So I woke up feeling “celiac off” yesterday. I went to bed feeling really “off” last night. And this morning, I’m feeling so “off”, I just put a note outside my home office door that says “please do not disturb”.
When I’m feeling this “off”, human interaction is not my friend. I’m agitated. I’m irritated. Let’s face it…I become an a**hole.
No…I have no idea what happened or what I ate that was the culprit. It’s the crap shoot that is our disease. We eat outside of our home, we run a risk. We can mitigate that risk as much as humanly possible, but it’s still a risk.
I’m amazed, even after all of these years, how much celiac can affect my entire being when I ingest gluten.
And this is the perfect segue into an email I received recently that deals with Gluten Ataxia.
What is gluten ataxia?
Well…ataxia is a lack of muscle coordination which may affect speech, eye movements, the ability to swallow, walking, picking up objects and other voluntary movements. A person with persistent ataxia may have damage in the part of the brain that controls muscle coordination – the cerebellum. (Source: Medical News Today).
Gluten ataxia occurs when the antibodies that are produced in response to the ingestion of gluten attack the cerebellum. Left untreated, the condition progresses, causing irreversible brain damage.
I was not too familiar with gluten ataxia until I received the following email from a fellow celiac:
Hi Gluten Dude,
I am a 29 year old male and I was diagnosed late last year with Celiac Disease and Gluten Ataxia, after what was, the doctor’s think, at least 10 years of undiagnosed suffering. Undiagnosed because I was largely asymptomatic until the later stages of the disease.Right around the time I went to college, the first symptoms started to arise in the form of chronic acid reflux and an ever swelling little pot belly.
Despite being a runner, my gut continued to distend and grow over the course of my 20s until my once 5’11” 160 lb runners frame had blown out to nearly 230 lbs. My self image became pretty well shattered. I was frustrated because of my inability to lose weight despite constant exercise, and attempted dieting (though I was always, always hungry).
Right around 2011, I started dropping into bouts of depression, initiated by a variety of things but largely because despite everything I did I never felt good, I always felt sick. My blood sugar would frequently crash, I was catching mystery illnesses all the time, and the doctors would chalk it up to my obesity and “poor” lifestyle.
In 2014 the symptoms started to go neurological, with frequent dizzy spells, and slow loss of motor control first in my left hand, then the left side of my face and tongue and periodic feeling of drunkenness.
Late last year the Gluten Ataxia blew up, until one night, after a quick dinner and couple beers with friends, I spent the evening on my bathroom floor, unable to swallow, choking on my own spit, unable to control my muscles well enough to do anything but crawl across the floor to the toilet, where I had to let the spit just drool out of my mouth rather than what felt like drowning on it.
I’d had enough then of doctors putting me off. I sat in waiting rooms and demanded that they fix me, and eventually they figured it out. My small intestine was severely damaged and I was holding an inflamed mass of water around my gut. The MRI showed lesions on my cerebellum from the Ataxia, brain damage that will never go away and always make my fine motor control in my left hand difficult.
6 months after the diagnosis, and an extreme diet that also rid me of dairy, I do not remember feeling better in my adult life. I’m crying here as I write this. I dropped 30 lbs of inflammation in a month. Though I’m not as skinny as I was, I’m now a much more manageable 190 lbs. Though my diet is limited, I enjoy food in a way I never did before, now free of reflux, bloating and cramping. I am, by every metric, a happier man.
Thanks for the opportunity to let it all out on paper Gluten Dude.
Crazy, right? Brain damage caused by something we eat.
This disease never ceases to amaze me.
I had a misdiagnosis of MS for YEARS! This was it. In fact, often the first hint I will get after being glutened is being off-balance. Unfortunately, the lesions can also cause damage in the areas of speech – for me, it’s word recall. It will never get better. FORTUNATELY, the MRIs show it has not gotten worse after the dx. I take that as a positive.
Wow that is just incredible. So glad that you were able to heal yourself!
wow.. now i am wondering if my mom’s MS is really gluten related… She was diagoinsed with MS back in 1999 (her chiropractor caught it after 10 years of progressively worsening issues that her doctor’s just wrote off as due to whiplash…) but now, knowing my issues with gluten.. and I KNOW it’s in the family line.. and her mom’s line is the most likely source based on photographs and deduction… now I wonder… I’ve tried getting her to go get tested, or to try a gf diet.. but, according to her, it’s “too hard.” and I live 3000 miles away so it’s hard to really _show_ them..
I had a lot of problem with word recall right after the car accident that I think was the final “trigger” for me.. and it still gives me problems once in a while, esp if i’m tired, or stressed..
Please, does anyone know of a doctor who takes gluten ataxia seriously? I’ve got the symptoms, including biopsy diiagnosed celiac, but I can’t find a doctor who understands / believes in gluten ataxia. My neurologist saw that gluten can give me seizures. He sees damage i n my brain, but doesn’t know what it is. They want to send me to an epilepsy clinic to see if an operation will fix it, but nobody is considering it as the result of long term gluten ataxia. Please help me to find a doctor who understands it and knows how to treat it when a gluten free diet isn’t working? I live in upstate New York, but will travel. I don’t know that I could do New York City because I can’t walk much or think clearly.
Can anyone help me find a doctor?
Joan, did get an answer from anyone? I have the same problem and am also in upstate NY. If anyone helps you can you pass on the info?
Meg
Try Dr. Gomez. Albany NY. I know he takes his patients very seriously. Maybe he can help you.
I want to know more about this. I often wake up feeling like my head is clogged and aching. I have gone with a gluten free diet for 10 years at least though.. But planning to go naturally gluten free by avoiding all products that contain anything that used to have gluten. Anything to feel better. Thanks for this text!
Petra, have you been worked up for sleep apnea? A common issue with sleep apnea (was for me as well) is waking up in the morning with headaches. Just a thought. Good luck!
Hi Gluten Dude.
Sometimes i wonder about JUST how far the damage can go. I have not been diagnosed celiac but I am gluten and lactose intolerant and others… Environmental, chemical and other foods. I was tested for these allergies when I went to my neurosurgeon with a begin tumor in my Pituitary. 2 years after treatment they found a second tumor at the back of my head (which they plan on leaving unless they need to take it out as it’s in a bad place to get to). Between the treatment and the tumor it destroyed my pituitary and lots of meds are involved. I just sometimes wonder if gluten was the real cause.(?) I believe I was gluten intolerant from young but my parents could not afford (or knew how) to eat better or how it can affect a person. If my mother were alive I know this would have torn her apart.
Hi Frieda,
I have brain cancer, oligodendroglioma, and found out this summer I have a wheat allergy. I haven’t been tested for gluten, but am suspecting I might have gluten ataxia and am wondering if this is somehow related to my brain cancer/tumor. Have you learned of anything new about a gluten intolerance/brain tumor link since your last post?
Hi Jennifer,
I seem to have missed your response. I will be going for an MRI later this year for the tumor and will be asking them to check for ataxia (if they’re willing, which isn’t always the case). But no, I haven’t found or heard of there being a link. I feel that it is possible but the doctors don’t seem to even want to consider something like it.
Ataxia was one of my symptoms. I had no idea that what was happening to me was even related to gluten until I lost that tingly feeling that went from my left eye, across that hemisphere of my skull, down my neck, into my shoulder, and down to my left hand’s finger tips. It was one of the first symptoms that started to recede. I stopped dropping things randomly, running into walls, walking into tables and chairs, falling down, tripping, stepping weird so that I’d end up with sprained ankles fairly often. It was getting progressively worse. I was known for my clumsiness. One way I know I’ve had an accidental glutening is that funny tingling gets going in my left hand and up my arm. (That and turning into instant megab**** just before I go for penitence before the porcelain god.)
Gluten totally scrambled my brain. I knew I had words to say and couldn’t get them out. It made me anxious, paranoid, and squirrely. I felt like I was going crazy.
But going GF has mostly fixed me. I don’t fall down or have lots of tinglies; I don’t run into things. I’m calm and not a ball of nerves. And my mom and friends wonder why I won’t just take a bite of cake or pasta. This life is good. I’m not messing this up.
Wowser!! Does this sound like me to a T!! If I may ask, how long were you having these symptoms before being diagnosed celiac? I went 10 years, and I was diagnosed celiac by a MRI of my brain. The then doctor has since rescinded my diagnosis saying it isn’t the “golden standard” of Celiac diagnosis. I must instead go through the 8 week gluten challenge. There is no way I could do this after being GF since diagnosis in 2007. Just wondered what worked for you to help alleviate symptoms of ataxia. My symptoms were mostly motor control (running into doorways, tables, chairs), short term memory loss, and boy oh boy does it wrack with the self confidence.. Always questioning yourself. You can email me anytime. -Thanks.
Hi, Leigh Anne. I think the neuro symptoms started, or at least became noticable, about 8 or 9 years before diagnosis. They revved up in intensity about a year before diagnosis. I remember my roommate at the beginning always yelling at me for knocking stuff over because I would just walk into tables. One day I just dropped the coffee pot. No reason. My hand simply let go. I had increasing episodes like that. I don’t know how anyone put up with me. I had really vivid dreams that became more and more nightmarish but seemed real, and I remembered all the gory details. Migraines increased in frequency. The year I was diagnosed, it was like I had one continuous neverending migraine that waxed and waned in intensity. At the lowest level it was a buzzing at the base of my skull.
About three days after I ate my last piece of whole wheat toast with butter, I woke up with no buzz in my head. And I felt happy and peaceful and refreshed. About a week or two in, I no longer needed to nap after breakfast, after showering, after doing menial tasks. It took about a year to stop being overly clumsy. If I trip now, there’s a reason. If my body is greatly taxed/stressed, I do get a little tingly and do drop things. I don’t remember any dreams anymore. I think I’ve lost some mental sharpness; words don’t come as quickly as they should. The migraines decreased considerably, however they have not fully disappeared.
Only being 100% gluten-free and time have alleviated the symptoms. I had nerve decompression surgery on three nerves in my head to help with the migraines. That has reduced the intensity and length. I try to keep myself healthy with mostly whole foods — lots of veggies, bony and fatty fish, seeds, coconut oil, etc.
You know your body feels better off gluten. Listen to your body. Unless you feel you really need an official diagnosis, you know your answer.
P.S. Alegria25 is me.
OMG! I wonder if I was having the beginning signs of ataxia! One of the (many) reasons I started looking into gluten intolerance was because I was getting forgetful and would forget words in the middle of a sentence, I was starting to feel self conscious about it and was secretly fearing it was early signs of alzheimer’s. I also would bump into things, like walking in/out of a room and smacking into the door jam. I’m not sure if I can describe this, but here goes, I used to get this weird random sensation – could be anywhere – that was like a nerve suddenly firing in a pulse/throbbing like way it would last for several minutes. I kept wanting to ask my Dr about it but thought it sounded like I was just complaining about nothing. If you live with something it’s your normal so you don’t realize how not normal it is until it goes away!
Wow! You mentioned sprained ankles and it made me realize what is the possible cause of all those sprained ankles I had all the time before I was diagnosed with Celiac. I never made the connection before.
I have been gluten-free for 56 days since June 1 I feel a little better but I still have some balance problems I did break my foot And I am recuperating from this but how long before the ataxia goes away and I could really walk better without being scared please help
You are the first I’ve heard to describe speech that way. I have celiac and it happens to me too. I have the words, or the thought of words. Sometimes I can’t quite grasp the word. Sometimes I can’t get the words out and have to force it one syllable at a time. They come out a bit slurred. Is that gluten ataxia?
Does it occur only with ingestion of gluten or just pop up whenever it feels like it?
I’ve had this for 9 years and no doctor seems able to address it.
Some thirty years ago I was diagnosed with gluten ataxia by an ENT. My symptoms were just being dizzy easily. I love to contra dance but I feel the world spinning long after I stop turning. I grab my partner and laugh until I can stand on my own. There were meds prescribed but I found they didn’t make much difference. I avoid carnival rides at all costs. Even swinging on a swing will set me off. Seasickness is an issue, but the “patch” does wonders. I have read that the ataxia goes hand in hand with gluten allergy. This refers to it as a brain problem, but the nerve damage seems to have affected my ears the most. Your vestibular nerves are in the ear too. Now the big thing for me and a question no one has answered in the 32 years since my diagnosis is this: is this the reason for my severe hearing loss? I started to lose my hearing a few years after the celiac symptoms first appeared. There was a rapid progression that started to level off a few years after I went on a gluten free diet, though it still continued. I keep wondering if other Celiacs have had this happen as there is not other explanation for my hearing loss. And yes, my Celiacs was confirmed by upper endoscopy 32 years ago and reconfirmed this year. So I would love to know if this has happened to other Celiacs.
In 2010 I removed all gluten from my diet after discovering it was the cause of skin rashes and stomach pain. I felt much better until 2 years later when I suddenly lost all hearing in one ear. It has never returned, and I still have problems with vertigo. The doctors don’t have answers for me either, and I have also wondered if there is a connection.
i was diagnosed with coeliacs 18 months ago, in september last year i had a crazy vertigo attack i thought i was having a stroke, i then had another one two weeks later which took months to properly recover, i feel that these are related because now if i get glutened my head just feels really strange like im going to have another attack .
Celiac sufferer for 15+ years. Took 10 years for diagnosis. I have been deaf in one ear since childhood. I also was anemic as a child and had some symptoms of celiac but no one new what caused them. I have done some research since diagnosed. I found a book authored by a nurse who worked in a Gastroenternologist office. There were many Drs that contributed. One of the effects of celiac disease was loss of hearing in one ear and slight drooping of one eye lid. I have both. This is the first I have read about Ataxia, but it makes sense. I have the same symptoms as many of the others on this website.
The book sounds interesting. Is it available somehow?
The drooping in the eyelid started about a year ago for me. It occurs rarely. The doctor also found an acoustic neuroma in one ear that I attributed to too many CT scans. I have been gluten free for 9 years. My kitchen is completely gluten free. I rarely eat anywhere else.
Are you telling me then hearing loss (due to the neuroma) and then drooping eyelid could be because of celiac, even though I have been gluten free for so long?
My 11 year son is having so many symptoms, he has fell a lot with ataxia, I’ve sewed his chin up twice. He has been in PT for ligament laxity, he has air swallowing, he has been prone to 4 concussions, he doesn’t seem to catch himself when he falls, he has one droopy eye lid, he has gas and bloating after eating bread, he has migraines, mental fogginess, blank looks, his grades are down. My biggest concern is of course ruling out other things and I have had him on a gluten free diet for several months now and his symptoms are still on-going. I initially saw improvement but not consistent. I’m heartbroken over his developmental delays.
Yes I have severe hearing loss and vision issues. Lesions and rumors on the brain and TOTAL BRAIN FOG 24/7
I was having issues with my ears a few years ago, and one of the issues was that they’d get very itchy inside and blocked up and I couldn’t hear out of one or both of them. Getting rid of gluten helped a lot with the itching, but over a period of a couple of years I discovered that sulfites & msg, as well as oxalates played a part as well. My right ear canal has only recently opened up more than it had been when I switched to low carb & healthy fats and low oxalate veggies. And the tinnitus is also greatly diminished. Hopefully looking into sulfites (used as preservatives and bleaching agents) and/or oxalates may be helpful for you also!
Yes! Except my doc thinks I also have fibromyalgia. I cannot hear anything during the day for the most part (and I’m home alone) but at night I put tv volume very low. Hmm, actually recently it has been getting worse. Ugh another neuro thing from CD. I can’t remember ANYTHING!! Not even if my life depended on it! And I drive people crazy bc as soon as something reappears in my head I interject. If you don’t know me you would think I was a complete rude person but if I do not get out my thought or memory of what I wanted to tell you 2 weeks ago or 5 seconds ago it’ll be gone in a flash
I wish I could give you a big hug and just tell you how NOT alone you are. In addition to a multitude of other effects, I forget words and how to string sentences together, and seem to be uncoordinated and clumsy when I’m glutened. It always seems to happen when I travel and stay with friends, no matter how careful I am. I had to cut out dairy, all grains, eggs, and a few other things. It does indeed limit one’s options for processed or pre-prepared meals but if you think about it the number of foods you can eat far outweighs what you can’t. You just have to become a home chef and be adventurous. And remember too that it could always be worse. Good luck! 🙂
Hey, I was the guy who wrote the Gluten Dude. And thanks. I was always a big home chef……homebrew beer and French food. Yikes. In fact many of my friends are chefs and we used to spend a lot of time cooking together. I LOVE cooking. And I’ll admit the first time I went to the grocery store post-diagnosis it put me in a deep depressive funk seeing all the food I couldn’t eat. But I’m well over it now and enjoy experimenting with food within my new limits. And my friends are great, treating me as a reference resource when designing new menus – through our friendship they’ve learned to appreciate the number of things which senselessly have gluten in them, and avoiding adding gluten to a menu unless its necessary for the dish.
My favorite post of all! That’s terrific that you love to cook and experiment in the kitchen. It makes being gluten free so much easier if you love cooking. People who can’t cook and get diagnosed just end up eating nothing but prepackaged gf garbage, so they’re really missing out and I think it’s definitely harder for them emotionally too.
This is so difficult to read. The GI doctor who diagnosed me with Celiac told me that gluten ataxia was the cause of all of my brain issues, including severe depression. Dizziness, pain, migraines, irritability, anxiety, depression, eye twitches, stutter, etc all ended once I went gluten free. I finally know what it’s like to feel “normal”. When you’ve never really felt normal and suddenly you do feel normal, trust me, there’s no other word for it but “normal”. But, if I get a little gluten poisoning from eating out (or wherever), those are the symptoms that resurface, not gut issues. I no longer get cramping for stomach pain, but intense brain/neurological issues. Also, I’m the opposite of the man who wrote this. He said he lost weight once going gluten free. I was extremely thin and was down to 95 lbs before I was diagnosed, but quickly gained weight once I was gluten free. He said it was because my body wasn’t absorbing nutrients and once it was gluten free it could absorb nutrition. It’s so interesting and scary how vastly different symptoms present themselves in different people. It’s no wonder doctors misdiagnose so often.
Hey – I wrote the letter. I was both starving and fat. The weight was all inflammation, almost entirely water. But I was meanwhile nutritionally deficient, which was causing major blood sugar crashes and fatigue. In fact, I was borderline for intestinal surgery the damage was so bad and I was having to go in for weekly, yes, weekly endoscopies for a while. But now when I get glutened, same as with you, the gut symptoms are far less, but I instantly get dizzy and minor aphasia and hand tremors. The gut reactions are less severe.
That is fascinating Marc. The more I learn about this disease the more amazed I am at how it impacts each individual so uniquely. I really hope that your health just continues to improve and that you never need surgery. The confusion for doctors seems to be how differently symptoms can present themselves and Celiac is not ever at the forefront of their minds. It took 20 years to get diagnosed because most of my symptoms were brain/neurological.
Omg! Same thing here! I actually have gluten intolerance, and when I somehow get the tiniest bit Into my body, brain fog, social anxiety, depression all hit me! It’s like an ongoing suffering, which I can’t escape, until the Gluton decides to leave!
Do you have any advice on how you get through your day when you have these neurological issues!!?
I’m sorry you’re feeling like a** today, Dude. May I recommend 3x220mg Aleve gelcaps? Works for me when I get an exposure. (do not abuse, but it helps with inflammation)
Ataxia…Yep. When I got my gluten intake way, way down-how far down there?-way way down there, so many of my neuro symptons vanished. As far as I can tell. Like I got fine control and feeling in my fingers for the first time. Also my speech became more precise as I got better control of my tongue.
Bad Gluten!! Bad!
I had an MRI on my brain about a year ago. Before I was diagnosed with Celiac (which took 40 years!) I had severe migraines and took fistfuls of pills to get rid of them. The MRI showed markings on my brain from the migraines. I had no idea migraines would do that.
I’m guessing I have gluten ataxia, but so far I’ve been unable to prove it. It’s so hard when you know something is wrong but doctors can’t figure it out.
Guy from the letter. Ataxia impacts the cerebellum. It’s distinguished from MS by concentrated lesions rather than general demylanization – or so I was told. So, it should show on an MRI. If not your cerebellum, it may be something else.
That’s good to know! Seeing as I go for MRI’s every year for a tumor, I’ll ask them to check that out too! Got to make a reminder – I will NEVER remember !
I clearly remember the day, a few weeks after going gluten free, standing in front of my bookcase and thinking, “I feel like I’ve had a dictionary infusion”.
Lori, reading your comment just made me laugh out loud, because it rang so true for me as well!
I live alone, my kitchen is totally gluten free.. I deal with dizziness, clumsy, balance off, sick to my stomach at times, wake up with headaches, depression ( I can cry at the drop of a hat). So many problems using my computer, need to check everything before I send it. Weak all over, the list can go on and on. Right now feel like crap so will lay down for a bit and it will pass but return after a couple of hours … Have an appointment with a neurologist in a few weeks, so will see what happens from there. I feel that just going to sleep would be the biggest reward for me.
Please don’t give up. This can get better and it will
Lately ive been having weird sensations in my head that makes me nauseous….im gluten free and my metaplascia has healed along with all the ulcers ….no acid reflux thanks to adding amino acids to my diet,what what what could be the cause? perfect brain scan ,perfect heart scan ,tested for tons of autoimm dieases none found,bloodwork perfect ,im wondering if my crystals are out in my ears because of the cold i had …possible i guess ,oh well ill just see how it goes! thought id see what u had to say…
I too spent many years suffering. I cannot even walk into a pizza shop of bakery without getting nausea and light headed. Nobody was there to help me understand me. I had my gallbladder removed from a surgeon just to still feel sick after eating. what boggles my mind is that he told me my gallbladder was bad and it really wasn’t. and that was the second opinion. Now I’m brain dead from killing myself with food.
Just before and after my diagnosis, I went through hell dropping everything and not being able to get out obvious words. It was so annoying considering I make my living with words! I got so angry at myself because I couldn’t understand why my stupid brain wasn’t working. This makes such perfect sense now.
Hello everyone. I want to start out by saying it is nice to “meet” you all. I have not been diagnosed with celiacs but i went gluten free before knowing you couldnt before being tested. I do know i am allergic to wheat and barley. I have had a lot of health issues and anxiety since i was 8 years old that they never figured out but always labeld as IBS. I then developed an eye movement disorder that hadnt been seen since the early 1900’s called oculogyric crisis. i also get muscle spasms but they tell me nothing is wrong, recently i had lost the wheat weight gain i called it but then the last 3 months i gained 20 pounds and they dont know why and of course dont know why but dont bother trying to find out. my cholesterol has increased. anyways. I have also been suffering and increase in severe migraines so they sent me to neurologists finally. i have seen 2 in a year both have told me that gluten ataxia doesnt exist which makes me mad because i know it does i have been researching it and with everything else i have been through it fit. please help. i just need someone to tlak to a support group i guess because i feel so alone with it when the drs dont ever listen until like 10 years later it seems
Hi Hollie!
Gluten ataxia really does exist. The medical community means well but they can’t agree something exists until after they’ve done a million studies on it (or if the pharmaceutical companies can make some money from it). Some are still arguing if gluten intolerance is really a thing. I can tell you, it is. I had some crumbs infiltrate my salad the other day and suddenly it was like I’d downed a bottle of jack at work. I couldn’t walk straight, talk straight, see straight, etc. You are most definitely not alone in this.
The neurologist I went to had me walk a straight line, follow his finger and lay down and get up twice. He said there was nothing wrong with me. He got me on a good day – most times I just turn too fast and I’m off balance.
So, while I type this with my slightly numb, tingly hands, I also wanted to ask if you’d been tested for other things as well. Hormone issues or vitamin/mineral deficiencies? Its hard when you can’t get doctors to listen to you. Hang in there!
You should ask for vitamin/minteral deficiency tests with your next blood panel – specifically anemia and Vit D. They can exacerbate the off-balance or dizziness. I was severly Vit D3 deficient.
And, I had one of those neurologists, too. Told me to come back when I had some “real” symptoms.
Bastards.
My first neurologist did the same sorts of little tests and told me I was just attention seeking. Why couldn’t he have seen my non-drinking “drunk” days?
Hollie – it definitely exists. Ataxia is a shrinking, or damage to your ceberellum creating certain symptoms related to sensation and motor control. The problem is, there’s no test to distinguish it from regular ataxia. A known heightened correlation to celiac’s disease and ataxia exists, and people with ataxia and no other celiac symptoms have been treated with a gluten free diet (versus other instances where gluten ingestion seems irrelevant). So, if someone has celiacs disease and ataxia……it’s a pretty good bet gluten ataxia is the form. The only way of diagnostically assuring that it’s not gluten ataxia is stopping gluten…and seeing if the ataxia gets better.
The doctors are maddening though. Many such diseases have a high correlation to celiac disease. The cure for which requires no prescriptions, surgeries or procedures. The prescribed diet is HEALTHIER than the average diet. What is the harm in saying “well let’s remove the gluten and see if you feel better?”
My story is unfortunately typical –
Went to a Dr. 10 years ago with complaints of bloating, joint pain, anxiety, dizziness, shortness of breath and what felt like a chronic sinus infection. He took a ton of tests w/ results showing a slight vit D deficiency. He told me I should get more sun and handed me a prescription for xanax urging me to ‘just give it a try’. Um, no.
Fast forward 8 years (everyone I spoke to in that time confirmed it was in my head so no need to go back) – symptoms progressively worse. Now I’m tripping, speaking strange, forgetting things, muscle weakness and burning scratches that would appear out of nowhere then go away leaving no marks. I run back to the Dr. – a new Dr. (although I briefly considered a priest) – He took a battery of tests resulting in carpal tunnel and again, low vitamin D. but nothing else. Ugh!
2 more years go by and we add post meal stomach pain, pins and needles in the eyes and throat, tiny itchy/painful blister by my fingers , vitiligo and bitchiness to the mix. I start my own research and according to WebMD I had every disease known to man, but I settled on gluten intolerance. I started a gluten free diet but that’s harder than it sounds because apparently the entire world is made out of gluten. And although there was some improvement, I’ll admit I cheated. As my eyesight, dizziness, speech, motor skills , insert some random brain function that most people take for granted here, etc.. started to decline, I decided to go back to the Dr. and ask him to confirm my theory.
Bingo. Not only that but I’m low in vitamin D (still), zinc, iodine and ferritin. My doctor doesn’t understand how all of that can correlate and wants me to take supplements for a month and go back – whatevs. I started taking the supplements and bam – a cluster of itchy painful blisters. More research and it looks like duhrings disease – a rare skin disease associated with the gluten intolerance / celiac and can present as both blisters and scratches most likely brought to the surface by the iodine supplements. I feel vindicated – although somewhat diseased… So I’m back to the MD on Thursday. I’ll tell him my discovery and see what he says – everything I’ve read said it can’t be tested without a biopsy next to the blister – which I no longer have because I stopped the iodine and treated with ACV – Internal and external – works like a charm ( only I need the iodine so I might be screwed here).
And, even after all of this, people still say “c’mon, it can’t be that bad” or “hm, that’s strange – you didn’t have all of these issues before” Right, because if you read what I described above, you can see where I must be exaggerating so that I can have this really super cool illness and impress people at restaurants and dinner parties when I tell them I can’t eat their food because it will make me sick.
Who doesn’t want to be us, right?
Robyn, has your vitiligo start to decline the result of gluten free? I have vitiligo too..
Four years gluten free my vitiligo has not improved–but hasn’t gotten any worse either.
Nope, still have it. Luckily its not on my face too much – a patch under each eye but its hard to tell (yes, I am that pale most of the time anyway 🙂 I’ve noticed a few more patches on my arms and legs. I’m hoping that if I can stay GF (meaning no CC) they will eventually start to go away.
Gluten Ataxia … yep. And still get foggy brained and feeling like someone drugged me if I get even the tiniest amount of gluten. I would hate to think of what would happen if I ate a lot of it. I don’t eat out anymore. I don’t eat at friends houses (I have lost most of my friends because I am “no fun anymore” … at least I know who my friends really are now, right?) Before diagnosis, I used to tell people my hair hurt!! It was the weirdest sensation ever. I even contemplated shaving off all my hair to try and get rid of the sensation. And migraines?? Bad ones. Really bad. With dizziness that made me want to puke. Way better since going GF, but it seems the gluten damaged some nerves pretty bad. Still have constant tingling in feet and fingers (don’t have diabetes), and no sense of touch on the fingertips. Can’t pick stuff up like people usually can with their fingertips. Gluten free since 2000, but because I wasn’t staying away from restaurants, and friend’s cooking, and food not made in dedicated facilities, I was still getting glutened until just about a year ago when I stopped all that (had only done it on occasion, not a lot) and started getting some of my medications compounded. My antibodies finally went into the “normal range”, but it took practically becoming a hermit for it to happen, for me. Since I have had symptoms (gut) since I was a kid, and I am now in the over 60 crowd, I am thinking a lot of my symptoms will never leave me. One of my worst now is ringing in my ears. That was horrific before diagnosis, calmed down a lot after going GF, but it is still there. I think gluten messes with the nervous system a lot. I just want to shake doctors silly when they refuse to believe patients have real symptoms simply because they themselves are ignorant about Celiac Disease.
I was diagnosed as Celiac in 2006, also with Crohns in 1992.
In 2013 a Neurologist told me I have Poly Neuropothy. Can’t feel my feet, similar to what happens to some diabetics though I am NOT diabetic. I have very little feeling below my knees and almost none in my feet.
Sucks, but I know why and I’m GF now since Nov of 2013 when the neuropathy was diagnosed. Before then even though I knew about the celiac I was hit and miss on diet.
I too, have issues with droppping things or missing them when I pick them up so I will be sending this article to my DR and asking to be check for Ataxia.
Thank you so much for highlighting the issue of gluten ataxia, it’s probably being mis-diagnosed in many people. I’ve had mild ataxia on and off for 16 years.
Can anyone relate to a delayed effect from accidental gluten consumption?
I am gluten free for 2 years now, and it seemed to clear up my neuro symptoms, I really felt better than I had for years..so last Janurary / Februrary I went on a trip to Brazil. I was seldom in full control of my meals, though I still tried to be very careful and got my Brazilian friends to explain my needs. I had 2 gluten accidents I found out about (unfortunately after eating) and I probably consumed accidentally cross contaminated food on many occassions during my trip..this was my first trip abroad gluten free, I had no idea it would be such a huge risk.. I was away for 6 weeks, and became very ill on the last week, I think this was a virus and seemed to recover quickly, but then I gradually grew more and more dizzy, and balance and coordination got progressively worse. I got home on 1st March and have been super careful and in control of my food since then, it’s now August, and I feel I’m getting more disabled, my walking is as if I’m very drunk, fatigue is so heavy and I have odd pains. My docs can’t find anything (sadly for me they are not that interested and are ignorant about the connection between gluten and nervous system problems ) though I’m finally getting to see a neurologist in a week.
Has anyone had delayed but long lasting ataxia from gluten, even though they are not consuming it any longer? Could it be that you don’t get symptoms till the antibodies have built up enough to do damage? I know you are not all doctors, but I’ve learnt loads from this site about the ways gluten can affect us all so variably, maybe someone has had a similar experience?
Sorry for such a long post, Thanks again
I have not been diagnosed with gluten ataxia, but had some of the symptoms so I know it is real. About two years before going gluten-free, I was having daily headaches and was slightly dizzy all the time. I remember walking through a store one day feeling like I was leaning to the side. I thought to myself that it is really going to hurt when my head hits that hard concrete floor! I was terrified that I had a brain tumor or something. I was having frequent panic attacks and would get tongue tied at times which was frustrating. Fast forward several years and with a strict gluten free diet the dizziness, daily headaches, panic attacks, and most of the brain blankness (I still have my moments…probably due to age, lol) have disappeared. With or without a diagnosis, my body and mind do not get along with gluten. Not one doctor that I saw for various symptoms over an eight year period suggested a possible food sensitivity…not one. I am not unfortunately very wary of medical professionals since many have made me feel like I was an over-anxious hypochondriac when in fact I just needed to remove gluten from my diet. They need to start training new doctors (and retrain the old) on the huge variety of symptoms which can arise from an intolerance to gluten.
I really appreciate you sharing this reader’s story, GD. Gluten ataxia doesn’t get nearly enough visibility, but it affects so many of us in some form. After getting glutened, I do things like list when I walk, slur my speech, get tongue tied/stammer, have problems swallowing, have strange eye issues, and neuropathy type symptoms of loss of feeling, pain, or tingling in my feet and hands. My son has the same symptoms when he’s glutened. I’m really happy that your reader who wrote in finally got his diagnosis and is thriving now. Last, I agree with you that we can be newly surprised each time at how severely gluten affects us. Still hoping for that black light style wand that you could wave over food, beverages, tables, etc. and have gluten glow away in warning. A girl can dream. 😉
Shirley
So can a guy 😉
Amen.
Thank you soo much for this article. I am at my wits end as to what step to take next. I have been gluten-free for 5 years when celiac was confirmed both via a endoscope and genetic tests. My recurring migraines and nightly upset stomach went away for several years and I was thrilled. I felt lucky that it was only a gluten allergy and not a nut or shellfish allergy because if I ever was glutened I knew I wouldn’t die (well it might feel like I might but it isn’t like people with shellfish allergies). Then a little over a year ago some crazy stuff started. I have been having “episodes” where it feels like the top of my head (where a baby’s soft spot its) is cut open with an ax (it obviously isn’t) and my left ear feels like it is dripping inside my head as well as the fact I lose vision in my left eye and my entire eyeball and eye socket hurt so bad. I lose control of my left arm and left side of my face. They confirmed I have neuropathy occurring throughout my entire body and there were lesions on the brain MRI done last summer. Ironically at the same time my left leg began to swell really bad and it feels like someone is cutting my leg off every night. It turns out that my leg issue is called lymphadema and the tests showed the lymph nodes in my left groin and left abdomen are blocked and there isn’t anything they can do for that other than wear compression and a brace on my leg. There are days I just drag my leg behind me and remain grateful that it is my left leg so I can still drive. I had a spinal tap done last summer to rule out MS but the hospital took 4 tubes of spinal fluid but never sent the script down to the lab so it sat there for 8 days before someone found it and it was too late to run the MS panel. I went to a second neurologist who is supposed to be the top MS specialist in the state to see what he says and I have my follow up appointment with him tomorrow because he ran a new MRI series and a VER test but he already said he doesn’t expect to find MS and that is his only specialty. I am going to print this post and thread of comments and bring it tomorrow and see if he thinks this could be it. I have good days and bad days, I am just finishing (or hope I am) a rough 6 day episode where I lost vision in my left eye again and the pain in my head has been so intense that it has caused me to have to pull over on the road to get sick. But I am gluten free already so I don’t know that it is really ataxia. It can all be so overwhelming just to get someone to listen. Every single doctor has agreed there is something seriously wrong but not one of them knows what it is. 🙁
I, first, want to say how sorry I am you are going through all this and, second, want to point out that sometimes we really think we are 100% gluten free when, in actuality, something is sneaking into our diets that contains gluten. I thought I was 100% GF for almost 15 years, but antibody tests told me I wasn’t. I was lucky. Some people don’t show positive on antibody testing until on gluten for quite some time. Maybe some things you thought were safe have changed ingredients, or something like that. I hope you find answers soon.
Thanks Deb. I appreciate your words of encouragement. Back in March I had a pretty rough stomach ordeal. they couldn’t figure out what it was and didn’t want to go in and operate just to explore (I agreed). At that point I made sure all soaps, shampoos, etc. were gluten free just to make sure that wasn’t the problem. Maybe I need to do another sweep of the house and see if there is something else I am forgetting. Unfortunately Lymphadema is just as much of an “unknown” or should I say not yet through the major medical studies so it isn’t a prominent research or medical topic. Whenever I have to talk general people (family included) or doctors about having celiac and/or lymphadema it is like talking to a brick wall. People just think I am on a new diet fad or am lazy when my leg swells twice the size it should be from the lymphatic fluid builds up.
Collette,
I’m so sorry you are facing this ordeal. I know how frustrating it must of been to think you had found a solution only to ball back into health problems. The unknown is scary, but hang tough, you will find answers to these issues like you did the ones before. You are supported by all of us here.
Thank you so much for your encouraging words. I am feeling better today which on one hand is a great thing but I wish the neurologist could have seen me the last 6 days when I was barely functioning as a human being. It is like when a car makes a noise and you finally bring it to the mechanic and it stops making the noise…
Collette,
You’re not crazy, and don’t let anyone with a Phd (or not) tell you otherwise. Gluten intolerance or allergy has many “faces”. No 2 people seem to have the same reactions to exposure. I will tell you what I’ve learned since my diagnosis… celiac, Crohns disease, diabetes, IBS, migraines, fibromyalgia, even cancer, and more are categorized as AUTO-IMMUNE disorders. Translation: our body’s natural defenses are having abnormal, even exaggerated reactions to stimuli. Many of us here have more than one disorder. Personally, I was diagnosed with migraines in 1985. Crohns in 1990. Celiac in 2003. Breast cancer and Lymphedema in 2014. Gluten has many “evil cousins”. It’s exhausting but you need to be absolutely sure you’ve removed any derivative of gluten whatsoever. If your doctor isn’t hearing you, find another one. There are amazing doctors out there who know what you’re suffering because they’ve studied up on it. For many patients diagnosed with gluten issues, we weren’t diagnosed overnight. If your “gut feeling” tells you something is wrong – listen to that inner warning system. Be patient. BUT BE PERSISTENT. I wish you a speedy answer and recovery to better health…
Last year I ended up in the E.R. with severe dizziness and difficulty to walk (I was walking like a drunk person). Also, I felt as if I couldn’t articulate words correctly. I knew what I wanted to say but the words couldn’t come out the way I wanted. After having labs done and not finding anything I suddenly remembered that a few days before I was glutened. Just as I thought: after a few days my symptoms went away.
Hi Guys:
As someone who has suffered my entire life and no doctor ever figured it out, I can tell you it has taken a longggg time for me to get a handle on my gluten-related symptoms. I use to have horrible migraines (longest one lasted 17 days, in complete darkness, no sound, in bed moaning in pain) and the Doctors all had me go on various migraine medications, which none worked and some made things much worse. After going off gluten, I actually got worse more headaches and oh the fuzzy days. I can remember going through “gluten detox” and running out of toilet paper. Getting myself to Target (which was a mission and a half) and standing in the front of the store and couldn’t remember why I was there? I walked around for 30 minutes and picked up a few things, hoping that it was why I went. Only to pull in my driveway and burst into tears because I remembered what I forgot and I had to go back to the store. Gluten fog, gluten fuzzy’s all eventually can lead to gluten ataxia.
Have you all heard of Dr. Perlmutter? He has a book on Grain Brain and here is the info that might help some of you, get a better understanding as well as your Doctors who have no clue. Hope this helps! 🙂
http://www.drperlmutter.com/about/grain-brain-by-david-perlmutter/
I self-diagnosed with a gluten sensitivity 3 1/2 years ago. My sister was diagnosed with Celiac about 15 years ago. I started having some odd symptoms that I didn’t really connect together, let alone with gluten. One of them was little dizzy spells that would occur while I was out walking the dogs. Another was a tendency to drift to one side while trying to walk straight. More troubling, I would wake up choking at night because my swallowing reflex wasn’t working when I slept. The worst thing was not being able to speak properly at times. I’d be slurring my words and tripping over my tongue, and end up explaining to people that I hadn’t been drinking, and was just having trouble talking properly. None of these things seemed frequent enough or serious enough to see a doctor.
Then I was visiting my sister in California at Easter. She had some wonderful hot cross buns and I ate several. I was hit with some severe vertigo and spent two or three days lying down with my eyes closed, the only way I could keep the room from spinning and myself from throwing up. All I ate was saltine crackers. At the clinic, after various tests to rule out a brain tumour or a stroke, they diagnosed me with BPPV and told me to take dimenhydrinate. I had trouble walking for a while and didn’t dare drive for about 10 days.
Weeks later, I accidentally came across information on gluten ataxia while researching vertigo and since I was familiar with a gluten free diet because of my sister, I decided to give it a try. Not only have I never had another bout of vertigo, all of the other odd symptoms cleared up within weeks or months. The neurological symptoms were scary enough that I am really hesitant to try any kind of gluten challenge, even though I’ve never been officially diagnosed. For what it’s worth, I thought I’d share my experience here.
I am realizing in reading these posts, that I think it is my time to go gluten free. Some of these stories are so heart wrenching and my heart goes out to all of you. As is probably very common for a parent, I have been too busy with my children and life to focus much on my own varying symptoms. I am worried that I have possibly allowed enough time to lapse for permanent damage to settle in on my brain.
My speech articulation has become flustering, I get migraines, am easily dizzy, have painful and tingling feet and get tingles in my hands (and arms) and have bouts of vertigo that leave me bed ridden. Furthermore, I have a continuously swollen lymph node on my neck (for at least 6 years). Some days it is more swollen than others.
Thank you so much for all of your posts. Reading them has been like pulling back a curtain. At least now I feel like I can try something that might help all of these seemingly random issues.
My question is this: does anyone have any suggestion for good books or web resources in going gluten free or is this a thing that most of you have done through a ton of research? Thanks ahead of time for any resources.
I first want to say thank you for commenting. Often I feel as if telling my story is not heard or not wanted to be heard, and so telling it seems like nothing more than complaining to many. I tell my story to anyone who will listen because of people like you. Even if just one person can figure out what is causing their symptoms, it is worth repeating over and over again. I agree you should be tested, but sometimes the tests are not the end all answer. Get tested. If negative, still go gluten free. 100% gluten free, and see if your symptoms improve. Many people test negative and think that gluten is not the problem because of that. But that is not always the case. But, yes, get tested for Celiac before going gluten free. I hope you find your answer.
You may get a ton of posts on this. I hope so.
One of the most common suggestions is to avoid changing to a gluten free diet until you have gotten tested for celiac disease. This is because the tests can be negative if your system is not continually being hurt by gluten, and if indeed it is a problem. I don’t know where you live, what sort of doctors and what insurance companies you are dealing with. But if you do have celiac disease and you get a confirmed diagnosis, life can be a little easier in dealing with them, and with others you may have to deal with. It’s probably, very probably, well worth it to hold off on the gluten free diet until you can get tested. I did and I’m glad.
Here in this blog you’ll find information for the newly gluten free. Some things, like gluten free soy sauce for Chinese dishes and gluten free pasta for pasta dishes are easy. If you cook, that is. If you don’t, my advice would be to learn/start. Live is so much easier if you do.
There is lots of information in this and other blogs, on celiac web sites, and elsewhere on going gluten free. For example, the magazine “Gluten Free & More” has some pages in the back of every issue which give information on what has gluten in it and on things like flour mixtures that are gluten free. It also has lots of recipes. It’s a good resource.
In this blog there’s a graphic chart of celiac symptoms that have been experienced by various people. Find it and take a look. You may find other things that you’re experiencing that point toward celiac. Print it out, check off the things that affect you, and take it to your doctor. It might help you get the necessary tests to get a diagnosis.
Do you need to do a ton of research? Maybe not, but it helps. And the internet makes it (relatively) easy. Read, read, read. This web site is a great start.
Thank you Deb and Dick. I will look into testing first. I hope that this is my answer for things that have been plaguing me for far too long.
Hi Deb: Sorry to hear that you have been struggling with your health so much. Dr. Perlmutter has lots of information on Gluten Ataxia & this might be a good resource for you. In addition, I started a website http://www.healthydoover.com & have written a book The Gluten-Free Guide for a Healthy-Do-Over. I did this because I have been suffering for decades & it’s been a long road regaining my health (and I’m still working on it) & I have learned so much during this process that I had to share it. Too many people are struggling with their health right now & don’t know what to do, or even where to begin. Best of luck to you & if you have any questions feel free to ask.
Hi, my husband is suffering from some kind of ataxia (problems with walking, swallowing) for 5-6 years. The MRI doesn’t show anything (in fact there is a small dystrophy of the cerebellum but not in a way to cause the symptoms) and has been tested for heredity ataxia(not found). The doctors give up on him,they just say “We don’t know”. I was wondering is there a specific test to determine the Gluten Ataxia. Thanks! 🙂
Hi. No expert here, but having had gluten ataxia as one of my symptoms of Celiac I did look into it some. From what I read, he should be tested for anti-gliadin antibodies. Possibly testing for anti-tissue transglutamase could yield some information because the protein is also in the brain. If doctors won’t test, maybe a totally 100% gluten free trial would help to see if the ataxia cleared up. He has to be eating gluten for testing, so don’t go gluten free before finding out about possible testing. And it can take some time for gluten damage to heal, so a gluten free trial should last several months at the least. Good luck to you both.
Thanks Deb, sorry for my late response. I’ve had trouble convincing my husband that this condition is real, since all neurologists over here (R.Macedonia) told him there is NO Gluten Ataxia. However, he went on gluten free diet for 8 days and stopped since he didn’t felt any improvement. On the other hand he suspects that maybe his condition is caused by some radiation in the house?! These 3 days he starts to have cramps on his legs. I would like to ask anyone if Magnesium did helped in some way.
I have gluten ataxia and neuropathy. When I went gluten free, it took a month before I noticed an improvement. I had to go grain free to feel well. Gluten free wasn’t enough. Getting enough minerals, including magnesium is important, but if gluten is the problem all the vitamins in the world won’t help! B vitamin spectrum deficiency can cause neuropathy too.
Hi Amy. I too have gluten ataxia and neuropathy. Had this for 18 months now, strict gluten free and no difference in my symptoms. Don’t really eat grains anymore except oats every morning. Take pregablin every day, can’t manage without. Will take the oats out and see if that makes a difference.
Don’t think I eat any other grains.
Thank you x
I have been diagnosed with gluten ataxia as well. At first my doctors thought I had MS or Lyme disease. I tested negative for celiac by biopsy and antibodies, but I do have the common celiac genes HLA dq2.2. One of my cousins has celiac and our grandmother had idiopathic neuropathy and ataxia and some digestive issues. My symptoms resembled hers, so I decided to go off gluten for a month to see if there was a connection. It took a whole month, but I started feeling better. Going completely grain free helped even more. My left side is affected more than my right, as well. I suffered for 3 years before diagnosis and I had IBS for a decade before that. My neurologist said I was lucky to still be able to walk- most people don’t get diagnosed soon enough. Getting glutened for me can also resemble a stroke. The first time it happened i went to the ER because my left side went numb, starting with my left foot and creeping up over several days. Then when the numbness goes, the nerve pain sets in for weeks until I recover. If you have neurologic issues, I highly recommend trying a strict gluten free diet because there is no other definitive test for gluten ataxia, unless you have celiac too.
I wish I had known all this.
My husband died in August 2104 at the age of 57. Hus diagnosis was Cerebellar Ataxia. Although never diagnosed as a coeliac he did have ulcerative colitis.
Since his death I have continued to try and learn more because I am nervous that our children may be at risk.
I am now pretty much convinced there is a connection between his stomach and problems and developing ataxia.
Could I have changed things, could he have still be alive if we had done things differently. It’s too late now – well never know.
I have learned since all this that this knowledge has been around since the 1990s but certainly here in the UK much of the medical profession still refuse to accept the link between gluten and disease. The evidence is there but they won’t join the dots.
It makes me so angry.
As I said before I just wish I had had this knowledge before. Maybe, just maybe, he could have stood a chance.
Keep up the good work Gluten Guy. We need more people to draw attention to th dangers of gluten.
Hello Eve and all others
My father died when he was 57 and he had too many of the symptoms mentioned above – as did, and have, other family members.
I suddenly acquired gluten symptoms when I was in my late 40s but did not know what was wrong. I can now see they had always been present i.e. no energy, terrible mouth ulcers as a child through until I became gluten free. Good home cooking had saved me from the worst for a long time. Then working away from home for the best part of a year, stress and staying in hotels, and I became seriously ill, although it would take years for someone to say gluten.
My father had visited every specialist he could find and they said they needed a new name for whatever he had because they agreed he was unwell but did not know why. Note I am now early 60s so this was a long time ago when little was known. I spent 7 years trying to get to gluten sensitive and to get there had to see a private GP. The NHS (UK) doctor I was unfortunate enough to sit in front of was of the opinion I was a) normal aches and pains for someone so old – 48! then b) a workaholic then c) a hypochondriac, it was a nightmare. I soldiered on until I was truly ill literally on my knees and then searched for a private GP.
The ataxia symptoms came later. I wish I had known of it sooner, pretty vigilant I would have tried harder still, but was it always too late? Getting steadily worse and worried about Parkinson’s as mother had it, or did she, visited a neurologist. He quickly reassured me it was not Parkinson’s, as did the later MRI. He then suggested gluten ataxia, new to me, and meeting with a visiting doctor from Sheffield for a chat. This was not to be for reasons I am not party to. Instead, I received an appointment with a gastroenterologist and it did not go well. The neurologist, and the gastroenterologist, are based at the same hospital almost next door to each other. The first quotes a research paper by Stuart Curry on gluten ataxia, and mentions Sheffield Gluten Centre and Professor Sanders. The second says ‘some doctors believe it exists’ … clearly he did not – just how many people are suffering due to bull headed medics who will not look outside their box.
The gastroenterologist has a nice system in place. You attend for a consultancy, you then HAVE a procedure or he will not discuss or see you further, you go back for a positive or negative. Negative you are IBS and through gritted teeth if pushed he will add IBS – gluten sensitive. He will not discuss problems outside of the gut, you continue to visit him to assess your vitamin efficiency and wow get cheaper GF bread and pasta. I was told he is always busy. As the world stands re gluten he will be. He does not want anything that will side track him, or anyone for that matter. I mentioned a book (printed this month) by Professor David Sanders, Gluten Attack. Page 100 made me wonder if he had read it as the conversation we had was almost word for word of that quoted by the Professor. His closing comment, ‘I will suggest to your neurologist that you meet someone in Sheffield’. I do not suppose it helped matters when I said I had read Professor Sanders book, twice, in one week – slowly! Annoyed with me he might be, but he just might read that book, although I have a sneaky feeling, he will stick to his guns. I strongly believe you should not wish ill on others but it would be nice if something would open a door into his ivory tower and assist him to see the error of his beliefs and perhaps reconsider his values.
Wow, GD. I love this interesting post and comments. It hits home with me and family members who are experiencing brain fog, fatigue. I want to add that many people with celiac experience vitamin deficiencies due to malabsorption. A b-12 deficiency can have neurological implications and unfortunately is ignored by many practitioners unless the level is in the “low” range where bigger damage to the brain can occur. Normal range is huge 200-1100? Low-normal B-12 of 200-400 is ignored but even on the lab report there is usually a statement that “some people experience symptoms in the 200-400 range” and need treatment too. My doctor wants me to be at above 550. A b-12 lozenge can help raise levels but some people get monthly shots and getting insurance to pay for this is another story. Gluten People… you probably are not getting enough B-12…Get your vitamins checked to be sure you are absorbing enough b-12. While you are at it, check folate, ferritin, vitamin D, essential fatty acids.
Hi
I was diagnosed with coeliac disease / gluten ataxia last August, I am 57. After reading these posts I realise that I have probably had this at least since being a teenager. It’s been a joke in our family that I am always bumping into things and have dropsy (drop things)’ migraines. I was a gardener with my own business ( which I have had to give up as no energy) and early last year my wrists started to hurt and thought it might be carpel tunnel so had a wrist splint. This developed to pins and needles in my hands, then feet, then up my arms and then up my legs, now know this as neuropathy. I still have this.
As my symptoms progressed I became extremely tired, in fact slept on and off all day and slept soundly at night too. I was really thirsty.
Dr thought as I was a gardener I must be being poisoned by something I had come across and as my symptoms were now so severe sent me straight to hospital. The next day I woke up and my balance had gone, I couldn’t get my words out, I was trying to do a crossword and couldn’t think of a 3 letter word for headgear -hat!!
This was very frightening for us all. I had been very fit, gardening, walking, running etc. now I couldn’t even walk in a straight line.
Had a lumber puncture as they said that they thought it was MS but luckily it wasn’t.
Allowed home while tests for MS, diabetes, limes disease were awaiting results.
Then whisked into Sheffield Hallamshire neuro ward, the first guy a Jr Dr who saw me on admission said perhaps it could be coeliac disease. The Proffessors said, no way is this lady coeliac. Hum, they should have listened to him.
Several MRI scans, nerve /sensation tests, possible brain tumour.
after a week sent home saying, we don’t know what you have, how long it will last or if it will come back – very helpful.
Back to hospital at Chesterfield where my husband and I said that we couldn’t go on like this. He had to stop working to look after me.
Decided that they hadn’t tested for coeliac disease as didn’t think it could be.
Gastroscopy confirmed coeliac disease with very low count.
We celebrated!!!! Everyone celebrated and I went on a very strict gluten free diet. Have even changed the dogs food so that I don’t get glutened.
Although I am a lot better, I still have all of the neuropathy tingling, and in addition now tinnitus, still very tired and itchy scalp.
Professor has said that it could take a couple of years to get back to feeling normal and able to go for long walks again, go running and back to work.
Sorry for this rant, but it is good in a funny way to know that there are others out there with this and have made amazing recoveries.
There is light at the end of the tunnel!!!!
Hello Gill and Natalie
I have just read your feedback. I wrote earlier 20th April 2016. you might want to read what I said at that time but will summarize here.
The neurologist I visited sent me for an MRI and this came back clear of MS, Parkinson’s, signs of strokes, something to do with ears and plaques for signs of dementia, etc. it sounds a bit unnecessary Gill to have sent you for a lumbar puncture to test for MS. it worries me how we are all pushed down the avenue that best suits the consultant, particularly when their avenue leads to an invasive procedure.
The result according to the neurologist – gluten ataxia. Then sent to a gastroenterologist to discuss vitamins. It was made clear he had a process in place and that would not change, no discussion on vitamins until finally I said, “you must at least be able to tell me what vitamins you recommend to GF patients”. He spit them back at me at great speed. He did not believe that gluten ataxia existed. I pointed out if it does and the neurologist and the Professor are correct and I was to follow his dictate to eat 2 slices of bread for 6 weeks for the gastro test then the ataxia would definitely get worse. Once off the bread I will improve but according to what I have read I may not get back to where I began.
Professor Sanders suggests this amount of bread prior to a test is now unnecessary but the gastro thought differently. When a genetic test was mentioned and I said I was just about to mention this myself he went silent. His way or no way, in other words an invasive test when now no longer a good idea. Professor Sanders notes that some patients do not want this test and the patient should be considered. A rare man. I have now organized the genetic test with a private GP. I could have done this myself online but I thought if the blood sample is taken by a GP and the results returned to him then they will carry more weight in the future. It takes three weeks for the results to come back.
You could say this is irrelevant as basically I have been left with a diagnosis of gluten ataxia and I am not about to eat anything with a gluten content. When I said to my partner it may not be gluten after all, a very level headed man, he said do not go back on gluten we all know the difference when you do. Ataxia – gluten or otherwise – is not good news and I have read it can lead to a wheelchair. To date medically everyone has gone quiet which is the reason I am pushing for a genetic test.
I too gave up a business Gill and it is not funny. I too started with pins and needles in my hands, fatigue, visual problems and a cold leg, very odd, years ago. Dismissed. The genetic test I suppose is now out of curiosity but I have digressed with what I wanted to say.
I decided to consider vitamins again even though the gastroenterologist had not been very forthcoming. I revisited a book I bought in 2005. This book was reprinted in 2009 and 2011 and that says something in itself. Bear with me, I visited the neurologist twice and each time he tested by steadiness. It was better the second time and he asked if he thought I could give a reason why. I said that I had suffered with flue or a cold for 5 weeks in January February, was not eating well and ran out of B12 and thought so what. After the visit to him I had gone back on it. The balance difference was slight but noticeable to both of us. However, he said all my blood tests looked fine, fine – define fine, in my book it suggests could be better. So I got out this book I purchased in 2005 and read it again: Could It Be B12?: An Epidemic of Misdiagnoses by Sally M. Pacholok (Author), Jeffrey J. Stuart (Author)
I spoke to the GP and asked for the reading for my B12 test, interestingly he had been sent a letter by the neurologist but not the tests or the results. He acquired the results and said the B12 reading sat within their guidelines – 559 (See Natalie above). I pointed out not within the guidelines of the book I had read.
I went for it. I increased by 25mg tablet to a 1000, the book said it was impossible to overdose on B12, I checked this on a number of sites on line, all agreed, the GP agreed. So reading the book further I upped by intake to 5 x 1000 in a morning after food. There was a noticeable improvement in three days. Speaking to the doctor I said the walk back from our village to home was approximately a mile and nearly all up hill. I would have to stop a number of times, and take it slowly. Even so I would arrive home out of breath, fearful of a stroke or heart attack and shattered for the rest of the day if not the next. With increased intake of B12 my partner noted, you never stopped once, you took it steady but arrived home breathing better than myself.
Still aware of ataxia but improved, and I thought improvement with my eyes, I upped my dosage to 5 x 1000 in a morning and 3 x 1000 at lunchtime and a couple on an evening. Amazing, if the book is correct I will get back to near normal if not fully. I will then reduce the amount but never come off B12 again. Now I am not suggesting anyone else do the same but I would suggest reading this book, nay beg everyone to do so. I do not know the authors, they are American and I am based in the UK. The change I have seen in myself in less than a fortnight is staggering, it feels like a miracle, I appreciate it could change. I will keep this site updated.
If you have anyone with or frightened of dementia, Alzheimer’s, MS, Parkinson’s, and the list goes on then please, please, buy this book. After reading this book I realize my mother may not have had Parkinson’s, more so when I consider her when she was younger and the symptoms mentioned.
Apologies for the lengthy replay.
Hi Kitty, Natalie
Thanks for your reply.
It’s been very strange having been diagnosed with this, yet nobody I meet has ever come across my symptoms before -I don’t have the stomach problems so other coeliacs and even my dietician hasn’t come across it so cannot advise except to say stay strictly gluten free.
If I get glutened accidentally my feet and hands become really painful and and get sleepy. weird.
The frustrating thing that I have found is that we may, when first diagnosed with coeliac disease also unable to eat other foods, I react to rice, gf oats dairy, and quite a few of the things listed as ok on the coeliac UK website.
It is great to come across other people experiencing similar symptoms.
Tomorrow I will go and buy some vitamin B12 and hope that I can regain some semblance of normal life and stop taking my pregablin tablets.
Thanks again for your help. Will let you know how it goes.
This sounds like what I have. For 16 years I’ve been ill- bad gastro issues, constant ‘pot belly’ even though I eat well and am an athlete, joint pain, rashes, dizziness, nausea, vomiting, fatigue, fuzzy brain, I fall down and run into things all the time, bad coordination, slurred speech, numbness in face and extremities, and get blood sugar crashes followed by several hours of complete paralysis. About 3 years ago I was tested for celiac and it was negative (there was a lot of inflammation in my biopsy but no flattening), but I stopped eating gluten and the symptoms have almost completely gone away. The rare occasion that I get glutened everything comes back with a vengeance. I can’t get doctors to take me seriously, and I’ve been tested for everything out there (they always think I have MS, which I don’t). What kind of doctor do I need to visit to see if it is gluten ataxia?
I have gluten ataxia and it’s very frustrating. I have such terrible malabsorption issues that it has effected my brain. I’ve been to three neurologists and it was the last neurologist that diagnosed me. I’ve had multiple MRI’s and CT scans.I’ve had more testing than i can even remember, inner ears, EMG’s VNG’s and on and on. I’ve got so many other issues going on including wicked anxiety and depression. I’m 50 now and been sick for the last 6years. I can look back now and see the steady progression of illness leading to the state I am in now. I’ve written before on this site but this was before my diagnosis. I fear I will never be well again.It is very frightening. I can’t coordinate my head and eye and legs to move together all at the same time all the time. It’s very frustrating. My balance issues started very slowly, now that i look back, it was 2013 when i started to notice I’d sway to the side when getting out of bed and begin walking in the morning. Only now it’s all day every day. My neurologist told me no more gluten ever again,he said, “Treat it like it’s poison and for goodness sake if you see something you want to eat and don’t know what’s in it, don’t eat it!” I’ve seen 19 doctors and it was a naturopath and a neurologist recommended by the naturopath that finally are helping me. This is so hard and i feel so alone, so very alone and so scared. Even though i know this is going to help me i have so many other issues, low vitamin D, low zinc, low b12, low vitamin K and Small intestine bacterial overgrowth and gastroparesis. I’m a mess. I can’t eat all the sugary gluten free treats i see or beans or seeds or raw veggies. I start to panic i won’t be able to eat anything. I am jealous when i see healthy people eating and drinking and walking and running and working. I had to quit my career in January because i could not stay awake or find the energy to walk from the parking lot to my office. I tried God I tried, i regularly vomited at my desk, fell asleep while working with clients (I was a counselor) I begged doctors to help me, give me more time off in a long term leave. No, was the answer from 18 doctors,yes 18 doctors. By the time i saw the naturopath(after 18 months of going from doctor to doctor to figure out why i was dropping weight at a rapid rate) she said yes and siged the forms but then I had been given 5 weeks to get well enough to return full time or be terminated. I am applying for SSDI, i am so embarassed to do this but i can’t work right now no matter how much i want that!!! I’m trying to find meaning in all this. Trying to make lemonade from these lemons. I just want to feel better and get my strength back. Thank you for your website i know i have much to learn. I hope to see improvement. I know i have a very long road ahead of me and it’s dificult to see the light at the end of the tunnel I hope my rambling e-mail made some sense. Thanks for all you do.
Hi Lenore. Your situation sounds a lot like what I went through. You will improve. It takes time. And you have to be very careful to avoid the gluten that can be hiding in medications, as well as food, and cross contamination can also be a big problem to get under control. Have you registered at the forums here? Lots of fellow Celiacs who could help you out in those forums. Get yourself on lots of good vitamin supplements. I found I had to take different forms of vitamins, like methycobalamin instead of cyanocobalamin for B12, vitamin K2 instead of K1, because my body could not convert the other forms, and mega dose (5000 iu per day) of vitamin D3 to get my levels up. I still take them, as well as magnesium, zinc … lots of supplements. I get tested every 6 months to make sure levels are good. We also found out I don’t convert or get rid of B vitamins properly, and at one point my B6 was so high it freaked my doctor out. I was taking only a small amount of B6 (it was in my probiotics) so my level should not have gone up like that. I also have extremely high folate levels, so I was checked for a genetic defect called MTHFR. Sure enough, I have that. So, anyway, lots to learn and, I gotta say, had I not been able to lean on the Lord through it all, I don’t know if I would have made it. It is a shame that Naturopaths are the ones who seem to be able to help us most but most insurance won’t cover them. My best regards to you. Keep looking forward. It will get better.
After 20+ years of not eating wheat, spelt, barley, or rye, I did a 23andMe genetic test a few months back that showed I’m homozygous for HLADQ2. Nothing like that had ever occurred to me to do, despite decades of raging food and environmental sensitivities. I decided to test for gluten sensitivity so ate 2 tablespoons of organic whole wheat daily for 8 weeks, planning for an endoscopy (which I didn’t need or have anyway, turns out).
My stomach and guts didn’t hurt or cause problems the whole two months, but my hair fell out.
The villi -destroying properties of the gluten seem to have triggered autoimmune alopecia areata.
I did the Wheat/Gluten Array 3 test with Cyrex Labs, and got 5 out-of-range positives , the highest of which is the gliadin for Celiac Disease.
My hair grew back.
Then several times I ate some really good organic corn chips this last fall, and a bunch of hair fell out, although it’s mostly grown back again.
OK, so no corn henceforth either, I get it.
Maybe I’ll try rice someday. (Or not.)
I had no hair problems at all, ever, before doing this wheat challenge.
I’m trying to figure out what the effects have been of 67 years of unidentified celiac disease.
Susie
My uncle is Celiac and also suffers from ataxia. His has become so bad that he can no longer walk talk or feed himself. His memory is fine and he has all of his faculties but he is trapped in a body that will not do what he wants it to. He is in a care home but they do not take his gluten free diet seriously and I am worried that this could be making him worse. Does anyone know if there is any research on this please
I have a brain injury, but not because of celiacs (idiot docs did it to me, then lost all records of that day…) but since the anti-boies in celiac diesies target preveously injured spots, i get anger issues, not thinking, and apsent seizurs (bad keybord =bad spelling, sorry)