Gluten Ataxia / Hypotonia (Low Muscle Tone)

[Brent22]

Hi all, 

 

Just curious if anyone has hypotonia (adults) and if you've seen any improvement after going gluten free? 

 

Thanks

[trents]

Brent, welcome to the forum! 

Hypotonia can have many causes. What is your age and have your physicians been able to diagnose a cause apart from a gluten-related disorder? 

I have not heard specifically of hypertonia in connection to gluten-related disorders. But it seems new connections between celiac disease/NCGS (Non Celiac Gluten Sensitivity) and other medical issues are being made all the time.

What we do know is that neurological problems are frequently tied to gluten-related disorders. So, if your hypotonia is neurologically based I would say there is a distinct possibility it is tied to gluten and if so, you can expect to see improvement from going gluten free.

[Brent22]

Thanks for the quick reply, I'm close to 40.

I did see a neurologist, gastro, immunologist, lol.. No one can say for sure what is wrong although the immunologist was able to help get my digestion under control, interesting that the gastro couldn't... All I know is gluten gave me this burning feeling in the back of my head right where cerebellum is. I've cut out gluten for the last couple months and the burning feeling is pretty much gone.  My suspicions were confirmed (at least in my head) when I had a burger with no bun from a fast food place. I felt really sick for two days but I couldn't figure out why. Then I went on their menu and it turns out there is wheat in their patties! 

Anyway, I know the cerebellum has control over muscle tone so I'm just hoping over time it comes back. Weight lifting is helping with strength but not really tone. I feel like an old car with a manual transmission that has some slack in the driveline! 

[trents]

33 minutes ago, Brent22 said:

I feel like an old car with a manual transmission that has some slack in the driveline! 

Great analogy! Made me laugh!

Have you had hypotonia from infancy or was the onset later in life?

[Brent22]

Lol! 

Never had any issues before, all of a sudden 2 years ago started having crazy digestion problems, it was just bacterial overgrowth which was causing malabsorption which I thought was why my muscles were weird, so cleaned that up, but still was having trouble. As soon as I eliminated the Gluten some things started getting better, but still have low tone. 

[trents]

Have you received an official diagnosis of celiac disease? Have you been tested for celiac disease?

[Brent22]

Was tested but negative. 

[trents]

9 minutes ago, Brent22 said:

Was tested but negative. 

But you may have NCGS which shares with celiac disease many of the same symptoms including neurological deficits.

[Brent22]

I definitely think so! 

[MissyMM]

This is interesting to me because despite working out a few times a week for a few years now, I feel like I should be able to lift heavier weights but just can’t seem to get past 15 pound dumbbells.  Although I’ve seen an increase in muscle tone, it’s like I can’t get stronger/more toned.  I was negative when tested for celiac but looking back (several years) I might have skewed those tests by unintentionally not eating enough gluten (didn’t know much when doctor suggested testing but was messing around with diet).  I definitely know I have an issue with gluten as I break out in rash on hand after eating it (along with other symptoms that have gone away over time) and I also notice an increased reaction these days if I slip up and eat it.

[shadycharacter]

On 9/28/2022 at 7:07 PM, Brent22 said:

Thanks for the quick reply, I'm close to 40.

I did see a neurologist, gastro, immunologist, lol.. No one can say for sure what is wrong although the immunologist was able to help get my digestion under control, interesting that the gastro couldn't... All I know is gluten gave me this burning feeling in the back of my head right where cerebellum is. I've cut out gluten for the last couple months and the burning feeling is pretty much gone.  My suspicions were confirmed (at least in my head) when I had a burger with no bun from a fast food place. I felt really sick for two days but I couldn't figure out why. Then I went on their menu and it turns out there is wheat in their patties! 

Anyway, I know the cerebellum has control over muscle tone so I'm just hoping over time it comes back. Weight lifting is helping with strength but not really tone. I feel like an old car with a manual transmission that has some slack in the driveline! 

The Purkinje cells in the cerebellum can be affected by gluten. 

"Patients with gluten ataxia have antibodies against Purkinje cells. Antigliadin antibodies cross-react with epitopes on Purkinje cells." 

https://pubmed.ncbi.nlm.nih.gov/11971090/

Interesting that you could actually feel a burning sensation in the area of the cerebellum. 

[Brent22]

This is great info thank you

[knitty kitty]

Thiamine deficiency can cause hypotonia!  

Purkinje cells in the cerebellum are affected by thiamine deficiency.

Thiamine Deficiency Increases Intrinsic Excitability of Mouse Cerebellar Purkinje Cells

https://pubmed.ncbi.nlm.nih.gov/33098550/

"We conclude that thiamine deficiency causes significant but reversible changes to the electrophysiology properties of Purkinje cells prior to pathological morphological alterations or cell loss. Thus, the data obtained in the present study indicate that increased excitability of Purkinje cells may represent a leading indicator of cerebellar dysfunction caused by lack of thiamine."

Thiamine deficiency symptoms...

https://www.ncbi.nlm.nih.gov/books/NBK537204/

[Brent22]

Thanks! I'll keep this in mind, in my case I'd be surprised since b12 was ok, and I'm taking a supplement. 

[knitty kitty]

B12 can be stored in the liver for a couple of years.  B12 deficiency symptoms can occur before there's a change in blood levels.  If B12 is ok, that doesn't mean that you are not low in the other B vitamins.

There are eight B vitamins.  They all work together.  

In Thiamine deficiency, the Thiamine transporters are switched off.  To get Thiamine into the cells and turn the Thiamine transporters back on, higher than normal Thiamine intake is required.

This article explains...

Hiding in Plain Sight: Modern Thiamine Deficiency

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8533683/

[Brent22]

Thank you du much, I'll raise this to my doctor! 

[knitty kitty]

@Brent22,

You said in a previous post...

"...although the immunologist was able to help get my digestion under control, interesting that the gastro couldn't..."

Could you explain more about this?  What did the gastro do? What did the immunologist do?

You said you tested negative on Celiac tests. Which tests were run.

Thiamine deficiency can also affect antibody production.

[Brent22]

Yep, so gastro did colonoscopy and gastroscopy, both were fine. Didn't really do any blood work since my doc did the standard celiac blood test. 

Immunologist figured out I had undiagnosed tree and grass allergies. Had me do an elimination diet, turns out wheat/gluten is a huge issue for me. 

[knitty kitty]

Just checking.  

You do know that Celiac is not an allergy, right? 

You can have Celiac and a wheat/grass allergy both, but they are two different reactions.

[Brent22]

Yes for sure thanks for checking.  You can have gluten ataxia as well without being celiac. 

[knitty kitty]

Recent research has found that Ttg6 antibodies are present in ataxia.  Ttg6 antibodies are produced when gluten is present.  

Ttg2 is tested for Celiac Disease.  

Some people make both Ttg2 and Ttg6.  

Further reading.....

Neurological manifestation of coeliac disease with particular emphasis on gluten ataxia and immunological injury: a review article

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8035534/

And...

Serum antigliadin antibodies in cerebellar ataxias: a systematic review and meta-analysis

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6231948/

And...

Transglutaminase 6 antibodies in the diagnosis of gluten ataxia

https://pubmed.ncbi.nlm.nih.gov/23576621/

[Brent22]

Thank you so much for your help