Good news!! I have an appt. next month at UF at the ataxia clinic with Dr. Subramony. I talked to their office and he is a specialist with ataxia including gluten ataxia and autoimmune ataxia! I hope to get some good info since the doctors I have gone to before don't seem to know much about it. I've been diagnosed with Celiac disease but not yet formally diagnosed for the ataxia symptoms I get. I am hoping to get some answers and maybe a better way I can cope. This past week, I have had symptoms every day and I avoid gluten. I"m either very sensitive and I'm getting trace amounts in gluten free products or something else may be going on. Any input from others experiences with gluten ataxia and getting diagnosed would be greatly appreciated!
I have ataxia, although it's not related to gluten. I hope you get the answers you deserve, Fantasia! My best to you..., ;o)
I am excited for you! I will keep this doctor’s name as gluten ataxia describes my symptoms when nothing else does. I have many celiac symptoms, but that doesn’t explain the sporadic dysrhythmic movement and seizures. I have been tested for MS, Charcot Marie-Tooth, Guillaume-Barre, and other things I don’t remember.
I hope you find an answer and are able to live a better life as a result! Keep us informed.
Hi Fantasia,
I asked my neurologist to refer me to the Ataxia clinic in Sheffield (I live in Hull, UK.) as my own neurologist was more familiar with other neurological conditions. At Sheffield Royal Halamshire Hospital all the patients with ataxia in the North of England meet with Prof. Hadjivassiliou who is internationally known for his research into gluten ataxia. I have been gluten free for 26 years as I had allergy testing for skin reactions. Thankfully the GP doing the tests determined that I was allergic to gluten.
At Sheffield Prof Hadjivassiliou says that my abstenance from gluten for skin and stomach conditions for those 26 years has been a blessing in disguise as the Ataxia only became noticeable 4 years ago and is progressing very slowly, but if I had eaten gluten it would be far more advanced.
I have not been diagnosed Celiac because when I requested a biopsy they said that I must eat wheat for 5 weeks to create antibodies. I couldn’t face that.
Now I don’t relish the thought of those gluten antibodies attacking my cerabellum.
Because I don’t eat any gluten, I react strongly to the slightest trace. Headaches, dizziness itchy skin etc.
It can’t do any harm missing it out of your diet, just a problem eating out.
I do hope that your referral goes well and you get to the bottom of it all.
All the best.
I’m VERY interested to hear how your appoint goes! I don’t know where UF is, but my Neuro has suggested gluten ataxia many times and wanted me to travel to mayo clinic. I live on the west coast in the US and just don’t have the money to go that far.
I was diagnosed with Celiac Disease in 2003. Have been GF and dairy free (allergic) every since. I have vestibular ataxia and other symptoms that flare up on my right side. All of my doctors have been stumped. They treat the symptoms and do tests but still haven’t figured it out. Please let me know how your appointment goes, if your willing to share? Thanks for the post
I had a blood test for Gluten sensitivity back in 2006. It showed that I came out on the normal end meaning that I wasn't sensitive to Gluten at all. But my Dr. said because I was borderline to go off and just see how I felt. In 2007 I went off all gluten. After 6 weeks I lost a sciatic nerve issue and thought more time off could even be better. So I was told to actually find out I'd have to go back on gluten just to see. But I feel so much better being off I'm not willing to go back on. It's not that hard anyway to stay off of gluten when you know what might happen (not absorbing Vit and minerals from foods etc.). I found that just giving up all flours it was easier for me to give up gluten. Label reading small letters was challenging for me.
Great news about your visit! Please let us know what you find out. I'm interested! :0) Thanks! :0)
Are you in Florida too? When you get seizures, how are they? I had someone tell me that what I get are seizures. She saw a reaction I had to gluten but I'm not sure. Hopefully the doctor will find out what is going on.
Aglutinous said:
I am excited for you! I will keep this doctor's name as gluten ataxia describes my symptoms when nothing else does. I have many celiac symptoms, but that doesn't explain the sporadic dysrhythmic movement and seizures. I have been tested for MS, Charcot Marie-Tooth, Guillaume-Barre, and other things I don't remember.
I hope you find an answer and are able to live a better life as a result! Keep us informed.
Oh wow, I have read so much about Dr. Hadjivassiliou!! It was through his articles and studies that I learned on my own what gluten ataxia is. My allergist is who told me to go on the gluten free diet. I had blood work that tested positive for celiac but when I did the endoscopy, it was negative. Which this doctor said is usual with patients have gluten ataxia. No one has seemed to be able to explain my symptoms. Thanks for the comments, I really appreciate it!
Lockie said:
Hi Fantasia,
I asked my neurologist to refer me to the Ataxia clinic in Sheffield (I live in Hull, UK.) as my own neurologist was more familiar with other neurological conditions. At Sheffield Royal Halamshire Hospital all the patients with ataxia in the North of England meet with Prof. Hadjivassiliou who is internationally known for his research into gluten ataxia. I have been gluten free for 26 years as I had allergy testing for skin reactions. Thankfully the GP doing the tests determined that I was allergic to gluten.
At Sheffield Prof Hadjivassiliou says that my abstenance from gluten for skin and stomach conditions for those 26 years has been a blessing in disguise as the Ataxia only became noticeable 4 years ago and is progressing very slowly, but if I had eaten gluten it would be far more advanced.
I have not been diagnosed Celiac because when I requested a biopsy they said that I must eat wheat for 5 weeks to create antibodies. I couldn't face that.
Now I don't relish the thought of those gluten antibodies attacking my cerabellum.
Because I don't eat any gluten, I react strongly to the slightest trace. Headaches, dizziness itchy skin etc.
It can't do any harm missing it out of your diet, just a problem eating out.
I do hope that your referral goes well and you get to the bottom of it all.
All the best.
I am also on the waiting list at the Mayo clinic and have been since December. Still don't have an appt. I know they are good but seems it is hard to get in for an appointment. They said the neurological department is pretty busy. So I googled ataxia clinics for gluten ataxia and the one from UF came up. They called me twice after receiving my information online. I asked them when I made the appt at UF if they were familiar with gluten and autoimmune ataxia. I got a call a week later from the department saying that the doctor was a specialist in ataxia including what I had inquired about. I also got an appt when I first called about 6 weeks out so I didnt think that was too bad. I'm probably more excited about this appt than I have been in awhile because they have knowledge about ataxia. I have not been to a specialist yet. I know how you feel about getting test after test and still no conclusions. I had been sick for 8 years before they figured out the gluten. I will definitely let you know how it goes!
MissCake2 said:
I'm VERY interested to hear how your appoint goes! I don't know where UF is, but my Neuro has suggested gluten ataxia many times and wanted me to travel to mayo clinic. I live on the west coast in the US and just don't have the money to go that far.
I was diagnosed with Celiac Disease in 2003. Have been GF and dairy free (allergic) every since. I have vestibular ataxia and other symptoms that flare up on my right side. All of my doctors have been stumped. They treat the symptoms and do tests but still haven't figured it out. Please let me know how your appointment goes, if your willing to share? Thanks for the post
Yes, I have so many people say to me....How do you do it? I couldn't be on that diet! But like you said when you know its your health and feeling better then you just do it. Mine started 8 years ago as stomach issues and then a few years ago is when the ataxia started. I'm not sure why the switch, maybe the antibodies decided it was time to attack something else. :) I will post how the appt goes and hope that if I get answers then maybe it can help others too!
Jeannie Ball said:
I had a blood test for Gluten sensitivity back in 2006. It showed that I came out on the normal end meaning that I wasn't sensitive to Gluten at all. But my Dr. said because I was borderline to go off and just see how I felt. In 2007 I went off all gluten. After 6 weeks I lost a sciatic nerve issue and thought more time off could even be better. So I was told to actually find out I'd have to go back on gluten just to see. But I feel so much better being off I'm not willing to go back on. It's not that hard anyway to stay off of gluten when you know what might happen (not absorbing Vit and minerals from foods etc.). I found that just giving up all flours it was easier for me to give up gluten. Label reading small letters was challenging for me.
Great news about your visit! Please let us know what you find out. I'm interested! :0) Thanks! :0)
Did she help you? Where is she located? My daughter is enduring her 4th Sporadic Ataxic episode since 2009. She has genetically tested positive for Non-celiac Gluten Ataxia and no Doctor in Delaware has helped in the 4 years I have lived here. EACH of them has said they are not familiar with Gluten Ataxia. At my wits end.
I will start looking for this doctor right now.
Lisa
I am also sensitive to trace amounts of gluten so I have to be very careful or my ataxia symptoms come right back. Gluten free products do bother me so I have them once in a while but not often. As long as I follow a totally gluten free diet I can do pretty much anything. I agree that most doctors have never even heard of ataxia as being associated with Celiac or gluten and I end up educating them. Hope Dr. Subramony can help you.
Hello Everyone,
I hope you are all having a nice summer!
Recently I had a celiac lab panel that came back mildly positive. My sister had just been diagnosed with celiac disease (mod to severe) and unbeknownst to the rest of the siblings, our youngest brother has it as well. We understand that it’s inherited. Our Dad likely had it as well.
I asked my neurologist here in the US (Dr. Susan Perlman) if this could finally be the cause for my late onset cerebellar ataxia and she said that even minimally testing positive could absolutely affect the ataxia. Next step is a visit to the gastroenterologist for further testing. I specifically can’t stop eating gluten until all testing is completed or it will skew the results, so for now I’m still eating things with gluten…(although I can’t help but feel that every time I do, I wonder if it’s likely doing more damage). It’s not an easy situation to be in, as I wait for answers, but overall, I’ve been doing incredibly well and am so grateful for that.
A little background on my story: My symptoms started out as oscillopsia in 2018 and then it got much worse in Aug of 2020. Brain MRI showed no cause at the time.
By Sept. my balance started going way off, judgment was poor, I had a lot of trouble walking, started having trunk and head tremors and my speech was getting slurred. It was agonizing not knowing why it started or what was happening to me. I went for months like this (from Sept to May) with literally no treatment or medication. I kept being referred from one neurologist to the next, before finally being put on Acetazolamide, which reduced symptoms dramatically for me. I still have a “shimmy” whenever I walk and tremors/slurred speech in the evenings off and on but at least it’s much better than before. I now have focal/partial seizures every so often, likely related to the ataxia, which ended up affecting my autonomic function. (If I get too chilled/too hot, I get seizures and I don’t get much warning.) An EEG will come this winter because that’s when I have them most often.
While I don’t know what the actual cause for my cerebellar ataxia is, I’m so ready to find out. It might be gluten ataxia and it might not. It could be happening for a multitude of reasons. No matter what the cause is, I’d just like to know. Even if it means a complete diet change.
Since it’s been a while since anyone has posted in this particular thread on Gluten Ataxia, I’m really curious how all of you are doing since then and have some questions. I would also love to hear from any others out there who have Gluten Ataxia and how you’ve been doing since you’ve gone gluten-free.
- Have you been gluten free all this time?
- Has it made an appreciable difference in your ataxia symptoms?
- Have any of you have further or recent testing?
- If you have cerebellar atrophy, did it slow down or still progress?
- Did you have any genetic testing specifically?
- Is it possible to have TG6 testing in the US now? (Dr. H discusses this in his videos)
- If you had/have seizures, did going gluten free eliminate or reduce them?
Thank you so much for your time and for responding. Ever since the test came back positive, I’ve been doing a lot of research on celiac disease–and specifically gluten ataxia on the web. I know that more than likely, I’ll be asked to go on a gluten free diet for the rest of my life but if this does end up helping to reduce my ataxia, I’m all for it.
Wishing you all a beautiful day today!
Cyndi
Best of luck! If Gluten Ataxia is indeed the problem, going Gluten free will probably take a few months before you see results. This is my understanding anyway.
Thank you, Chas!
I am really hoping that we’ve finally found the cause but like you said, it may take a few months to see results if this is it. The idea that my ataxia could be stable or possibly have some of the symptoms reversed is really exciting but I’m also going to be methodical about it. One wobbly step at a time… 
Hi Cirrus🙂
I test negative for Gluten Ataxia…but I have Gluten Sensitivity (not specifically Celiac) and am careful to monitor my intake of gluten. I feel it causes digestive issues, and possibly brain fog… My daughter (no ataxia) also has issues with gluten, mainly digestive, .but tests negative for Celiac.
Excessive sugar, yeast and carbohydrates (turn to sugar) also seem to affect me…I was previously told I had Candidiasis (this can cause Neurological issues). I’m not diabetic.
Prof Marios Hadjivassiliou…associated with Sheffield Ataxia Centre (UK) is a renowned authority on Gluten Ataxia.
Bear in mind…it’s not only food you need to be careful about…
There can be traces in beauty products and medications.
Type Gluten Ataxia in the searchbox (top right) to see links to previous mentions …