Gluten ataxia

[Vicrob]

Hi. A recent MRI has confirmed I have gluten ataxia. I feel very tired and think I may need a vitamin supplement. No doctor appointment for 3 weeks. Can anyone suggest a supplement. I’ve had D tablets before but this could be B12, magnesium, iron or zinc. I believe I have a problem with absorption due to the gluten ataxia which affects my cellebrum not gut. 

[trents]

Why would you have a problem with absorption if gluten affects the brain but not the gut? Have you actually been tested for celiac disease while still consuming regular amounts of gluten? Have you been attempting to eat gluten free and still having an issue with gluten ataxia or are you having a problem with gluten ataxia because you are not attempting to eat gluten free? More information concerning your "gluten sensitive journey" would be appreciated.

[ravenwoodglass]

I found supplementing with B12 and a good stress B and C to be helpful in healing along, of course, with a VERY strick gluten free diet. You want the antibodies to stop the attack on your nervous system and even a small amount seemed to cause a set back. A good physical therapist also helped a great deal. Even after over 20 years post diagnosis I still get a bit off balanced if glutened but for the most part healing has been good. It did take what seemed like a long time but after six months strictly gluten free I could walk unaided. I hope you heal quickly.

I often wonder if a repeat MRI now would still show the lesions but likely will never know if they resolve or if undamaged brain takes over to restore balance and reslove other nervous system issues.

[Vicrob]

2 hours ago, trents said:

Why would you have a problem with absorption if gluten affects the brain but not the gut? Have you actually been tested for celiac disease while still consuming regular amounts of gluten? Have you been attempting to eat gluten free and still having an issue with gluten ataxia or are you having a problem with gluten ataxia because you are not attempting to eat gluten free? More information concerning your "gluten sensitive journey" would be appreciated.

Hi. I’ve been suffering for 10 years and only diagnosed Jan 23. My balance has got steadily worse, raised liver enzymes , migraines etc. A celiac test was negative. I ended up with neuropathy and palpitations. Since my diagnosis - which I got by asking my GP to send me to an ataxia centre at Sheffield for MRI, I’m a bit better. Neuropathy gone! I’ve been gluten-free now since June 22 as I realised there was a link. I’ve been low on vitamin D before and as I feel very tired and achey im thinking I could be low again, but I don’t know why if im now gluten-free and eat well. My MRI shows lesions on the cellebrum but no shrinkage. I’ve a follow up appointment in 2 weeks and lots of questions. 

[trents]

54 minutes ago, Vicrob said:

Hi. I’ve been suffering for 10 years and only diagnosed Jan 23. My balance has got steadily worse, raised liver enzymes , migraines etc. A celiac test was negative. I ended up with neuropathy and palpitations. Since my diagnosis - which I got by asking my GP to send me to an ataxia centre at Sheffield for MRI, I’m a bit better. Neuropathy gone! I’ve been gluten-free now since June 22 as I realised there was a link. I’ve been low on vitamin D before and as I feel very tired and achey im thinking I could be low again, but I don’t know why if im now gluten-free and eat well. My MRI shows lesions on the cellebrum but no shrinkage. I’ve a follow up appointment in 2 weeks and lots of questions. 

When was your celiac testing done in relation to going gluten free? Before or after? Celiac diagnostic antibody tests will be negative if the gluten free diet was started weeks or months ahead of the antibody testing. The symptoms you describe (migraines, elevated liver enzymes) are often associated with ceiliac disease.

Edited April 4, 2023 by trents

[Russ H]

It is possible to have an immune response to tTG6 alone without having antibodies to tTG2, so testing negative for coeliac disease while having gluten ataxia.

18 hours ago, Vicrob said:

Hi. A recent MRI has confirmed I have gluten ataxia. I feel very tired and think I may need a vitamin supplement. No doctor appointment for 3 weeks. Can anyone suggest a supplement. I’ve had D tablets before but this could be B12, magnesium, iron or zinc. I believe I have a problem with absorption due to the gluten ataxia which affects my cellebrum not gut. 

Gluten ataxia is considered to be a result of the immune response on the brain rather than a nutritional deficiency. It is vital to adhere to a strict gluten-free diet. I would take a good multivitamin rather than taking individual supplements.

[Mathew]

On 4/4/2023 at 6:30 PM, ravenwoodglass said:

I found supplementing with B12 and a good stress B and C to be helpful in healing along, of course, with a VERY strick gluten free diet. You want the antibodies to stop the attack on your nervous system and even a small amount seemed to cause a set back. A good physical therapist also helped a great deal. Even after over 20 years post diagnosis I still get a bit off balanced if glutened but for the most part healing has been good. It did take what seemed like a long time but after six months strictly gluten free I could walk unaided. I hope you heal quickly.

I often wonder if a repeat MRI now would still show the lesions but likely will never know if they resolve or if undamaged brain takes over to restore balance and reslove other nervous system issues.

Did the mri show UBOs?

[Vicrob]

On 4/4/2023 at 6:30 PM, ravenwoodglass said:

I found supplementing with B12 and a good stress B and C to be helpful in healing along, of course, with a VERY strick gluten free diet. You want the antibodies to stop the attack on your nervous system and even a small amount seemed to cause a set back. A good physical therapist also helped a great deal. Even after over 20 years post diagnosis I still get a bit off balanced if glutened but for the most part healing has been good. It did take what seemed like a long time but after six months strictly gluten free I could walk unaided. I hope you heal quickly.

I often wonder if a repeat MRI now would still show the lesions but likely will never know if they resolve or if undamaged brain takes over to restore balance and reslove other nervous system issues.

Thanks for that encouragement. I’ve been strict gluten-free since June 22. I’m no worse balance wise and better in that my neuropathy has gone. I seem to be having some days when I feel more off balance than others. When I’ve examined my diet associated with the off days, I cannot see any reason for it. I’m wondering if there is any other reason for this happening? 

[ravenwoodglass]

4 hours ago, Mathew said:

Did the mri show UBOs?

Yes it did. They thought I had MS but a spinal tap didn't show any of the debris found with MS. I was then told they were just something that lots of people had and I jjust wanted to be sick. I wasn't diagnosed until a few years later.

[ravenwoodglass]

3 hours ago, Vicrob said:

Thanks for that encouragement. I’ve been strict gluten-free since June 22. I’m no worse balance wise and better in that my neuropathy has gone. I seem to be having some days when I feel more off balance than others. When I’ve examined my diet associated with the off days, I cannot see any reason for it. I’m wondering if there is any other reason for this happening? 

It isn't uncommon to have good days and bad days for quite a while. The nervous system can take a longer time to heal than we would like. Sometimes gluten reactions can be delayed, in my case most smptoms hit 3 days later but some may find a reaction the same day. A food and symptom diary can be helpful for finding a pattern for glutenings and reaction time.

[Vicrob]

6 hours ago, Mathew said:

Did the mri show UBOs?

I’ve only had a letter saying there are ‘changes’ in my cellebrum, but it’s not changed in size. So, until my appt with the neurologist in 2 weeks I don’t know much more. She says I’m referred to the ataxia clinic. I’m prepared for the ‘changes’ to be permanent but rather scared of getting any worse. Hence my strict diet. Are the UBOs bad news? Awful it’s taken 10 years to diagnose and in the end I diagnosed it myself and  had it confirmed by MRI. 

[Russ H]

20 hours ago, Vicrob said:

I’ve only had a letter saying there are ‘changes’ in my cellebrum, but it’s not changed in size. So, until my appt with the neurologist in 2 weeks I don’t know much more. She says I’m referred to the ataxia clinic. I’m prepared for the ‘changes’ to be permanent but rather scared of getting any worse. Hence my strict diet. Are the UBOs bad news? Awful it’s taken 10 years to diagnose and in the end I diagnosed it myself and  had it confirmed by MRI. 

UBOs or white matter lesions are common in the general population - about 1 in 4 young adults and most elderly adults have them.

[knitty kitty]

UBOs can be found in Thiamine deficiency.  

Cerebellar spots...

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2854955/

And...

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9945014/

And...

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9402833/

And...

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4728174/

Thiamine deficiency can be caused by Celiac Disease.  Celiac Disease damages the area of the small intestine where vitamins like thiamine are usually absorbed.  

The World Health Organization says that administration of high dose Thiamine should be tried when thiamine deficiency is suspected.  Blood tests for thiamine levels are inaccurate.  

Since Thiamine is harmless and nontoxic even in high doses, 500 mg (minimum) to 2000 mg a day for several weeks should be tried.

High dose Thiamine resolved my ataxia and neuropathy.  

Doctors don't recognize vitamin deficiencies anymore.  

Thiamine deficiency is called Wernicke's Encephalopathy.  Bright spots can be seen in certain areas of the brain.  Wernicke's Encephalopathy can progress to Korsakoff syndrome (dementia).  Neither is fun.

Talk to your doctor about high dose Thiamine.  Doctors may order intravenous thiamine.

Blood tests for thiamine levels should be taken before supplementing.  After beginning supplementing, blood tests will reflect the supplemental thiamine. 

 

[CareyOsborne]

Thanks for sharing your story.