I believe I have gluten-sensitivity ataxia, but none of my three doctors (naturopath, general practitioner, kidney specialist) have heard of it, so am continuing a gluten-free diet. I had a test for gluten sensitivity a few years ago, which was negative; my naturopath told me the test showed I didn't have much in the way of other sensitivities either, and that the ones I obviously have are digestion-related. I think because I'd already been pretty much GF prior to the blood test, it was probably a false negative.
So for the last few years I've gone in and out of following a GF diet, sometimes eating lots of it. I've gotten sicker, and for the past couple of years have had episodes in some evenings, always awhile after eating dinner, of slurred speech and loss of balance. They last only about a half-hour to an hour, and are always followed by being "knocked out" (have to go to bed) for another hour. The episodes make my head feel very heavy, as if I can barely lift it. I haven't read anywhere of GF ataxia happening only after a late meal. Has this happened to anyone else on this forum?
Recently I found an article listing many more foods than the obvious ones as possible irritants, saying that some people's bodies identify them as having the same proteins as gluten. To me, that would explain why my diet has had to be so ridiculously restricted - I have digestive reactions to almost everything. I can safely eat only meat (no fish, nuts, beans, legumes or other proteins), and most, but not all, vegetables (no starchy ones, no fruit). Needles to say, I'm underweight, but have been skinny all my life, so that's okay. I feel way better on a GF diet, but it's tricky when I seem to react to practically all foods.
Anyway, mainly I just want to know if these symptoms are the same as anyone else's here? If they didn't always come on after eating, I'd get tested for some other type of ataxia, but there's no doubt in my mind that it is gluten ataxia. Also, while I was eating gluten off and on, the episodes were gradually getting worse.
Hi Klutzy - thank you! I'd actually been mostly gluten- free for years before getting the test, so I'm sure that's why it was negative. I react to almost all foods, so thought the test would indicate which ones were the worst; alas, it showed only a couple foods. Anyway, I may retake the test now that I've glutened myself into this state of having ataxia episodes; maybe the results will be more definitive. Or I might just continue trying to do this on my own by remaining completely gluten-free, and see if I get better. I appreciate your suggestion! Have a great day.
Before my recent blood tests showed in high range of inflammation, for other symptoms that appear rheumatic versus my neurological symptoms, my chiro offered to give me a food sensitivity test for every single type of food. The test is pricey, $300 or so USD. I never heard of a test that checks every type of food since I thought there are only tests for lactose or gluten sensitivity.
Yet once she got my blood tests back from hospital, she said a food allergy test would not cause the high inflammation. However, one day I still want to take it because I think it would be good to know if I'm allergic to any foods.
So maybe there is also a different type of food that is causing your symptoms. I don't know. You know your body better than anyone, so follow your gut (literally and figurately). If your symptoms only happen after food, then once you find the trigger, hopefully your ataxia will get better, or at least not progress. Best of luck to you. Please keep us posted.
Interesting...was the test for "true" allergies or for food intolerance/sensitivities? For some reason (which I may have invented in my own head) I thought that food intolerance always caused inflammation. I had a battery test of twenty foods back in 1985, which showed some high-level intolerance foods, dairy being literally off the chart. At that time, those foods were making me extremely sick; so I cut them out immediately and got all the way better - for a time. Then I started getting sensitivities, one by one, to almost everything. I was surprised when the same type of test a few years ago showed almost no food sensitivities. As you said though, we know our own bodies, and I had to cut out many more foods in order to function. Gluten was identified for me by another naturopath, but she'd said she didn't like to use tests. I was a little disappointed by that, but found that when I cut out gluten, I was again feeling better. So gluten is definitely a huge problem for me (and probably most people!), and I'm trying the approach of being as strict as possible to cut it out all the way. I'm anticipating that this will rid me of the ataxia symptoms.
I hope you find out all you need to know to help you get healthy! It can take years - especially when having to wait for new research, but also using trial and error methods. Best of luck to you - you're condition, as well as those of almost everyone on this site, are so much worse than mine. Take care.
This is an all food allergy test. I will ask my chiro the name of it since she was going to order it. Yes food sensitivities can cause inflammation but not in the range mine are. Mine are showing in the high range, which indicates chronic-long-term inflammation, like inflammatory and/or auto-immune diseases, in addition to the neuro issues I have, related or not I don't know.
Like you, I tried on my own years ago staying away from certain food. But I did not notice a difference, as you did. However, I agree with you that many have undiagnosed food sensitivity because of how they're putting so chemicals on crops and how they changed the making of wheat and other things.
All I know is 5 years ago, when doctors and a neuro dismissed my symptoms as stress and made me feel that it was just a figment of my imagination, there was evidence on blood work that something was wrong, other than obvious neuro symptoms they saw. My bloodwork was off back then, showing low albumin, which I later learned is common from inflammation. Yet they told me I was dehydrated and to eat healthy. I told them I drank a lot of water and ate healthy, but they did not care and decided that is all it was. I was tested for things at the time like diabetes and hypothyroid, but they were negative.
Since I, like many patients, did not fit in their little box of exact symptoms in a text-book order, they did not care to find out more. Sorry for my rant, but I've read story after story on various sites of so many people who have been dismissed by doctors. It's just ridiculous! And our US healthcare is too expensive and too many have such high deductibles. I hope something changes. I also truly hope the longer you go gluten-free, the less symptoms you have and/or they disappear.
Thanks for your wishes for my good health! Did I already mention I also live in the US? I know - our healthcare system leaves a lot to be desired! I don't want to get too political and offend anyone, but I believe that too many of our citizens are absolutely paranoid about "socialist" healthcare - I think we could do with some of that. Anyway, you've been on a long quest too, and I relate to the frustration of being brushed off by doctors, and their textbook diagnoses of everything, regardless of what the patient is saying. It's demeaning. And it's hard to keep pushing for answers when things you say are discounted - it makes you doubt your own reasoning and go off on the wrong track, looking for answers that don't fit. Here's some encouragement from me to you to keep searching. Every now and then you find an outstanding doctor who listens and gets it. Funny, because it's not that hard for them to do...I absolutely believe you! Keep up the good work of advocating for yourself. (-:
I didn’t know you are in the US, so hello fellow American. Glad you understand!! I agree with all you wrote. We need Medicare for all here. The ones who are against it are the upper middle class.
My friend, who has diabetes, won’t get the treatment she needs because her family’s deductible is $6,000. My deductible is super high as well. Our medical system is broken here.
Yes some doctors are demeaning. Years ago I learned about Ataxia when I saw two YouTube videos of people who did the tandem gait like me, one had Cerebellar Ataxia and the MS w/ Ataxia. Yet too many doctors and neurons don’t even know about it. Truly sad!! Thank you, and it’s nice to have people who understand.
Amen to all you said! Our deductible is very high, too, and although we live comfortably, I'm often hesitant to spend exorbitant amounts on medical stuff - especially if it doesn't help in the end. That's worrisome about your diabetic friend - yikes! I hope she does find some way to get what she needs.
It IS nice to have people who understand. I'm glad to have found this website, and to get other people's perspectives on ataxia and related problems.
Sometimes I think that what I have isn't ataxia because it happens only once in awhile, and is short-lived - but then I think that there aren't many things that would cause both stumbling and speech-slurring at the same time. At times during an "attack", I'll say a word that's not even close to what I meant, and it comes out slurred gibberish. I'm fully aware of it, too, and of everything else that's going on, even though I sound and appear as if I'm very drunk. The good thing is that afterward I have no lasting affects whatsoever.
But it sounds like you do, at least with your gait. So sorry to hear that.
We need a Sheffield medical center that treats gluten ataxia in the US!
If you look up episodic Ataxia, sometimes it can last just for minutes. You’re right that there’s not too much that causes slurring and stumbling. The other other thing I could think of for your situation is TIA, but it seems unlikely since you notice a trigger of gluten.
Again, I agree with your points. Yep, we need services like the UK has. Days ago, I called our National Ataxia Center in MN during the day, and no one answered. I got their voicemail. And too bad we don’t have o nice website like this in the US. So it’s nice we’re welcome here on a UK site.
Here’s some information on episodic Ataxia. The U of MN site says episodes can be just minutes, but the NIH states seconds. Either way, it’s for brief episodes.
And it’s not just my gait. My hands are deteriorating, like with fine motor skills. I also have a tremor in one hand when I hold something, like a pitcher of water. So I envy you that you don’t have lasting effects during your episodes. Hope it stays that way for you.
Oh no, your hands! That must be frustrating, and difficult to navigate. How debilitating - what a strange and awful disease.
I did research those two conditions, but there are a number of things that don't apply to me, even though there are some similarities. So, of all the types I've looked at, this is the only one that seems to fit. Now that we're all(?) getting vaccinated, I may visit my regular doctor and ask him what he thinks. I've seen him just once before, (right before the pandemic) and at that time he'd said he'd never heard of this type of ataxia; but maybe he'll have some advice or recommend testing.
I appreciate your input! And I wish you were well.
Yes it’s worrisome on my hands, and my friends laugh at how bad I text, but they don’t understand why since it’s not happening to them.
But as I read here and elsewhere, many have it way worse than me. I’m trying not to complain but really annoyed at the situation, compounded with other symptoms, possibly unrelated.
Problem is your regular doctor won’t have the knowledge on the types of it since he’s not a specialist.
If you go to National Ataxia site in MN, see below, you can find specialists in your state that deal with Ataxia. Mine unfortunately has only one clinic, and it’s impossible to get an appointment.
Thanks for sharing. I had an episode last night after eating from my favorite place 🥴. And all this time I thought it was me being “extra” as I instantly felt like a pile of “blah”- meaning absolutely numb and heavy on my leg side and my back spasms lasted for over an hour last night. Thankful for my husband and his constant support- my extreme pain level brought him to tears and forever the record; I HATE ATAXIA AND ALL IT’S RELATIVES 🙃. Have a happy Saturday.
That sounds utterly dreadful! None of my symptoms are painful, and the more stories I read here, the more I'm grateful for my relatively good health. I hope you feel well today, and also have a great Saturday (Sunday too)! Take special care...
There is a specific test for Gluten Ataxia, and to get a reliable result the patient needs to have ingested gluten as normal for at least 6wks prior to the test. It’s possible to experience the symptoms while basically having Gluten Sensitivity.
Gluten ataxia is a rare immune-mediated disease in which the body's immune system attacks the nervous system as a reaction to ingestion of gluten. It can be related to celiac disease as well as non-celiac gluten sensitivity.
Thank you, Wobblybee. I had that test years ago, but had already been mostly gluten-free for years, and it showed no gluten sensitivity. My naturopath told me that the part that tested for Celiac was still accurate, so at least I know I don't have that. I might go in for the test again now that I've eaten more gluten over the years (and ended up with symptoms of gluten ataxia), but I'm debating whether I want to pay hundreds of dollars out of pocket. I might get the same result. I'm sure this is what I have, since the episodes happen only after an evening meal, so I'll stay off gluten and see if they go away. If not, I'll see my main medical doctor again and make a big deal out of it. Thanks again for your input and concern!
Yes, that's a challenging one! Some years back I suspected having the condition too, and went on a diet for it, including drinking pau d'arco tea. I got completely better. These days I also react to sugar in all its forms, including starches, so I have none of those symptoms, and know I don't have it. So many avenues to go down, and you sound like you've been down so many! I'm glad you're on this site, helping people. (-:
Hi I have intermittent ataxia but my triggers can be anything. I sometimes noticed that I have to get off from milk products for a while as my symptoms gets worse but then after a month I can get back to it. So weird. I haven’t done any test for it as I only been diagnosed a 2 months before pandemic so I would have no chance to have it done I guess. Sometimes I just think maybe I find any excuse to blame on ataxia 🤦🏻♀️Lol.
This is more helpful than you know! Your symptoms sound so much like mine. At first I thought it was gluten ataxia, then after believing I'd cut out gluten, I continued to get them, so thought it must be something else. Then I recently came across an article listing a lot of foods that your body can identify as having gluten proteins, even though they're gluten-free foods. I went back to thinking I do have gluten-sensitivity ataxia, making sure to stay off those foods as well. So far, no episodes, but it's been only a couple of weeks.
I have a long list of food sensitivities, and like you, at times I seem to get away with eating a few of them - but not for long. Right now I'm being very strict about staying off them. Do you think that by sometimes eating dairy products or whatever, your body may be quietly boosting those levels of antigens/ antibodies that eventually bring on another attack? I'm wondering if by avoiding them, you can get better. (I know...easier said than done!!)
So, do you mind if I ask what your symptoms are? I'm curious as to whether they're the same as mine.
I know - the pandemic has interfered with plans for doctor appointments! I wish you all the best with your health. Sometimes it can feel like one, long experiment. Thanks for your comment - it makes me feel like I'm on the right track. I'll be very interested to know how things go with you.
Hi, so sorry about late reply- didn’t get notification alert 🤦🏻♀️. Well, my symptoms were kind of pregnancy/ cravings like lol 😂, gag reflex, fatigue which is most common for me, basically I just couldn’t even go near certain foods ( e.i. milk). I hope u are going to get your answers soon and best of luck x
Hello, aburt - nice to hear from you! (I'm never concerned about "late" replies - people have all kinds of things going on in their lives, including not getting notification alerts!) Your symptoms sound really unpleasant.😕 I'm feeling so much better now that I know which foods I can't tolerate, so I think I actually have the answers I need. I hope you also can figure your diet out and feel totally well. If that happens for you, I'd love to hear! Good luck, get better.😊
Hi Ruby,You know your body best and what works for you. I am in the UK. I have coeliac disease, I am very strict and eat a limited diet. I haven’t responded to a gluten free diet. I know you are in the States. There’s a place in the UK called The Sheffield Ataxia Centre (SAC) at the Royal Hallamshire Hospital led by Prof Marios Hadjivassiliou and Dr Shanmugarajah. I read Prof David Saunders (he’s a gastro) book Gluten Attack and came across a chapter dedicated to neurology written by Prof Marios H.
I had ataxia because of nutrient deficiencies. Long story. Recently, I saw my gastro and my ataxia had come back within the last 5 days. Like all Drs, they said it’s your anti epileptic. I upped my B1, iron, folate (which helps with my vitamin B12 deficiency which causes ataxia) and restarted my vitamin E (also causes ataxia) would you believe it - 5 days later I’m walking normally. My knowledge is from a dietician and functional doctor.
Like yourself, I took an intolerance test - a sample of hair. It was quite extensive. It was ironic that food I have never liked showed up - mint, lamb, white wine. I rarely drink but remember having sores on my tongue after once having a glass of bubbly.
Your health history is complex and interesting. I feel really fortunate to not have coeliac disease. Thanks so much for the link! I read a couple articles recently by Dr. Hadjivassiliou, which was what convinced me that I have gluten-sensitivity ataxia. I'd looked for more articles by him, but didn't find much until you sent me the link - it's so helpful! I will bring some of that info to my next naturopathic appointment and discuss possibly being tested again for gluten sensitivity; I don't know if her test is the same as Dr. H's. The good news for me is that I have been rigidly gluten-free for 28 days, and have not had a single ataxia episode. Now I'm convinced of my self-diagnosis (so probably don't really need the test). I'm going to take a look at the book you mentioned, by Prof. Saunders.
I wish you also could have a quick and easy remedy! Thank you so much for this info. Take care...
Sorry Rubycubie,My alerts haven’t been flashing up so I did not realise you had replied. I would never be so ignorant.
That is wonderful news about your ataxia and going gluten free. I am glad to help. We know our bodies best. Prof Saunders is the Chairman of coeliac UK and it is an easy read with a couple of funny bits.
Hi know it is a time since you posted but these are my thoughts, you might find them helpful?Firstly most Ataxia’s can’t be treated but those that are autoimmune, where the immune system goes into overdrive and “attacks” the vulnerable cerebellum , might be.
Autoimmune conditions include thyroid problems, RA, diabetes 1 and maybe 2, AS among others. These will be producing inflammation in the body.
Doctors and specialists can short sightedly not believe this.
If you feel you have gluten sensitivity causing your ataxia symptoms then you must completely avoid all gluten, not just now and then. If you are right then the gluten can cause irreparable damage to the cerebellum.
Other grains can mimic wheat protein plus the added problem of cross contamination. These will bring on ataxia symptoms.
Dairy can often be adding to the ataxia symptoms and for me rice which is a lot of GF foods. A cross reactive food test will also pick up amber foods that you may need to eat in moderation.
Unfortunately like I said health professionals rarely understand or believe in intestinal permeability or leaky gut which over time from ingesting a food “sensitivity” can lead to autoimmune.
If this is your case then no 1 you need to remove the offending food/s.
Alcohol does effect the cerebellum a lot too.
You will need to find a good nutritional therapist to guide you through all this and gut healing plus the best supplements to take.
I live in the UK and yes we do have the London clinic and Sheffield but the wheels of the NHS turn so slowly it can take months or longer to get appointments.
So to get these answers I have had to take advice and pay for it too.
Our NHS labs are not sensitive enough to pick up all answers and yet our neurologists act on the results. A major flaw there!
Hope all of this is some help. I will end by saying to go with your gut instincts and be patient with GF as it can take a year or two.
Yes, your comments are really helpful! I'd actually withdrawn my name from this website, but happened across something on the internet that brought me back to this site, where I just now saw your post and signed up again with healthunlocked.com - otherwise I would have responded sooner. I've made some changes since I left this blog site, and your comments are truly enlightening to me at this point!
I decided to try a gluten challenge and retest for celiac disease. I bought two tests from an independent online lab (requestatest.com), and started eating a lot of gluten. They say to keep it up for two weeks, but with other research I've done, official celiac disease sites say to eat gluten for at least three months - which I intend to do. Then I'll go have the blood tests.
The oddest thing has happened though. It would seem that gluten is not bothering me in the least at this point, and the ataxia has stopped. (I've been eating gluten for two weeks.) Other foods, such as eggs and dairy, still bother me, and I'm sure there are others (most likely rice, for one). I've been in such a bad way with dietary issues for many decades, and right now it's as if my system has corrected itself. I don't understand it at all, but your observations have given me new things to think about. I'm planning to get my tests sometime in September, and will post on this site what the results are at that time.
Incidentally, I've also cut way back on vegetables, which usually don't bother me, but recently some of them have. I've wondered whether I'd been eating too many vegetables before (usually a large serving with each of my three daily meals). Everything always seems to be a guessing game! It would be nice to have definitive answers, but again, what you had to say at least highlights the changing nature of food sensitivities. It may end up being that I just have to accept whatever changes come my way, and right now they seem to be going in a positive direction for the first time in forty years...(yay!)
Thanks again for your thoughtful response. Wishing you well.
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Do you think Cerebellar ataxia of unknown cause is a diagnosis?
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