Thank you for your comment 🙂 For me it definitely feels like anxiety exacerbates my symptoms and my specialist has also said he's seen this in other patients.
Same & the cost of gluten free foods is astronomical. It's why I'm going Carnivore now & only pay $3.50 a lb for 73/27 ground beef. I eat about 1 lb a day including all the fat. I do use some condiments to satisfy my taste buds. It seems to work!!! Well wishes ❤
@@EarmuffHugger Consider adding in some inexpensive foods like canned mackerel, canned tuna, carrots, broccoli, cauliflower, iceberg lettuce. Your body will thank you.
Thank you so much for this video! So how long did you have the symptoms before you found out would you say? I’ve been symptomatic for about six months and worried I won’t be able to reverse this. None of my doctors are listening but I do have diagnosed gluten sensitivity. I was put on a rotation diet (gluten once every three days) and now I’m experiencing something quite similar to you.
You are welcome! I had symptoms for around 18 months before I got my diagnosis and I have been able to reverse my symptoms and my MRI shows my balance centre has improved and my antibody levels are now negative. The good thing about this is that you can go gluten free of your own accord and don't require a doctors diagnosis to do that!
Oh, is that why my health/generalized anxiety pretty much disappeared when I went GF? I got a mild (weak positive) anti-gliadin test back in 2012, doctor said not to worry about it since I wasn't having stomach problems from gluten. I kept eating it until 2020 and a gluten filled vegan Tofurkey loaf TOOK ME OUT. So much stomach pain, so I cut out gluten. I went to the UK recently and ate some gluten and felt fine, but I'm back on the GF diet now just in case, I don't want the crazy anxiety and other issues to come back. Also have Hashimoto's.
Hi Carolyn, Apologies for the delay in responding. Most days I am totally without symptoms now, no dizziness, balance or ear issues. There are some times where I do see spikes in symptoms but these are always temporary. The main causes for these are illness like with a cold and flu, lack of sleep and tiredness, accidental cross contamination or consumption of gluten or oats, prolonged screen usage without getting up and moving around and finally travel on something that bobs up and down like a boat ride where there's artificial stimuli causing a moving sensation. How are you? Do you have similar symptoms to what I described?
@@DrTrevvy hello, thank you for the detailed response. I have had extreme dizziness for a long time. I do not leave my home. It is like i am on a boat at sea in a tsunami and hard to walk. I almost feel like I am floating and not walking anymore. I do movements like qi gong while sitting and breathing exercises. I get seizures at times why I dont’ want to go out and have an episode. The nausea is another horrible thing to deal with but I found that Cola Syrup and ginger tea help with that. I also get nerve pains, in arms and shoulders and hands that is not fun. I found that Salon Pas helps with that and icing it too or infra red heating pads . Besides all the crazy symptoms which too many to list here I am positive and happy and laugh and try to push through the crazy. I am just that kind of person . Looking to the positive and not on the negative. But it is literally debilitating and I am so happy you found solutions that made your symptoms lesson and improve. There is no way I could get in anything that “moves” like a car or bus or train , a plane is absolutely a big “nope” ha . I would like to see if I could get in an electric wheel chair though , just slowly move along to get outside . I cannot afford this … also a bed and a chair that lifts you up slowly . These 3 things would make life so much better. I am going to try the websites where philanthropists help people who really need assistance. I would love to find work online as well as I truly cannot work and have not for some time now due to seizures and extreme dizziness. Diet , mineralization and movement are so important. But it is none of that for me that is the cause . I love to see and hear of other people’s success though. Thank you for sharing. Truly. Cheers.
How many years did you struggle with this dizziness and how come all of a sudden it just came out of nowhere if you've been eating gluten your whole life and what other Foods react in the body like gluten like rice or oats because I've heard that you cannot eat those either even though they say that they're gluten-free
Hi Michelle, I struggled with dizziness for around 18 months before I got my diagnosis of gluten ataxia and then it took me around 12 months to become almost symptom free by eating a gluten free diet. I'm not sure on the specific mechanism for it and I don't think anyone knows but the theory is that a random infection can cause an autoimmune response where you can then be sensitised to different allergens. I always had slight issues with gluten and my stomach for years although I was negative for coeliac disease and so my specialist thinks I was predisposed to an allergy to gluten and all it took was an infection to come along and dysregulate this pathway. I also cannot eat oats and they cause an allergic response to me too like dizziness and balance issues however I have always been fine with rice.
So many things clear up when you stop grain consumption. Things that you didnt realize were even problems because you learn to deal with them as part of day to day life. Now with much less inflammation in the body its so much easier to just enjoy life.
Christopher, thank you so much for making this video. I am a 62 year old woman who has been having very similar symptoms to yourself over the past 7 years. I have been diagnosed with various neurological conditions as well as lupus, sarcoidosis etc, but then told I didn’t have these conditions after all. I rapidly developed deafness and tinnitus and had to wear hearing aids. I also developed uveitis/scleritis and have been on steroids for 3 years. 2 years ago, the neurologist and rheumatologist agreed I had something serious, but said it wasn’t their department. I was left in limbo. And getting worse. I have a medical degree (Podiatrist) and started my own research. I started B12 and felt a little better. Then I started a Chronic fatigue diet due to the extreme tiredness I was experiencing ( I had metal straws to drink tea and coffee on the days I was too weak to lift a cup). After 6 weeks I started to feel better. The diet was gluten free, but I tested negative for coeliac. Then after 6 months I added iron supplements and I was off and running. Or rather swimming and lots of walking. I felt normal for the first time in years. I was going to continue just being gluten free until my 8 year old grandson started to have problems after gluten. His father, my eldest son, had also had had stomach issues most of his life. I decided to go private to see a gastroenterologist for their sake. He hadn’t heard of neurological symptoms with non coeliac, but was very willing to listen and take on board what I had to say. I had to go on a gluten challenge. I was a little anxious but I thought so long as I took iron and B12 I would be ok. It’s no exaggeration to say my world then fell apart. All my symptoms came back within a week and very intensely - Internal tremors, bloating, numb arms in bed, foot drop, balance issues, fatigue nausea, coordination problems, I couldn’t walk straight, palpitations, facial and lower leg numbness. Both eyes became inflamed even though I was on steroids. My family were phoning up begging my husband to not let the gluten challenge continue. But by then my brain fog stopped me from making rational decisions. My eyes were jumping when trying to read. By the 7th day, I couldn’t speak properly. I had difficulty finding the correct words and slurring those words when I could get them out. It was frightening. But I knew that it would improve as it had before. 4 weeks later I was feeling much better and I had my endoscopy/colonoscopy and obviously nothing was found coeliac wise. And here I am, in the 6th week and I have just come back from my first swim and feel amazing! I am even going to book in with a personal trainer next week. My lust for life has returned. All my symptoms have dramatically improved and thankfully my tremors have stopped as of 2 days ago. The tremor is the first symptom to develop, and the last symptom to go. MY gastroenterologist is referring me to Sheffield Hallam hospital. I hadn’t heard of gluten ataxia until after this last health scare and yours was one of the first videos I saw when I typed in my symptoms and gluten. Thank you once again. You have helped more than you could ever know.
Hi Helen, It really is a bizarre condition isn't it! If you tried to explain all of these symptoms to people they would never believe that it's all part of the same condition, let alone that it's caused by gluten! I'm glad that you were able to use a bit of medical knowledge before to help guide you on the supplements and that you've finally got to the stage of getting referred to Sheffield as a lot of people never even come across gluten ataxia and never get diagnosed and continue doing damage to themselves! Also glad to hear that I could have helped in some way as I know that if I'd seen someone explaining all the symptoms on a video back then it would have helped me a lot 🙂
Thank you for sharing your experience. Wheat gives me the same symptoms. I have fibromyalgia and I noticed it's wheat that is affecting me. I restarted a meat based diet last week after 3 weeks of eating a normal diet minus grains. Today I had a steak and a cup of tea using a tea bag. As soon as I drank it I felt the heaviness in my eyes which in another word is inflammation taking over and brain fog. Tea bags must contain wheat cause my body reacts to it right away. Did that ever happen to you?
@@veronical3135 Hi Veronica. I haven’t noticed tea bags causing a problem but I usually drink loose leaf tea anyway. I suspect there may be some cross contamination for you. It’s quite frightening isn’t it? I can’t believe for years I could just go out for a meal or go on holiday and look forward to trying different foods. Now, going out is a stressful experience. And not just for me, my family too as they have seen first hand the effect it has. But sometimes, I just have a bad day, and then you are left wondering what you ate and drunk. I find it exhausting. But I will check out the tea bags and see how I feel afterwards.
I have Graves disease aka hyperthyroidism and my recent flare led me to ditch the gluten and I feel much better! My symptoms were similar to that of gluten ataxia so I'm thinking about getting tested for it after watching this video!
@@DrTrevvyall grains have gluten and yes gluten causes thyroid issues bc it destroys the gut and prevents your body from absorbing vital nutrients needed for proper thyroid function such as zinc and potassium and protein. “Look up grain free pain free “ by doctor Osborne here on RU-vid, a gluten specialist.
I had positive high antibodies for gluten before and also negative for celiac, however I’ve suffered from anxiety and depression, severe ear itchiness, palpitations, fatigue, dizziness a lot, weird strange symptoms. I am going to look deeper into this
I get severe ear itchiness, too! I feel like people always look at me weird when I say it, and they don't understand that it's like an itch inside my ear.
Hi, thanks for your comment :) I also get the palpitations and fatigue alongside my dizziness, it seems like there are generalised autoimmune responses being activated that the research doesn't fully understand yet
Could you please tell what "gluten" antibodies? There are anti transglutaminase, anti gliadin and endomisial antibodies? Your biopsy for celiac was negative?
Hey Chris. Thank you for this video. I've been clean off alcohol for 250 days and counting after a rough few years. I started to notice the last few times I drank, my anxiety would heighten and I would feel super off. Since becoming clean, I've been coping with anxiety and have had several different doctors and several different tests all determining that I'm fine. The only thing they've found is low vitamin D. I have some weird facial redness. It hurts to look at lights and screens. Some hearing loss (just the right ear) and fluid in my ears that comes when I sleep. And a constant, constant ringing that hasn't gone away. I've chalked this up to some concerts as well as having tubes and allergies throughout my life at different times. I sometimes have weird balance issues, but are mostly fine overall with that. I've also been depressed because it feels like it's been stopping me from being happy. I feel like I've also given up on trying to find the answers. My diet was poor, but it's been improving. Been having more pure chicken, veggies, a smoothie each morning and so on. I cut out dairy about a month ago and that's actually helped a bit. I've had an MRI that just showed some sinusitis. A CT scan on my sinuses that have come out normal. I was wondering if, through all of this, there's any hope? I've been just so frustrated because I've been proud of reclaiming my sobriety, but it's like...I should feel better right? It seems that I've exclusively felt worse. I'm only 27.
Have you tried Carnivore? I am about 95% Carnivore & hoping it works. Getting off of all processed foods has helped alot with my severe gut issues but all of the bio-available nutrients in meat is what I think is the solution for me & many others that I find in the Carnivore channels comment sections. Well wishes.
Thanks for commenting :) I'm glad to hear you're more on the path of making some positive changes and I completely get that it's frustrating feeling like they might not be working as quickly as you'd hope. The two things I would say make a massive difference to me are sleeping and walking. There's a lot of research into sleep that shows that toxins are recycled or disposed of during sleep and I've found if I try for 9 hours sleep a night I feel loads better and have a lot less balance issues. I've also found that walking at least 10,000 steps a day and having days where I walk consistently for a few hours in a row at least, in nature, makes me feel loads better too so I'd recommend trying both of these things and seeing how that helps :)
I can relate so much to your story. Years of problems, anxiety, brain fog, balance issues, nerve damage, etc before I finally was properly dx. They thought I had Lupus, MS, so on and so forth. I was tested for everything but never Celiac. It turns out several of my kids have it too.
I have eliminated gluten from my diet but it hasn’t even been 2 months yet. Did you have to go a full year before you noticed any benefit? I was thinking I may need to consider dairy as a possible source of the problem, but perhaps i should just stick with it a little longer… I have balance, fine motor skills and speech issues… probably about a 3 or 4 on a scale from 1 to 10. No pain at all but just “not right” for several years now
Hi Chris, Yes I had to go a full year and it was extremely frustrating at times and for a long time I thought that my problem must not be gluten related and it led to a lot of despair as I had explored almost every avenue at that point. I will say that I did not realise how much of an impact oats has on me as the molecular structure of the protein in oats is similar to that of gluten and so this was making my symptoms worse so I would say stick with it and also cut out oats (even gluten free oats).
@@DrTrevvyyea i switched to oats and they were probally as bad. I think the gluten allergy is a yeast/mold allergy. The best growers of yeast/mold are wheat oats dairy. Uv light heat and oxygen , salt are good killers of mold. I notice i feel better using tan beds. Salt baths. Excercise. Infrared sauna. Colonics. But always get worse with sugar/carbs
I am having same issues. Ugh so frustrated. I hope you stay well. I'm going to as for that mri. I've had 3 different mris for other reasons including a fmri. Seems weird that can't pick up the issue ?
Please help me! My blood tests are all negative. What was the last blood test you had that came positive? I'm from Brazil. I'm just like you described. I've been suffering a lot. Please could you give me more details about the tests you did? I appreciate your help. Thanks!
I really appreciate your story, it’s been years that I have felt like you described. So much anxiety that I felt as if I was a zombie moving through life. I have been to many doctors but it wasn’t until a year ago I noticed every time I ate bread I felt horrible afterwards it was if the more bread I ate the more starved my body felt inside. I was diagnosed with malabsorption due to bad gut enzymes because of the up and down weight I developed health anxiety, always googling, everyone in my life called me a hypochondriac 😢 They just don’t understand! but I do think it may be gluten because once I stopped eating wheat I felt a thousand times better although the brain fog is still bad and the balance issues are still there but I do feel I may have finally be heading towards what may be the catalyst of my health issues I hope.
Omg. Thank you so much for this video. This is practically what I am experiencing. I've had ear issues since a child but as an adult now my ears are so itchy I'm convinced there's a tumour in there. My sinuses hurt, my eyes hurt and I'm convinced there's a tumour behind there too. I am fatigued all day severely. I'm in therapy for anxiety and depression the list goes on... Thanks again for this video.
Me too :) I always say it's my allergies. I think its my diet too. I am 5 days gluten free. Still in the gluten withdrawal stage. I feel awful, but better too. I will keep you posted. I did scans and Drs and all they ever told me was it was allergies.
Thank you for commenting and I'm really sorry to hear about the anxiety and depression that you're experiencing with this, I can definitely empathise with all of this. I think that resolving the anxiety (as difficult as that is) is the first and biggest step to getting better and getting to the root of the issues and I hope you get there soon :)
going back to the ear infection,,, did you ever check your eustachian tubes? i had these symptons and removed all dairy. 90% better , now im removing wheat products. i notice my inner ear always clicked. fluro lights shopping were the worse lol, i did a yorkteest food allergy and it came back 100% dairy
Yeah at first I thought it was just a eustachian tube problem or eustachian tube dysfunction but I had a full vestibular fitness check which ruled that out and detected that the issue was a central problem in the brain as opposed to the ears
I’ve just learned that lactose intolerance is common in people who are gluten intolerant. I have in the past eliminated all dairy because of the side effects- I may try to re-introduce lactose free dairy…
@terrimurrell6037 hi yes I went dairy free but everytime I introduce wheat or even rice I still get slight issues. I'm now testing fruits and fruit juices which is proving great.
Hey Chris, First of all, I am glad you continued to push and advocate for yourself throughout this journey and reach a definitive diagnosis. I had similar issues with balance and dizziness starting in my middle twenties as well. Symptoms were abrupt and it has never been the same sense. I haven’t been diagnosed with gluten ataxia; however, I went gluten free due to having Hashimoto’s Thyroiditis sense the gluten molecule is thought to have molecular mimicry to the thyroid tissue and cerebellum tissue causing the balance issues. My first abrupt symptom was similar to what I have research as a drop attack. At the time, I was working as a paramedic and while attending to a patient in the back (while traveling down the highway) I thought my partner was pulling off the freeway. So, I of course went to go look out the window to investigate why he was pulling off the freeway and BAM….I went down and my body slammed into the bench seat. It all happened so fast along. I was seen by my PCP and told I have vertigo. Mind you this was back in 2012. I also had the feeling of movements going up and down (but not smoothly, more abrupt). The horrible part to all of this is it causes extreme anxiety while driving on the freeway. I am afraid I could become symptomatic while driving which makes the anxiety worse. I have been gluten free for a couple years now and I have never had the right sided drop attacks again, but still feel like I am on boat and or had too many alcoholic beverages intermittently. Some days I feel 100%, some days not so much. I’ve been to PCP’s several times for this and they all brush it off, which I believe is because they don’t know what to do and also maybe don’t have the drive to really figure it out. I have ear fullness, popping, fluttering in the ear, nausea (especially motion sickness, way worse than ever before). I did have a typical MRI done and that was normal, but I haven’t heard of the MRI you had done. I am sure I’ve left out a lot but that’s the short version. Ha! Thank you for creating this content and I look forward to watching more videos. I am sorry you had to go through all of that, but elated that you have a diagnosis and can potentially reverse any damage to your cerebellum. Cheers, Chris
Hi Chris, I completely get what you mean about forgetting if you’ve left anything out. These kinds of symptoms and these balance conditions seem to come with a multitude of other symptoms too affecting the eyes and ears and all parts of the balance centre. For example, at my worst and sometimes now when I’m having a bad day, if I’m stood at home reaching up with my hands into a cupboard then that motion will trigger a falling sensation seemingly because it is picking up on the proprioceptors in my arms and feet to tell my brain that I’m moving. Interestingly my mum and her brother also have Hashimoto’s Thyroiditis and it makes you wonder whether there is some kind of way that you can inherit a predisposition to having a gluten caused autoimmune disease but where it affects different organs. I had the exact same symptoms regarding my ears which I didn’t really go into detail on in the video but I also had ear fluttering, popping and crackling and I was constantly holding my nose and breathing to try and lightly pop my eyes to release some pressure but it never actually fully worked. Also interestingly whenever I was challenging my balance in those early days, especially when going out for walks whilst speaking to someone at the same time, I would experience pressure building behind my nose at one side kind of in the area between the top of your nose and your eye and this would subside only after getting home and sitting or laying down for a while. I’m sorry to hear that you’re still experiencing your symptoms. It could be worth getting an NHS referral for the gluten ataxia clinic in Sheffield just to rule it out or in but otherwise I hope you find some answers soon as I know how it feels to be in that place and how lonely it can feel but as you’ll know you just have to be grateful for the good days.
I know someone who had terrible anxiety and depression and drs couldnt help her. So her mother decided to research and stumbled across information on gluten and its impact on the body. She asjed the dr for a test for coeliac disease and sure enough, she had it! After going 100% gluten free, the anxiety and depression lowered. It takes time to change a lifestyle but pays off. Not saying it is for everyone, but researching and trying things to find out if they are the root cause of issues can be very helpful. Im struggling with anxiety and im looking into gluten, sugar and dairy. Hoping by eliminating these i can lower my anxiety and inflammation.
Hi Chris, hope you are well. Your story is basically my story if I was to add in more circles and specialists with no answers. And change some of the chronology of events. I have been dealing with some vision and balance issues since childhood - and yet at 55 still pass the tests at opticians and hospitals - but my story really turned horrific in 2002 after being on board a ship for two weeks with a virus... mdds was also something I researched. But nystagmus occurred weeks later on my 30th birthday and was a year later told I had BPPV. It calmed down eventually but in 2004 I woke with severe migraine, stiff neck, aura, and temporary blindness in right eye and then BPPV later the same day. To cut a long story short, I am still under 13 specialists and no real answer.... vestibular migraine etc, etc. But I went gluten and dairy free abroad in 2008 for a year and had some resolution. My sleep is terrible and I get hypnogogic wake ups sometimes 300 times a night... like falling. I have it whilst awake. I feel permanently drunk on board a ship in rough seas. Your description of shopping is my description... much of your description is mine. Two months ago I started making my own bread and eating it every day and I have ended up in AE with bp and tachycardia, ataxia etc. Told, yet again, anxiety despite 3 separate psychological assessments ordered by different specialists over the years. Literally thought I was dying again. I have been, as you will know, to hell and back and thought what is the point - life is unbearable. I have researched so much that every GP I see says either "stop looking and accept" or "never heard of it, and you know more than me". Been tested for coeliac but nothing. I have gone carnivore and some of my symptoms are starting to lift... gut issues, migraine, vertigo, chronic pain etc. And my research led me to consider non coeliac gluten ataxia and just watched your story. I have also discovered that my real grandfather, mother, brother, sister, have all had balance, gut, pain issues etc, as I am adopted. No MRI or CT has shown up MS, stroke, etc. Maybe it is worth another go at this when I next see one of the specialists. I'm in Cumbria and best friend is in Cottingly. I was even under Bradford Uni for a while at the eye clinic. Any help you feel you coukd give would be very welcome. Take care and well dine for finding your answer. Believe it or not this really was the abridged version of my hellish journey
It is frustrating having to convince doctors to refer you for scans, especially GPs who are trained to spot the most obvious diagnoses but don't know about the rarer conditions like gluten ataxia
Thank you for sharing your experience. I was fit and well but developed severe balance and gait problems over 2 years ago, soon after my 1st covid jab. My life is a daily struggle to get through the day. Seen several neurologists, physios, ayrvedic and chiese medicine doctors but nothing helped. Stated seeing a doctor who practices integrated medicine and one of the things he told me was to give up gluten. Hopefully this might help me too. Hope you make a full recovery and thanks again for sharing your experience.
Hi Rohini, I’m sorry to hear about the symptoms you’ve had since your COVID jab. I did actually find that the booster jab made my issues worse temporarily and also gave me some temporary chest problems. I think there’s a lot of shared pathways when it comes to inflammation and we don’t know everything about these. One of the best things I can advise is to not stop doing things and to continue moving and I think this helps the brain to adapt, I hope things improve for you.
Fix your gut and all this problem will be resolved. Take from 3 to 6 months. Home made kefir daily, start slowly and up the amount until tolerable one glass full a day. Ass green cooked bananas daily will great heal the gut microbiome. Look into to thyamine, thyamine and thyamine!!!!! There are different forms, some form work for some people and not for others, need to be high doses to see result. Watch RU-vid videos of ELLIOT, he talks about this and have guests who have had all weird simptoms that was resolved with thyamine suplement
Omg exactly what I had. I couldn’t go into Walmart. Yep I told docs I felt like I was drunk. All docs told me I was fine and referred me to counseling…after years I went to Mayo and was diagnosed in 3 days. It’s been a healing process but Dr Osborne in Texas with Gluten Free Society has years of research and videos on all gluten issues. He’s been my educator and it’s ongoing🤓
Hi Karen, I'll be honest I didn't feel worst when I started going GF. I don't think eliminating gluten from your diet should cause things like that to happen so I would possibly think that it might be caused by something else, possibly something you've brought into your diet that you didn't eat as much of before but are now eating in place of the gluten?
@karenn uttall7059 I just watched a video about it & some people need to wean off of gluten similar to weaning off of oxalates from plants. Well wishes.
@@karennuttall7059 I've had to gradually wean myself off of it. I'm not 100% compliant, but I've been doing this for the last 4 weeks. I now can tell when I've had something with gluten because the ear popping/fullness/pain comes back, my joints are achy, etc. I had a meal prepped dish for my lunch break & the only thing new I had added was one of my favorite stir fry sauces. Within an hour, minor ataxia symptoms started to appear and I haven't had them since beginning of June. That's what finally sold me on my gluten intolerance. It's heartbreaking since I love cereal, bagels, and most grainy carbs. Wishing you luck as you navigate this all.
What a clever chap you are to stick with it and do the resurch. I am going through a difficult time at the moment -my stomach keeps churning over like when you are nervous about something-but I am not .I suffer from dizziness but this dizziness is different. Like you I am thinking I have a brain tumour because I am having really bad headaches every day . Anyway I am so pleased you found out what was causing your dreadful symptoms. Thanks so much -I am sure you have helped so many people by sharing you story. ❤
Hi Lorna, Thanks so much for your comment. I'm really sorry to hear that you're going through this at the moment, it's awful having the combination of the symptoms and the anxiety isn't it? I hope that you get a doctors appointment that helps to put your worries at ease and gets to the bottom of your headaches and look after yourself.
Hi Chris, Thank you so much for sharing your story with us. I recognized my story in yours almost identically. It was an eye opener for me. Indeed, in the last years I eat almost daily a bowl of cereals (different kinds) besides bread, biscuits and a lot of other glouten providers. So, started with 2020 I get my share of problems, similar with yours. I don't mention here the visits to lots of specialists, medical examinations, stress and anxiety I was getting through. So, from today I will try to avoid gluten at all cost. I know it will be quite difficult but I'm determined to do it. If you are kind to tell me what is your daily diet. Thank you again and wish you all the best!
Hi Marius, Thank you for reaching out. I would definitely recommend just completely cutting out all gluten (including any wheat, barley and rye) and also oats because the protein in oats is almost identical to that of gluten so you can still react to it. My daily diet is something like an omelette for breakfast or you could have banana, milk and flax seeds smoothie. For lunch I’ll have a sandwich of some kind and some fruit and then for evening meal I’ll have gluten free pasta or rice or sweet potato’s and vegetables and meat. There’s lots you can eat on a GF diet!
Don’t forget that all grains and dairy can mimic gluten in the gut. In other words, you’re still building up mucus in the small intestines and the villi that stick up will flatten, and your body just won’t get fed at all. I became very malnourished when I was eating supposed gluten-free grains. Dr. Osborne NO GRAIN NO PAIN explains it all. Rice is so bad, and so are the rest of the GF grains, like quinoa, millet, sorghum, etc. good luck to you, and thanks so much for all the research you’ve done, and still continue to do🥰
Can you please reply what scan have you done in writing as i dont know how to spell specifically for Ataxia and which blood test the doctor recommended? When ever i told doctor that i am not well they said you might have anxiety even though my blood test for celiac is positive and i am on gluten free and dairy free diet .
Hi Salina, The specific scan I have is called an MRI with spectroscopy and the blood tests I have are for anti-gliadin antibodies specific for gluten ataxia related antibodies
What tests did you take to determine its was gluten that caused your problems?I understand you went to a gluten ataxia clinic for help. I also suffer from ataxia which has an impact on my life. If you saw me walk you’d think I was drunk. My left side is more affected and I tend to tilt over sideways. I don’t know if we have a clinic like you have here in Canada. And did your condition improve when changing your diet?
Hi Jim, I'm really sorry to hear that you suffer from ataxia too and I hope you can find some improvement with symptoms in the future. In terms of the tests that I took to determine it was gluten, I had a scan of my brain called an MRI with spectroscopy which is used to measure activity across the brain and so it can see if there is a loss of activity specifically in the cerebellum where the gluten antibodies target in gluten ataxia and then also a blood test for a specific type of gluten antibody that is specific to gluten ataxia called tissue transglutaminase 6 (tTG6) and antigliadin antibodies. I was positive for each of these tests and then I saw my brain scan improve and my antibody levels go down by eliminating gluten from my diet. The clinic I go to is in Sheffield and my specialist is called Professor Marios Hadjivassilou, it might be worth finding his email online and contacting him to see if he is aware of anyone in Canada or wider in North America specialising in this?
Thank you for posting your experience. I had a similar saga but with sudden numbness from my feet to my chest and related problems. Saw many doctors at highly rated teaching hospitals in NYC who couldn't find what was wrong with me. By chance made an appointment with a neurologist who knows about the neurological manifestations of celiac and he finally did the gluten antibody test and a skin biopsy which showed nerve damage consistent with peripheral neuropathy (everyone else was convinced the problem was in my spine). Duodenal biopsy confirmed celiac. I really don't understand why a celiac panel isn't something that neurologists routinely do if no immediate cause is found after MRIs, lumbar puncture and other bloodwork. I was tested for some pretty exotic ailments. You do have to keep pushing to get a diagnosis. I started the gluten free diet two months ago and am hoping that my symptoms will improve. I know it can take months if not years to have results particularly if you are older (I am 71). You were lucky to be near Sheffield -- they are the leaders in the field.
Hi! Thanks for sharing your story. I'm a worried phd student who stopped eating gluten in 2012 for a variety of health reasons. I knew I was sensitive to it, i just had no idea it was gluten ataxia until this year, 2024. I get dizzy and have balance problems, but the more dominant symptoms are closer to drunkenness, like slower mental faculties and aggression that quite out of character, not to mention the increase in physical chronic pain. I don't have problems giving up gluten, but have grown more paranoid about being accidentally glutened (like i was over holiday), since i know it's affecting my brain. A lot of the older research makes the claim that this damage to the cerebellum cannot be reversed. You state that it's age-dependent, and also depends on how much damage has been done and for how long. Do you have any sources that discuss the possibility of reversing the damage, and could you please share them with me. Please. Thanks 🙂
Hi Beth, Glad to hear that you got a diagnosis and that you were proactive enough to cut out gluten years before that point so you minimised any further damage! In terms on whether the damage is reversible or irreversible, I don’t have any sources like research that I could send but I can only go off of what Professor. Hadjivassilou told me which was that and also the fact that my symptoms have vastly improved since being on the diet, as have my brain scans. I was a PhD student during the time I got my diagnosis too and I know the symptoms can make you feel like you can’t do things sometimes that other people can but persist with it because you’ll be really proud at the end for achieving a PhD despite all these things going on.
Thankyou so much for this helpful information, i have the exact same symptoms as you and irs been hell! Im now going gkuren free and hope in a few weeks i will feel better. :)
I am sitting here listening to your video and basically can barely move. I'm like a zombie, I ache all over, brain fog, anxious, depressed all because I didn't read the label on a can of cheddar cheese soup I used to make scalloped potatoes two days ago. What a mess my life has been with this gluten problem. Everything seems to have wheat flour in it. I cannot imagine what the next generation is going to encounter with all the packaged foods they eat. I try my best to cook everything at home and low and behold it was a can of cheddar cheese soup that tried to kill me this time. GEE!!!
I've glutened myself twice in 5 years. I worked out that I was a celiac during the start of covid. So had to diagnose and treat myself. You are right, wheat and gluten in everything!!!!! I became so limited on what I could eat that I developed vitamin and mineral deficiency. And no, no doctor has ever helped me. B12 deficiency and autoimmune diseases left in limbo, undiagnosed...... You wouldn't let an animal suffer like this.
@@allisonwales999 Hey I hear you. Dr. looked into why I was so tired all the time and diagnosed me with low thyroid. Well, come to find out... on my own... this can be a symptom of gluten intolerance. Been sick all my life and just found out about 2 years ago that gluten was the culprit. And I'll be 65 on Monday. So I've been suffering a long time. I am just thankful that I finally found out what my problem was. It sure does limit our food intake doesn't it. It's the PITTS!!!
My IGA on celiac panel was higher than normal but my ttg was negative I have an appointment with allergist and gastroenterologist soon , I don’t want to eat gluten anymore , beer and bread destroy my gut and brain should I stop the gluten now ? I have the appointments in a few weeks
Hi, I'm assuming your allergist/gastroenterologist has informed you by now but most specialists would advise you to continue eating them until you have done the blood test so your antibodies can be detected
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Thank you so much for sharing your story! I’ve been struggling with random dizziness, brain fog, extreme fatigue etc. for probably over 10 years (I’m 24) and no specialists have been able to help at all. The only memories I have of being full of energy were when I was much younger. I accidentally went gluten free a couple of weeks ago and noticed a pretty substantial improvement which led me to this remarkable research. Something else to note was when I came off my last cruise, I felt extremely dizzy, and no travel sickness medications seemed to work, they just put me to sleep. This makes me think it was to do with the amount of food I ate onboard. My standard coeliac serology seems to come back normal. would anyone know where I may be able to access a doctor who specialises in gluten ataxia in Australia? Or does anyone know if I would be able to pay for a private consult with professor Marios via video? Greatly appreciate any help! Thank you in advance! Dom
Hi Dom, I'm sorry to hear that you're also struggling with the same symptoms that I had and that you've been struggling with them for over 10 years now, people don't realise the effect it can have on your quality of life, especially at such a young age when you just want to be normal and not experience those issues and be like everyone else! In terms of the boat making you dizzier, it could be to do with the food, however, I think that the gluten causes damage to a part of the balance centre of the brain which then helps to regulate motion and balance and things like boats that have an almost artificial bobbing sensation are then slower to recover from because of this damage. I used to suffer a lot more from things like cars, trains and elevators but now I'm tons better since I've been gluten free. It does take time though and it could take 1-2 years to see substantial progress. I don't know of anyone doing this research in Australia but it might be worth finding Marios' email online and possibly contacting him to see what advice he would give or if he knows of any specialists in Australia? He is an NHS doctor so I don't think he would do any private consultations unfortunately.
On my side I have managed to clear up a lot of the symptoms by taking a tea vitamins and minerals. My guy doesn’t not assimilate some minerals and vitamins and after adding a multivitamin tablet and minerals tablet a day my brai fog improved drastically. Make sure to take quality supplements with no bulking agent.
@@IsaiasRamirez-sm7gj sorry it was the autocorrect. I wanted to say a lot of vitamins and minerals. I focused on Vitamin D, omega 3 and a complex mineral tablets. Make sure to get quality supplements (without bulking agent).
@@IsaiasRamirez-sm7gj I use Viridian organic mineral complex. I doubled the dosage for the first 2 weeks and I am now taking the normal dose. My headache especially has been reduced by 80%.
Wow thanks so much for sharing your story. I have very similar symptoms to you and also have gluten sensitivity. I will definitely look into gluten ataxia more. Glad you're feeling more yourself!
Hello :) In the early days I took anti dizziness medication, however I stopped taking these as it wasn't helping anything and I've also read in research papers that anti dizziness medication can actually be worse for people with chronic conditions as it stops the brain from rehabilitating. I also took sertraline for the anxiety for a period of time however this also did not help with anything so I stopped taking these too. I currently take no medicines or supplements :)
Hey Chris, no such thing as a coincidence. I came across your video right in the middle of some very disturbing health issues regarding gluten with multiple issues including terrifying balance problems. I will research “Gluten Ataxia” and in the meantime I’ve subscribed to your channel. Thank you for your post.
I had a problem with my lungs that was unexplainable, they would fill up with weird sticky substance and it was hard to breathe also there was a lot of wheezing doctor thought it was covid because blood tests showed it but the symptoms didnt subside after 2 different antibiotics. So i started testing. First i started eliminiation diet and started with gluten. I did it for 6 months and all my symptoms went away, i also had a flare up like rosacea a butterfly flare in my face that completley went away. All the stomach issues dissapeared, brain fog dissapeared. Now i reintroduced gluten into my diet and all the symptoms came back, the lung issue was coz of oatmeal porridge and rye i found that out real fast, and flare ups and stomach issues were from wheat and now im doing the gluten test, wheter its positive or not i dont care im going to stop eating it anyways. I also developed inflammation in my back and nerve pain for a month but i'm not sure if that is because of my desk job or not, i do workout twice a week and i am not overweight so they are all probably connected. anyways fuck gluten
Hi same . Was ill for fifteen years and after Pfizer put me in hospital a neurologist found I had coeliacs and gluten ataxia .,y life has changed dramatically since being gluten free. Feel twenty years younger Also under professor Hadjivassiliou in Sheffield . So lucky to live in Sheffield the neuro department and staff are amazing . He’s definitely changed my life .
The effect of the vaccine is a weird one isn't it? I don't want to sound like an anti-vaxxer but one of the vaccines made me feel even worse with my balance so there does seem to be a link between gluten ataxia and other things that effect the immune system like colds and flus. Hope you're doing good now?
@@DrTrevvy I am good now for the most part , I do think the Pfizer jab enhanced whatever was going on . I had no boosters , and it was a year continuing eating gluten whilst waiting for a stomach biopsy . The numbness down one side never happened again during that year 😳 I already had hypothyroid so am auto immuny type person. . Will never have mRNA again
@verlchill333 back pain, especially lower back pain. Wouldn't say I have neck pain specifically but general worsening back pain when I ingest gluten. My mother is also celiac, and her nervous system is done where she can barely pick up things because her hands shake so much. Alot like someone with MS. Bye, and I hope you find out what the problem is.
I had negative coeliac bloods but an endoscopy showed increased cells (classed marsh 1) I had tummy issues but my biggest issue was balance and foggy thinking. I found it hard to speak fast and was always clashing into door frames etc as my spacial awareness was messed up. I couldn't tolerate loud sudden sounds as my nervous system was so sensitised. I have been gf for 15 years. I am better apart from walking on dark shiny floors (some shops have black shiny ones) they send me completely dizzy and anxious.
Hi I haven’t been diagnosed, although I need get a gut map done. I don’t know if that include celiac or gluten related issues. But I also deal with mood disorders but I’m 100 percent sure they stem from digestive issues. Have you specifically used probiotics, l-glutamine, digestive enzymes or beating hcl at all? If so what supplements would you recommend?
Hey Chris, thankyou so much for creating this video. Im exactly where you was before your diagnosis… I’m currently looking for genetic and intracellular testing in Liverpool, I’m interested in having the tests you mentioned in Sheffield, bloods/scans etc can you please give me the name or details of were to go from here? I’m literally suicidal with all the symptoms.. many thanks. ☺️
Hi, first of all I'm really sorry to hear that you're feeling so depressed at the moment, it's incredibly hard dealing with all these symptoms everyday and not knowing what's causing them and people don't understand how unrelenting that can be. Hopefully my story can be encouraging to see that there is a way that it can get better. In terms of getting the blood tests and scans, my specialist is called Professor Marios Hajidvassiliou and he's at Royal Hallamshire Hospital in Sheffield and it's NHS so I think you would need to speak to your GP and get them to put a referral through to see him and investigate whether your issues are caused by gluten ataxia, if you have any issues let me know :)
Thanks Chris I feel I have been on the same journey! My neurologist has suggested gluten free diet based on blood results I think they were tested on Sheffield Did it take full 12 months for you to feel better my big issue is balance when walking o feel like I’m falling forward
Hi Karen, I had the exact same sensation you’re having now with feeling like yours falling. Yes is took me a full 12 months and even a little bit longer to see improvements but it is so worth sticking to strictly and consistently as I feel so much better now. Let me know if you have anymore questions!
