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It is really hard to say as everyone is so different. Years later, I am still regularly doing specific exercises to improve my balance. For me, it involved working on several factors while maintaining a mainly paleo diet (physiotherapy, creating a calm life, keeping sugars down, meditating, visualizing health and mobility and through it all, finding ways to help my nervous system) to see a difference in balance and for some simply going gluten-free helped them out.

@ Thank you 😊

Hi there, so glad you finally got a diagnosis but so sorry you are going through this for 7 years. I had excruciating headaches for 10 years leading up to going gluten free - I always thought they were weather related. I have not had headaches like this since going GF (celiac-safe GF with no cross contamination). GA brought about nystagmus in which my eyes were jumping/not functioning properly and this too corrected by going gluten free and doing physiotherapy. Sending healing energy your way!

So appreciate your energy here. Have a beautiful weekend!

Sending good energy your way for deep sleep and sweet dreams!

I am so sorry to hear this. I am sending so much healing energy your way. Although I know some people who have had strokes, I have not done extensive research on it. I can tell you that I did physiotherapy with many different people of all ages and medical backgrounds including ataxias, ADHD, autism, PTSD and strokes who all benefitted from physiotherapy and many of our sessions were very similar. I know the more my body and brain were able to "operate in the same room" as I liked to call it, my mouth would operate better and it helped improve my speech and enunciation. I hope you can get physiotherapy where you live as it will help immensely. For me with Gluten Ataxia, I found the more that I could do to take pressure off my brain and body, the better it could heal and learn how to navigate again. So, cutting down on sugary treats and heavy meals allowed my body to work on healing instead of digesting - sort of like when you have a cold or flu and you find yourself not as hungry which is your body concentrating on getting better. I am sending so much good energy your way and hope you find a great team of health helpers.

So sorry for what you have been through but so happy you are finally finding answers and getting life back on track. So happy you have someone getting you the right tests now. I hear you about learning a lot from the experience - it is quite the education on every level. Sending you good energy for continued healing and happiness. Grateful to meet you here in the comments :)

So happy to have you listen in :)

Hello - so nice to connect with you here :) I love that you love to bake and truly know what your career passion is. And glad that you figured out gluten is an issue and have seen improvements. I hate to say it...but you are most likely inhaling airborne flour. (I do not know your set up - based on what you said) I know of people who cannot walk into a bakery (with a prep kitchen) or down a flour isle at a grocery store. I could not believe how glutened I was getting simply by pouring dogfood in a bowl due to the airborne particles that landed on my face and that I was inhaling. I never would have known this if I did not have my glasses on and I had to clean them off. I had to change my modelling career completely because of gluten in hair and make-up products so I know that potentially altering your career because of gluten is a massive deal. I do know of several amazing bakeries in Toronto where I live that have made it their mission to create delicious, healthy GF baked goods - and some of them changed their ingredients because they needed to for themselves and their families. One place has mastered a GF, plant based layered croissant which is delicious and I just bought a "sourdough" loaf this weekend for a holiday which was the best GF bread I have ever had. Another place has mastered an Italian parmigiana sandwich that is beyond delicious. Some deliver specialty tarts and cupcakes for special occasions. If you do need to tweak things, so many people would be overjoyed with your GF baking creativity and passion for what you do!! I did not have terror with the body buzzing all the time. The more my system regulated the more it lessened. Physiotherapy definitely helped. I have not been glutened in a long time so I don't know how my body would react now if that happened. Even though I look "normal" to most people, I still cannot push my body too much - no running, intense workouts, stairmaster, cardio workouts etc. And I make sure to get really good sleep and don't push myself too hard. I work in TV & film and there is often overnight filming offered which I always decline - I find that my system gets completely off track when my cycle gets disrupted. I filmed once to the morning and it took me a week to get back on track and I can feel old sensations bubbling up - which is when I say let the sleeping giant sleep so to speak. I always make a point of doing whatever I can do to soothe my nervous system as part of my everyday life. Sending so much good energy and healing energy your way!!

@@LiisOnLife thank you so much for your kind words of encouragement! your story is really inspiring!

Hello again...randomly I found an old email from my physio days talking about the inner buzzing and wanted to message you back (can't remember what exactly I shared in the video so sorry if this is repeating). My physiotherapist explained that cortisol and adrenalin were pumping to try to keep up with my body's demands (my brain was using up a lot of energy trying to tell my body to do basic functions) and the buzzing was adrenalin coursing through my body and is generally worse in the mornings. He was the only one to explain this to me when others told me I was reacting to thyroid medication and I insisted that was not what was happening... Hope this helps. Have a great weekend :)

@@LiisOnLife oh that will be really useful when I met my doctor again! I will make sure to report this. Thank you so much for taking the time to search your e-mail!

@@Tdvc Glad to send it! Good luck!

Thanks so much for the kind words - so appreciated Gregory. I am very happy you found this video. I am grateful it continues to reach who it needs to reach. I continue to stay completely clear of oats as I tested super high to them years ago. I am also very careful to avoid foods with them in them - many products are using oat cream now. If I was able to eat oats, I would make sure to only eat purity protocol certified gluten-free oats versus "gluten-free oats." Too much risk of cross contamination in just "gluten-free oats." I do sometimes now have rice and corn and do not have reactions to them. I make a point of eating Paleo at home about 90% of the time and try to save grain consumption for when I am travelling and may have limited food options. If I do off road as I like to call it sometimes I feel ok but I do feel much better sticking to a grain-free way of eating. I would not feel my best if I had, say, a GF sandwich every day for lunch. Please reach out with any other questions! Sending healing energy your way :)

@@LiisOnLife thank you so much that was very helpful (as I know you'd be). Right back at you with the healing energy.

@@gregoryweissman Thank you! ☺

So glad this video and information found its way to you! Please also check in the information listed under the video in the description for more information and resources. Sending good energy to you today!

Love this energy! Yes to all of this 💛💛

I see you and I hear you! The list of symptoms is so long and so varied. Sending good vibes your way.

I am so sorry to hear about your dog but happy your pet came to you in a dream. I am glad this video found its way to you in the middle of the night! There are others that share your symptoms and we see you :)

Sending good energy your way and healing energy to your brother. Glad this video found its way to you.

So sorry to hear. Sending good energy your way.

So happy this video found its way to you ☺

I am SO glad you found your way to this video. I hear you. I see you. And I hope you find more answers soon and this may have opened more avenues to look down. Sending so much good energy your way for great health and healing.

So happy to have you watch. Have a beautiful week!

@@LiisOnLife you too!

Nice to meet you here and glad you had those aha moments watching this. Glad for you that you got other diagnoses in place to put those health puzzle pieces together and get your health back on track. Sorry to hear about your muscle power. Now that I have got more usage of my limbs and being 53, I am making a point of doing light weights every day to try to make up for lost time. Sending good energy your way today. Please don't hesitate to ask any questions!

Thanks so much for this lovely message. I really appreciate your kind words! Sorry you are dealing with this as well - and to be brushed off by people in health care is beyond frustrating. I see you and hear you :) Your beautiful cats must be such calming, soothing energy. They are great nervous system regulators! I get better each year and this year (2024 as I write this for those reading this comment) I have had more physical abilities get stronger which thrills me. Sending beautiful healing energy your way today and every day :) You've got this.

So welcome. If sharing helps even one person it is so worth it. Have a great weekend!

Hi Rick, you can message me on Instagram - @liisonlife or email me - info@liisonlife.com . Have a great weekend :)

Everyone with any form of autoimmunity needs to have complete vitamin testing/system deficiencies done for sure. It is amazing the ripple effect deficiencies can have.

So grateful to have you listen in thank you!

Glad this found its way to you. Sending you good vibes for a beautiful weekend!

Thanks very much. I am 53 now - think I shot this when I was 50?

The neuropathy eased but it took several years. There are still twinges in my leg. My arms have never gone back to full strength although they are much better than they were and function properly now. I have taken many supplements over the years. I took curcumin for many years to bring down all inflammation. I did B12 shots for many years- methylcobalamin - and this helped me a lot. (I was taught how to give them to myself) Interestingly, the more I cut down on sugars the better my brain functioned. I also never ate avocado for 40 years and probably eat one every day or every other day - find that it helps my brain as well. A huge help (and complete necessity) for me for many years was eating/snacking every 2 hours to regulate how my brain functioned.

Sorry to hear 😔 Not fun! Sending good energy your way and nice to connect with you here.

Sending so much good energy your way. I hope you find the health answers you need.

I hear you. Sometimes that mind chatter drowns out other things. I find that the more I meditate and quiet my brain every day, the stronger it works when I need it to in those intuitive moments when I am looking for the answer. So the quieter and more sturdy my "foundation" the more it helps me in other situations let in the intuition and move in flow :)

So sorry you have been trying to find answers all this time. I hope you are able to get the test and it helps put some puzzle pieces together. You must be exhausted on all levels. You are indeed a sane person with real medical issues happening. I hear you and I see you :) And think you are amazing. Sending so much positivity and healing your way.

Thanks- every year it is getting better :) Stairs are ok now but for years were hard to navigate both ways. I would often go up on all fours like a kid. More than anything it was exhausting with my brain trying to tell my legs what to do. But I am actually grateful I live in a 2 storey as it made me go up and down the stairs even when I wished I had everything on one floor. I use certified GF brands and brands formulated without gluten. I ALWAYS double check the FAQs/ingredients sections of brands and individual products when I go to re-purchase as some will change their formulations. Some I use now are Gabriel, Ilia, Viseart, Tarte, Too Faced, Lorac. Look up glutenfreemakeupgal who updates her list yearly for ideas :)

Nice to connect with you here and glad to hear your gut has healed. It takes dedication! If you caught your body's reactions early that is great. Please monitor any reactions going forward because trace amounts of gluten consumption can still do silent damage and build up over time (if you do have Gluten Ataxia and/or celiac) and the brain and nervous system are so important. Wishing you great health and great energy!

Totally agree with you on their amazing gift of hearing - and smell - huge benefits in countless situations. But animals and dogs react to all kinds of situations differently than humans that we need to lean into. If a seemingly "nice" person gets a strong reaction from a dog, I am going to pay attention to the cues from the dog and be on guard...

Absolutely there is a celiac blood test. But extremely hard worldwide to get a blood test for Gluten Ataxia which you can have without testing positive for celiac. Unfortunately for those that test negative for celiac, their Gluten Ataxia then can go undiagnosed and be deemed a non-gluten related condition leading to years of sometimes irreversible damage to their brains and bodies :(

Aren't animals such beautiful energy? Keep leaning into those gut feelings and they will begin to carry you and grow stronger. Sending you so much good energy for everything to get brighter and lighter :)

So nice to meet you here and thanks so much for sharing a little bit about your journey. So sorry for all you have been through and so very sorry about your brother. Please know that your message here and others like it help me not feel so alone too! I so appreciate you taking the time to write it :) I am wishing you more healing and hope the glasses help. Sending good energy out to you!

I am so glad you got some ideas. Sending you beautiful energy as you create your space :)

So glad you got some ideas for your meditation corner!

Sending good vibes your way for good health and healing.

I am just so glad you finally got diagnosed and have 18 months of healing behind you. But 10 years is far too long to finally get an answer :( I so appreciate people like you leaving comments and info for everyone - but also they help me to even further validate symptoms that I was continuously told were not a part of GA - I was told that feeling like an attack/seizure/convulsions was bubbling under the surface was not a part of GA. Wishing you all good things for 2024 with continued healing and getting stronger each and every day.

Hello! Thanks so much for sharing part of your journey. So glad you found this video if it helped put some puzzle pieces together. I often told people that if I did not regulate my energy output and the stimuli around me I would have a seizure. I never did have one but for years felt on the brink of it regularly. I hope you continue to feel better and stronger as time passes. I was told by the functional medicine practitioner that diagnosed me to adopt a Paleo diet. At first I was really hesitant because I was thinking I would be cutting out so many foods and it would be difficult. But after a few weeks of doing it daily pain I had been in for years went away and I wept from gratitude. I think a big part for easing body pain was going dairy free ( I eat certain chocolates here and there and am fine). I often bake with almond flour or coconut flour. There are a lot of great Paleo cookbooks out there and some wonderful websites for inspiration. Love the recipes in Danielle Walker's books. Instead of rice with dinner, I often have sweet potatoes or squash. Thanks for checking out more of my videos - appreciate it! Sending so much good energy your way for health and healing and a great 2024 :)

Hi Marcy, So nice to connect with you here. When I did my test I was getting exposure to gluten because I thought I was being "gluten-free" to treat my Hashimoto's but I was not eating celiac-safe gluten-free. So there was no eating of a big pizza or loaf of bread but definitely lots of cross contamination I didn't know I needed to avoid at the time. I tested positive even though I was only exposed/ingesting trace amounts of gluten for many months. (My health was so bad then there was no way I could ingest gluten for an official celiac test but those numbers were also high on the Cyrex test) Even being strictly gluten-free now the ataxia healing is up and down with no gluten exposures. Now to see me, most people would say - oh you are healed - you look fine. This is why I always say I try not to wake the sleeping giant. This month has been very hectic with some work I am doing and all of a sudden walking the other day, the ataxia hit mid-stride. I have also slurred and stuttered my words. (it has been a long time since this has happened) I know my nervous system is overwhelmed and needs a break. Are you in a stressful period right now or have you taken on too much? Even if emotionally you think you can handle things, sometimes the brain and nervous system need more calming. I look at it like my brain and body is used to knowing what energy reserves it has on a regular basis and if I overdue it, I am dipping into those reserves. Several people I have been in touch with say it comes and goes, goes up and down so it is not out of the normal. This is how it has been for me even without stress. Some people have full recovery going GF while others it is more of a roller coaster. I think of it as our brains are powerful but delicate energy sources that need more time to heal than other body parts :) Please make sure you are not getting any accidental CC - make-up, beauty products, handling pet food etc. - pouring dog food into a bowl was the worst for me and I didn't even touch it! Sending good vibes to you and healing energy!❤

Thanks for the❤ 😊 Do you happen to know if you need to be eating a gluten filled diet or not before being tested for the transglutaminase 6 antibodies?

Ignore (or detele) this comment since I didn't realize you already replied!!

Thank you so much for your thoughts on this crazy roller coaster ride as you call it. It sure seems that way. This is all relatively new to me. It was a little over a year ago when my balance issues started, and I have also dealt with two other autoimmune conditions before all of this. My doctor is now wanting to send me for further testing to attach a new autoimmune label to me since the recurrence of my balance issues. But instead I'm currently looking for a functional neurologist who specializes in ataxia to work with. As for stress.. I work with patients in their homes and many of them have balance and autoimmune/ brain conditions. It's definitely stressful to work with this population. It really messes with your head! I can also relate to what you said about the energy reserves of the brain. It seems I only have so much time I can spend in one position whether it's sitting or standing or sleeping or whatever before balance and muscle fatigue/ wobbly legs set in. It really upsets me that I can't exercise. I hope I will figure this out so that I can bring yoga and hiking back in to my life. That would be amazing. Thanks for the great tip on being strictly celiac-gluten free. Do you know of a good resource that lists those products and foods to watch out for? Like the lipsticks, and shampoos, etc.

@@marcyg321 I guess the one thing you have to know is that if your ataxia symptoms pop up it doesn't mean you have been glutened. You've just used up your reserves. I would know the difference now if I am overtired/stressed etc and have ataxia flares versus getting glutened. It is a learning curve and everyone's brain and body will react differently. I find yoga is quite hard on my body - the twists bring on ataxia. But Pilates is good because the movements are different and I am lying on the mat a lot of the time. There are some Pilates moves that are the same as what I did in physio. Look up Jane Anderson on verywellhealth.com - she really knows her stuff and has many great articles to help you navigate beauty products and other topics. I read every single label even if I use it regularly as companies and the ingredients in products fluctuate a lot. You've go this!!!

So glad the video helped put some puzzle pieces together. I tried to write down as many symptoms as I could think of when going through everything because I hoped it could help someone in the future. Hope you find the answers you need and your health continues to improve. Sending good energy your way!!

Sending so much good energy and healing energy your way. It takes a village with many health issues. So sorry for your experience. You and your health and energy matters every day and always 🤍