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Insulin Resistance, pre-diabetes & gluten-free Products


Ginger38

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Ginger38 Rising Star

I was diagnosed with insulin resistance/pre-diabetes years ago. I take metformin which is not supposed to mess with your blood sugar. I'm struggling with my blood sugar since trying to stick to gluten free living.Its not all gluten-free foods but particular ones. Every time I eat gluten-free bread I get sick with sugar issues. Can anyone relate or help me with this?? Its hard to stick to this diet when I feel worse 


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knitty kitty Grand Master

@Ginger38,

I was diagnosed with insulin resistance, prediabetes, and eventually Type Two Diabetes.  I was prescribed Metformin.  

Metformin is supposed to make our body more sensitive to insulin and by doing so, our body's blood sugar level is lowered.  

Metformin is a bad drug, in my experience.  Metformin uses the same transporters to get into cells as thiamine (Vitamin B1).  With thiamine transporters usurped and blocked by Metformin, very little thiamine can enter cells.  Thiamine is instrumental in converting carbohydrates into energy.  With too little thiamine, carbs are turned into fat and stored in our body.

Metformin can also cause a deficiency of B12.  Metformin interferes with the absorption of B12.  Metformin also blocks the transporters that B12 uses to get into cells.  Metformin can also interfere with iron absorption.  Deficiencies of B12 and iron can cause anemia.

Wheat (and other gluten containing) products are required by law to be enriched with vitamins lost in processing.  Gluten free facsimile foods are not required to be enriched with vitamins lost in processing.  When we switch to gluten free facsimile foods (like gluten free bread), we lose the vitamins usually added to the gluten containing counterparts.  

Celiac Disease is a disease of malabsorption.  The villi in the small intestine, where vitamins are usually absorbed, are damaged and cannot absorb the vitamins, hence we develop vitamin deficiencies.  Blood tests for vitamins are not accurate.  Our body likes to keep a certain amount of vitamins in the bloodstream to supply important organs like the heart and the brain with what they need to function, while the tissues are robbed of their stores of vitamins.  Blood tests don't reflect the vitamin deficiency inside the cells of tissues and organs.  Blood tests can reflect how much of certain vitamins were consumed in the previous twenty-four hours.  Some people have "normal" blood levels, but show a deficiency in tests that measure the by-products of thiamine usage.  

Thiamine is water soluble.  It can't be stored for longer than three weeks, and we can become deficient in as little as nine days.  Diabetics excrete more thiamine than nondiabetics.  Scientists don't know why.  

I was morbidly obese.  I could not lose weight even though I changed my diet at the prediabetes warning.  Thiamine deficiency symptoms include peripheral neuropathy and edema of the lower legs.  My toes "buzzed" and my ankles used to swell up.  I could press my thumb into my ankle and a dent would stay. I also used to get Charlie horses (muscle cramps) in my lower legs.  Thiamine needs magnesium to work properly.  Magnesium helps muscles relax.  Magnesium deficiency can cause really horrific nightmares, too. 

I had tachycardia.  When the heart does not have enough thiamine, the heart can throw PVC's, and suffer SVT's, tachycardia, fast heart rate, skipping beats, etc.  Edema around the heart can occur.  These are symptoms of Wet Beriberi.

When our brain doesn't have enough thiamine, the Vagus nerve, which sends signals to our digestive tract, can be affected.  The cells in are digestive tract don't have enough thiamine needed to function properly resulting in gastroparesis, constipation, diarrhea, bloating, Gerd, etc.  This is Gastrointestinal Beriberi.  

Our thiamine deficient brain can register peripheral neuropathy, vestibular problems (balance problems, feelings of sea sickness), loss of hearing, and vision problems, as well as emotional lability (getting easily upset, irritability, mood swings, depression, irrational thoughts, impaired judgment).  This is common with Dry Beriberi.  

Our pancreas uses lots of thiamine to make insulin.  Thiamine deficiency can affect the amounts of insulin being made.  If we don't have a sufficient supply of thiamine, we can run short on insulin and our blood sugar levels go up.  

As diabetics, we have a higher metabolic need for thiamine because our bodies excrete more than nondiabetics.  We have a higher metabolic need for thiamine because we need to make insulin.  We have a higher metabolic need for thiamine because some medications like Metformin, thiazide diuretics, vaccines, and ACE inhibitors, cause thiamine to be excreted faster, and cause thiamine not to be absorbed in the digestive tract, and cause thiamine to be blocked from entering cells.  

As Celiac people with malabsorption issues, we need to compensate by giving our bodies plenty of thiamine and the other seven B Complex vitamins (the eight B vitamins all are interdependent).  Talk to your doctor about supplementing with a B Complex supplement and 300 -500 mg of thiamine.  

I adopted the AutoImmune Protocol diet and I supplemented with high dose Thiamine (500-1000 mg).  I began to lose weight and got my blood sugar levels under tight control.  I took thiamine and B Complex with every meal.  I was able to quit taking Metformin and the other drugs prescribed to cover the symptoms of other health problems that had arisen from malnutrition.  

Here's some reading you may find interesting....

"The Dramatic Recovery of a Patient with Biguanide-associated Severe Lactic Acidosis Following Thiamine Supplementation"

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5364202/

And...

"Metformin and Thiamine"

https://www.hormonesmatter.com/tag/metformin-vitamin-b1/

I wish you the best on your journey.

 

Ginger38 Rising Star
2 hours ago, knitty kitty said:

@Ginger38,

I was diagnosed with insulin resistance, prediabetes, and eventually Type Two Diabetes.  I was prescribed Metformin.  

Metformin is supposed to make our body more sensitive to insulin and by doing so, our body's blood sugar level is lowered.  

Metformin is a bad drug, in my experience.  Metformin uses the same transporters to get into cells as thiamine (Vitamin B1).  With thiamine transporters usurped and blocked by Metformin, very little thiamine can enter cells.  Thiamine is instrumental in converting carbohydrates into energy.  With too little thiamine, carbs are turned into fat and stored in our body.

Metformin can also cause a deficiency of B12.  Metformin interferes with the absorption of B12.  Metformin also blocks the transporters that B12 uses to get into cells.  Metformin can also interfere with iron absorption.  Deficiencies of B12 and iron can cause anemia.

Wheat (and other gluten containing) products are required by law to be enriched with vitamins lost in processing.  Gluten free facsimile foods are not required to be enriched with vitamins lost in processing.  When we switch to gluten free facsimile foods (like gluten free bread), we lose the vitamins usually added to the gluten containing counterparts.  

Celiac Disease is a disease of malabsorption.  The villi in the small intestine, where vitamins are usually absorbed, are damaged and cannot absorb the vitamins, hence we develop vitamin deficiencies.  Blood tests for vitamins are not accurate.  Our body likes to keep a certain amount of vitamins in the bloodstream to supply important organs like the heart and the brain with what they need to function, while the tissues are robbed of their stores of vitamins.  Blood tests don't reflect the vitamin deficiency inside the cells of tissues and organs.  Blood tests can reflect how much of certain vitamins were consumed in the previous twenty-four hours.  Some people have "normal" blood levels, but show a deficiency in tests that measure the by-products of thiamine usage.  

Thiamine is water soluble.  It can't be stored for longer than three weeks, and we can become deficient in as little as nine days.  Diabetics excrete more thiamine than nondiabetics.  Scientists don't know why.  

I was morbidly obese.  I could not lose weight even though I changed my diet at the prediabetes warning.  Thiamine deficiency symptoms include peripheral neuropathy and edema of the lower legs.  My toes "buzzed" and my ankles used to swell up.  I could press my thumb into my ankle and a dent would stay. I also used to get Charlie horses (muscle cramps) in my lower legs.  Thiamine needs magnesium to work properly.  Magnesium helps muscles relax.  Magnesium deficiency can cause really horrific nightmares, too. 

I had tachycardia.  When the heart does not have enough thiamine, the heart can throw PVC's, and suffer SVT's, tachycardia, fast heart rate, skipping beats, etc.  Edema around the heart can occur.  These are symptoms of Wet Beriberi.

When our brain doesn't have enough thiamine, the Vagus nerve, which sends signals to our digestive tract, can be affected.  The cells in are digestive tract don't have enough thiamine needed to function properly resulting in gastroparesis, constipation, diarrhea, bloating, Gerd, etc.  This is Gastrointestinal Beriberi.  

Our thiamine deficient brain can register peripheral neuropathy, vestibular problems (balance problems, feelings of sea sickness), loss of hearing, and vision problems, as well as emotional lability (getting easily upset, irritability, mood swings, depression, irrational thoughts, impaired judgment).  This is common with Dry Beriberi.  

Our pancreas uses lots of thiamine to make insulin.  Thiamine deficiency can affect the amounts of insulin being made.  If we don't have a sufficient supply of thiamine, we can run short on insulin and our blood sugar levels go up.  

As diabetics, we have a higher metabolic need for thiamine because our bodies excrete more than nondiabetics.  We have a higher metabolic need for thiamine because we need to make insulin.  We have a higher metabolic need for thiamine because some medications like Metformin, thiazide diuretics, vaccines, and ACE inhibitors, cause thiamine to be excreted faster, and cause thiamine not to be absorbed in the digestive tract, and cause thiamine to be blocked from entering cells.  

As Celiac people with malabsorption issues, we need to compensate by giving our bodies plenty of thiamine and the other seven B Complex vitamins (the eight B vitamins all are interdependent).  Talk to your doctor about supplementing with a B Complex supplement and 300 -500 mg of thiamine.  

I adopted the AutoImmune Protocol diet and I supplemented with high dose Thiamine (500-1000 mg).  I began to lose weight and got my blood sugar levels under tight control.  I took thiamine and B Complex with every meal.  I was able to quit taking Metformin and the other drugs prescribed to cover the symptoms of other health problems that had arisen from malnutrition.  

Here's some reading you may find interesting....

"The Dramatic Recovery of a Patient with Biguanide-associated Severe Lactic Acidosis Following Thiamine Supplementation"

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5364202/

And...

"Metformin and Thiamine"

https://www.hormonesmatter.com/tag/metformin-vitamin-b1/

I wish you the best on your journey.

 

Wow thank you for this insightful information!! I will look into this, so is the fact that the gluten-free foods don't contain the same nutrients and things the reason they mess with my blood sugar so much??

knitty kitty Grand Master
1 minute ago, Ginger38 said:

Wow thank you for this insightful information!! I will look into this, so is the fact that the gluten-free foods don't contain the same nutrients and things the reason they mess with my blood sugar so much??

 

Yes, thiamine levels in the body can vary every day.  It depends how much thiamine you ate that day.  Maybe one day you eat liver,  full of B vitamins and minerals.  Your body has a bigger supply of vitamins to work with and you feel better.  The foggy brain lifts.  The palpitations stop.  The neuropathy improves.  Blood glucose levels are good.

But later, you have a sandwich with gluten free (vitamin free) bread and some vinegar potatoes chips (no thiamine).  So the thiamine from the liver you ate has been used in your brain to lift the fog, and to regulate your heart beat and other important functions.  Now with a demand for more thiamine to deal with that sandwich, the thiamine levels fall and thiamine deficiency symptoms return.  The blood sugar levels rise because there's not enough thiamine to make enough insulin.  The brain fog returns, the palpitations return.  

Especially when I eat carbohydrates, I make sure I take a thiamine supplement.  

This article explains better than I can....

"Diabetes and Thiamine: A Novel Treatment Opportunity"

http://www.hormonesmatter.com/diabetes-thiamine-treatment-opportunity/

 

Ginger38 Rising Star
46 minutes ago, knitty kitty said:

 

Yes, thiamine levels in the body can vary every day.  It depends how much thiamine you ate that day.  Maybe one day you eat liver,  full of B vitamins and minerals.  Your body has a bigger supply of vitamins to work with and you feel better.  The foggy brain lifts.  The palpitations stop.  The neuropathy improves.  Blood glucose levels are good.

But later, you have a sandwich with gluten free (vitamin free) bread and some vinegar potatoes chips (no thiamine).  So the thiamine from the liver you ate has been used in your brain to lift the fog, and to regulate your heart beat and other important functions.  Now with a demand for more thiamine to deal with that sandwich, the thiamine levels fall and thiamine deficiency symptoms return.  The blood sugar levels rise because there's not enough thiamine to make enough insulin.  The brain fog returns, the palpitations return.  

Especially when I eat carbohydrates, I make sure I take a thiamine supplement.  

This article explains better than I can....

"Diabetes and Thiamine: A Novel Treatment Opportunity"

http://www.hormonesmatter.com/diabetes-thiamine-treatment-opportunity/

 

Wow, thank you for all this. Maybe I've found a solution to feeling so poorly with the sugar issues and gluten-free eating 

Ginger38 Rising Star
2 hours ago, knitty kitty said:

 

Yes, thiamine levels in the body can vary every day.  It depends how much thiamine you ate that day.  Maybe one day you eat liver,  full of B vitamins and minerals.  Your body has a bigger supply of vitamins to work with and you feel better.  The foggy brain lifts.  The palpitations stop.  The neuropathy improves.  Blood glucose levels are good.

But later, you have a sandwich with gluten free (vitamin free) bread and some vinegar potatoes chips (no thiamine).  So the thiamine from the liver you ate has been used in your brain to lift the fog, and to regulate your heart beat and other important functions.  Now with a demand for more thiamine to deal with that sandwich, the thiamine levels fall and thiamine deficiency symptoms return.  The blood sugar levels rise because there's not enough thiamine to make enough insulin.  The brain fog returns, the palpitations return.  

Especially when I eat carbohydrates, I make sure I take a thiamine supplement.  

This article explains better than I can....

"Diabetes and Thiamine: A Novel Treatment Opportunity"

http://www.hormonesmatter.com/diabetes-thiamine-treatment-opportunity/

 

So can you take too many b vitamins or are they safe to take bc they are water soluble? 

knitty kitty Grand Master
(edited)
3 hours ago, Ginger38 said:

So can you take too many b vitamins or are they safe to take bc they are water soluble? 

All eight B vitamins and Vitamin C are water soluble.  Any excess is excreted in urine.  

The Recommended Daily Allowance (RDA) was set up eighty years ago at the beginning of World War Two.  Many of the men joining the army were so malnourished (during the Great Depression and the Dust Bowl years many people didn't have enough to eat), scientists set up the Minimum Amount of vitamins to prevent illness.  Soldiers in WWII had government issued vitamin supplements in their mess kits.

Those amounts have rarely changed over the years, except for folate which was increased in the 1980's due to the high rate of spina bifida.  Scientists are discovering now that higher amounts of the B vitamins may have wonderful benefits.  

Edited by knitty kitty
Typo correction

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Ginger38 Rising Star
17 hours ago, knitty kitty said:

All eight B vitamins and Vitamin C are water soluble.  Any excess is excreted in urine.  

The Recommended Daily Allowance (RDA) was set up eighty years ago at the beginning of World War Two.  Many of the men joining the army were so malnourished (during the Great Depression and the Dust Bowl years many people didn't have enough to eat), scientists set up the Minimum Amount of vitamins to prevent illness.  Soldiers in WWII had government issued vitamin supplements in their mess kits.

Those amounts have rarely changed over the years, except for folate which was increased in the 1980's due to the high rate of spina bifida.  Scientists are discovering now that higher amounts of the B vitamins may have wonderful benefits.  

Well.I have no idea what the RDA is for any of these but I already take a multivitamin, plus 5000 i.u. of vitamin D3, zinc and biotin. I bought some B1, B12 and a super B complex to start taking. So as long as I don't overdose on vitamins lol. I'm honestly up for anything that might help me.

I'm concerned I've destroyed my body and it's starting to turn on me bc I was told even with positive antibodies that I did NOT have celiac and not to worry about it. So for years I've just eaten whatever and even when I tried to stick to a gluten-free diet I cheated bc I didn't think it was a big deal. My heart rate has really been an issue off and on this past year as well as sugar issues. Both are scary bc my dad died suddenly right after his 41st birthday of a massive heart attack 😞

Idk how long the healing process takes to actually feel results like with heart rate and other issues stemming from celiac and/or autoimmune issues...  I'm sure it depends on how long and how much damage there is. I started struggling with my health in 2009 after my daughter was born by c-section. I also had a cholecystectomy a few years later. I went to tons of doctors over the years and no one could figure put what was going on with me other than mental illnesses and pre-diabetes. I finally gave up. My celiac testing was in 2015 I think, but it doesn't really matter bc I was told my tests were negative even though I had positive antibodies and so I've never taken the gluten-free diet seriously.

So I'm hoping its not too late for me and these vitamins will help. I struggle terribly with a BAD gag reflex and swallowing pills. taste unfortunately matters in this area, so vitamins can be a struggle. I have no idea why this is so bad for me but the struggle is real. however I thankfully was able to find the B12 and B complex in soft gels. The b1 is a tablet that tastes bad but hopefully I can get it down. 

knitty kitty Grand Master
3 hours ago, Ginger38 said:

Well.I have no idea what the RDA is for any of these but I already take a multivitamin, plus 5000 i.u. of vitamin D3, zinc and biotin. I bought some B1, B12 and a super B complex to start taking. So as long as I don't overdose on vitamins lol. I'm honestly up for anything that might help me.

I'm concerned I've destroyed my body and it's starting to turn on me bc I was told even with positive antibodies that I did NOT have celiac and not to worry about it. So for years I've just eaten whatever and even when I tried to stick to a gluten-free diet I cheated bc I didn't think it was a big deal. My heart rate has really been an issue off and on this past year as well as sugar issues. Both are scary bc my dad died suddenly right after his 41st birthday of a massive heart attack 😞

Idk how long the healing process takes to actually feel results like with heart rate and other issues stemming from celiac and/or autoimmune issues...  I'm sure it depends on how long and how much damage there is. I started struggling with my health in 2009 after my daughter was born by c-section. I also had a cholecystectomy a few years later. I went to tons of doctors over the years and no one could figure put what was going on with me other than mental illnesses and pre-diabetes. I finally gave up. My celiac testing was in 2015 I think, but it doesn't really matter bc I was told my tests were negative even though I had positive antibodies and so I've never taken the gluten-free diet seriously.

So I'm hoping its not too late for me and these vitamins will help. I struggle terribly with a BAD gag reflex and swallowing pills. taste unfortunately matters in this area, so vitamins can be a struggle. I have no idea why this is so bad for me but the struggle is real. however I thankfully was able to find the B12 and B complex in soft gels. The b1 is a tablet that tastes bad but hopefully I can get it down. 

Ginger,

Your diagnostic journey sounds like mine.  Dismissed with Diabetes and mental health issues for so long, I gave up on doctors.  Thiamine deficiency can affect antibody production, so I didn't produce enough antibodies by the time I was tested.  But my DNA test shows I have two genes for Celiac Disease.    

I hope you can get the thiamine down!  Thiamine deficiency can affect swallowing, so look for improvement there.   There's a form of thiamine called Lipothiamine (available on line at Amazon.com) that is very small pills and are easier to swallow.  There's another called Allithiamine available at the same place that is capsules.  Don't open the capsules.  The taste is very bad.  

I had improvement within minutes to hours of taking thiamine.  The improvement continued for months.  I started with thiamine HCl and found the other formulations later.  Any of them will work.  

Be sure to take some Magnesium, too.  Magnesium helps thiamine work properly.  

I take thiamine throughout the day.  Smaller doses throughout the day get absorbed better and your body gets a constant supply.  I take 100-200 mg Allithiamine at the beginning when I eat a meal or snack, and a magnesium supplement at the end of the meal.  I was taking up to 1500 mg total at my most deficient.  600 mg throughout the day is a good place to start.  

Brave girl! Cheers to you for taking thiamine!  Keep us posted on your results and progress! 

Ginger38 Rising Star
On 11/12/2021 at 12:13 PM, knitty kitty said:

Ginger,

Your diagnostic journey sounds like mine.  Dismissed with Diabetes and mental health issues for so long, I gave up on doctors.  Thiamine deficiency can affect antibody production, so I didn't produce enough antibodies by the time I was tested.  But my DNA test shows I have two genes for Celiac Disease.    

I hope you can get the thiamine down!  Thiamine deficiency can affect swallowing, so look for improvement there.   There's a form of thiamine called Lipothiamine (available on line at Amazon.com) that is very small pills and are easier to swallow.  There's another called Allithiamine available at the same place that is capsules.  Don't open the capsules.  The taste is very bad.  

I had improvement within minutes to hours of taking thiamine.  The improvement continued for months.  I started with thiamine HCl and found the other formulations later.  Any of them will work.  

Be sure to take some Magnesium, too.  Magnesium helps thiamine work properly.  

I take thiamine throughout the day.  Smaller doses throughout the day get absorbed better and your body gets a constant supply.  I take 100-200 mg Allithiamine at the beginning when I eat a meal or snack, and a magnesium supplement at the end of the meal.  I was taking up to 1500 mg total at my most deficient.  600 mg throughout the day is a good place to start.  

Brave girl! Cheers to you for taking thiamine!  Keep us posted on your results and progress! 

Thank you! I will check these out on amazon. What improvements did you notice the most? I'm assuming you kind of diagnosed yourself with a lot of this? No blood tests for thiamine deficiency?

Ginger38 Rising Star
On 11/12/2021 at 12:13 PM, knitty kitty said:

Ginger,

Your diagnostic journey sounds like mine.  Dismissed with Diabetes and mental health issues for so long, I gave up on doctors.  Thiamine deficiency can affect antibody production, so I didn't produce enough antibodies by the time I was tested.  But my DNA test shows I have two genes for Celiac Disease.    

I hope you can get the thiamine down!  Thiamine deficiency can affect swallowing, so look for improvement there.   There's a form of thiamine called Lipothiamine (available on line at Amazon.com) that is very small pills and are easier to swallow.  There's another called Allithiamine available at the same place that is capsules.  Don't open the capsules.  The taste is very bad.  

I had improvement within minutes to hours of taking thiamine.  The improvement continued for months.  I started with thiamine HCl and found the other formulations later.  Any of them will work.  

Be sure to take some Magnesium, too.  Magnesium helps thiamine work properly.  

I take thiamine throughout the day.  Smaller doses throughout the day get absorbed better and your body gets a constant supply.  I take 100-200 mg Allithiamine at the beginning when I eat a meal or snack, and a magnesium supplement at the end of the meal.  I was taking up to 1500 mg total at my most deficient.  600 mg throughout the day is a good place to start.  

Brave girl! Cheers to you for taking thiamine!  Keep us posted on your results and progress! 

I looked at these but they look like they contain more than just B1 so idk.if I am looking for the wring thing or what. I typed in what you Said 

knitty kitty Grand Master

 

4 hours ago, Ginger38 said:

I looked at these but they look like they contain more than just B1 so idk.if I am looking for the wring thing or what. I typed in what you Said 

 

"tetrahydrofurfuryl disulfide" is the special form of Thiamine that I take.   This form of thiamine is called Allithiamine.  Thiamine in this form can get into cells more easily.

This is what I use....

https://www.pureformulas.com/allithiamine-fat-soluble-b1ttfd-50-mg-capsule-250-capsules-by-ecological-formulas.html?accountid=53000524&CAWELAID=1877857991&CATARGETID=530005240008780909&cadevice=t&gclid=EAIaIQobChMIsfemqeWZ9AIVQGxvBB1hiQzNEAQYASABEgJt0_D_BwE

4 hours ago, Ginger38 said:

Thank you! I will check these out on amazon. What improvements did you notice the most? I'm assuming you kind of diagnosed yourself with a lot of this? No blood tests for thiamine deficiency?

Posts about my Celiac journey and references to scientific studies I've found helpful are here...

 

Ginger38 Rising Star
On 11/15/2021 at 2:10 AM, knitty kitty said:

 

 

"tetrahydrofurfuryl disulfide" is the special form of Thiamine that I take.   This form of thiamine is called Allithiamine.  Thiamine in this form can get into cells more easily.

This is what I use....

https://www.pureformulas.com/allithiamine-fat-soluble-b1ttfd-50-mg-capsule-250-capsules-by-ecological-formulas.html?accountid=53000524&CAWELAID=1877857991&CATARGETID=530005240008780909&cadevice=t&gclid=EAIaIQobChMIsfemqeWZ9AIVQGxvBB1hiQzNEAQYASABEgJt0_D_BwE

Posts about my Celiac journey and references to scientific studies I've found helpful are here...

 

How big are these capsules?

knitty kitty Grand Master
(edited)
13 hours ago, Ginger38 said:

How big are these capsules?

They are not as small as my B12 capsules, nor are they as large as my magnesium supplements.  

Here's the Lipothiamine that is a very small slippery tablet....

https://www.pureformulas.com/lipothiamine-60-tablets-by-ecological-formulas.html

 

Edited by knitty kitty
Typo

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      @cristiana Do you have any suggestions for the gummy bear type of candy? Because that is what is getting passed around. Someone told me "you will have to read all labels thoroughly from now on" but to be honest: I don't know what I'm looking for that should or should not be there? And is the notion "gluten free" trustable? And what about "may contain residual gluten"? Is that safe?
    • Kathleen JJ
      @trents The first thought indeed I had was 'thank god it's not cancer' and of course, there are many, many, many worse diagnoses to get. But this doesn't mean it doesn't come as a shock. I read a lot of the time 'the most common symptoms are...' and then all the things he doesn't have, but never do I find a list of less common symptoms (bar @Wheatwackeds examples - and also non of these are present). I get that severe pains can be a symptom, though the fact that they were omnipresent for 10 days (the exact time his viral values were up) and then 6 weeks later 1 episode also when the family was going through a stomach bug, and since then (nor ever before) none, this logically seems more related to a virus then a symptom of Coeliac, as I'd think this would have to be more present on a regular basis? He always has loved gluten-containing food and at that time was rather having less of it (due to the bug and feeling a little under the weather so eating more yoghurt and the likes then cookies) then more of it. It just doesn't sound all that logical. That being said, I comprehend AND accept that things can not always be logical.   I am trying to understand what you are saying about the tolerance - so as long as he eats gluten, he will have some tolerance to it, but when he stops, and say accidentally ingests something, he will react more as the tolerance is lower? It sounds so illogical (hmm, I see a pattern with myself: really looking for logic in a very illogical condition). And how do you interpret the values very 6 months as you maybe don't know there has been an accidental intake?  Do the values ever go down to zero or is it a question of getting them mainly lower and can they never go down to normal rates?   Normally results of his biopsy are coming in on monday, a little chance they come in today. I've been checking my mail every 10 seconds 🤦🏻‍♀️, this will not be a productive working day I fear 🙄. Then we know the values, but we only have an appointment with the specialized pediatrician and dietitian on December 6d (which in Belgium is a children's holiday comparable to Santa Clause). So we'll get the full "introduction" to the disorder and approach then.   I did talk to the pediatrician and gastrointestinal doctor who did the gastroscopy asking their advice about a plan I was having: to wait to start the diet after the holiday season, we will be abroad in a hotel and to start there in this very new world feels quite stressful for us, but even worse: it will start this journey in a lot of negativity. So our plan is to have a "yummy" party after we return from our trip, during Christmas holidays, inviting some of his friends and buying and making a vast array of gluten free goodies and having them sample and score it. This way it feels like a festive thing AND we can immediately find some things (hopefully) he genuinely like.   Both doctors agreed with this approach as this was truly an accidental find and hadn't we tested his blood 2 weeks ago chances were we'd only have found out in a year or 2 so those extra few weeks will not make the difference.   So now I'm gathering information, talking to people to know where there's good stuff...     But what keeps on being quite ununderstandable to me (I hope this will get explained on December 6th) is how it works. So it's auto-immune, meaning gluten trigger an immune response. Is this a black and white thing? Does 1 grain of wheat trigger the same response as a full bowl of spaghetti? And I mean this on a bowel and organs level, not on a symptoms level, as I gather (is this correct?) that not having any symptoms does not mean that his bowel doesn't get attacked?   I know it all could be worse, I truly do, but to be honest, this is the 4th "anvil falling on my head out of a clear blue sky" diagnosis that I got for one of my most loved people. First my mother was diagnosed with presenile dementia without anyone in the family having it. Then my unborn daughter turned out to have a chromosomal defect that made that she could only live inside of me and died when she was born, then my sister turned out to have (a tested non genetic 🤯) form of presenile dementia as well, with me being her only caretaker as my mother passed away a few years ago and she has no family of her own. And now this. And this is absolutely not only the least of this row but of course not even in the same ball park. But for my resilience and bearing capacity this just feels not little as it affects the life of my little boy...    
    • Wheatwacked
      Could be the Ozampic is masking your expected symptoms.  Like an analgesic masks pain.  Qzampic slows digestion to lower the rate glucose enters the intestine to slow its effect on glucose level.  It seems it might also slow down the gluten entry into the intestine, reducing its trigger level for the antibodies.  Ultimately the damage from gluten is the same, just not as fast so the pain is less.  Sourdough bread has less gluten.  Ozampic siows its entry.
    • Wheatwacked
      You can sell it better if the whole family does gluten free.  If he does have Celiac Diease, it is genetic so either you, your spouse, or both have a 40% chance of also having Celiac.  There are over 200 non classic symptoms also caused by celiac disease not often considered by doctors. Joint pain, muscle pain, muscle cramps, osteoporosis, and allergies for starters.  
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