Diarrhea mystery solved after a year

[Jujuconnor]

After a difficult lung transplant, celiac disease being one of many problems as well as diarrhea (I’m going to say the runs) for the past year during my recovery.  
last week I became so bloated and sick of taking the Imodium that I just stopped.  I was taking 8 a day, for a year.  Total runs for a year.   Doctors at Mayo Clinic said constipation can cause this.   The poop will run around the hard stuff.   Well, I think that’s what’s been going on.  After a year of doctors not knowing what’s going on…now remember lung transplant, positive celiac, kidney failure, life support, list goes on and on……..,I was a mess.  I finally just said said no more medication……and 😇problem fixed……go figure!  I’ve got many angels on my side, thanks angels……😇😇😇😇😇😇😇😇😇😇

[Scott Adams]

Did you quit taking Imodium and it helped end your diarrhea, or did you quit all meds? Also, did you check all of your meds to be sure they are gluten-free? 

You can search this site for prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication:

To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area.

• https://dailymed.nlm.nih.gov/dailymed/ 

 

[Jujuconnor]

21 hours ago, Scott Adams said:

Do you quit taking Imodium and it helped end your diarrhea, or did you quit all meds? Also, did you check all of your meds to be sure they are gluten-free? 

You can search this site for prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication:

To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area.

• https://dailymed.nlm.nih.gov/dailymed/ 

 

My doctor thinks it may be the anti rejection medication, there is no alternative….I stopped only the Imodium. Stools not totally normal, but a lot better.  My body still recovering…..

[knitty kitty]

Have you been checked for vitamin deficiencies?  Especially Thiamine deficiency?  An Erythrocyte Transketolase test is more accurate than a blood test.  

Deficiency in Thiamine or Niacin or Cobalamine B12 can cause diarrhea.  

[Scott Adams]

Be sure to run any new supplements or meds by your doctors first. 

[Jujuconnor]

I need to delete this topic as the runs have returned….

[Wheatwacked]

All the more reason to continue it. 

[knitty kitty]

With the runs and backed up both for a year, there's bound to be nutritional deficiencies.  

Have you been drinking any nutritional shakes?  

What have you been eating?

[Jujuconnor]

Not much….at all.  I’m malnutritioned I’m sure. My hair on arms are very long, when I used to have none.  Stomach is bloated…can’t loose weight.  Pain on right side now instead of left, it never ends……now I can’t even eat rice cake’s because they get caught in my throat.  I have tracheal stenosis and esophagus problems from the lung transplant and life support for months…..

to answer your question

i eat about 6 rice cakes with medicine 2X a day, try to eat fruit (hard to do with the runs) and that’s about it….

[Jujuconnor]

I do have some good days…..on those days I’ll eat a healthy dinner…I’m also lactose intolerant….🤦‍♀️🤦‍♀️🤦‍♀️

[knitty kitty]

@Jujuconnor,

Thiamine deficiency can manifest as Gastrointestinal Beriberi, with symptoms very similar to yours.  I'm attaching some studies that describe Gastrointestinal Beriberi so you can compare symptoms.   

Since your health is fragile right now, I suggest you find a doctor to address your nutritional deficiencies.  Doctors can administer vitamins intravenously.  Request an Erythrocyte Transketolase test.  

Doctors completely missed my nutritional deficiencies when I had Gastrointestinal Beriberi.  My thiamine deficiency got worse and worse.  You don't want to get to severe thiamine deficiency when ones brain doesn't function properly as in Wernicke's Encephalopathy.  It's a life threatening situation.  There's more of my journey in my blog.  

Keep us posted on your progress.

Gastrointestinal beriberi: a forme fruste of Wernicke’s encephalopathy?

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6040496/

 

Elevated Lactate Secondary to Gastrointestinal Beriberi

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4699997/

[Scott Adams]

Can you eat mashed potatoes? They offer many nutrients beyond rice cakes.

[Jujuconnor]

I can, however need to be careful because of the potassium and kidney disease, don’t forget no dairy…it’s not fun being me….I appreciate all the help…I really do.  I’m going to look into kitty’s website as I’ve been having a lot of brain fog……it’s been scary 

I have problems with this website, I cannot figure out how to go to a specific “page” or a “feed” or a certain topic…..I’m sure it’s just me…

[Jujuconnor]

20 hours ago, knitty kitty said:

@Jujuconnor,

Thiamine deficiency can manifest as Gastrointestinal Beriberi, with symptoms very similar to yours.  I'm attaching some studies that describe Gastrointestinal Beriberi so you can compare symptoms.   

Since your health is fragile right now, I suggest you find a doctor to address your nutritional deficiencies.  Doctors can administer vitamins intravenously.  Request an Erythrocyte Transketolase test.  

Doctors completely missed my nutritional deficiencies when I had Gastrointestinal Beriberi.  My thiamine deficiency got worse and worse.  You don't want to get to severe thiamine deficiency when ones brain doesn't function properly as in Wernicke's Encephalopathy.  It's a life threatening situation.  There's more of my journey in my blog.  

Keep us posted on your progress.

Gastrointestinal beriberi: a forme fruste of Wernicke’s encephalopathy?

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6040496/

 

Elevated Lactate Secondary to Gastrointestinal Beriberi

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4699997/

Way too complicated for someone with ADHD to understand, but I get the point.  One thing I don’t mention often is my donor had syphilis and hepatitis B.  The doctors said legally they had to tell us that, but it doesn’t go into the lungs.  So I’ve been scared to death about both of those things.  I can’t spell or speak anymore…my brain just doesn’t work right.  Now, I was on life support for 40 days…and had respiratory failure.  So that could be part of it.  

[knitty kitty]

@Jujuconnor,

Changes in the ability to speak and spell are symptoms Wernicke's Encephalopathy of Thiamine Deficiency!  ADHD is connected with high calorie malnutrition which is Thiamine Deficiency!

Here are studies showing doctors don't recognize and treat Thiamine Deficiency in the critically ill.  

Please seek medical attention!

Thiamine Deficiency: An Important Consideration in Critically Ill Patients

https://pubmed.ncbi.nlm.nih.gov/30146080/

Thiamine supplementation in the critically ill

https://pubmed.ncbi.nlm.nih.gov/21912244/

[Jujuconnor]

I can, however need to be careful because of the potassium and kidney disease, don’t forget no dairy…it’s not fun being me….I appreciate all the help…I really do.  I’m going to look into kitty’s website as I’ve been having a lot of brain fog……it’s been scary 

I have problems with this website, I cannot figure out how to go to a specific “page” or a “feed” or a certain topic…..I’m sure it’s just me…

[Jujuconnor]

I hope I’m doing this right….  This response is meant to go to kitty, I wish these would say where they are posting before they go……..   

[Jujuconnor]

On 2/8/2024 at 8:40 PM, knitty kitty said:

@Jujuconnor,

Thiamine deficiency can manifest as Gastrointestinal Beriberi, with symptoms very similar to yours.  I'm attaching some studies that describe Gastrointestinal Beriberi so you can compare symptoms.   

Since your health is fragile right now, I suggest you find a doctor to address your nutritional deficiencies.  Doctors can administer vitamins intravenously.  Request an Erythrocyte Transketolase test.  

Doctors completely missed my nutritional deficiencies when I had Gastrointestinal Beriberi.  My thiamine deficiency got worse and worse.  You don't want to get to severe thiamine deficiency when ones brain doesn't function properly as in Wernicke's Encephalopathy.  It's a life threatening situation.  There's more of my journey in my blog.  

Keep us posted on your progress.

Gastrointestinal beriberi: a forme fruste of Wernicke’s encephalopathy?

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6040496/

 

Elevated Lactate Secondary to Gastrointestinal Beriberi

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4699997/

 

[knitty kitty]

@Jujuconnor,

That's a test for Thiamine in whole blood.  Whole blood tests for Thiamine are not an accurate measurement of the amount of Thiamine inside cells where thiamine is actually used.  

An Erythrocyte Transketolase test gives a more accurate measurement.  

Thiamine is pulled out of cells in organs in order to supply the brain and heart.  The bloodstream is a transport system.  Bloodstream blood levels don't reflect the lack of Thiamine inside organs. 

Many of these studies repeatedly state whole blood levels can be within "normal" limits, but there's still a Thiamine deficiency within organs.  These studies say that there are beneficial effects of taking higher doses of Thiamine.  

Thiamine is water soluble.  If you don't need it, the kidneys excrete it easily. 

Potassium wasting occurs in Thiamine deficiency.  Thiamine helps our bodies hang on to Potassium.  Without Thiamine, more potassium is excreted through the kidneys.  Kidneys start to malfunction without sufficient thiamine.  Thiamine and potassium get excreted in higher levels in low Thiamine. 

The World Health Organization says because blood tests for Thiamine are so unreliable, the best way to diagnosis a Thiamine deficiency is to take high doses of Thiamine (greater than 500 mg) and look for improvement.  

Because Thiamine is safe and nontoxic even in high amounts, there is no harm in taking high doses.  No harm, no foul.  No reason not to try it for yourself and see.

I took over-the-counter Thiamine in the forms called Benfotiamine and Allithiamine and Thiamine Hydrochloride.  I was so severely deficient, I had improvement within an hour, just like these articles reported improvement, just like WHO says will happen.  

Thiamine needs magnesium and other B vitamins and minerals for our bodies to function.  I also took a B Complex and Magnesium Glycinate and Magnesium Threonate.

Doctors can administer a Banana bag IV (full of vitamins), magnesium, and high dose Thiamine. 

Most cases of Wernicke's Encephalopathy are diagnosed postmortem. 

I've experienced Thiamine deficiency myself.  I was deficient in many vitamins and minerals because of undiagnosed Celiac Disease.  All the B vitamins work together with minerals like magnesium.  If we can't absorb them, we get sick.  

I've earned a degree at university in microbiology.  I've studied nutrition.  When doctors gave up on me, I relied on what I had learned at university.  It worked!  Doctors are trained to prescribe pharmaceuticals.  They are not given much education about nutrition, vitamins and minerals.  They don't know pharmaceuticals won't work without the vitamins and minerals our bodies need to stay alive.  

I share my experience so others don't have to suffer likewise.   Here's my blog about my journey and research.

 

[knitty kitty]

Your blood test for Thiamine was done in October.  

Thiamine blood levels can fluctuate depending on dietary thiamine.  Blood level can reflect how much I was absorbed from ones diet in the previous twenty-four to forty-eight hours.  

The body requires more Thiamine when we're physically ill, emotionally stressed, and if physically active outdoors.  

Thiamine deficiency disorder symptoms can occur in as little as three days.  

 

Thiamine 

https://ods.od.nih.gov/factsheets/Thiamin-HealthProfessional/

 

[Jujuconnor]

Oh I truly appreciate this….and we did go this route.  My body cannot handle the magnesium.   We tried and tried…….we even did IV magnesium….i go for my monthly checkup with the lung team in 2 weeks, I shall bring this up..

[knitty kitty]

@Jujuconnor,

Did the doctors give you Thiamine at the same time as you received the magnesium?  

Magnesium supplementation alone won't work.  Magnesium needs Thiamine to work properly.  

I'm glad you will see doctors in two weeks!   Do try to eat more green leafy vegetables (romaine has thiamine) and meat (liver is a great source of B vitamins and minerals) and reduce empty carbohydrate calories (rice cakes).  

Do seek medical attention sooner if your symptoms worsen, if you have pins and needles, irregular heartbeat, fainting, or have further mental decline.  

Please keep us posted on your progress!

Best wishes!  

Edited February 10 by knitty kitty
Typo Correction

[Wheatwacked]

Talk to your doctors about:

Increase Vitamin D to 80 ng/ml.  

Low vitamin D levels are associated with increased rejection and infections after lung transplantation  "In the near-transplant period, 80% of recipients were 25(OH)D-deficient and 20% were not 25(OH)D-deficient."

Iodine. 

Urinary iodine as an iodine deficiency test in lung transplant recipients in order to prevent iodine deficiency disorders   "Although thyroid gland hormones were in the normal range, we found moderate, mild, and severe iodine deficiency in the majority of analyzed samples. Measurements of urinary iodine in lung transplant recipients should accompany thyroid hormone measurements as an iodine deficiency test and in order to prevent iodine deficiency disorders."

Last month I increased daily iodine with Liquid Iodine to around 10 to 20 drops a day (50 mcg per drop of the brand I take (KI + I) with amazing results in vision, brain fog, hearing, muscle tone, hair, skin and a sebaceaus cyst that has been SLOOOWLY healing since 2014.  Iodine is needed for healing.  Before they stopped using iodine in the US as a dough conditioner two sandwiches and a glass of milk supplied 500 mcg a day.

Increase Choline above 500 mg a day through food, eggs, beef, liver or supplement. Fat digestion.  Homocysteine level (cardiovascular inflammation). brain fog, mitochondria.  Only 10%% of us eat the minimum RDA.

Thiamine:  what Knitty Kitty said.

Iodine I increased daily iodine with Liquid Iodine to around 10 to 20 drops a day (50 mcg per drop of the brand I take (KI + I) starting a month ago with amazing results in vision, brain fog, hearing, muscle tone, hair, skin and a SLOW healing sebaceaus cyst that I've had since 2014.  It is needed for healing.  Before they stopped using iodine in the US as a dough conditioner two sandwiches and a glass of milk supplied 500 mcg a day.

Urinary iodine as an iodine deficiency test in lung transplant recipients in order to prevent iodine deficiency disorders   Although thyroid gland hormones were in the normal range, we found moderate, mild, and severe iodine deficiency in the majority of analyzed samples. Measurements of urinary iodine in lung transplant recipients should accompany thyroid hormone measurements as an iodine deficiency test and in order to prevent iodine deficiency disorders.

An occasional plain water enema may help flush bad bacteria from your large intestine allowing the beneficial to take over and can help increase hydration when it is difficult to drink enough.  The colon's job is after all to absorb excess water.

[Jujuconnor]

Thank you…will do!

[Jujuconnor]

❤️