone really needs any! I like having a guarantee that I will absorb every vit and mineral that I eat for my brain. :0)
that's really interesting. I was teenager in 1950's when we used loads of hair lacquer. Although diagnosed with Cerebellar ataxia in my late 50's, following surgery to straighten my right foot, numerous further tests were all negative.
I also have sural nerve [next to sciatic nerve] pain which comes and goes .. never considered it might be affected by diet. Dr Giunti [neurologist] prescribed baclofen for muscle rigidity which not only relieved the rigidity but also relieved the sural nerve pain. I have now stopped taking anti inflammatory pills and nortripthaline for nerve pain.
YES! I was diagnosed with Gluten Ataxia in 2009. I was mostly bed bound in 2008 and I looked like I had MS. The testing for that came by mixed. However, I had a Rheumatologist who just kept testing me for everything. Finally I got a call from her office, "You have Celiac Disease (CD) and need to see a G.I. specialist". I had never even heard of CD before this call. I got an appointment with the best GI doc in town and he knew immediately what was wrong with me. He even made a call to Dr. Hadjivassiliou regarding my prognosis.
Because I was over 50 and had been sick for many years before I got the diagnosis it could be more than 5 years of being GF before I see total healing. I may never see total healing. However, I have about 80% of my normal function back now. If I inadvertently eat any amount of gluten, I have a gluten episode that can last over three weeks. I'm back to needing a cane/walker/wheelchair during those three weeks.
My speech, short term memory, balance, fatigue, head tremors, right side weakness, neurological pain and more are all impacted tremendously by gluten. I am disabled because of gluten ataxia. After eating gluten it takes about 14-18 hours to start in with the ataxia. That's always my first symptom. Because it's SO easy to be accidentally exposed (cross-contamination), I may never be able to work again. But I am very encouraged by how far I have come. I was able to do a 5K recently (walking). The next week I started a gluten episode, but I am still thrilled with the progress!
I hope you find the support you are looking for here. If you are in the USA we also have a group called: "American Ataxia"
Patsy, I was given Baclofen for my muscless also. After I gave up all Gluten (and flours for that matter) it only took about 6 weeks for me to be releaved of having it.
I learned that we absorb 80% of what we touch. Well as a hairstylist I did lot's of color on people all day long plus inhailed it. The person getting it done definatly didn't get as much as I did but I started noticing that lot's of people were subtley having some kind of a reaction (I hate to say it but for someone having sinsitivitey or reaction should stay away from it that includes me and I got that almost too late).
Now I realise that even diffrent foods that make me gain weight I have a reaction to because I'm gaining weight having it.
I don't color anymore! I can't! :0( I loved to be blond. Infact I didn't know I was as dark as I am because I colored for years! :0)
Patsy said:
that's really interesting. I was teenager in 1950's when we used loads of hair lacquer. Although diagnosed with Cerebellar ataxia in my late 50's, following surgery to straighten my right foot, numerous further tests were all negative.
I also have sural nerve [next to sciatic nerve] pain which comes and goes .. never considered it might be affected by diet. Dr Giunti [neurologist] prescribed baclofen for muscle rigidity which not only relieved the rigidity but also relieved the sural nerve pain. I have now stopped taking anti inflammatory pills and nortripthaline for nerve pain.
I do not have a firm diagnosis but very probable gluten ataxia. I have been on the gluten free diet for the last 2 1/2 months, and plan to stay on it. I just joined this community as well and have found a wealth of interesting info about ataxia, as well as a very welcoming and friendly community
I have seen some improvement of my symptoms in the diet. My daily headaches are less severe, and my head is clearer than usual. Up to now, I've always had this very heavy, hangover sensation (brain fog) that saps my energy and makes it difficult to do much of anything.
In reading your article, I share many of your symptoms. I often bump into door ways, have random falls, very low energy, bouts of drunken walking, bouts of vertigo, migraines, blurred/shaky field of vision, and get easily confused and suffer from poor short term memory since this condition started 12 years ago.
My energy is still very low, but my head is definitely clearer although i have a ways to go, but feeling like the gluten free is definitely helping.
Thanks so much for everyone that emailed a response to my inquiry!! It is great to know that not only am I among friends, but also among others with similar health issues.
Personally, I am very grateful that my symptoms are mostly under control and that I lead a reasonably normal life. My husband and I are both self employed, so we can make adjustments based on how I am doing. And, of course, I work out of my home which makes it easier!
Looking forward to learning more about each of you and the group as time permits!