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Almost in remission!!!

lydialoo
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lydialoo Rookie
lydialoo
Posted

Hey everyone!

I wanted to say thanks for all the help on here. Today I had some good news that my celiac is almost undetectable!!! 

Actually turns out most my symptoms have been related to dysautonomia (POTs) and actually I probably wouldn't have realised I had celiac if it wasn't for this. Still in the early stages of learning to manage this but for the first time in years I finally feel like there's hope. 

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Scott Adams Grand Master
Scott Adams
Posted

Nice job! Did you get a blood panel or a follow up endoscopy? I'm just curious what doctors are doing now for follow up care.

lydialoo Rookie
lydialoo
Posted
  • Author

Hey @Scott Adams. 

For me they Just retested my bloods. My doctor did say they may repeat biopsy in the future if necessary (as some symptoms from POTs can be similar to celiac symptoms she just wants to be 100% on what's happening). My bloods came back amazingly improved though and I have no vitamin deficiencies or anything so that's really good news.

Scott Adams Grand Master
Scott Adams
Posted

Nice work--and being a celiac involves some work, it's kind of like a job to avoid all of that gluten that is out there!

lydialoo Rookie
lydialoo
Posted
  • Author
38 minutes ago, Scott Adams said:

Nice work--and being a celiac involves some work, it's kind of like a job to avoid all of that gluten that is out there!

🤣 yep!! It can be, I'm so fortunate my partner is a chef and has become a bit of a wizard with making gluten free recipies.

knitty kitty Grand Master
knitty kitty
Posted

@lydialoo,

Congratulations on your improvements!

Dysautonomia and POTS are caused by Thiamine insufficiency.  Blood tests for Thiamine deficiency are not an accurate measurement of how well Thiamine is being utilized inside cells and organs.  An Erythrocyte Transketolase test is a better measure.  

I've had POTS and Dysautonomia myself.  I took high dose Thiamine and my symptoms improved dramatically.  

Thiamine deficiency disorders are under diagnosed.  Celiac Disease causes malabsorption of the B vitamins like Thiamine.  Thiamine provides energy for mitochondria inside cells to function.  Without sufficient thiamine, the mitochondria don't function well.  If the mitochondria aren't working well, there is less uptake of thiamine from the blood stream, so blood levels appear normal.  It's a functional deficiency.  

The World Health Organization says to give Thiamine in high doses for several days and look for improvement.  Since Thiamine is water soluble, nontoxic, safe in high doses, and easily excreted, there's no harm, no foul for trying.  

High dose Thiamine really made a big difference for me.  My symptoms improved within hours.  

References:

Dysautonomia, A Heuristic Approach to a Revised Model for Etiology of Disease

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2644268/

Nutritional Implications of Patients with Dysautonomia and Hypermobility Syndromes

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8435108/

Thiamine deficiency disorders: a clinical perspective

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8451766/

Hiding in Plain Sight: Modern Thiamine Deficiency

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

And...

Thiamine and benfotiamine: Focus on their therapeutic potential

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10682628/

And...

https://www.betterhealthguy.com/episode163

  • 2 weeks later...
Celiac16 Apprentice
Celiac16
Posted
On 4/8/2024 at 1:13 AM, knitty kitty said:

@lydialoo,

Congratulations on your improvements!

Dysautonomia and POTS are caused by Thiamine insufficiency.  Blood tests for Thiamine deficiency are not an accurate measurement of how well Thiamine is being utilized inside cells and organs.  An Erythrocyte Transketolase test is a better measure.  

I've had POTS and Dysautonomia myself.  I took high dose Thiamine and my symptoms improved dramatically.  

Thiamine deficiency disorders are under diagnosed.  Celiac Disease causes malabsorption of the B vitamins like Thiamine.  Thiamine provides energy for mitochondria inside cells to function.  Without sufficient thiamine, the mitochondria don't function well.  If the mitochondria aren't working well, there is less uptake of thiamine from the blood stream, so blood levels appear normal.  It's a functional deficiency.  

The World Health Organization says to give Thiamine in high doses for several days and look for improvement.  Since Thiamine is water soluble, nontoxic, safe in high doses, and easily excreted, there's no harm, no foul for trying.  

High dose Thiamine really made a big difference for me.  My symptoms improved within hours.  

References:

Dysautonomia, A Heuristic Approach to a Revised Model for Etiology of Disease

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2644268/

Nutritional Implications of Patients with Dysautonomia and Hypermobility Syndromes

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8435108/

Thiamine deficiency disorders: a clinical perspective

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8451766/

Hiding in Plain Sight: Modern Thiamine Deficiency

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

And...

Thiamine and benfotiamine: Focus on their therapeutic potential

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10682628/

And...

https://www.betterhealthguy.com/episode163

I second this!! I was diagnosed with POTS too and thiamine was a lifesaver along with going low carb (carbs and sugars deplete b1, and diabetics are ubiquitously deficient). It helped my vertigo, nausea, shortness of breath, and tachycardia that had me in and out of the hospital with mild acidosis. I was strict gluten and dairy free for years but continued to deteriorate and now I finally feel like I’m turning the corner.

It seems very random but it’s helpful to research the symptoms of thiamine deficiency.(  It’s a water soluble vitamin so there is minimal risk in supplementation compared to fat soluble. )

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knitty kitty Grand Master
knitty kitty
Posted

@Celiac16,

Fat soluble vitamins are Vitamins A, D, E, and K.  There's little risk of toxicity unless one takes supplementing to excessive levels for a long period of time.  

https://ods.od.nih.gov/factsheets/VitaminA-HealthProfessional/#h17

https://ods.od.nih.gov/factsheets/VitaminD-HealthProfessional/#h36

https://ods.od.nih.gov/factsheets/VitaminE-HealthProfessional/#h14

https://ods.od.nih.gov/factsheets/VitaminK-HealthProfessional/#h14

 

lydialoo Rookie
lydialoo
Posted
  • Author
On 4/17/2024 at 2:24 AM, Celiac16 said:

I second this!! I was diagnosed with POTS too and thiamine was a lifesaver along with going low carb (carbs and sugars deplete b1, and diabetics are ubiquitously deficient). It helped my vertigo, nausea, shortness of breath, and tachycardia that had me in and out of the hospital with mild acidosis. I was strict gluten and dairy free for years but continued to deteriorate and now I finally feel like I’m turning the corner.

It seems very random but it’s helpful to research the symptoms of thiamine deficiency.(  It’s a water soluble vitamin so there is minimal risk in supplementation compared to fat soluble. )

 

On 4/17/2024 at 9:34 AM, knitty kitty said:

@Celiac16,

Fat soluble vitamins are Vitamins A, D, E, and K.  There's little risk of toxicity unless one takes supplementing to excessive levels for a long period of time.  

https://ods.od.nih.gov/factsheets/VitaminA-HealthProfessional/#h17

https://ods.od.nih.gov/factsheets/VitaminD-HealthProfessional/#h36

https://ods.od.nih.gov/factsheets/VitaminE-HealthProfessional/#h14

https://ods.od.nih.gov/factsheets/VitaminK-HealthProfessional/#h14

 

I have been taking high doses of thiamine for some time now and seen no improvement at all sadly.

knitty kitty Grand Master
knitty kitty
Posted

@lydialoo,

Tell me about your high dose Thiamine routine.

What kind of Thiamine are you taking? 

How much (mg) are you taking? 

When do you take it?

Are you taking a B Complex?  

Are you taking Magnesium? 

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