Gluten ataxia

[Vicrob]

It took years  to realise it was gluten making me poorly but I’d cut it out my diet when I was finally tested. So, not diagnosed celiac and presume it’s gluten ataxia due to lesions on cerebellum. I’m much better yet still have mild neuropathy especially if I’m feeling unwell. I take thiamine and magnesium for it. I’ve had problems with liver enzymes but last test I was ok. Taking to my neurologist I’m told it’s unrelated to my gluten issues , I’m wondering why when I read lots of the time that it is indeed related to celiac disease - which is gluten related? I tested positive for both gluten intolerance genes. I no longer have awful migraine or dizzy spells. Ok I’m off balance and fall but I’m stable ish. Are there medical opinion differences linking liver enzymes to gluten intolerances ? 

[knitty kitty]

@Vicrob,

There's a connection between increased liver enzymes and Thiamine deficiency.  Thiamine deficiency is a result of malabsorption due to Celiac Disease and increased demand during illness.  

Thiamine deficiency can cause Ataxia.  Thiamine deficiency can cause lesions on the brain.  Thiamine deficiency can cause neuropathy.  Thiamine deficiency causes migraines.  

Thiamine needs the other seven B vitamins to function properly.  You should add a B Complex and Vitamin D.  

How much and what kind of Thiamine are you taking?

References:

High-dose vitamin B1 therapy prevents the development of experimental fatty liver driven by overnutrition

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7988776/

Thiamine deficiency-related brain dysfunction in chronic liver failure

https://pubmed.ncbi.nlm.nih.gov/19067139/

B Vitamins and the Brain: Mechanisms, Dose and Efficacy—A Review

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4772032/

The Effect of a High-Dose Vitamin B Multivitamin Supplement on the Relationship between Brain Metabolism and Blood Biomarkers of Oxidative Stress: A Randomized Control Trial

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6316433/

Edited April 17 by knitty kitty
Typo

[Vicrob]

Thank you I’m taking thiamine benotiamine daily and am much better. But my neurologist tells me my elevated liver enzymes have nothing to do with my gluten ataxia. My latest blood test showed my enzymes as ok but periodically they seem to elevate. I’ve noted it’s when I’m unwell. Also after a mild attack of my central nervous system (like guillaine barre) - after the flu jab - mY EMG nerve study test was negative. Yet I had swallowing issues, speech slurring and chronic cramps/nerve pain/muscle fluctuations for over 2 months. I think I’m really complicated ! 

[trents]

There is no question that elevated liver enzymes are connected with celiac disease. That is a well established fact. I was one of those and mild but chronically elevated ALT and AST was what led to my celiac diagnosis. About 18% of celiacs have elevated liver enzymes. I would not trust a neurologist to give a valid answer to your question about that. He/she was out of their lane.

Edited April 17 by trents

[knitty kitty]

@Vicrob, 

Have your swallowing issues, speech slurring and chronic cramps/nerve pain/muscle fluctuations improved since starting to take Benfotiamine?

Those are all symptoms of Thiamine deficiency disorders.  

How much Benfotiamine do you take a day?  

[Vicrob]

I’ve been taking thiamine and B complex for a few weeks now. Since the flu jab last October I’ve not been well. I think I suggested some awful attack on my nervous system. It affected my speech and swallowing and I couldn’t walk.  I couldn’t be tested for celiac as I’d come off gluten, realising myself that I had issues.  I’m now struggling with electric pinging all over, itching on my back and arms and pins n needles in my hands and arms. My bones really ache, hips, knees and ankles. I feel really weak and I’ve lots of mucus in my throat. I think even though I’m strictly gluten-free tor almost 2 years I’m still suffering some autoimmune reaction. I carry the gluten intolerance genes. I’ve just contacted the ataxia clinic in a bit of a panic. I’m thinking this is really serious now. 

[Scott Adams]

If you think you might have Guillain-Barre syndrome you should definitely seek medical attention, as it could be serious. Gluten ataxia is a condition that some people with celiac disease get due to nerve damage caused by eating gluten, but only a medical expert would be able to tell you the cause of your specific issues. 

[Vicrob]

Of course I did seek medical attention, this was October 23. I saw two neurologists and had EMG nerve study back in U.K. which was negative. By the time I saw the neurologists I was in recovery - I was stuck abroad with whatever was happening to me and flew back a month afterwards. It was sort of said I’d had a virus and reaction - nothing to do with the flu jab. I still disagree I think it was mild GBarre. The only thing all these tests have shown so far are lesions on my cerebellum. I definitely have ataxia and I definitely can’t consume gluten  and I have the genes. Maybe I’ve got to accept that whatever is going on is not able to be diagnosed. I just need to be told that perhaps. 

[Scott Adams]

Changes in the white matter of the brain can be part of long term celiac disease, and here are some articles where this is discussed:

https://www.celiac.com/search/?q="white matter"&quick=1&type=cms_records2&updated_after=any&sortby=relevancy

These two in particular:

 

 

[heyitsme]

Liver enzymes can 100% rise in celiacs where they eat gluten. I'm great example of that myself. ALT would jump to 50-100 when normally it's about 20. It only jumos higher after consuming gluten for some time (For me first time it was raised when I didnt know I was celiac, so I obviously ate lots of gluten, and second time long time later when I unconsciously was consuming very small amounts of gluten but quite regularly) and after stopping it goes back to normal within 2 months. 

[Vicrob]

Thank you it follows. I’m probably celiac but refused to start eating gluten to facilitate the test. My enzymes raised when I had covid for sure, but the ataxia clinic didn’t accept that. My last LFT was ok but they seem to keep on insisting it’s not related to my condition. My last blood tests also showed no gluten has passed my lips. I’m so strict now. 

[heyitsme]

@Vicrob Have you done endoscopy and biopsy to check how it all looks inside?

[heyitsme]

On 4/17/2024 at 11:10 AM, knitty kitty said:

There's a connection between increased liver enzymes and Thiamine deficiency. 

@knitty kittyVery interesting. Do you have some more anecdotal info on that, or should I just google this? 

[knitty kitty]

High-dose vitamin B1 therapy prevents the development of experimental fatty liver driven by overnutrition

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7988776/

Thiamine deficiency disorders: a clinical perspective

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8451766/

Thiamine and benfotiamine: Focus on their therapeutic potential

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10682628/

You can Google "thiamine and elevated liver enzymes nih" for other studies...

[Vicrob]

This is interesting. I was working in an hotel preparing yummy wheat laden  bfast (eating it too) when I had the liver symptoms, fatigue, itchy skin, white poo etc. Then a year later another job in U.K. led me to eat more bread and I worked Wed, Thurs, Fri each week. By Friday nite I had crippling pain back of head, spinning sensations and vomiting. It was almost like my brain was swelling. This is when I believe the lesions formed in the cerebrum.  It was during this time my liver enzymes went mad and ever since they have fluctuated ( even though I’m gluten-free) It happened when I had covid and triggered neuropathy. It all started again after the flu jab for over 65s. I was really poorly and still think I had mild G Barre - although the EMG nerve test was negative. I’m currently having some kind of flare up of whatever it is and my muscles are weakening daily with nerve pinging etc. I’ve just had MRI to test lower spine but I think I’m a way off diagnosis as my neurologist says it’s not neurologic. I think I would be a very interesting case study. Sorry this is a bit long 

[Scott Adams]

I will only comment on the possibility that your symptoms are related to nerve damage caused by gluten, AKA gluten ataxia, and if that is the case, besides needing to be 100% gluten-free you likely will also need to also take various supplements to help you recover.

The most common nutrient deficiencies associated with celiac disease that may lead to testing for the condition include iron, vitamin D, folate (vitamin B9), vitamin B12, calcium, zinc, and magnesium.  Unfortunately many doctors, including my own doctor at the time, don't do extensive follow up testing for a broad range of nutrient deficiencies, nor recommend that those just diagnosed with celiac disease take a broad spectrum vitamin/mineral supplement, which would greatly benefit most, if not all, newly diagnosed celiacs.

Because of this it took me decades to overcome a few long-standing issues I had that were associated with gluten ataxia, for example numbness and tingling in my feet, and muscle knots--especially in my shoulders an neck. Only long term extensive supplementation has helped me to resolve these issues.