Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Gluten ataxia

Vicrob

By Vicrob
in Related Issues & Disorders

 Share

Recommended Posts

Vicrob Apprentice
Vicrob
Posted

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. 

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


trents Grand Master
trents
Posted

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 Mentor
ravenwoodglass
Posted

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 Apprentice
Vicrob
Posted
  • Author
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 Grand Master
trents
Posted
(edited)
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 by trents
Russ H Community Regular
Russ H
Posted

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 Contributor
Mathew
Posted
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?

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


Vicrob Apprentice
Vicrob
Posted
  • Author
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 Mentor
ravenwoodglass
Posted
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 Mentor
ravenwoodglass
Posted
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 Apprentice
Vicrob
Posted
  • Author
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 Community Regular
Russ H
Posted
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 Grand Master
knitty kitty
Posted

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. 

 

  • 1 month later...
CareyOsborne Rookie
CareyOsborne
Posted

Thanks for sharing your story.  

 

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
 Share
Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      130,200
    • Most Online (within 30 mins)
      7,748
    vickymd
    Newest Member
    vickymd
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • lizzie42
      Is tTG 9 normal after 4 months gluten-free?

      By lizzie42 · Posted

      It says normal is less than 5. 
    • RMJ
      Is tTG 9 normal after 4 months gluten-free?

      By RMJ · Posted

      The test result will never be shown as zero because the most negative the result can be reported as is less than the lowest amount the test can detect.  For example, you might see <2. What is the normal range for your daughter’s test?  Antibodies can hang around in the body for a while. Even if her result is not yet in the normal range, going from more than 100 to 9 in a few months is great! Good job, mom.
    • lizzie42
      Is tTG 9 normal after 4 months gluten-free?

      By lizzie42 · Posted

      My daughter has been gluten-free about 4 months. Prior, her tTG was over 100 (test maxed at 100). Her liver, iron, vit d are all normal again and she has grown 2 inches and gained 4.5 pounds in just 4 months! It's amazing. But her tTG is still at 9. Is that normal or should it be zero? Is she still getting gluten? We are SO strict. We don't eat out.  She was previously having tummy pain still. I cut oats completely 3 weeks ago and that is gone.  Can gluten-free oats raise tTG? Would I know based on symptoms? I was going to try her on oats again now that she doesn't say her tummy hurts anymore.  Also, our house is gluten free apart from one loaf of bread my husband uses. He makes sandwiches on a plate then puts it in the dishwasher. Yesterday when my celiac kids weren't home, my youngest and I ate "real" pasta. I was SO careful. All pans went in the dishwasher, I didn't spill any, I cleaned the sink I drained it in. Today my girl has her dermatitis herpetiformis rash back and had a huge hour long meltdown then fell asleep. Just like before diagnosis. Is it that hard to avoid cross contamination? Will one crumb off the plate or me cooking pasta when she's not home get her?  Again, we do not eat out, she's not in school yet, and she doesn't eat anything I don't give her. 
    • knitty kitty
      TTG IgA and IGA elevated mildy

      By knitty kitty · Posted

      Hi, @thejayland10, Do you still consume dairy?  Dairy can cause increased tTg IgA levels in some people with celiac disease who react to casein, the protein in dairy, just like to gluten.   You might try cutting out the processed gluten free foods.  Try a whole foods, no carbohydrate Paleo diet instead, like the AIP diet (the Autoimmune Protocol Diet by Dr. Sarah Ballantyne, a Celiac herself). Processed gluten free foods can be full of excess carbohydrates which can alter your microbiome leading to Small Intestinal Bacterial Overgrowth (SIBO).  SIBO is found in some people who are not responding to a gluten free diet.  SIBO can elevate tTg IgA levels.  The AIP diet cuts out sources of carbohydrates like rice, potatoes (nightshades), quinoa, peas, lentils, legumes, which starves out the SIBO bacteria.  Better bacteria can then proliferate.   I followed the AIP diet to get rid of my SIBO.  It's a strict diet, but my digestive tract had time to rest and heal.  I started feeling better within a few days.  Feeling improvement so soon made sticking to the AIP diet much easier. References: Small intestinal bacterial overgrowth among patients with celiac disease unresponsive to a gluten free diet https://pmc.ncbi.nlm.nih.gov/articles/PMC7759221/   Luminal antigliadin antibodies in small intestinal bacterial overgrowth https://pubmed.ncbi.nlm.nih.gov/9260801/#:~:text=Luminal total IgA concentrations (p,response to local bacterial antigens.   Potato glycoalkaloids adversely affect intestinal permeability and aggravate inflammatory bowel disease https://pubmed.ncbi.nlm.nih.gov/12479649/
    • trents
      New to gluten free living, in5ro and small question

      By trents · Posted

      First, welcome to the forum, @boy-wonder! Second, a little clarification in terminology is in order. Granted, inconsistency is rampant when it comes to the terminology associated with gluten disorders, but it has more or less become settled in this fashion: "Gluten intolerance" is a general term that car refer to either celiac disease or NCGS (Non Celiac Gluten Sensitivity). "Gluten Sensitivity" is the shortened version of NCGS. Third, Celiac disease is not an allergy to gluten. It is an autoimmune disorder characterized by gluten ingestion causing the immunes system to attack the lining of the small bowel, causing damage to it over time due to the constant inflammation that wears down the "villi" (mucosal finger-like projections that make up the lining). Over a significant period of time as gluten continues to be consumed, this generally results in impaired nutrient absorption. There are specific blood antibody tests available to check for celiac disease but the testing will not be valid while on a reduced gluten diet or a gluten free diet. Those already having having begun a gluten free diet must go back to consuming generous amounts of gluten for a period of weeks if they wish to pursue testing for celiac disease. Fourth, NCGS shares many of the same symptoms of celiac disease but does not damage the lining of the small bowel as does celiac disease. There is no test for it. A diagnosis for NCGS depends on first ruling out celiac disease. It is 10x more common than celiac disease. Some experts feel it can be a precursor to the development of celiac disease. Eliminating gluten from your life is the antidote for both. Fifth, you state that you are convince you don't have celiac disease by are just "gluten intolerant" (aka, gluten sensitive). How do you know that? It seems to me you are making a dangerous assumption here. I suggest you consider getting formally tested for celiac disease.
×
×
  • Create New...