I haven't had Genetic testing. Perhaps I do have an underlying genetic cause but finding that out won't change anything for me. I also have a small, slow growing brain tumor. My Neuro thinks I may be temporarily "outrunning" my Ataxia only to meet up with the hereditary head of the beast not to mention brain tumor surgery(not a good candidate!) in my future. So the thought was that between the two conditions I was in-between some pretty sucky bookends of destiny and what I didn't need to know wouldn't depress me. ;)
I wanted to post this article for everyone to read here! I thought this was very interesting to read!
NEW YORK — Neurologic dysfunction may be the sole presenting symptom of celiac disease, according to Dr. Marios Hadjivassiliou, a neurologist at the Royal Hallamshire Hospital in Sheffield, England.
Speaking at an international symposium on celiac disease, Dr. Hadjivassiliou reported that his neurology clinic has followed 312 patients with gluten sensitivity who presented with various types of neurologic dysfunction. The majority of the patients had gluten ataxia (n = 147), while others had peripheral neuropathy (n = 116), gluten encephalopathy (n = 31), and gluten myopathies (n = 13).
His previous research has found that gluten ataxia is the single most common cause of sporadic, idiopathic ataxia—accounting for 40% of sporadic, idiopathic ataxias and 21% of all ataxias (Brain 2003;126:685–91). “These patients have limb and gait ataxia, and one-third will also have an enteropathy,” he said.
He has also shown that patients with gluten ataxia improve or stabilize within a year of starting a strict gluten-free diet, even in the absence of enteropathy (J. Neurol. Neurosurg. Psychiatry 2003;74:1221–4). “However, the sooner you intervene, the better,” he said. “About 60% of these patients will have atrophy of the cerebellum shown on MRI, and there is loss of Purkinje cells, which is not reversible.”
With regard to gluten neuropathy, new research by Dr. Hadjivassiliou has shown that it accounts for 26% of all axonal neuropathies and 34% of idiopathic, sporadic axonal neuropathies (J. Neurol. Neurosurg. Psychiatry 2006;77:1262–6). “The prevalence of gluten-sensitive enteropathy is 10 times higher in patients with axonal neuropathy compared to healthy individuals,” he said.
He has also recently published evidence showing that patients with gluten-sensitive neuropathy show improvement on a gluten-free diet, while patients who continue to ingest gluten deteriorate further (Muscle Nerve 2006;34:762–6).
However, neuropathies are still common in treated celiac patients, he added. “If you screen adults with established celiac disease, one-quarter of them will have evidence of neuropathy despite a gluten-free diet.”
Gluten encephalopathy—episodic headache often associated with confusion and focal neurologic dysfunction, requiring hospital admission—is also a neurologic manifestation of celiac disease, Dr. Hadjivassiliou reported.
Magnetic resonance imaging shows white matter abnormalities associated with focal neurologic deficits, and these are not always reversible even after the patient starts a gluten-free diet. However, the headaches respond well to the elimination of gluten, he said.
Dr. Hadjivassiliou believes that nutritional deficiencies resulting from malabsorption in the small intestine can now be ruled out as a cause of gluten-sensitive neuropathies.
“The overwhelming evidence is for an immune-mediated mechanism,” he said, adding that pathological data mainly from postmortem examinations show evidence of MRI inflammatory changes with perivascular emphasis primarily affecting the cerebellum and brainstem, but also other parts of the brain.
He urged physicians to recognize that celiac disease is a systemic disorder that has diverse manifestations in the body beyond the gastrointestinal system. “There is a historical misconception that gluten sensitivity is solely a disease of the gut,” he said. “To recognize the neurologic impact, you have to appreciate it is a systemic disorder.”
His experience is that many gluten-sensitive neurologic disorders have an age of onset in the mid-50s. Many patients have no gastrointestinal symptoms, but serologic tests for IgG and IgA antigliadin antibodies are positive.
Endomysial antibodies or tissue transglutaminase antibodies can help identify those patients who may also have an enteropathy; however, only one-third of these patients will have histologic confirmation of this on biopsy.
MRI scans taken over 7 years show progressive cerebellar degeneration in a patient with gluten ataxia who refused to go on a gluten-free diet (earliest scan at upper left to most recent at lower right). Courtesy Dr. Marios Hadjivassiliou
GREAT INFO! Thank You Jeanie!
Hi Karen, I was recently told I have SCA and am gearing up for genetic tests to see what type. I have had symptoms since childhood but it has progressed and I am now at age 39 in a wheelchair. Ehlers Danlos runs in my family and I was also diagnosed with it. I was wondering if the two could be related. The problem is no one really seems to know much about either condition. Therefore, my questions have gone unanswered. I am also gluten sensitive and follow a gluten free diet. I have multiple food sensitivities and have to avoid all processed foods, diary,eggs,and latex foods. Thank you for responding to this post. Now I know my questions have value! May I ask who you see for treatment? You've just given me some hope. ~Smiles~
Karen Dixon said:
I'm not your typical ataxia patient...my ataxia stems from a Chiari malformation, associated with Ehlers Danlos Syndrome, which is why I saw a geneticist. EDS is hereditary. There are gluten sensitivity issues associated with Ehlers Danlos (EDS), and a gluten free diet is recommended. Please have your doctor review your MRI for a Chiari (even a mild tonsillar herniation can be severe). It was a 4 year journey to figure out what was causing my ataxia. After convincing my neurologist to send me to a neurosurgeon that specializes in Chiari Malformations, I was able to be properly treated. My ataxia is almost completely gone, along with muscle/neck spasms, migraines,etc. I was treated with a drug called Diamox. If you find that your are hypermobile, get sprains easy, you may want to be checked for the EDS. Gluten sensitivity is rampid amongst EDS carriers. Good luck!
HI Jeannie etc
The article was very interesting about gluten.I have been doing it for a week now and it has had no effect on me but my husband who has gone gf to join me has noticed a huge improvement in his IBS.
My MRI taken about 4 years ago showed some cerebellar dysfunction.Is there any hope for me improving?
My upper limbs seem ok.There is movement ,no balance and my legs feel weak and I have difficulty talking.
My speech is not slurred but breathless.I only had a few symptoms with my balance when I went for my MRI.
Marie
ps my neurologist was not very helpful and was a bit sceptical about diets.
Hi Marie, Some/most Dr's are sceptical about foods. Thank goodness the new generation is changing that because there is so much evidence now to support it. I look at it this way. At least I'm giving my body really healthy foods to build it up so when and if the time comes I need to pull on it, it will help my body out in the future. Does that make since? :0)
I was watching PBS today (I love watching programs with information that might help me learn at least one thing. I always come away with more than one) and this lady wrote a cookbook about Alergie or even having a little intollerance cook book. She said something that jumped out at me. Sunflower seed butter is better than penut butter for us and coconut yogurt and apple sause were great for egg substitutes in any recipy.
For binding egg like consistancy 1 T flax seed meal mixed with 3 T hot water = 1 egg. Let sit for a few minutes and it becomes goopy. She said with any allergie or intollerance to keep a journal of how you feel each day and notice how you feel. She also said really look for how your body is diffrent even the slightest bit when you stop eating a certain food group.
Being GF doesn't mean your missing out on any foods in fact they tend to taste better once you get used to them or use diffrent spices to make things more flavorful. She suggested if you go out to eat in a reseraunt bring your favorite spicce with you in your purse to use. She said we aren't missing out on nutrional value, in fact we are getting more. That makes me feel good about doing something really good for myself.
She said that once we realise we have one intollerance that we start to notice more things we can try to let go of that might work too. She said we crave what we had yesterday almost at the same time (which I thought hummmmm;0) )
She suggested not to worrie about not having a food or food group forever or even one year from now or the rest of your life. Just do one day at a time. I so agree with that!
Jeannie, I'm confused ( lately it doesn't take much...ha! ). My doctor gave me a blood test for gluten allergy and it was negative. Does that mean a person can still be allergic to gluten even if a blood test is negative and there are no other gastric symptoms?
Hi Rose,
I came out on the normal end (negitive also) and it said I didn't have have gluten intollerence but my Dr that had me take the test suggested that I go off for a few weeks just to see how I felt. She said that I could always add it back if I wanted, and that not eating any gluten in my foods was like a guarantee that if I even had the slightest bit of intolerance to gluten at all and I may not have any symptoms that I notice, I would absorb all my vit and nutrients in my foods.
She said that the only real way to tell would to give it a try. But it was up to me. So I went off right then. I really didn't notice any change but stayed off anyway thinking (more time might be better? If I coud do something anything to have any kind of a guarantee to have even a bit of control over this ataxia I'll do it!), I would absorb more vit and min. So after a few weeks I started noticing just a little bit. The longer I'm off I actually see more resultse. It's been 6 years now.
Someone told me a long time ago that since I was intollerant to gluten and had some gluten in my diet (grew up on wheat bread), that it would take years to really get it out of my system to repair any damage or hair like villi that were either laying down or destroyed having had it for years, so I also figure it would take time to see any results. So I think that really depends on how long someone had eaten it before they can see any effects, if they cheat even with 1 gram they have to start all over again etc. Not only that but maybe it's slight and they don't notice right away, It made since to me anyway.
I stopped triping and my siatic nerve left etc just after a few weeks being off of it(and let me tell ya I was more than thrilled). I never had problems that I thought were connected before. But clearly it's making a huge diffrence for me being off. Now I don't know if it was from letting go of gluten or becuse it also is contributing to the way I eat, because I'm told the only way to really know would be to go back to eating it for a few months and have a blood test. But I'm never going back to find out. Why? I watch what I eat and want to absorb everything, to me it's just not worth it. If it's working for me.
So my thought is if it's not good for dogs in their food (dog's were dieing from eating it, yes it was in larger quantities but still) why not have a guarantee? To me it's a small trade off that I'm worth. It's gotten so easy to trade a symtom for gluten as far as I'm concerned. I'm not a gambler! :0)
You may not be gluten intollerant, but I've read that 90% of the people are intollerant even slightly and never show any signs. They only will know that after we go. So I must be even a little bit! :0)
Thanks for your explanation Jeannie! Your clarification makes sense to me. And, if you feel better not eating gluten, then why not? I am slowly "weaning" myself off gluten after years of eating it, as I don't think it's beneficial for anyone, ataxia or not. The more I read and hear, the more convinced of this I become! Thanks again...
Also thanks to your experience Jeannie.I had blood tests and they were negative so I thought it couldnt be gluten .I am now 53 and had given up and resigned to getting worse.But I have given up gluten only about a week or so so far which I have been eating for 53 years.I dont know what has caused the progression.I watched a programme about brain injury;similar symptoms but different cause.
Mine is ca of unknown cause. I would love to think there was something I could do. I want some hope to keep fighting.
I can stillwalk inside just but it is my speech that upsets memost.It is that feeling of being resigned that is the most frustrating.I gave up when the Neurogist coudnt find any antibodies so I was in the dark.I know that mine is progressive but we don't know what is causing it.The Neurologist has ruled out a genetic link so I am puzzled.
Marie
Marie. I’m in the same boat of not knowing what type that I have either. Well I’m classified as having Sporadic SCA. A few months ago I again started going down hill with my walking. Saw both of my Dr team with no answers for my fatigue or walking. So that actually motivated me to dig in and look for ways to help myself. After all I feel, since they have lots patients and I’m just only one of them I have more time to work on me getting better. I see them to get their opinions, then go on a search myself!
I won’t give in to ataxia yet. My thought is I have to be ready and as healthy and as strong as I can be mentally, physically, emotionally and spiritually and balanced as I possible as much as I can untill they find a cure that becomes available. So when it comes depending on how much it helps take away. For some reason I have in my mind that it can only do so much and I have to do the rest. So I think the longer I can maintain what I have the less working at getting better I have to do later. I take baby steps with everything (challenge myself constantly) it pays off for me!
I’m at the point of not really caring anymore or focus on what I can’t do, I focus (challenge) myself do do what I can do and then everyday I push that line just a tiny bit. Those tiny bits start adding up and help me be more healthy. I know we/I have the power inside me to work harder than I do most of the time, so I have to just play mind games with myself to get there! ;0)
Sorry Marie, I answered your message here with my IPhone. And I hate that auto correct! :0) I'm 52 as of last June. Working on my core strength and my legs strength (which I never really have so hard before these last 4 months now) makes me feel so much more stable than I was just a short time ago.
My last 3 MRI's I've had do not show anymore degeneration of my cerebellum. I don't know why or what I'm doing is contributing to that, so I have no choice but to keep up what I'm doing, that includes everything I've been doing no matter how small. I think everything I can do that is possitive will/can help me with my ataxia, and I think everything that I do on purpose.
My Dr's all say that no one can stop the degeneration once it's started, but my thought (and I've told them too) is there is always a first time for everything! Who know's where this will actually take me, but regardless what happens I choose to make my life as good even if I have one oz left in me. I guess I'm stubburn and turning it into something that actually is helping me finally! :0)
My speach is pretty good people say. I heard a speach therapist say at a NAF Confrance years ago to speak slowly and lower than I normally do, so I practice doing that and that helps me. Sometimes I get very high and start speaking too fast becsause I get excighted but I have to talk with myself and slow down. When I do that my husband says "why are you yelling I'm sitting right here?" That stops me in my tracks and helps me be awaire of going a few octives lower when I get on a roll! hahahahaha.
I know what you mean about staying strong.I know several people that all seemed healthy and then suddenly died of some complication.I think it is all swings and roundabouts.When I was younger and still teaching I had stress and no time >
Now I have all day so II do physical in the morning and relaxing on my scooter exploring in the afternoon.I dont suffer from fatigue but I have to sit down often.I find that having a good balance ofmy time is very important.
My walking has gone downhill but there are other compensations.You can be fit and healthy and not appreciate it.Its all about attitude of mind but we have to be realistic;this disease can be very frustrating at times but I feel happier now without the pressure.I make my own routines but it dos not matter if I can't keep up as noone is pressurising me.
I haven't been very good lately about excercising.Consequenly I find even turning in bed is now difficult.My muscles are weak so you have reminded me why I should try and strengthen them.
Marie
ps Keep staying healthy Jeannie
I get the "stop yelling at me" a lot lol. I have a very hard time coordinating my speech and breathing. I can't get enough "umph" in my normal voice so I find myself yelling to project on the exhale so that I can keep my breath. It comes out to my husband like I am mad at him but I really am not at all! lol It's hard because he will react as if I am mad at him and then I find my self yelling, "I'm not mad at you!!!!!! It's just my brain injury!!!!arghhhhhhhhhhh! " sometimes there is an expletive in there because I do get very frustrated when I cannot communicate.
Jeannie Ball said:
Sorry Marie, I answered your message here with my IPhone. And I hate that auto correct! :0) I'm 52 as of last June. Working on my core strength and my legs strength (which I never really have so hard before these last 4 months now) makes me feel so much more stable than I was just a short time ago.
My last 3 MRI's I've had do not show anymore degeneration of my cerebellum. I don't know why or what I'm doing is contributing to that, so I have no choice but to keep up what I'm doing, that includes everything I've been doing no matter how small. I think everything I can do that is possitive will/can help me with my ataxia, and I think everything that I do on purpose.
My Dr's all say that no one can stop the degeneration once it's started, but my thought (and I've told them too) is there is always a first time for everything! Who know's where this will actually take me, but regardless what happens I choose to make my life as good even if I have one oz left in me. I guess I'm stubburn and turning it into something that actually is helping me finally! :0)
My speach is pretty good people say. I heard a speach therapist say at a NAF Confrance years ago to speak slowly and lower than I normally do, so I practice doing that and that helps me. Sometimes I get very high and start speaking too fast becsause I get excighted but I have to talk with myself and slow down. When I do that my husband says "why are you yelling I'm sitting right here?" That stops me in my tracks and helps me be awaire of going a few octives lower when I get on a roll! hahahahaha.
Hi Bluberry, I totally get what your saying. I've noticed a diffrence taking Yoga with my breaathing and talking, because I have been taught to breath diffrently while doing exercises ( movements) but I guess sometimes I forget to do it when I get excited so I have to talk to myself (in my mind not out loud ahhahahaha) to lower my voice,slow down and breath. :0)
My husband always tells me that I can't blame ataxia for everything, then I laugh because I guess I do but I think it's so true! :0) I think that when I drop something too and get angrey and in a lousy mood with myself. He says he drops stuff too but he doesn't have ataxia so no big deal everyone does. That makes me come out of getting pissy! :0)
What breathing exercises do you do as this is my problem also?
Hi Marie, I use a Yoga deep breathing the one with inhale counting inhale and exhale. I count 1-5-10 exhaling 1-5-10 depending on the day how I'm feeling and what my lungs will do that day and I'm told that moving on the exhale helps me move deeper and better too. I couldn't do 10 at first I had to work up to that. I did 3 and pretty soon it moved up itself the better my lungs have gotten.They were pretty shallow at first too, but I gradually got there with practice. My instructor reminds me that I need to just notice my breathing as I do this and it becomes more natural with time. But there are a few other breathing technics too that seem to help but his one I see that my lungs work better. I see this as lung exercising. The more I do it (work it) the better I can manage when I need it, that is most of the time.
I found this youtube video that kindof exsplaines it but keep in mind the breathing tec (they use a Buda thought but I believe in God :0) )http://www.youtube.com/watch?v=t7WFq17NxWA&feature=related
I do this one alot regularly before I need it so I have gotten the hang of doing it so when I need to do it I find it easier for me to focus and to do (hope this make since to you) :0). Yoga breathing that I do for stress is http://www.youtube.com/watch?v=ug8fITGHwd4
I find doing these on a regular basis helps me outside of doing yoga now too! :0)
Thank Jennie
Watched the video;gave me the willies as I believe in God too but will try the exercises anyway as my problem is breathing and talking not slurring and individual words.The breathing is bad first thing in the morning when I have been lying down.I can gasp out individual words but lung capacity and stringing words together is the problem.Not easy for a former chatterbox!!
Don't get stress anymore since I gave up teaching.As a Christian I was always a bit wary of yoga but I will do anything to help with this ataxia thing.
Marie
Hi Miss Cake2
I wasn't given the option of several MRIs.I have however had the tests which were just blood tests and no genetic link was found.My one and onlly MRI showed Cerebeller Atrophy but we dont know what is causing it. I had all te vestibular tests as tthey at first wasted a year going down that route.My origal symptom was just loss of balance and that was 5 years ago.Now I cant walk or talk but my cognitive skills remain the same and I dont get any pain or complications.In spite of all t his I am much happier than when I was well,stressed and suffered from depression.It s quite a relief to still haveall yyoour marbles but I would like to know what caused it initially.
I have a very hard time with everything first thing the morning!!! Balance, speaking, walking, and wow vertigo!!! It takes me a bit to get my "engine" revved. I have to "rev" in the form of exercise. Get things moving, get the blood pumping, get the brain awake, then do my harder exercises like singing. Singing is what I do for my breathing?speech now. Though I am sure that the exercise is also beneficial. I cannot talk when I am multi-tasking. For example if my hubs wants to talk to me first thing in the morning and I am barefoot (too much stim not enough balance) I will slur and or my balance will get worse. I can do everything better when I am either lying down or moving because I don't have to balance as hard as I do standing still. When I attempt something difficult I do it from those positions and from a non multitasking POV so that can focus soley on the new more difficult task. Maybe try singing or better yet humming from a very well supported chair? ;)