Vagus Nerve Attack

[MariaBanelli]

I was only recently diagnosed with Celiac but had a whole bunch of symptoms leading up to what eventually became very frightening.

I had, for some time been having all the symptoms of gluten intolerance, I just hadn't related it and neither had my doctor. I was getting alarmed at how much weight I was losing and how many hours in a day I found myself sitting on a loo. I went down to 82lbs before the first big attack came.

One day I was sat on the loo as usual but suddenly felt very sick and as though I was going to faint. My stomach felt like it had a rolling full term baby in it. I ended up calling my husband who managed to steady me and put a cold cloth on my head and then as soon as it came, it went.

I got up but within seconds I found I couldn't breath. It was as though my lungs had paralyzed. I must of been able to breath a tiny bit because the ambulance took a good five minutes to get to me but I was in total panic, I thought I was going to suffocate. They got me straight onto oxigen and told me I had hyperventilated but as soon as my breathing settled I started to go into shock. I started to feel extremely cold, like I had been thrown in ice water and i was shaking uncontrollably. My lips went blue and my arms and legs felt icy cold (all the blood was obviously rushing to major organs.

Once I was stabilized a doctor came in and suggested I had COPD or a bad asthma attack and so I was sent off for tests which showed no asthma and no signs of COPD.

A week later it happened again, exactly the same way and again once the busy emergency room had stabilized me and checked my heart and lungs, they sent me home. By now I was getting really frightened and so was my husband. My doctor scanned my liver, my womb, ovaries and stomach and just kept shrugging his shoulders.

10 days later it happened again but this time a consultant came in to see me and explained I was having something called Vagus nerve attacks and he suspected it was the small intestine that was the culprit. He took some blood tests and 'BINGO' it showed up Celiac disease.

I have now been on a totally gluten free diet for 3 months and touch wood have had no sign of another attack, though the thought of having another in the future terrifies me.

I have put on 17lbs in weight and am no more a regular at the loo than anyone else!

The only thing that really upsets me is, during this period of un-diagnosis my hair really thinned out. One of the things they discovered is that I was iron anemic but that has now been remedied. I hope my crowning glory does come back but even if it doesn't, I'm so glad that I am no longer poisoning my body and that I am getting better. I suddenly feel so full of energy and that old brain fog I had, had for so long has vanished.

To date, I haven't heard of anyone else having this sort of attack but would be interested to hear if anyone has had something similar.

[bartfull]

Maria, I just sent you a PM with some info that might help you. Go to the top right of the page and you'll see where to click to get my message.

[MariaBanelli]

Maria, I just sent you a PM with some info that might help you. Go to the top right of the page and you'll see where to click to get my message.

Bartfull, thank you so much for this. As soon as I am able to reply to you properly I will.

Maria

[mushroom]

Maria, I too have suffered from problems with my vagus nerve. Vaso-vagal syncope from the pressure of the bloating - I always passed out briefly, knew it was coming on with ringing in the ears, dizziness, sweating, and would come to freezing colld and weak. It has now progressed to atrial fibrillation where my heart goes into abnormal rhythms when I eat anything containing specific lectins (the ones in foods in my list below).

I have been the loo route too - not knowing whether to sit on it or kneel in front of it I even fainted on the loo once Fortunately I don't go that road any more

[AMom2010]

I had a Vegas nerve attack while on the toilet just a few weeks ago, even fainted! Mushroom, is there something you have done to keep it from happening again?

[mushroom]

I had a Vegas nerve attack while on the toilet just a few weeks ago, even fainted! Mushroom, is there something you have done to keep it from happening again?

After a couple of years and a lot of research I have tracked my problem down to being caused by lectins in specific foods, in my case the lectins in corn, nightshades, soy, citrus, legumes, and gluten of course. So I have eliminated them. However, before I found the last of them my problem converted to atrial lfibrillation, and this is sometimes now set off by things other than lectins although lectins are the primary instigator if any creep into my food . I also now have problems with high altitude which can set off the a-fib. (I have moderate COPD so it could still be associated with a lack of oxygen, because I believe the bloating pressure was preventing me from oxygenating my blood properly. - I would have difficulty breathing from the bloating pressure.)

[Celtic Queen]

I had fainting attacks for years (before being diagnosed with Celiac) and then they stopped for quite a while. I was gluten free for a while then had restart gluten for some tests. When I started going back off the gluten, I had another attack and almost passed out twice. At the same time I had, not to be too graphic, an attack of explosive bloody diarrehea. It was really scary. I'm sure it's related to something I ate. The ER doc tried to say it was from food poisoning from some fish I ate for lunch, but I really believe it was some sort of reaction from going back off the gluten. I may have been accidentally glutened or my body was just freaking out about going gluten free. Either way, it was scary.

When I had the syncope problem before, then ran all sorts of tests - EKG, EEG, Holter Monitor, CAT scan, tilt table test, etc. They never could figure out what was causing my episodes. I was put on a custom compounded medicine that seemed to help, because my attacks stopped. At the time I thought they were probably stress related. Now, seeing the link between Celiac and syncope, I think they were a combination of stress-related and gluten related. When this last attack happened, I was definitely under some major stress.

One thing that my cardiologist told me that made me feel a little less stressed was that, when you faint, your body realizes what is happening and sends adrenaline through your system. As a result, you're not out very long. The adrenaline kind of "jump starts" your body. But the adrenaline is what speeds up your heart and gives you cold sweats.

For me, I can usually feel when I'm about to faint now. I get this weird deja vu like sense and my head feels fuzzy. As a result, I've learned to stop whatever I"m doing and immediately sit down so I don't get hurt. I learned that lesson the hard way after passing out in the middle of a drug store once and while driving my car another time. Now that I know it's about to come on, I can usually prevent myself from actually passing out by pinching myself or biting my lip and trying to slow down my breathing.

Hopefully the diet will keep you from passing out any more. If you do, you might want to see a good cardiologist who has dealt with this issue. As for the hair, I have the same problem too. My is thinning terribly. Someone else on this board recommended testing for Hashimoto's Disease. I had my blood work done this morning. Also, my hair stylist recommended taking Biotin supplements. They seem to have helped me. Also, I've replaced all my shampoo/conditioner/styling products with gluten free versions. I didn't realize, but all of mine had some form of wheat in them. I figure it can't hurt.

[MariaBanelli]

Thank you all for the replies.

Up until going onto a full gluten free diet, I often felt as though I was going to faint and can happily say that since I eliminated gluten, I don't get that feeling at all. I also used to get a lot of pins and needles in my hands and feet and that too has now passed.

I know that a 'Vagus nerve attack' can be a term for a faint but the nerve attacks I was having wasn't. I never fainted, lost consciousness once though leading up to the VN attack I had previously felt faint. My lungs just became paralyzed temporarily. The consultant who explained what was happening to me said that my Vagus nerve was getting cross wired and that can only happen through internal pain (normally the small intestine) and this confused signal to the brain causes the body to disrupt itself.

They have wanted to try and induce another attack under hospital supervision but I have refused. I know that I could be part of the research as to why this happens, I'm just too frightened, even in the best hands to risk going through this again.

Its very interesting hearing from your experiences and it would be even more interesting to understand why this happens. It just seems that celiac is so individual with its huge abundance of symptoms.

My mum, sister and her daughters have all just been tested. My sister and mum are always iron anemic and both have IBS but there tests came back negative. My niece has come back positive. My sons are refusing to be tested which is a shame.

[JHM]

Hello All:

I came across this series of posts from as Google search on "Wheat Vagus Nerve".

I find all of your replies very interesting and would like to add mine for those searching for information but with differing symptoms.

I have struggled with the vagus nerve impact to breathing as Maria mentioned in the original post, but only an impact to breathing and nothing else.  But my symptoms were brought on not only by wheat, but also by other ingredients such as dark chocolate, probiotics, caprylic acid, mustard, fluoride in toothpaste/mouthwash just to name a few.  I found when I sat down my breathing would return to normal, but as soon I got up, the impact would return.

The impact to breathing would come 4-6 hours after ingestion and last for about the same amount of time.  At times I could not even take ten steps without having to stop, not being able to breath even moderately.  The symptoms now are decreasing in severity but not in duration.

My doctor checked my blood for celiac and results were negative. A number of chest x-rays to rule out COPD.  I am waiting on an appoint with an allergy specialist in a few weeks to see what they have to say.  Needless to say, it is difficult to maintain a healthy weight.

Thanks for your posts, and I hope my contribution is of benefit to others also.

[joy steward]

WOW! I had no idea there was a connection betwen vagal nerve activity  and celiac. I was diagnosed as glutten intolerant about a year ago and have tried to maintain a  glutten free diet but have not been completely glutten free. In the last 6 months I have been in the hospital 4 times. The diagnosis was Bradycardia, Aarymthia. Three cardiologist said it was Vagal activity causing the heart issues. I needed to discover what the underlying issues are that might be causing my heart problem. I also have hypoglocemia and hershimoto' disease which is a autoimmune disorder that affects the thyroid gland and many of the symptoms that others have talked about, the constant burping during the episodes which might last 24 hours, fainting,  difficulty breathing, ringing in ears, trembling in upper body, sleep apnea,stomach aches, diarrhea and others.

I had no idea that glutten could cause vagal activity. Why aren't  Doctors telling us? Is it because they don"t know?

Edited March 24, 2018 by joy steward

[cyclinglady]

3 hours ago, joy steward said:

WOW! I had no idea there was a connection betwen vagal nerve activity  and celiac. I was diagnosed as glutten intolerant about a year ago and have tried to maintain a  glutten free diet but have not been completely glutten free. In the last 6 months I have been in the hospital 4 times. The diagnosis was Bradycardia, Aarymthia. Three cardiologist said it was Vagal activity causing the heart issues. I needed to discover what the underlying issues are that might be causing my heart problem. I also have hypoglocemia and hershimoto' disease which is a autoimmune disorder that affects the thyroid gland and many of the symptoms that others have talked about, the constant burping during the episodes which might last 24 hours, fainting,  difficulty breathing, ringing in ears, trembling in upper body, sleep apnea,stomach aches, diarrhea and others.

I had no idea that glutten could cause vagal activity. Why aren't  Doctors telling us? Is it because they don"t know?

 How was celiac disease ruled out?  What made them think gluten intolerance?  Did you have an endoscopy?  

Celiac disease is systemic and can affect many organs outside of the GI tract.  I would suggest a second opinion to rule out celiac disease because a gluten intolerant diagnosis does not seem to be enough of a diagnosis for you to adhere to  strict life-long gluten free diet.  If you decide to get a second opinion, get copies of your medical records to save time and money.  

Why don’t doctors know the connection?  Because celiac traditionally was depicted as a having GI issues and most often in children who fail to thrive or are malnourished.  

[joy steward]

On 10/20/2011 at 2:47 PM, bartfull said:

Maria, I just sent you a PM with some info that might help you. Go to the top right of the page and you'll see where to click to get my message.

I too, have same symptoms, i would to access info that might help.

[joy steward]

On 3/24/2018 at 10:54 AM, cyclinglady said:

 How was celiac disease ruled out?  What made them think gluten intolerance?  Did you have an endoscopy?  

Celiac disease is systemic and can affect many organs outside of the GI tract.  I would suggest a second opinion to rule out celiac disease because a gluten intolerant diagnosis does not seem to be enough of a diagnosis for you to adhere to  strict life-long gluten free diet.  If you decide to get a second opinion, get copies of your medical records to save time and money.  

Why don’t doctors know the connection?  Because celiac traditionally was depicted as a having GI issues and most often in children who fail to thrive or are malnourished.  

 

[joy steward]

On 3/24/2018 at 10:54 AM, cyclinglady said:

 How was celiac disease ruled out?  What made them think gluten intolerance?  Did you have an endoscopy?  

Celiac disease is systemic and can affect many organs outside of the GI tract.  I would suggest a second opinion to rule out celiac disease because a gluten intolerant diagnosis does not seem to be enough of a diagnosis for you to adhere to  strict life-long gluten free diet.  If you decide to get a second opinion, get copies of your medical records to save time and money.  

Why don’t doctors know the connection?  Because celiac traditionally was depicted as a having GI issues and most often in children who fail to thrive or are malnourished.  

My Dr. did a blood test, positive for glutten intolerance, not celiac disease. About 15 years ago I was positive for celiac disease, tested by stool sample.  Since I posted I have tested positive for heavy metals. Also I have high gastrin levels. getting ready to test for that. 

It appears to me that glutten intolerance, vagal activity, high gastrin levels are all connected somehow. 

[ravenwoodglass]

1 hour ago, joy steward said:

My Dr. did a blood test, positive for glutten intolerance, not celiac disease. About 15 years ago I was positive for celiac disease, tested by stool sample.  Since I posted I have tested positive for heavy metals. Also I have high gastrin levels. getting ready to test for that. 

It appears to me that glutten intolerance, vagal activity, high gastrin levels are all connected somehow. 

There are no blood tests for gluten intolerance only ones for celiac. If you doctor did blood testing and the results were positive why do they think you are inolerant rather than celiac? If this was decided because only one or two tests in the panel came back positive be aware that only one test needs to be positive to be a positive diagnosis for celiac. You very well may actually be celiac.

[cyclinglady]

@joy steward— Ravenwoodglass gave you some excellent advice.  The Vagus nerve can be impacted by many things. So is there a connection between celiac disease and Vagus Nerve issues?  Who knows for sure?  Autoimmune can impact people in so many ways.

if you are still consuming gluten, consider getting to a Gastroenterologist who can actually take a look inside and give you a definitive answer.  

[cyclinglady]

On 3/29/2018 at 7:48 AM, joy steward said:

I too, have same symptoms, i would to access info that might help.

Bartfull is no longer with us.  She had celiac disease and has since passed away (cancer).  She was a wealth of knowledge and offered common sense advice.  

As the Queen of passing out in my family (and having doctors see me have a Vasovagal response, including seizure-type reactions), I think healing from celiac disease or other autoimmune issues helps.  At this point, your best bet is to stick to a strict gluten free diet or consider a gluten challenge to get a definitive answer as to whether you have celiac disease or not.  

[ria.rose372]

Hi everyone, I know this is an older thread but I hope anyone searching around might see this! I’m a medical student as well as a fellow Celiac sufferer and general autoimmune sufferer (also have lupus, allergies, etc.) 

Another condition I’ve been diagnosed with and I’d encourage others to get tested for or talk to their doctors about if they have frequent lightheadedness, syncope, dizziness, nausea, heart palpitations, and other symptoms discussed in this thread- POTS (postural orthostatic tachycardia syndrome). It’s frequently found in people who have other autoimmune conditions and it’s often missed by physicians as it’s a misunderstood and more newly defined condition. But it can be managed with the right care. 

Just wanted to put this note here because I know how badly it sucks dealing with conditions like this and how often people go undiagnosed or told it’s all in their heads. 
 

Keep fighting, friends =)

[knitty kitty]

2 hours ago, ria.rose372 said:

Hi everyone, I know this is an older thread but I hope anyone searching around might see this! I’m a medical student as well as a fellow Celiac sufferer and general autoimmune sufferer (also have lupus, allergies, etc.) 

Another condition I’ve been diagnosed with and I’d encourage others to get tested for or talk to their doctors about if they have frequent lightheadedness, syncope, dizziness, nausea, heart palpitations, and other symptoms discussed in this thread- POTS (postural orthostatic tachycardia syndrome). It’s frequently found in people who have other autoimmune conditions and it’s often missed by physicians as it’s a misunderstood and more newly defined condition. But it can be managed with the right care. 

Just wanted to put this note here because I know how badly it sucks dealing with conditions like this and how often people go undiagnosed or told it’s all in their heads. 
 

Keep fighting, friends =)

Ria.Rose,

The vagus nerve is affected by thiamine deficiency.  I have had POTS and also thiamine deficiency.  When the Thiamine deficiency was corrected with high dose thiamine,  the POTS went away.

See Dr. Derrick Lonsdale and Dr. Chandler Marrs' book called "Thiamine Deficiency Disease, Dyautonomia, and High Calorie Malnutrition".  

Read this article on Dr.Marrs' website....

https://www.hormonesmatter.com/allergies-autonomic-response-thiamine/

Thiamine will help!

Research into the effects of vitamin deficiency diseases has been put by the wayside in favor of pharmaceuticals which only hide  the symptoms and don't cure the cause of the disease, and make lot of money for the big pharmaceutical companies.  

Thiamine deficiency affects the lower brain including the vagus nerve which regulates the autonomic nervous system.  In thiamine deficiency, autonomic functions like blood pressure regulation, heart beat and digestion are affected.  

On the chromosome which carries many genes for autoimmune diseases is also a gene which regulates thiamine transporters.  This gene switches off in thiamine deficiency (caused by eating a carbohydrate heavy diet without sufficient thiamine - empty calories like the standard American diet contains).  In order to turn the gene back on and get the Thiamine transporters working again, high doses (300mg or more a day) of thiamine must be taken in order for thiamine to get into the cells and allow the mitochondria to process thiamine into energy.  

Frustrated by my doctors' unsuccessful treatments, I did my own research.  (I'm a microbiologist).  I found Dr. Lonsdale's work and tried it myself.  I noticed immediate improvement.  High dose Thiamine is the answer.  Doctors are using high dose Thiamine in Covid patients on respirators to help them recover.  

Thiamine is the answer.

[Claire grace]

On 10/20/2011 at 8:25 AM, MariaBanelli said:

I was only recently diagnosed with Celiac but had a whole bunch of symptoms leading up to what eventually became very frightening.

I had, for some time been having all the symptoms of gluten intolerance, I just hadn't related it and neither had my doctor. I was getting alarmed at how much weight I was losing and how many hours in a day I found myself sitting on a loo. I went down to 82lbs before the first big attack came.

One day I was sat on the loo as usual but suddenly felt very sick and as though I was going to faint. My stomach felt like it had a rolling full term baby in it. I ended up calling my husband who managed to steady me and put a cold cloth on my head and then as soon as it came, it went.

I got up but within seconds I found I couldn't breath. It was as though my lungs had paralyzed. I must of been able to breath a tiny bit because the ambulance took a good five minutes to get to me but I was in total panic, I thought I was going to suffocate. They got me straight onto oxigen and told me I had hyperventilated but as soon as my breathing settled I started to go into shock. I started to feel extremely cold, like I had been thrown in ice water and i was shaking uncontrollably. My lips went blue and my arms and legs felt icy cold (all the blood was obviously rushing to major organs.

Once I was stabilized a doctor came in and suggested I had COPD or a bad asthma attack and so I was sent off for tests which showed no asthma and no signs of COPD.

A week later it happened again, exactly the same way and again once the busy emergency room had stabilized me and checked my heart and lungs, they sent me home. By now I was getting really frightened and so was my husband. My doctor scanned my liver, my womb, ovaries and stomach and just kept shrugging his shoulders.

10 days later it happened again but this time a consultant came in to see me and explained I was having something called Vagus nerve attacks and he suspected it was the small intestine that was the culprit. He took some blood tests and 'BINGO' it showed up Celiac disease.

 

I have now been on a totally gluten free diet for 3 months and touch wood have had no sign of another attack, though the thought of having another in the future terrifies me.

I have put on 17lbs in weight and am no more a regular at the loo than anyone else!

The only thing that really upsets me is, during this period of un-diagnosis my hair really thinned out. One of the things they discovered is that I was iron anemic but that has now been remedied. I hope my crowning glory does come back but even if it doesn't, I'm so glad that I am no longer poisoning my body and that I am getting better. I suddenly feel so full of energy and that old brain fog I had, had for so long has vanished.

 

To date, I haven't heard of anyone else having this sort of attack but would be interested to hear if anyone has had something similar.

Yes I have this frequently (It's horrible- The pain is worse than child birth and I gave birth to my daughter at home unmedicated. The most recent time was just last week so It's fresh in my mind😫I was sweating and felt like I was going to pass out and I also have celiac and an unrelated permanent Vagus nerve injury which can actually be a pre disposing factor to celiac and ironically also vice versa. 

 

Unfortunately I don't know how to stop it from happening, but I did find that using a bidet with hot and cold water alternating speeds up the process of elimination while At the same time Distracting the nervous system With the temperature changes which Is the only thing I found that helps stop the pain quickly (Still takes a good 5-10 minutes) but prevents actual passing out which has happened before to me.🤦 

I remember it was especially scary the 1st couple of times. After that the panic part went away a bit and it was easier to deal with once I knew I wasn't about to die.

 

The bidet really does make a big difference, I found 1 on Amazon for Under $40 which my husband installed easily himself (and he is not very handy w plumbing so ..) I now have 1 in every bathroom and its been one of the best investments i ever made. I don't know how I lived without them before.🤷 

[Claire grace]

I wonder if cabbage can trigger this?

...because thinking back to my episode last week, the only thing I ate that was different from my usual diet was purple cabbage and it happened several hours later. I can't recall if I ate it during the previous times however because it had been a few months since the last time but now im wondering if anyone else has any bad experience with cabbage? I already avoid most lectins since I don't do well with those either.

[knitty kitty]

Claire Grace, 

This is an old thread.  Please see my post above.

Yes, purple cabbage could have triggered this episode.  Purple cabbage contains thiaminase, a chemical that deactivates thiamine.  The Vagus nerve needs thiamine to relay messages between the body and the brain.

Your Vagus nerve injury may predispose you to an increased metabolic need which requires more thiamine for your Vagus nerve to work properly.  On top of that, Celiac Disease can cause malabsorption due to damage to the small intestine where thiamine and other vitamins are absorbed.

Thiamine is released when a nerve fires.  Without enough thiamine, due to malabsorption, increased metabolic need, or thiaminase destroying available thiamine, the Vagus nerve doesn't function properly.  

Thiamine is needed to make acetylcholine, a neurotransmitter. 

https://www.peirsoncenter.com/articles/acetylcholine-how-and-why-to-optimize-the-synthesis-of-this-vital-neurotransmitter

Malabsorption from Celiac Disease and SIBO can affect thiamine levels.  

https://www.eonutrition.co.uk/post/thiamine-deficiency-a-major-cause-of-sibo

 Thiaminase effects on Vagus nerve...

"They include polyphenols; these and related compounds are found in blueberries, red currants, red beets, brussel sprouts, red cabbage, betel nuts, coffee and tea."

http://helid.digicollection.org/en/d/Js2900e/8.2.html#:~:text=The thiaminase in the fish,deficiency and can be fatal.&text=They include polyphenols%3B these and,Hilker and Somogyi%2C 1982).

Also

https://jpet.aspetjournals.org/content/148/2/137

This book has helped me immensely...

See Dr. Derrick Lonsdale and Dr. Chandler Marrs' book called "Thiamine Deficiency Disease, Dyautonomia, and High Calorie Malnutrition".  

https://www.hormonesmatter.com/allergies-autonomic-response-thiamine/

I know supplementing with high dose thiamine has helped me.  I supplement high dose thiamine as directed in that book and on the hormonesmatter.com website.  I also supplement Niacin, Riboflavin, B6, and Vitamin C as recommended in the book.

Supplementing with thiamine may improve your symptoms.  Discuss this with your doctor.  Supplementing with high dose thiamine is safe.  There is no toxicity to thiamine.

Hope this helps!

4 hours ago, Claire grace said:

I wonder if cabbage can trigger this?

...because thinking back to my episode last week, the only thing I ate that was different from my usual diet was purple cabbage and it happened several hours later. I can't recall if I ate it during the previous times however because it had been a few months since the last time but now im wondering if anyone else has any bad experience with cabbage? I already avoid most lectins since I don't do well with those either.

 

[Claire grace]

On 9/4/2020 at 7:30 AM, knitty kitty said:

Claire Grace, 

This is an old thread.  Please see my post above.

Yes, purple cabbage could have triggered this episode.  Purple cabbage contains thiaminase, a chemical that deactivates thiamine.  The Vagus nerve needs thiamine to relay messages between the body and the brain.

Your Vagus nerve injury may predispose you to an increased metabolic need which requires more thiamine for your Vagus nerve to work properly.  On top of that, Celiac Disease can cause malabsorption due to damage to the small intestine where thiamine and other vitamins are absorbed.

Thiamine is released when a nerve fires.  Without enough thiamine, due to malabsorption, increased metabolic need, or thiaminase destroying available thiamine, the Vagus nerve doesn't function properly.  

Thiamine is needed to make acetylcholine, a neurotransmitter. 

https://www.peirsoncenter.com/articles/acetylcholine-how-and-why-to-optimize-the-synthesis-of-this-vital-neurotransmitter

Malabsorption from Celiac Disease and SIBO can affect thiamine levels.  

https://www.eonutrition.co.uk/post/thiamine-deficiency-a-major-cause-of-sibo

 Thiaminase effects on Vagus nerve...

"They include polyphenols; these and related compounds are found in blueberries, red currants, red beets, brussel sprouts, red cabbage, betel nuts, coffee and tea."

http://helid.digicollection.org/en/d/Js2900e/8.2.html#:~:text=The thiaminase in the fish,deficiency and can be fatal.&text=They include polyphenols%3B these and,Hilker and Somogyi%2C 1982).

Also

https://jpet.aspetjournals.org/content/148/2/137

This book has helped me immensely...

See Dr. Derrick Lonsdale and Dr. Chandler Marrs' book called "Thiamine Deficiency Disease, Dyautonomia, and High Calorie Malnutrition".  

https://www.hormonesmatter.com/allergies-autonomic-response-thiamine/

I know supplementing with high dose thiamine has helped me.  I supplement high dose thiamine as directed in that book and on the hormonesmatter.com website.  I also supplement Niacin, Riboflavin, B6, and Vitamin C as recommended in the book.

Supplementing with thiamine may improve your symptoms.  Discuss this with your doctor.  Supplementing with high dose thiamine is safe.  There is no toxicity to thiamine.

Hope this helps!

 

Thank you, I had never read much about thiamine prior to this and Given how important it is I'm surprised it's not more widely discussed. 

 I had also been eating a lot of blueberries and I believe I did have tea and some chocolate that day as well🤦 So all together it was probably a bad combination.

I do take a multivitamin which is smarty pants prenatal PHD formula, Which states it contains 50% RDI of thiamine for Pregnant or nursing women however I am neither so So I'm assuming that It should be a lower recommended daily amount for me but since I have malabsorption It's really hard to tell whether I'm getting enough of anything and I frequently have symptoms of vitamin and mineral deficiencies. The hard part is determining how much Of each vitamin and mineral to take because taking them All individually would be nearly impossible and Taking too much of a multivitamin is also a bad idea because you can get too much of some other vitamins that are not safe in those amounts.

Does anyone know if there is a reliable way to determine nutrient levels In the body if you have significant permanent malabsorption? 

I frequently have symptoms of vitamin B , C and calcium deficiency and electrolyte imbalances, I don't have any thirst for water So I have to remind myself ..well basically force myself to drink it because without thirst it is usually unpleasant, and measure how much I drink each day.

 I lost most of my natural teeth and I am still waiting for medical clearance to get implants, (which I've had a lot of trouble finding anyone who would be willing to do) This is related to the reason I have the Vagus nerve injury in the 1st place which is that I have ehlers danlos syndrome/ TNXB type hypermobility and this can affect The arteries and predispose to tissue fragility and aortic aneurysm. 

When I had my first 2 teeth removed I lost consciousness and my blood pressure dropped very very low and I went into shock, and then they had trouble stitching my gums because the stitches ripped right out. So they had to take the teeth out In separate appointments only 1 at a time and without using epinephrine because I have a bad reaction and they cannot stitch them because the stitches will not hold and cause more damage.😭 This is why they want a medical clearance for the implant surgery.

I've been trying to get the clearance for quite a while, and made 2 appointments only to have the offices call me to cancel after reviewing my records and refer me to a specialist who is much too far away for me to drive there.

 

It's been 3 years since all my teeth were removed and I'm still not able to get anything done about it. I currently have no chewing teeth at all, They wouldn't even give me dentures because they're waiting on medical clearance for implants. So I am eating basically the same diet as a 6 months old baby🤦😭 literally baby food pouches and toddler meat sticks that are soft enough to be chewed by the tongue. 

 

So I guess it's no surprise that I have trouble maintaining weight, at 5 ft 7 in tall I weigh about 107 lbs (BMI 16) anything below 18 is considered under weight. 

 To top it all off since corona the stores have been running short of these baby food pouches and the cost of having them delivered has made my husband quite upset. Especially when I need to especially when I need to eat about 20 of them a day😭🤦and I still barely maintain weight at 16 BMI.

I'm so lost on what to do about all of this and frustrated by how little options I have, but if I don't figure something out soon I am at very high risk of developing EATL leukemia lymphoma 😭

sorry for the long post... Too much on my mind🤦

 

 

 

[knitty kitty]

 

Claire Grace, 

You poor thing!

Thiamine is neglected by the medical profession because doctors are trained to prescribe pharmaceuticals while attending medical training institutions which are funded by pharmaceutical companies.  One doctor refused to check me for vitamin deficiencies because, and I quote,  "I can't make money prescribing vitamins."  Another doctor failed to test for thiamine deficiency because I told him I did not drink alcohol, despite the fact that I had profound symptoms of thiamine deficiency.    Sadly, many doctors think thiamine deficiency only occurs in alcoholism.  They don't think outside the box of their training.

The RDI and RDA are MINIMUM values necessary to PREVENT  illness.  These are not values required to be healthy!  The RDAs were first established eighty years ago when people ate more nutritious unprocessed foods.  These values, though updated periodically, are still outdated, especially considering the current amount of processed, high calorie, empty nutritional value,  foods consumed today. 

I looked at the vitamins you mentioned.  The forms of many of the individual vitamins and minerals listed in the ingredients are not in forms that are easy for the body to use.  They are basically physiologically inert.  Thiamine mononitrate is one of the least active forms of thiamine.  Magnesium is needed to activate thiamine, and the magnesium in this vitamin is negligible.  There's not enough magnesium here to work with the thiamine.  

And the "Spectra Whole Foods Antioxidant Blend" contains thiaminases, the coffee, green tea, and blueberry extracts.

You expressed concern about calcium deficiency, yet this vitamin contains no calcium.

Blood tests for vitamin deficiencies are not always reliable because the vitamins are used inside the cells of the tissues and organs.  The body will deplete the vitamins in the tissues and organs in order to fuel the needs of the brain by sending the vitamins via the blood to the brain, so you can still be deficient while having normal serology.

In order to correct a deficiency, you need more than the recommended daily allowance.  You have to replace what's missing in the tissues as well as providing enough for every day functioning plus more for increased metabolic needs during stress and illness.

There are fat soluble vitamins that get stored in fat.  These are the ones that you don't want to get too much of.  Vitamin A, D, E and K are the fat soluble vitamins.  However, because Celiacs have difficulty absorbing fats, even these are frequently low.  Many Celiacs are deficient in Vitamin D and Vitamin A.  

Then there are water soluble vitamins.  The EIGHT different B vitamins and Vitamin C are water soluble.  B12 (Cobalamine) is the only one of the B vitamins that can be stored any length of time.  The other water soluble vitamins can not be stored for very long and must be replenished every day.   You can become severely deficient in Thiamine in as little as nine days.  You can have a chronic low thiamine level that causes all sorts of health problems.  Because they are soluble in water, any excess your body doesn't use or can't use up that day is excreted in urine.

I chose to take a B-100-Complex vitamin.  I also take high dose thiamine (lipothiamine) as Dr. Lonsdale advises.  And Vitamin C, Vitamin D, and Vitamin A supplements.  I take a magnesium glycinate supplement.  And a trace mineral supplement.  

Absence of thirst is a symptom of Thiamine deficiency!!!  Vitamin C is needed for tissue integrity and healing those gums!  I really suggest you talk to your doctor about testing for vitamin and mineral deficiencies and beginning supplementation. And perhaps talk to a nutritionist.  

Have you thought about getting a crock pot or slow cooker or instant pot and cooking your own soups and stews from fresh meat and veggies, then pureeing them to a consistency you can tolerate?  It would be cheaper, fresher, and more nutritious than processed baby food.  You could dish up some unpureed stew for your hubby before you puree yours.  I know some people develop problems with the packaging of foods, like the plastic linings inside cans of food which may contain sulfites and antimicrobials and preservatives.

My heart goes out to you.  Please check with your doctor about the thiamine deficiency and other deficiencies.  Do discuss high dose thiamine supplementation like Dr. Lonsdale recommends.  If I can be of further help, don't hesitate to ask.

 

 

  

 

 

 

[Claire grace]

I do also take a calcium multi-mineral chew also by smarty pants which was recommended for my daughter who is now 4 years old because she had hypo mineralization of several of her baby teeth. Those teeth like mine also had to be removed because she did not receive enough calcium from me while still in the womb for them to develop properly.

Fortunately all of her teeth which have developed since birth are normally mineralized. 

My calcium levels were so low that I actually had to have intervenus calcium at 6 months of pregnancy because of serious cardiac arrhythmias, and at first they thought I was in kidney failure because my electrolyte levels were so unbalanced. This is what eventually lead me to discover that I had celiac disease. 

 

Only to later find out that I had been diagnosed as a child after having an endoscopy  which found damage from what they suspected was celiac, as well as acid reflux due to hiatal hernia. ...but my parent(s) disagreed with the diagnosis (and still do- I have to fight with them especially my dad about not bringing gluten into my house when he comes to visit) so they never tried giving me a gluten free diet because even if they did agree with it, they didn't think it was even possible to find enough food to give me that was gluten free at the time (In the early 90s) and supposedly the doctors told them that most people outgrow the symptoms by adulthood.😣😒

 

I'm going to order the lipothiamine today, I think it will help alot. I also do occasionally take mega mag magnesium mineral liquid drops (which I will make sure I do more regularly now). ❤ Thank you so much for all of your help, I will let you know how it goes😉