Need help/insight - Vitamin deficiency symptoms appeared after going gluten free.

[knitty kitty]

@DeannaM,

Riboflavin helps with migraines.  I used to suffer from debilitating migraines, but I have supplemented with Riboflavin and I rarely get them anymore like I used to.  

I do get ophthalmic migraines that are triggered by computer screen usage.  My optic nerve shuts down and my vision blacks out.  Optic nerve damage that was due to unrecognized vitamin deficiencies in undiagnosed Celiac Disease.  

[DeannaM]

12 hours ago, knitty kitty said:

@DeannaM,

Riboflavin helps with migraines.  I used to suffer from debilitating migraines, but I have supplemented with Riboflavin and I rarely get them anymore like I used to.  

I do get ophthalmic migraines that are triggered by computer screen usage.  My optic nerve shuts down and my vision blacks out.  Optic nerve damage that was due to unrecognized vitamin deficiencies in undiagnosed Celiac Disease.  

Thanks that is good to know….darn migraines….trying to find something that will work ….giving it a shot…thanks💞

 

[knitty kitty]

8 minutes ago, DeannaM said:

Thanks that is good to know….darn migraines….trying to find something that will work ….giving it a shot…thanks💞

 

Keep us posted on how that works for you!

[trents]

Gonna try high dose of Riboflavin myself. There is clinical evidence it is effective for reducing migraine frequency: https://pubmed.ncbi.nlm.nih.gov/15257686/

[rrmac]

8 hours ago, knitty kitty said:

Keep us posted on how that works for you!

This is not my post I did reply to it but now every reply is coming to me and is there a way that I can stop that? 
I am assuming John111 is not getting any of this information and it’s his post

[trents]

37 minutes ago, rrmac said:

This is not my post I did reply to it but now every reply is coming to me and is there a way that I can stop that? 
I am assuming John111 is not getting any of this information and it’s his post

@rrmac, No, all these post email notifications are not being diverted from John111 to you. You are getting them because you have that option checked in your forum profile email settings.

Edited November 4, 2022 by trents

[Evan0529]

Hi John, 

Not sure if I am sending this correctly as this is my first time posting on this website.

I was diagnosed with celiacs about 5-6 months ago and have been gluten-free ever since. I was also really sick before going gluten-free and had a lot of symptoms that you mentioned. I am feeling a lot better GI wise and energy wise but I also have lingering symptoms such as a slight eye right eye droop, health anxiety, the weird shakiness feeling and brain fog. I was just wondering how you are doing now and if you can give me any tips?

[knitty kitty]

@Evan0529,

Welcome to the forum!

The eye droop, anxiety, shakiness and brain fog will be helped by taking Thiamine.  I had the same symptoms which improved when I took high dose Thiamine and a B Complex supplement.  

Celiac Disease damages the small intestine where vitamins are absorbed, so supplementing with vitamins and minerals helps our bodies get these micronutrients which allow our bodies to heal.  

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

Hope this helps!

[Evan0529]

2 minutes ago, knitty kitty said:

@Evan0529,

Welcome to the forum!

The eye droop, anxiety, shakiness and brain fog will be helped by taking Thiamine.  I had the same symptoms which improved when I took high dose Thiamine and a B Complex supplement.  

Celiac Disease damages the small intestine where vitamins are absorbed, so supplementing with vitamins and minerals helps our bodies get these micronutrients which allow our bodies to heal.  

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

Hope this helps!

Okay awesome, I will definently get on these supps. Another question, I have a feeling where I sometimes can’t get a good satisfying deep breath in and I assume it’s from anxiety because it doesn’t worsen from activity. Have you experienced this?

[knitty kitty]

3 minutes ago, Evan0529 said:

Okay awesome, I will definently get on these supps. Another question, I have a feeling where I sometimes can’t get a good satisfying deep breath in and I assume it’s from anxiety because it doesn’t worsen from activity. Have you experienced this?

Yes, I've experienced this.  It's called "sailors' asthma" which is another symptom of Thiamine insufficiency.  I've experienced this, too.

Thiamine is needed to carry oxygen in the blood.  Without enough thiamine, we get "air hunger" like you describe.  You just can't get a deep enough breath.  

Try Benfotiamine, a form of thiamine that gets into the cells easily.  It's safe and nontoxic.  

Read more here...

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

 

[Evan0529]

1 minute ago, knitty kitty said:

Yes, I've experienced this.  It's called "sailors' asthma" which is another symptom of Thiamine insufficiency.  I've experienced this, too.

Thiamine is needed to carry oxygen in the blood.  Without enough thiamine, we get "air hunger" like you describe.  You just can't get a deep enough breath.  

Try Benfotiamine, a form of thiamine that gets into the cells easily.  It's safe and nontoxic.  

Read more here...

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

 

Thank you so much, huge help! I’ve been going crazy because of it lately.

[knitty kitty]

1 minute ago, Evan0529 said:

Thank you so much, huge help! I’ve been going crazy because of it lately.

I know how you feel.  Thiamine will help with the anxiety and brain fog, too.  

You can also try Thiamax, another form of thiamine that is great for neurological symptoms like anxiety and brain fog.  

Be sure to take Magnesium Glycinate or magnesium taurate with Thiamine.  Magnesium helps thiamine to work properly.

Keep us posted on your progress!

[Evan0529]

5 minutes ago, knitty kitty said:

I know how you feel.  Thiamine will help with the anxiety and brain fog, too.  

You can also try Thiamax, another form of thiamine that is great for neurological symptoms like anxiety and brain fog.  

Be sure to take Magnesium Glycinate or magnesium taurate with Thiamine.  Magnesium helps thiamine to work properly.

Keep us posted on your progress!

Okay cool, how many mg of these thiamine supps should I take and how often?

[knitty kitty]

3 minutes ago, Evan0529 said:

Okay cool, how many mg of these thiamine supps should I take and how often?

Start with 100 mg of benfotiamine with each meal.  You can increase the amount. 

Everyone is different and has differing degrees of Thiamine insufficiency.  You have to find what works best for you.  

I take 100 mg Thiamax and 200mg benfotiamine with breakfast and lunch.  I found taking more after 5 pm can make me wide awake at bedtime.  Lol!  

There was a time when I was more severely deficient and took over 1000 mg over the course of a day.   Spread your doses out every three hours or so.  

Taking higher doses of thiamine allows the thiamine to get into cells by passive diffusion.  Thiamine Transporters turn off during deficiency, so high doses are needed to flood the system.  

You just have to be a guinea pig and find the best doses that works for you.  

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

[Evan0529]

On 11/15/2022 at 1:35 PM, knitty kitty said:

Start with 100 mg of benfotiamine with each meal.  You can increase the amount. 

Everyone is different and has differing degrees of Thiamine insufficiency.  You have to find what works best for you.  

I take 100 mg Thiamax and 200mg benfotiamine with breakfast and lunch.  I found taking more after 5 pm can make me wide awake at bedtime.  Lol!  

There was a time when I was more severely deficient and took over 1000 mg over the course of a day.   Spread your doses out every three hours or so.  

Taking higher doses of thiamine allows the thiamine to get into cells by passive diffusion.  Thiamine Transporters turn off during deficiency, so high doses are needed to flood the system.  

You just have to be a guinea pig and find the best doses that works for you.  

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

Hi, 

I have been taking benfotiamine and megnesium glycinate. My benfotiamine is 150 mg per pill with 50mg of thiamine. I have been taking about 2-3 a day and was wondering if I should be taking more than 150 mg of thiamine a day? I have noticed my ptosis is not physically noticeable anymore but still feel the heavy feeling my eyelid. 

[knitty kitty]

@Evan0529,

I've been taking 250 mg benfotiamine with 50 mg thiamine hydrochloride in each capsule at three meals.  I also take 100 mg Thiamax twice a day.  I've been taking this combination for years.  

https://www.objectivenutrients.com/products/thiamax/

Elliot Overton is a follower of Dr. Lonsdale and markets Thiamax.  I feel uncomfortable plugging products, but this one is worth it.   It's wonderful!  I had been taking Allithiamine which is great, too, but sometimes made me fidgety.  Thiamax is really smooth.

Here's Dr. Lonsdale and Marrs' paper... 

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

Try adding another benfotiamine two or three hours after your previous dose (in the morning perhaps).  See how that goes for a few days.  If you see improvements, you can take an additional dose three hours after previous dose if you like.  If you see improvements, you can keep on that amount.  If you get flu like symptoms (Thiamine paradox) back down a dose or two.  It's trial and error for which dose is right for you.  You'll figure out where your body feels comfortable. 

Keep us posted on your progress!

[Evan0529]

On 11/19/2022 at 6:38 PM, knitty kitty said:

@Evan0529,

I've been taking 250 mg benfotiamine with 50 mg thiamine hydrochloride in each capsule at three meals.  I also take 100 mg Thiamax twice a day.  I've been taking this combination for years.  

https://www.objectivenutrients.com/products/thiamax/

Elliot Overton is a follower of Dr. Lonsdale and markets Thiamax.  I feel uncomfortable plugging products, but this one is worth it.   It's wonderful!  I had been taking Allithiamine which is great, too, but sometimes made me fidgety.  Thiamax is really smooth.

Here's Dr. Lonsdale and Marrs' paper... 

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

Try adding another benfotiamine two or three hours after your previous dose (in the morning perhaps).  See how that goes for a few days.  If you see improvements, you can take an additional dose three hours after previous dose if you like.  If you see improvements, you can keep on that amount.  If you get flu like symptoms (Thiamine paradox) back down a dose or two.  It's trial and error for which dose is right for you.  You'll figure out where your body feels comfortable. 

Keep us posted on your progress!

Hi! 
This is kind of off topic but I figured I would ask you because you seem knowledgeable about this stuff.

Is it normal for me to feel internally shaky and also sometimes alittle physically shaky when glutened? I just have not heard of shakiness as much so I am curious.

[knitty kitty]

@Evan0529,

Yes, some of us on here have reported a vibrating, buzzing sensation.  

I've had the feeling so bad I had shaky hands, dropping things.  I get gluten ataxia really bad, too.

There's some people that produce tTg 6 antibodies in addition to tTg 2 antibodies (which is tested for in common Celiac tests) in response to gluten.  This tTg 6 affects the brain causing ataxia.  It's also been found in Parkinson's and Alzheimer's. 

Yeah, so it's scary.  

But...High dose Thiamine is effective in reducing symptoms of Parkinson's and Alzheimer's.  

Interesting, don't you think?

Edited November 23, 2022 by knitty kitty
Typo correction

[Evan0529]

10 minutes ago, knitty kitty said:

@Evan0529,

Yes, some of us on here have reported a vibrating, buzzing sensation.  

I've had the feeling so bad I had shaky hands, dropping things.  I get gluten ataxia really bad, too.

There's some people that produce tTg 6 antibodies in addition to tTg 2 antibodies (which is tested for in common Celiac tests) in response to gluten.  This tTg 6 affects the brain causing ataxia.  It's also been found in Parkinson's and Alzheimer's. 

Yeah, so it's scary.  

But...High dose Thiamine is effective in reducing symptoms of Parkinson's and Alzheimer's.  

Interesting, don't you think?

When I do see my GI are there any particular tests I should ask him for regarding these shaky/unsteadiness feelings? I remember telling him about my droopy eyelid which he said he has never seen before, this did improve a lot with thiamine supps though.

[knitty kitty]

I'm not familiar with nerve conduction tests.  Testing for Thiamine is going to reflect supplementation.  

I don't know what to tell you.  You could try bumping up the thiamine a little, see if that helps.  

[trents]

9 minutes ago, Evan0529 said:

When I do see my GI are there any particular tests I should ask him for regarding these shaky/unsteadiness feelings? I remember telling him about my droopy eyelid which he said he has never seen before, this did improve a lot with thiamine supps though.

You said in your post above that this only happens when you get glutened. My guess would be that gluten acts as some kind of neurological toxin for you. This is little comfort, I know, but at least, unlike "silent celiacs" you know when you've been glutened.

[Evan0529]

3 minutes ago, trents said:

You said in your post above that this only happens when you get glutened. My guess would be that gluten acts as some kind of neurological toxin for you. This is little comfort, I know, but at least, unlike "silent celiacs" you know when you've been glutened.

yes this is what I think atleast, I got diagnosed about 5 months ago so I am still not completely sure what feeling “normal” is like. It’s just very weird because towards when I was diagnosed I had bad GI symptoms but don’t recall any neurological ones. It’s kind of hard to describe but when I stick my hands out they don’t physically shake but let’s say if I lift my lip up the area around it feels unsteady and twitchy. I do not have it all the time either, a couple days after I started the thiamine supps I went to the gym per usual and felt no shakiness but unfortunately I  got glutened a couple days ago and it’s been pretty bad.

[trents]

One thing to be aware of is that once you withdraw gluten from your diet and have been gluten free for sometime, you typically lose whatever tolerance for it you used to have such that you are much more sensitive to it when you do get glutened. Are you also supplementing with a B-complex, D3 and magnesium? If not you should be. The B vitamins as a group and D3 are particularly important to neurological health.

[Evan0529]

2 hours ago, trents said:

One thing to be aware of is that once you withdraw gluten from your diet and have been gluten free for sometime, you typically lose whatever tolerance for it you used to have such that you are much more sensitive to it when you do get glutened. Are you also supplementing with a B-complex, D3 and magnesium? If not you should be. The B vitamins as a group and D3 are particularly important to neurological health.

I have really only started taking supplements this past week, I started a b-complex but it is pretty low dosage. I also started on thiamine and magnesium glycinate. Is there a good multivitamin you can recommended for me?

[trents]

Costco's Kirkland Signature and Nature Made brands are good choices for vitamins and supplements and most of them are gluten free. They will say so clearly on the bottle if they are. Don't forget the D3 (2000-5000IU).

Don't be shy about loading up on the B's. They are water soluble and you just pee out any excess.