Voice problems/ tremors

[ellen101]

Hello,

 

I have been dealing with frustrating voice issues for several years. The ENT said it is spasmodic dysphonia with tremor. I have trouble getting no full words out at times and when I do my voice is very shaky. 
Does anyone have trouble with their voice due to gluten? 

[Scott Adams]

That is an interesting issue, and I'm not sure if it would be tied to celiac disease or not. I did a search of our site for "dysphonia" and nobody else has reported this issue.

Can I assume that you've been diagnosed with celiac disease and have been on a gluten-free diet? If so, for how long? 

Also, do you eat out? I'm wondering if you might be getting hidden gluten in your diet, which could trigger various symptoms in those with celiac disease.

[ellen101]

I have not been diagnosed with celiacs. My NP suggested that tremors could be a side effect of gluten. 

[Scott Adams]

It is possible, and we have many research articles in this category on gluten ataxia and celiac disease:

https://www.celiac.com/celiac-disease/celiac-disease-amp-related-diseases-and-disorders/ataxia-nerve-disease-neuropathy-brain-damage-and-celiac-disease/ 

[knitty kitty]

@ellen101,

Welcome to the forum!

I have had problems with my voice, stuttering, voice cracking and not being able to get words out when I was deficient in Thiamine Vitamin B1.  

Thiamine deficiency can happen in Celiac Disease because of malabsorption, but thiamine deficiency can occur without Celiac Disease if a person eats a diet lacking in nutrients.

The World Health Organization recommends taking 500-1500 mg per day of Thiamine Hydrochloride for several days and see if there's improvement.  Blood tests are not an accurate measurement of Thiamine deficiency.  Thiamine is water soluble and nontoxic.  

I had improvement within hours.  

[ellen101]

Thank you I will try this!

2 hours ago, Scott Adams said:

It is possible, and we have many research articles in this category on gluten ataxia and celiac disease:

https://www.celiac.com/celiac-disease/celiac-disease-amp-related-diseases-and-disorders/ataxia-nerve-disease-neuropathy-brain-damage-and-celiac-disease/ 

Thanks for all the links!I did have the gene test for celiacs and since I do not have the gene my provider said I was negative for it. 

[knitty kitty]

That's great you've decided to try Thiamine!  Let us know your results!  

I also take Allithiamine and Benfotiamine, both are fat soluble forms of Thiamine that help immensely because they can get into cells easily.  You may prefer one of them to the thiamine hydrochloride.  The WHO uses thiamine hydrochloride because it is cheaper and readily available.

Thiamine in whichever form, works best with magnesium, so consider adding a magnesium citrate supplement.  And Thiamine likes to work with the other B vitamins, so a B Complex supplement is beneficial, too.  

[knitty kitty]

Here's a scientific study that you might find interesting....

High-dose thiamine and essential tremor

https://read.qxmd.com/read/29602891/high-dose-thiamine-and-essential-tremor

 

[Scott Adams]

1 hour ago, ellen101 said:

Thank you I will try this!

Thanks for all the links!I did have the gene test for celiacs and since I do not have the gene my provider said I was negative for it. 

Keep in mind that there is a condition that is more common called non-celiac gluten sensitivity, which around 10x more people have than celiac disease, and unfortunately there isn't a screening test for it yet. You may still want to try a gluten-free diet for a while to see if it helps.

[BlackShoesBlackSocks]

Just did a Google search on this and found this thread.

Hope it's okay to still post on the topic/thread? l've been a member here on and off, probable NCGS.

And have just had someone tell me "don't get so upset!" during a conversation due to this VERY shaky voice and cracking! It sounds like l am on the verge of tears, l promise l am not😂

I was gluten-free 100% for over a year! I started consuming it in the last few weeks and have this issue pop up, which I have never experienced.

At first I got a little freaked out because I know my grandma who had Parkinson's had the same thing, so it's actually good to see that there are other causes, not related to that!

Does anyone else experience this? l will see an ENT and have been in and out of their offices for years so should be easy enough to get back in to be checked for this reason.

[ellen101]

I am the original poster. So glad you posted but sorry you are experiencing this. You want to see someone who specializes in voice not all ENTs do. You want a laryngologist. They will most likely do a scope to look at your vocal cords while they have you produce certain sounds etc.  Unfortunately I am not so sure they will be able to answer your question as to its relation to gluten. Most would not be familiar with it. Do you have celiacs? I too have been concerned about Parkinson’s. 

[knitty kitty]

I've found some research articles that should be helpful....

Wernicke Encephalopathy Presenting with Dysphagia: A Case Report and Systematic Literature Review

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9788281/

And...

Severe dysphagia as the presenting symptom of Wernicke-Korsakoff syndrome in a non-alcoholic man

https://pubmed.ncbi.nlm.nih.gov/18379741/

And...

An open-label pilot study with high-dose thiamine in Parkinson's disease

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4828997/

And...

High-dose thiamine as initial treatment for Parkinson's disease

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3762356/

https://pubmed.ncbi.nlm.nih.gov/23986125/

And...

Progressive supranuclear palsy responding to intravenous thiamine: superimposed Wernicke’s encephalopathy?

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6109731/

 

Thiamine helps our brains and nervous system function.  Thiamine helps our digestive system function.  

 

[BlackShoesBlackSocks]

12 hours ago, ellen101 said:

I am the original poster. So glad you posted but sorry you are experiencing this. You want to see someone who specializes in voice not all ENTs do. You want a laryngologist. They will most likely do a scope to look at your vocal cords while they have you produce certain sounds etc.  Unfortunately I am not so sure they will be able to answer your question as to its relation to gluten. Most would not be familiar with it. Do you have celiacs? I too have been concerned about Parkinson’s. 

I did a home test maybe 5 years ago and was negative. After I got one of the variants on 23andMe, then decided to go gluten free anyways since I was a chronic migraine  patient. 

I think I'm just not great at managing some parts of the diet to ensure I am getting all the nutrients and gluten-free carb options l really need, but the alternative is going back to a regular diet, then I inevitably start to feel exhausted in an entirely different way. 

My grandma would have had an early onset type that started when she was pretty young. So, I wonder if maybe she could have had an undiagnosed Celiac case because I think this is definitely where I got the gene from. That side of the family has different  pain and autoimmune disorders and my other side really doesn't, at all. 

I have read that at least now being gluten free could be preventative for people who might have underlying Celiac or non-celiac gluten sensitivity and develop Parkinson's! Hope you are doing well and haven't had to face any serious health concerns regarding that!

 

 

[Scott Adams]

Welcome back, and perhaps go back to that gluten-free diet again to see if it clears up?

[knitty kitty]

Dietary intake of thiamine and riboflavin in relation to severe headache or migraine: A cross-sectional survey

https://pubmed.ncbi.nlm.nih.gov/36047917/

"Conclusions: We found that high intake of thiamine was significantly associated with lower odds of migraine, especially in females."

Celiac Disease damages the intestinal lining so that nutrients like vitamins and minerals are not absorbed.  

Following the Autoimmune Protocol Diet encourages healing and reduces inflammation.

Correction of nutritional deficiencies is part of proper follow up care for Celiac people.

[Dandk]

I am so glad to see this post. I have the voice issue you are describing. I also have essential tremors. The combination of these make me seem like a nervous wreck, which is true when I begin to get self conscious in public because of it.  About 20 yrs ago I was prescribed propanolol. It helped the tremors somewhat, but it also reduced the resulting nervousness, significantly. It was a lifesaver for me then.

However, about three months ago I came across information on thiamine deficiency and saw similarities of the symptoms to some of my own experiences. I purchased benfotiamine, and have been taking it about three times a week with magnesium. I hesitate to take it every day because I don't know enough about what other nutrients might take similar pathways in the body and I want to make sure I avoid lowering my absorption of something else due to the high dose of thiamine. I'm also afraid to take it when I take B12 (for the same reason) so I alternate days between those. Any info on this would be much appreciated.

So far I am experiencing changes, and think some level of thiamine deficiency has been plaguing me most of my life. As far as the voice goes, lately my voice isn't shaky most days and sounds fuller. 

[knitty kitty]

Hello, @Dandk!  

I'm so happy that you are trying Thiamine and seeing improvement!  

Thiamine needs the other B vitamins to make a variety of enzymes, so taking a B Complex along with B12 and Benfotiamine every day is a good practice.  I take my B's at the beginning of a meal, and magnesium after a meal.  I take a B Complex in the morning with Benfotiamine and magnesium afterwards, and then more Benfotiamine with each meal or snack.   Taking smaller doses throughout the morning and afternoon is an option.  Taken in the evening, thiamine might cause sleeplessness.  

Keep us posted on your progress!  I'm happy to answer any questions you may have.

[cristiana]

This is brilliant to read.   @Dandk , what you say reminded me that around the time of my diagnosis I remember thinking my voice didn't sound quite right to me. 

I'd completely forgotten.  Thinking back, around that time I started some pretty major B complex supplementation and that must have helped because it went away.  

I wish you continued improvement.

[ellen101]

5 hours ago, knitty kitty said:

Hello, @Dandk!  

I'm so happy that you are trying Thiamine and seeing improvement!  

Thiamine needs the other B vitamins to make a variety of enzymes, so taking a B Complex along with B12 and Benfotiamine every day is a good practice.  I take my B's at the beginning of a meal, and magnesium after a meal.  I take a B Complex in the morning with Benfotiamine and magnesium afterwards, and then more Benfotiamine with each meal or snack.   Taking smaller doses throughout the morning and afternoon is an option.  Taken in the evening, thiamine might cause sleeplessness.  

Keep us posted on your progress!  I'm happy to answer any questions you may have.

Can you share which supplements you use? I am the original poster and feel like I could open my own store with all the failed supplements I have tried. 

[knitty kitty]

I use Life Extension brand of Benfotiamine, 100 mg or 250 mg.  They also make a good B Complex.

I use Thiamine Hydrochloride by NOW Foods.  This is the common form of thiamine.  This form doesn't have the same results as quickly as the other forms of Thiamine, but it helps nonetheless.

Ecological Formulas' Allithiamine, a form of thiamine called Tetrahydrofurfuryl disulfide (TTFD).  

Thiamax, also TTFD, is promoted by Elliott Overton.  Check out his informative YouTube channel and website, EONutrition.  

Dr. Derrick Lonsdale has studied the health benefits of high dose Thiamine.  Dr. Lonsdale and coauthor Dr. Chandler Marrs have written a book Thiamine Deficiency Disease, Dysautonomia, and High Calorie Malnutrition.  They can be found on Dr. Marrs' website site hormonesmatter.com.  

These sites explain how to taper up slowly.  If you start feeling worse, "the thiamine paradox", back down on dosage.  As your body adjusts, you might feel like you're regressing, but carry on.  It is your body starting to function properly and "blowing out the cobwebs".  

When buying supplements, avoid the ones that use rice flour as a filler.  

Keep us posted on your progress!  

P. S.  I sounded like a croaking toad.  I developed a terrible stutter first, and then my voice got croaky.  I had a period where I couldn't talk at all (situational mutism), especially in situations where the fight or flight response was triggered (in confrontations).  It was horrible.  

Edited May 12, 2023 by knitty kitty
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