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

John117

By John117
in Related Issues & Disorders

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knitty kitty Grand Master
knitty kitty
Posted

@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.  

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Rogol72
Rogol72

I agree. The knowledge of the Admins and Mods here is incredible. Thiamine is a big one as it's hard to for Coeliacs to get it in sufficient amounts from food. I was taking 200mg of Magnesium Glycinat

John117
John117

Im honestly really happy i mentioned the eye droop thing. Im definitely gonna start on some higher doses of b1 and magnesium as well and maybe even some vitamin D. I ended up reading a lot a

Posterboy
Posterboy

DeannaM, I don't have much time tonight.....nor this weekend (I am attending an online theoconference) but you deserve a good answer to your question. (My following messages are not currentl

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DeannaM Rookie
DeannaM
Posted
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 Grand Master
knitty kitty
Posted
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 Grand Master
trents
Posted

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 Apprentice
rrmac
Posted
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 Grand Master
trents
Posted
(edited)
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.

Notifications.webp

Edited by trents
  • 2 weeks later...
Evan0529 Rookie
Evan0529
Posted

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?

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knitty kitty Grand Master
knitty kitty
Posted

@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 Rookie
Evan0529
Posted
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 Grand Master
knitty kitty
Posted
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 Rookie
Evan0529
Posted
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 Grand Master
knitty kitty
Posted
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 Rookie
Evan0529
Posted
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 Grand Master
knitty kitty
Posted
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 Rookie
Evan0529
Posted
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 Grand Master
knitty kitty
Posted

@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 Rookie
Evan0529
Posted
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 Grand Master
knitty kitty
Posted
(edited)

@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 by knitty kitty
Typo correction
Evan0529 Rookie
Evan0529
Posted
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 Grand Master
knitty kitty
Posted

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 Grand Master
trents
Posted
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 Rookie
Evan0529
Posted
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 Grand Master
trents
Posted

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 Rookie
Evan0529
Posted
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 Grand Master
trents
Posted

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.

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      results from 13 day gluten challenge - does this mean I can't have celiac?

      By catnapt · Posted

      highly unlikely  NOTHING and I mean NOTHING else has ever caused me these kinds of symptoms I have no problem with dates, they are a large part of my diet In fact, I eat a very high fiber, very high vegetable and bean diet and have for many years now. It's considered a whole foods plant based or plant forward diet (I do now eat some lean ground turkey but not much) I was off dairy for years but recently had to add back plain yogurt to meet calcium needs that I am not allowed to get from supplements (I have not had any problem with the yogurt)   I eat almost no processed foods. I don't eat out. almost everything I eat, I cook myself I am going to keep a food diary but to be honest, I already know that it's wheat products and also barley that are the problem, which is why I gradually stopped eating and buying them. When I was eating them, like back in early 2024, when I was in the middle of moving and ate out (always had bread or toast or rolls or a sub or pizza) I felt terrible but at that time was so busy and exhausted that I never stopped to think it was the food. Once I was in my new place, I continued to have bread from time to time and had such horrible joint pain that I was preparing for 2 total knee replacements as well as one hip! The surgery could not go forward as I was (and still am) actively losing calcium from my bones. That problem has yet to be properly diagnosed and treated   anyway over time I realized that I felt better when I stopped eating bread. Back at least 3 yrs ago I noticed that regular pasta made me sick so I switched to brown rice pasta and even though it costs a lot more, I really like it.   so gradually I just stopped buying and eating foods with gluten. I stopped getting raisin bran when I was constipated because it made me bloated and it didn't help the constipation any more (used to be a sure bet that it would in the past)   I made cookies and brownies using beans and rolled oats and dates and tahini and I LOVE them and have zero issues eating those I eat 1 or more cans of beans per day easily can eat a pound of broccoli - no problem! Brussels sprouts the same thing.   so yeh it's bread and related foods that are clearly the problem  there is zero doubt in my mind    
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