I am new to this forum and very happy that I have found you all. Your advise and ideas are needed and welcome.
My first diagnosis was in the hospital (2010) after a knee replacement when I had slurred speech, blurred vision, dizziness and nystamus. They told me I was having a TIA. This happened twice. After being treated for BPPV and migraines and going through 6 months of physical therapy for ataxia and dizziness plus different drugs I contacted Mayo Clinic and got an appointment. Mayo has diagnosed me with basal migraines and CSD (chronic subjective dizziness) my imbalance as ataxia and slurred speech as Dysarthria. I have blurred vision and dizziness (that is more of a rocking motion) attacks. . I have had these symptoms for 3 years now. My ataxia is getting worse each week. I went from once/twice week to daily and multiple attacks per day. Today 3 attacks
I am gluten sensitive and reading Living Without I just happen to see gluten ataxia mentioned. I have never heard this term before. I asked the doctors at Mayo if this could be the cause of my ataxia and they said unlikely because my ataxia is episodic.
My GP is an MD and a Holistic doctor and he said he could help me. This is the doctor who diagnosed me with gluten sensitivity. He immediately said we need to go totally strict on the Paleo Diet. And no gluten free breads, pasta. Follow the Paleo Diet and that means no cheese, diary, corn, beans, potatoes, sugar or rice. He immediately started treating me for "Leaky Gut Syndrome". Started me on supplements of L-Glutamine, Fish Oil, Probiotics, Flax and Chia Seeds, Coconut Oil and other digestive supplements. I am now on week 2 of these supplements. A nutritionist told me not to get discouraged that diary takes a full month to get out of your system. I am giving this treatment 6 months to see if I get any relief from my ataxia episodes.
My questions to everyone out there with unknown ataxia are:
1. Is your ataxia constant or is it episodic? How many attacks per day.
2. Has any mentioned "Leaky Gut Syndrome" to you?
3. Do you find that alcohol can bring on an episode?
4. Does stress bring on an immediate episode?
I feel so frustrated, scared and, until I found this web site. alone. Had no idea that so many are affected by ataxia.
My Ataxia is Sporadic and intermittant. They also have only been able to figure out that it isn't hereditary. Stress does exacerbate my condition, but as for alcohol I like to joke around that I have a great disorder because I can drink alot and still walk and talk the same. I have found that cycling and (god forbid) smoking seems to have slowed my progression.
My ataxia is continuous and progressive. I was diagnosed three years ago. I am also gluten sensitive but tests for gluten ataxia have proven negative. (strange coincidence?)I have had no gluten in my diet since 1986. No genetic link has been made but the consultant thinks it may be recessive genes. That means both my parents were carriers of the gene that caused the condition. I keep off alcohol as it makes me fall over and slur even worse. Never heard of 'Leaky gut syndrome'
Ataxia is still quite rare as nobody in my home town of Hull has it and so I travel to Sheffield where there's an Ataxia clinic.
1 in 40 thousand is something I read. That's one in a big football crowd. Makes you feel quite special.
I find that stress is definitely the worst contributor.
Great post thank you! I too have let go of gluten, refined sugars and also I included not eating any flours (ever) and I think the combination of that along with nothing in a bag or box (preservitives additives just fresh Organic clean natural foods) has sure has made a hugh diffrence for me. So seeing the resultse has made me a huge believer how what we eat can help heal our body or help our meds etc work even better!
I started with letting go of all gluten first back in 2006 then when I let go of everything elce back in 2008 I actually have improved some since I have been abstant of everything. I use my foods as meds now. It takes keeping track of what I eat and not eating the same veggies (vitimins and minerals) within a few days.
It sounds like it would be hard to do but it's really doable, not hard just a challenge. Exspecally when you get in the habbit, it's easy when you plan ahead. I also look at doing this as mental exercising. So it's helpful to keep the brain working better! :0)
I feel that emotional and spiritural goes along with the physical and the emotional. Keeping everything balanced is key. I really have gotten to the point of thinking now no matter what kind of ataxia anyone has.
Good Evening, I was very interested in your post, especially your mention of Leaky Gut Syndrome my grandson is Autistic and a lot of children are put on Gluten free diets which back 13 yrs ago was around 500.00 every two weeks, I have the article about gluten free diets for Gluten Ataxia if you would like me to e-mail it to you. Sadly this did not work, for my grandson. I do believe that diet does play a major role, I have given up all red meat, poultry, pork no eggs milk bread. I feel like a rabbit with lettuce tomatoes all greens. My Ataxia has progressed so rapidly, even with the diet but stress is really harmful, I do not drink at all but still feeling like I am going downhill, I am in constant pain and am on meds, which will have to be changed at next appointment I feel after 3 yrs they have stopped working. I see a Neurologist who also is a Motion Disorder Specialist. Do not be afraid, that causes stress, I have taken up Crochet, which is very relaxing and Yoga, and Meditation Positive thoughts. I do try to exercise but if I do too much, it takes three days to be able to move again. Everyone is different, I really feel joy for those who can still ride a bike I miss that the most. Take care
Welcome to this site, Aturtle2! I do not have Episodic Ataxia, as I was diagnosed 10 years ago with Sporadic Cerebellar Ataxia (unknown cause). It effects my gait/balance, dexterity, speech and swallowing, 24/7. I had a blood test for gluten sensitivity, which was negative. I believe stress and alcohol make my ataxia worse . Exercises for strength and balance and eating as healthy a possible (lots of fruits and veggies) seem to help. My ataxia is progressing, although slowly. I have no idea why I have this, as no one in my family as far back as we know has/had ataxia. Guess I'm special...,ha! Last year I had genetic testing for the known recessive types of ataxia, which was negative. Anyway, that's my story, hope it helps! This site is wonderful for advice, understanding and support...,glad you found us! My best to you.., ;o)
Welcome to the website. Not all ataxias are progressive and if they are progressive, the progression is different for everyone. I have episodic ataxia type 2 (ea2) my triggers are caffeine, stress, alcohol and high impact exercise but again there are different triggers for different people. My EA is progressing but fortunately very slowly. I am on a drug called diamox. For me it has been a wonder drug, without it, I would be housebound. With it, I work full time as a teacher. It doesn’t work for everyone but when it does, it is great - it is generally only used with EA 2 though
Louise what tests did they use to diagnose you wit EA2? I feel so lost right now with so many different opinions.
Louise Davy said:
Welcome to the website. Not all ataxias are progressive and if they are progressive, the progression is different for everyone. I have episodic ataxia type 2 (ea2) my triggers are caffeine, stress, alcohol and high impact exercise but again there are different triggers for different people. My EA is progressing but fortunately very slowly. I am on a drug called diamox. For me it has been a wonder drug, without it, I would be housebound. With it, I work full time as a teacher. It doesn't work for everyone but when it does, it is great - it is generally only used with EA 2 though :)
Welcome to this website, aturtle2! I’m a new member too, but find all contrbutions/ comments v helpful. Sorry can’t add any answers to your questions, but please know your part of a great group . Personally, my Lord helps me and helps me to keep positive at harder times. Keep hoping, Muriel t
Mine is constant. And yes alcohol makes it much worse. Stress does to. No your not alone. You have us. Yes I felt alone till I found this site. But since you are gluten sensitive. Stopping gluten will help. Good luck!
First goto ataxia.org and log on to the BB or bulletin Board. It is monitored ataxia specialists And reviewed daily by them
Seconed download from the home page, thr Ataxix fact sheets. you can scroll through them to find the One that most closely matches your symptoms 8/ your ataxia hereditary, dominant, recessive, etc… They will help you determine.
Goto the list of ataxia specialists near you and ake an appointment to discuss testing for particular ataxia…the fact sheets,
Although many ataxians have gluten sensivity, that ay not be the cause of your ataxia.
This should be a good start.
Good luck.
An Old Ataxian
.
I have Gluten Ataxia from Celiac Disease. There are many people here who have gluten ataxia or are just significantly affected by gluten. I suspect I had leaky gut before I went gluten free 4 years ago. My guts are now healed.
If I accidentally eat any gluten (microscopic amount) When I'm having an episode it last at least 3 weeks. The mornings are better.
To answer your questions:
1. Episodic now that I'm gluten free
2. Yes
3. Not any alcohol, just those with gluten (beer). Keep in mind that Ataxia is coming from problems with your cerebellum part of your brain. Anything that messes with your brain (alcohol included) will affect your ataxia. Eating foods that are anti-inflammatory can also be very helpful.
4. Yes. Being in situations that cause my brain to be overwhelmed (too much noise and bright lights) cause my ataxia to get immediately worse. I always have to be in a wheelchair at an airport.
In case no-one else has mentioned Dr Marios Hadjivassiliou he is the world expect on the subject of gluten ataxia.
And it described my daughter and what I have observed in her. This woman is a neurologist and she explains the connection between leaky gut and the brain.
Don't let the title turn you off, as it first did for me. I never would have read it based on that title had a friend not recommended it to me.
I have gluten ataxia. It is episodic. I am on a rigid gluten free diet and a light dairy free diet. I got genetic testing done through enterolab.com. Before that doctors were confused that my condition was worsening even though they were trying everything they knew. Going gluten free felt wonderful. You make a lot of mistakes but when you have done it for awhile its get much easier. I've been gluten free 3 1/2 years, and now it is normal for me. Going gluten free isn't just food. Gluten is in lipstick, makeup, lotions, soaps, toothpaste, shampoos, etc. Go to celiac.com for some lists. My rule is I must check everything that goes on my skin, hair, and into my mouth. If in doubt, I don't use it. Call or go on line to the products you use to check for gluten. You will be surprised at how many products you are currently using have gluten in them. Watch out for cross contamination of gluten from cutting boards (I bought red ones for gluten free) to pots and pans. Major restaurant chains usually have gluten free menus. Amazon, Whole Foods, Sprouts, and Nugget stores have a wide selection of gluten free foods. I don't drink alcohol anymore. It made things worse. Yes, Yes, stress really affects you whether it is good or bad. Unfortunately, both of my children and one of my grandsons also have the gluten gene pass from me. Ahbee
Aturtle2 hi,
I am new to this forum too.
Two years ago I was diagnosed with EA2 but I am still waiting for the genetic tests! I am Italian and decided to accept a posting in the United States 4 months ago. Also for me Diamox tablets have been very useful. However I still have episodes. I am looking for a good neurologist specizlized in EA2 here in the US, I live in Washington. Maybe someone can help me…
My Ataxia is episodic. Diamox helps reduce the “episodes”.
Recently I am feeling very sick, urinary and colon pains, it’s 4 moths and nobody has understood waht is going on. So maybe I do have this leaky gut illness…The gastroenetrologist wants to rule out Chron Desease. Nobody ever knows anything about episodic ataxia so I will talk about this illness that I have just learnt of to him…
Alcohol always effects episodes
But especially stress, both physical and psychological.
It’s the first time a join a forum…I am a little confused.
There is lots of things I would like to write but then time…is never enough.
I am quite sick these days, I am actually about to go to the general physician: red blood in my feces, a lot…I don’t, know if its linked to the ataxia. And pain pain…
