Question

[Azur]

Hello, I made this post about 6 months ago

I've posted this about 6months ago, and I'm on gluten free diet for about 6+ months, so I made this post and I can only tell you these all symptoms gone away by itself after about 2months after posting topic, and I was back to normal, everything was just fine like it was before gluten free diet, I was normal everything was just fine, but yesterday at evening about 9pm I had again this panic attack like 6 months before when I posted topic, I dont really know reason, is it possible that I ate some of gluten? about 9pm I had to use bathroom because my stomach was feeling strange, after using bathroom right away I started feeling this like panic attack, It was feeling like something is walking in my stomach,dizziness, numbing in face, felt literally like i want to pass out, my hearth started beating faster(probably because I was scared) I was sweating a lot and I wanted to vomit but didnt happen, so I washed my face, took glass of coca cola and my stomach started working and it kind of fixed me, so I went to sleep, for now I'm feeling better than last night but I'm still feeling unpleasantness in stomach and dizziness. Also I'm not feeling like I could eat anything, I'm feeling like if I eat something I would vomit and get that panic attack again. And I'm eating for now just small meals.

So my question is, could these symptoms be reaction to gluten? or my body is still healing? Maybe I somehow ate gluten by accident because I ate 1 chocolate and it wasnt certified as gluten free but it also I didnt say it has gluten, or these symptoms have nothing to do with gluten, I would like to check my doctor but I was unable to see him since I started going gluten free and we dont have any contact because of covid so only place that I could ask these questions is here, thanks.

[DJFL77I]

probably gluten...

you started gluten free diet because your mom and sister have celiac and because of that you went and got tested and found out you have it too.. right??

But you were not experiencing any symptoms before than right?

When you say "dizzy" -  do you mean "off balance" feeling when walking?      or is it feeling like you'll "faint" or "room spinning" ?

i also feel dizzy if you remember when we talked before..

 

 

 

 

[Azur]

24 minutes ago, DJFL77I said:

probably gluten...

you started gluten free diet because your mom and sister have celiac and because of that you went and got tested and found out you have it too.. right??

But you were not experiencing any symptoms before than right?

When you say "dizzy" -  do you mean "off balance" feeling when walking?      or is it feeling like you'll "faint" or "room spinning" ?

i also feel dizzy if you remember when we talked before..

 

 

 

 

Yeah I think its because I ate gluten by accident, I'm feeling now much better than that day, I went for run, drank a lot of green tea and I'm feeling better, I just couldn't believe that you can get all of these symptoms because you have celiac disease 
yes
No I didn't
I think off balance and room spinning at same time
yes I remember

[DJFL77I]

Are you eating out at all at places?

[Azur]

No

 

[DJFL77I]

alright..    did you know djokovic has gluten problem too

 

https://www.espn.com/tennis/french15/story/_/id/12963058/french-open-going-gluten-free-novak-djokovic#:~:text=Djokovic says he learned he,might be allergic to gluten.

[knitty kitty]

Azure, 

As an athlete, you have a higher metabolic need for thiamine, riboflavin, niacin, and pyridoxine.  These are all members of the group of B vitamins.  They are all water soluble, can not be stored in the body for long and need to be replenished every day.  

You use up more thiamine, pyridoxine, and riboflavin when you exercise and when you are ill. Without enough thiamine, symptoms like you described occur.  I had these same symptoms.  I was low in thiamine because I have a higher metabolic need because I have type two diabetes and had undiagnosed Celiac Disease.  Doctors often miss this because blood tests for vitamins aren't accurate.  Vitamins are used inside the cells and the body will deplete the vitamin stores in cells in order to transport the vitamins via the blood to the brain.  

Discuss with your doctor supplementing several months while you recover and your absorption improves.  Celiac Disease impairs vitamin and mineral absorption.  Testing for deficiencies is part of proper follow up care for Celiacs. Ask for the  Erythrocyte Transketolase test, used for detecting thiamine deficiency.  

https://academic.oup.com/ajcn/article/72/2/598S/4729690

https://link.springer.com/article/10.1007/s00134-019-05678-y

Hope this helps!

[Azur]

5 hours ago, DJFL77I said:

alright..    did you know djokovic has gluten problem too

 

https://www.espn.com/tennis/french15/story/_/id/12963058/french-open-going-gluten-free-novak-djokovic#:~:text=Djokovic says he learned he,might be allergic to gluten.

Yes I know, Djokovic lives in the country next to mine, and he often comes to place near my city where is recently discovered pyramid, called pyramid of sun, and you as a tourist can enter in that pyramid, and it's proven that 1 time when you go inside of that pyramid you will left much more positive and your body will heal, why am I telling you all of this is because Djokovic very very often goes to that place and he's opssesed with it, I still haven't been on that place but I'm looking forward and if you ever cross Bosnia and Herzegovina you should check that place too, Pyramid of Sun in Visoko, I mean if one of worlds best athlete also who has celiac disease says it is really helps him we should visit too.

 

2 hours ago, knitty kitty said:

Azure, 

As an athlete, you have a higher metabolic need for thiamine, riboflavin, niacin, and pyridoxine.  These are all members of the group of B vitamins.  They are all water soluble, can not be stored in the body for long and need to be replenished every day.  

You use up more thiamine, pyridoxine, and riboflavin when you exercise and when you are ill. Without enough thiamine, symptoms like you described occur.  I had these same symptoms.  I was low in thiamine because I have a higher metabolic need because I have type two diabetes and had undiagnosed Celiac Disease.  Doctors often miss this because blood tests for vitamins aren't accurate.  Vitamins are used inside the cells and the body will deplete the vitamin stores in cells in order to transport the vitamins via the blood to the brain.  

Discuss with your doctor supplementing several months while you recover and your absorption improves.  Celiac Disease impairs vitamin and mineral absorption.  Testing for deficiencies is part of proper follow up care for Celiacs. Ask for the  Erythrocyte Transketolase test, used for detecting thiamine deficiency.  

https://academic.oup.com/ajcn/article/72/2/598S/4729690

https://link.springer.com/article/10.1007/s00134-019-05678-y

Hope this helps!

When my first symptoms came, I started using supplements of B,D and some other vitamins, and I rly didn't feel any better of that, but recently I've started using Omega 3 supplement and before I couldnt absorb it but now I can. What really helped me is sun, I used to go a lot on sun and I started feeling better.

Thank you for these informations they are gold worth! My sister also has type two diabetes and Celiac Disease, I haven't been to my doctor yet because of covid, to be honest I was scare to go to the doctor and tell him about these symptoms because when I tell someone about these symtpoms they think I'm on drugs or something but I'm far from that, what is actually happening I'm training for about 3 hours a day, and this what you just wrote proves everything, I still havent been tested for vitamin deficit but I'll do it soon I'll  also do Erythrocyte Transketolase test, thank you a lot, this is answer I was searching for!

[DJFL77I]

How old is your sister 

[Azur]

16 minutes ago, DJFL77I said:

How old is your sister 

23

[GFinDC]

Hi Azur,

Celiac can cause a lot of different symptoms.  In some people the antibodies attack nerve cells in the brain.  Or they can attack the skin or joints or organs.  Another problem celiac can cause is mal-absorption of nutrients.  So it's good to have a doctor check your vitamin and mineral levels.  Often people are unable to digest dairy for a while also.

You can try peppermint to relieve gas bloating.  It's helpful to avoid sugar and carbs for several months also.  Try to eat a simple diet of meats, veggies, eggs, nuts and fruit.  Don't eat restaurant food or packaged/processed foods.  A simple diet makes it easier to avoid gluten.

Edited August 22, 2020 by GFinDC

[knitty kitty]

Azure,

I did the same thing.  I took regular B-Complex vitamins and didn't feel much different.  I kept researching and found that when you have a deficiency of thiamine, the thiamine transporters that help thiamine get into the cells turn off and don't function.  In order to get the Thiamine transporters to turn back on, you have to flood the body with thiamine so thiamine can "force" its way into the cells. 

So I started taking high doses of thiamine:  300 mg or 3 grams of thiamine a day.  I took 100 mg tablets of thiamine (thiamine HCl, thiamine hydrochloride) with each meal.  And I got immediate improvement!  I did more research and found Dr. Lonsdale and Dr. Marrs' book "Thiamine Deficiency Disease, Dysautonomia, and High Calorie Malnutrition" and their website www.hormonesmatter.com, which  has much information there as in the book.  They recommend taking the form of thiamine called Allithiamine.  (It's made from garlic from the Allum family.)  It's a form that crosses the blood-brain barrier because it is fat soluble.  I got even more improvement. 

Thiamine needs riboflavin (B2) and niacin (B3) and pyridoxine (B6) and omega 3 fats and vitamin C and magnesium to work best.  The difference is amazing!  I feel so much better now, more energetic, no more brain fog.  My diabetes is better controlled and I don't take medication for it anymore, just low carbohydrate AutoImmune Paleo diet.

Here's an article on high dose thiamine.  It's used in Alzheimer's disease, too.  These used injections of thiamine, but the over the counter thiamine supplements and allithiamine available without prescription works just as well.  It may take several months to see the full benefits.  The more deficient you are the quicker you see benefits.  I'm still seeing improvement several months in.  

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5354137/

Discuss this with your doctor.  My doctors totally dismissed the possibility of vitamin deficiencies.  One said he would not check for vitamin deficiencies because he could not make any money from vitamins.  He promptly wrote me five prescriptions to relieve (cover up) the symptoms.  I researched and found my own answers.  I'm a microbiologist, not a doctor, so discuss supplementing with your doctor.  Doctors need to learn about thiamine supplementation for more health problems.  Thiamine and Vitamin C is being given to Covd patients on respirators to help them survive.  Thiamine can help with so much more!

I have wanted to visit your part of the world and see the pyramid for many years!  Just when I start planning a trip Covid hit.  Send us a postcard! 😸

Keep us posted on your progress and your sister's, too.  

Best wishes for your journey to health!

Knitty Kitty

P.S.  forgot this article

https://lpi.oregonstate.edu/mic/vitamins/thiamin

 

Edited August 22, 2020 by knitty kitty
Typo

[DJFL77I]

still haven't had all my vitamins and mineral levels checked...  only b12 and iron.

i requested it be done by my gastro dr but they said doesnt do it and said go to a primary dr to do it..

what the hell???  

[DJFL77I]

have an appt monday to get that checked..     Corona Virus has ruined the planet.. cant even get appt's with freakin dr's anymore

[Azur]

On 8/22/2020 at 3:33 AM, GFinDC said:

Hi Azur,

Celiac can cause a lot of different symptoms.  In some people the antibodies attack nerve cells in the brain.  Or they can attack the skin or joints or organs.  Another problem celiac can cause is mal-absorption of nutrients.  So it's good to have a doctor check your vitamin and mineral levels.  Often people are unable to digest dairy for a while also.

You can try peppermint to relieve gas bloating.  It's helpful to avoid sugar and carbs for several months also.  Try to eat a simple diet of meats, veggies, eggs, nuts and fruit.  Don't eat restaurant food or packaged/processed foods.  A simple diet makes it easier to avoid gluten.

Sure I'll use peppermint, thanks for that, but why avoiding sugar? I'm literally eating everything that you just wrote but also I overeat can overeating be a problem in healing process?

 

On 8/22/2020 at 7:04 AM, knitty kitty said:

Azure,

I did the same thing.  I took regular B-Complex vitamins and didn't feel much different.  I kept researching and found that when you have a deficiency of thiamine, the thiamine transporters that help thiamine get into the cells turn off and don't function.  In order to get the Thiamine transporters to turn back on, you have to flood the body with thiamine so thiamine can "force" its way into the cells. 

So I started taking high doses of thiamine:  300 mg or 3 grams of thiamine a day.  I took 100 mg tablets of thiamine (thiamine HCl, thiamine hydrochloride) with each meal.  And I got immediate improvement!  I did more research and found Dr. Lonsdale and Dr. Marrs' book "Thiamine Deficiency Disease, Dysautonomia, and High Calorie Malnutrition" and their website www.hormonesmatter.com, which  has much information there as in the book.  They recommend taking the form of thiamine called Allithiamine.  (It's made from garlic from the Allum family.)  It's a form that crosses the blood-brain barrier because it is fat soluble.  I got even more improvement. 

Thiamine needs riboflavin (B2) and niacin (B3) and pyridoxine (B6) and omega 3 fats and vitamin C and magnesium to work best.  The difference is amazing!  I feel so much better now, more energetic, no more brain fog.  My diabetes is better controlled and I don't take medication for it anymore, just low carbohydrate AutoImmune Paleo diet.

Here's an article on high dose thiamine.  It's used in Alzheimer's disease, too.  These used injections of thiamine, but the over the counter thiamine supplements and allithiamine available without prescription works just as well.  It may take several months to see the full benefits.  The more deficient you are the quicker you see benefits.  I'm still seeing improvement several months in.  

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5354137/

Discuss this with your doctor.  My doctors totally dismissed the possibility of vitamin deficiencies.  One said he would not check for vitamin deficiencies because he could not make any money from vitamins.  He promptly wrote me five prescriptions to relieve (cover up) the symptoms.  I researched and found my own answers.  I'm a microbiologist, not a doctor, so discuss supplementing with your doctor.  Doctors need to learn about thiamine supplementation for more health problems.  Thiamine and Vitamin C is being given to Covd patients on respirators to help them survive.  Thiamine can help with so much more!

I have wanted to visit your part of the world and see the pyramid for many years!  Just when I start planning a trip Covid hit.  Send us a postcard! 😸

Keep us posted on your progress and your sister's, too.  

Best wishes for your journey to health!

Knitty Kitty

P.S.  forgot this article

https://lpi.oregonstate.edu/mic/vitamins/thiamin

Hey Knitty!

Sorry for replying after few days, I saw your replay while I was travelling but couldn't respond because didn't know pass of account. But I did some reasaourge about this that you wrote.
So I went through all vitamin B deficiency sites and checked out your links(thanks for that) and found out that my called "panic attack" is in fact deficiency symptoms of B12 Vitamin and Thiamine, but also I've found that long term deficiency can lead to permanent damage on neurological system ,brain cells, I'm on gluten free for about 6+months do you think I was long enough exposed to deficiency to get some permanent damage, I'll try to get appointment with my doctor which I had 1 month after going gluten free but because of covid I was unable to go, but after reading all of this stuff about vitamin deficiency I got really concern and I'll get my appointment at all cost. Thank you

[GFinDC]

4 hours ago, Azur said:

Sure I'll use peppermint, thanks for that, but why avoiding sugar? I'm literally eating everything that you just wrote but also I overeat can overeating be a problem in healing process?

Hi Azur,

Many newly gluten-free celiacs have trouble with bloating in the bowels.  This is can be caused by sugar or lactose intolerance or both.  Damaged guts don't work as well to digest those foods and the bacteria that inhabit the gut and help with digestion are sometimes not present in adequate quantities,  Instead non-helpful bacteria can increase in numbers and cause symptoms.  These non-helpful bacteria often thrive on sugars our guts are not able to digest.

Overeating shouldn't be a problem by itself if your digestion is healthy.  People with celiac sometimes report feeling very hungry for a while after going gluten-free.  Our bodies needs lots of protein to heal so it can be good to load up on protein meals and not as much carbohydrates.

[DJFL77I]

just buy a multi vitamin and some B12 suppliment if you want to take it before going to the Dr

[DJFL77I]

https://www.amazon.com/NOW-Vitamin-B-1-Thiamine-Tablets/dp/B0009P3DRS/ref=mp_s_a_1_3?dchild=1&keywords=now+thiamine+100mg&qid=1594130844&sprefix=now+thiamine&sr=8-3

[ravenwoodglass]

1 hour ago, DJFL77I said:

just buy a multi vitamin and some B12 suppliment if you want to take it before going to the Dr

Just be sure to ask the doctor how long you need to stop taking them for before the doctor tests your levels. If you have been working with this doctor you may want to call the office and ask if you can just get a lab request before your appointment so the doctor has the results in hand when you get to the office or the virtual appointment.

[knitty kitty]

On 8/27/2020 at 3:00 PM, Azur said:

Sure I'll use peppermint, thanks for that, but why avoiding sugar? I'm literally eating everything that you just wrote but also I overeat can overeating be a problem in healing process?

 

Hey Knitty!

Sorry for replying after few days, I saw your replay while I was travelling but couldn't respond because didn't know pass of account. But I did some reasaourge about this that you wrote.
So I went through all vitamin B deficiency sites and checked out your links(thanks for that) and found out that my called "panic attack" is in fact deficiency symptoms of B12 Vitamin and Thiamine, but also I've found that long term deficiency can lead to permanent damage on neurological system ,brain cells, I'm on gluten free for about 6+months do you think I was long enough exposed to deficiency to get some permanent damage, I'll try to get appointment with my doctor which I had 1 month after going gluten free but because of covid I was unable to go, but after reading all of this stuff about vitamin deficiency I got really concern and I'll get my appointment at all cost. Thank you

Azur,

Glad to hear from you.

No, I doubt you've sustained any permanent damage.  You've been eating, so you've probably gotten some thiamine in your diet.  And the human body has a great ability to recover and heal.

There's a progression of symptoms with thiamine deficiency, from subtle symptoms to the more severe Wernicke-Korsakoff syndrome, but I doubt you've gotten this far.  

I get irritated with doctors and lay people who think that thiamine deficiency only occurs in alcoholism.  In alcoholism, there's a malabsorption problem that can lead to thiamine deficiency and Wernicke-Korsakoff syndrome.  A lot of information about thiamine deficiency comes from studying alcoholics with Wernicke's-Korsakoff syndrome.

But in Celiac Disease, there's also a malabsorption problem that can lead to thiamine deficiency and Wernicke-Korsakoff syndrome, in addition to other vitamin deficiencies as well.  

Posterboy and I have posted some research articles about thiamine and personal experiences with thiamine deficiency here in this thread.....

I'm sure you'll be fine!

Keep us posted!

[Azur]

On 8/28/2020 at 2:33 PM, ravenwoodglass said:

Just be sure to ask the doctor how long you need to stop taking them for before the doctor tests your levels. If you have been working with this doctor you may want to call the office and ask if you can just get a lab request before your appointment so the doctor has the results in hand when you get to the office or the virtual appointment.

Thank you, I'll do just as you sad

 

23 hours ago, knitty kitty said:

Azur,

Glad to hear from you.

No, I doubt you've sustained any permanent damage.  You've been eating, so you've probably gotten some thiamine in your diet.  And the human body has a great ability to recover and heal.

There's a progression of symptoms with thiamine deficiency, from subtle symptoms to the more severe Wernicke-Korsakoff syndrome, but I doubt you've gotten this far.  

I get irritated with doctors and lay people who think that thiamine deficiency only occurs in alcoholism.  In alcoholism, there's a malabsorption problem that can lead to thiamine deficiency and Wernicke-Korsakoff syndrome.  A lot of information about thiamine deficiency comes from studying alcoholics with Wernicke's-Korsakoff syndrome.

But in Celiac Disease, there's also a malabsorption problem that can lead to thiamine deficiency and Wernicke-Korsakoff syndrome, in addition to other vitamin deficiencies as well.  

Posterboy and I have posted some research articles about thiamine and personal experiences with thiamine deficiency here in this thread.....

I'm sure you'll be fine!

Keep us posted!

Yes, I was taking some tiamine from food, but I was training hard too, so my system was triggered, but when I stopped to exercise, I was feeling better because probably my system couldn't handle healing of body at same time as healing gut, and today I'm feeling good, I know I need supplements to boost system and I'll start using something like B- complex too boost my system.
Thank you for all these information you helped a lot like all the others involved!
I'll read all of your links putted below so I could get as much as I can information, thank you one more time!