Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

B Vitamin Deficiency Questions


Acacia Voynar

Recommended Posts

Acacia Voynar Explorer

I need help from the extremely knowledgeable and helpful vitamin and mineral experts out there.  All the information I could think to provide is outlined below but I'll start with posting my questions, so they don't get lost in the long post. :)

My questions

  1. Do my symptoms sound like a B vitamin deficiency?
  2. Can I have a B vitamin deficiency when labs show elevated B vitamin levels?  How/why does that happen?
    1. If so, how do I explain this to my doctor, what tests do I ask for to confirm, and what resources can I provide them with to help them understand?
    2. Recommendations for supplements and dosages to treat this?  My quality of life has been too poor for far too long.  At this point I just need to figure out what I can do to get some relief.  *I'm not interested in diet recommendations - I've tried them all with absolutely no relief.* 
  3. Any other thoughts about what is going on here?

I was diagnosed with Celiac over 2 years ago and have been following a strict gluten-free diet ever since. Due to ongoing symptoms, I am currently waiting on a CT scan and capsule endoscopy as my GI doctor believes I either have Refractory Celiac or Crohn's. 

My non-GI symptoms will wax and wane, during what I will assume for now is a "flare up" of either refractory or Crohn's.  My GI symptoms always persist, and I never have any period of time off from them. During these "flare ups" I believe I am experiencing malabsorption as I get an extreme hunger that I cannot satisfy, along with many other symptoms, including the ones outlined below.  

The last few weeks a new type of headache has appeared alongside the symptoms I've outlined below.  It usually starts during a BM, from the pressure, it will shoot a bad pain to my neck which creeps up to the back of my head, starting a headache that I struggle to get rid of for several days.  Any movement worsens the pain and leads to throbbing.  It can also bring on spells of lightheadedness or light dizziness. Sometimes the part of the back of my head that hurts will go numb (like falling asleep) when I rest it again the cushion on the couch or a pillow when sitting up in bed.

When my vitamin labs were last done (in May), my B levels were all elevated.  My doctor had no explanation for it.

  • B12 - 989 (normal range 180-914 pg/mL)
  • Folate RBC - 602 (normal value >280 ng/mL)
  • HCT Folate - Normal (42%, normal range 37-47%)

I do eat fish, poultry, meat and eggs.  I don't take any B vitamin supplements but there are some B vitamins in my daily multi-vitamin.  I do take 12,500IU of vitamin D a day, perscribed by my Dr after low Vitamin D levels in May.  Labs 2 months ago showed vitamin D is now within range.  The B vitamins included in my multi are:

  • Thiamin 3mg
  • Riboflavin 3mg
  • Niacin 20 mg
  • B5 4mg
  • Folate 667mcg DFE
  • B12 500 mcg

My symptoms that I think may be related to B vitamin deficiency: 

  • Headaches & migraines
  • Very tired and weak, fatigue, muscular pain
  • Sleep issues
  • GI issues (bloating, loose stools)
  • Depression, anxiety and irritability 
  • Metal struggles: Terrible brain fog, difficulty concentrating, feeling confused, having a hard time remembering words and forming sentences
  • Neuropathy in my feet
  • Urinary incontinence
  • Random shivers / feeling extra cold
  • Ridges in nails 
  • Occasional balance issues 
Link to comment
Share on other sites

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



Scott Adams Grand Master

The most common nutrient deficiencies associated with celiac disease that may lead to testing for the condition include iron, vitamin D, folate (vitamin B9), vitamin B12, calcium, zinc, and magnesium. This article may be helpful, and hopefully others like @knitty kitty and @Wheatwacked will also chime in here, as they know a lot about the effects of vitamin deficiencies.

 

 

 

Link to comment
Share on other sites
Posterboy Mentor
9 hours ago, Acacia Voynar said:

Can I have a B vitamin deficiency when labs show elevated B vitamin levels?  How/why does that happen?

Acacia,

I saw this topic......after logging to respond to another thread that had a lot of activity in my feed.

Yes you can. It is common in SIBO.

I don't participate as much as I used to because life has taken me in a different direction, but Scott has given you an excellent resource in Knitty Kitty.

I am not going to follow this thread........I just don't have the time to keep up with it right now.....but I wanted to point you in the right direction.

See this article about why this is so....

https://www.merckmanuals.com/professional/gastrointestinal-disorders/malabsorption-syndromes/overview-of-malabsorption#:~:text=A combination of low B12 and high folate,intestinal bacteria use vitamin B12 and synthesize folate.

quoting the article...

 "A combination of low B12 and high folate levels is suggestive of SIBO, because intestinal bacteria use vitamin B12 and synthesize folate."

SIBO commonly happens when you have low stomach acid......it (Low Stomach Acid) is not uncommon in GI diseases......and doctor's don't associate the too......in fact they commonly get it wrong.

Search for the Posterboy on Celiac.com and you will find my story of how I suffered with it for years.....going misdiagnosed.....especially the posterboy blog entries.. ...read them to your heart s contents......that is why I wrote them......to help others when I couldn't always be here....

Knitty Kitty is an excellent resource on this site for B-Vitamin deficiencies and their many faces IE disguises showing up as various diseases like SIBO as mentioned above etc......

Thiamine and Niacinamide (Vitamin B3) is very important in the treatment of SIBO and low stomach acid.

See this article about the SIBO in Celiac disease article...

 https://www.omicsonline.org/open-access/small-intestinal-bacterial-overgrowth-sibo-2161-069X.1000225.php?aid=31428

Here is their summary paragraph about this connection....

quoting....

"Celiac disease: Patients with celiac disease who have persistently symptoms that do not respond to a strict gluten free diet may have underlying SIBO [19]. This is due to the fact that underlying chronic inflammation of the small intestinal mucosa predisposes to bacterial overgrowth and untreated SIBO is one reason why this patient population may have persistent symptoms. In celiac disease, a prevalence rate of SIBO as high as 66% has been reported [2]."

I hope this is helpful, but it is not medical advice.

Good luck on your continued journey.

Posterboy by the grace of God,

 

Link to comment
Share on other sites
Wheatwacked Veteran

Hi Acacia.  I'll try to follow your outline.  My first questions are  do you have results for a homocysteine test and what is your vitamin D level?  Any medications? BP, cholesterol, diabetes, etc.

You know it gets confusing and complicated so I'll say what I think will help and explain later why I think so.  I've been struggling with many of your same issues.  Never sleep more than three hours without waking up for one reason or another. Driving me nuts. These are the ones that made the biggest difference in my life.  Many symptoms can be caused by multiple deficiencies, each working in its own way.

     Vitamin D.  I have been taking 10,000 IU a day since 2015.  In 2018 I was at 47 ng/ml.  By 2020 made it to 86 mg/ml and it stayed at 80 until this summer when I added riding a mower 2 hours a week, shirtless, no sunscreen and in September is was 97 mg/ml.  Normal is 29-150.  Doctor is ok with that.  29 only prevents rickets. At 12,500 IU you should eventually peak out at 90 mg/dl.

      Phosphitydyl choline supplement.  You should increase intake to 1000 mg choline up to 3500 mg a day.  You will see improvement in days.  90% of the western world eat less than the Adequate Intake of 500 mg choline. It is needed to process fat. Difficiency is a known cause of fatty liver disease. Makes up 80% ot the mitochondria membrane where glucose is turned into ATP energy; makes acetylcholine a brain neurotransmitter, choline is the major salt in bile so deficiency symptoms are often misdiagnosed to remove gallbladder Choline Fact Sheet for Health Professionals

       B1 Thiamin.  Essential to metabolize carbs. The field test the WHO uses is to supplement large amounts of thiamin.  100 to 300 mg a day. Posistive results will be apparent in days then it is time to increase for quickest results.  Benfothiamin is a fat soluable synthetic form that may work faster.

Quote

 

 Thiamin Fact Sheet for Health Professionals: In its early stage, thiamin deficiency can cause weight loss and anorexia, confusion, short-term memory loss, and other mental signs and symptoms; muscle weakness; and cardiovascular symptoms (such as an enlarged heart).

The most common effect of thiamin deficiency is beriberi, which is characterized mainly by peripheral neuropathy and wasting. People with this condition have impaired sensory, motor, and reflex functions. In rare cases, beriberi causes congestive heart failure that leads to edema in the lower limbs and, occasionally, death.  Administration of supplemental thiamin, often parenterally, quickly cures beriberi 

 

     IODINE:  Iodine ended my toe cramps that I got after sleeping two hours.  My foot neurapathies is a whole different saga but they're almost gone.  Iodine deficiency has multiple adverse effects on growth and development and is the most common cause of preventable intellectual disability in the world. Iodine deficiency disorders result from inadequate thyroid hormone production secondary to insufficient iodine.  Slow healing, hypothyroid, hyperthyroid, muscle tone, brain fog.  The US intake of iodine is half today what it was in 1970.  Prescriptions of Thyroxine is double.  Cancer is double. Coincidence?  Japanese on traditional diet have half the breast cancer, nice hair, look younger and their intake of iodine starts at the what the US calls the Safe Upper Limit.  Japanese eating a western diet though are as sick as we are.  Some people prefer Lugol's Solution instead of kelp.  I learned to like it pretty quickly.  Rehydrate cut into linguini strips and eat like gummy worms with my coffee, or throw in salad.

What I take:

  • 10,000 IU vitamin D to control autoimmune.
  • 500 mg Thiamine - neurologic symptoms
  • 500 mg Nicotinic Acid - increase capillary blood flow
  • 500 mg Pantothenic Acid - creates energy from glucose Krebs Cycle
  • 1000 mcg B12 - creates hemoglobin for oxygen transport
  • 500 mg Taurine - essential amino acid, a powerful antioxident that we make indogenously so it is officially labeled "Conditional Essential" as Choline used to be, but not enough when sickness increases inflammation. reduces Reactivite Oxygen Species (ROS are are free radicals.).
  • 840 mg Phosphatidly Choline x 3 - essential for fat digestion, gall bladder, liver, brain fog, cell membranes, prevent congenital spinal defects (along with B6, B12, folate, Taurine.
  • Iodine - muscle tone, testosterone, hyper and hypo thyroid, slow healing.  I eat Nori and Kelp Kelp 13 mg dried kelp rehydrated weighs 39 mg.  
  1. Do my symptoms sound like a B vitamin deficiency?
    1. There are many different B vitamins.  B12, unlike the other B s is almost exclusively from animal sourced foods.  Vegans have a tendency to be deficient.  You are not.  B12 over 900 pg/ml may indicate Liver or kidney problems, and that matches some of your symptoms.  Not that it causes, but it indicates a problem.  
  2. Can I have a B vitamin deficiency when labs show elevated B vitamin levels?  How/why does that happen?  Folic acid is the synthetic form of Folate.  There is no upper limit on Folate, but the Tolerable Safe Upper Limit on Folic Acid is 1000 mg.  consuming too much folic acid from fortified foods and supplements can cause unmetabolized folic acid (UMFA) to accumulate in your blood. This doesn’t happen when you eat high folate foods. The MTHFR gene provides instructions for your body to make the MTHFR protein, which helps your body process folate. MTHFR gene  The estimated probability of being diagnosed with prostate cancer over a 10-year period was 9.7%  in the folic acid group and 3.3% in the placebo group. In contrast, baseline dietary folate intake and plasma folate in nonmultivitamin users were inversely associated with risk of prostate cancer. 

    MTHFR stands for methylenetetrahydrofolate reductase, is a genetic mutation, and approximately 30% of the population worldwide has it. The mutation affects the ability of the body to turn vitamin B12 and folate into forms the body can utilize.

  3. If so, how do I explain this to my doctor, what tests do I ask for to confirm, and what resources can I provide them with to help them understand?  I don't know.  I've been stumbling around this since 2005 when my wife died of ovarian cancer.  Much of what I've found true and helpful is in direct contradiction to what I was led to believe.  Some days I think it is a conspiracy to bring population growth under control. Ha Ha!
  4. Recommendations for supplements and dosages to treat this?  My quality of life has been too poor for far too long.  At this point I just need to figure out what I can do to get some relief.  *I'm not interested in diet recommendations - I've tried them all with absolutely no relief.*   The particular diet is not as important as the vitamins and minerals missing.  Rather than restrict salt (DASH) increasing potassium foods so that Potassium:Sodium ratio is greater than 2:1.  The DV for potassium is 4700 mg for everyone, yet average intake is only 2300 mg.
  5. Any other thoughts about what is going on here?  Stop the multi.  Start the Choline, Thiamin, Iodine. Continue the D. Add the others.
Link to comment
Share on other sites
Wheatwacked Veteran
On 10/27/2023 at 11:00 PM, Posterboy said:

 "A combination of low B12 and high folate levels is suggestive of SIBO, because intestinal bacteria use vitamin B12 and synthesize folate."

Acacia's problem is high B12 and high folate.  While that does not rule out SIBO, something else is going on.

Link to comment
Share on other sites
Acacia Voynar Explorer
On 10/29/2023 at 7:15 AM, Wheatwacked said:

Acacia's problem is high B12 and high folate.  While that does not rule out SIBO, something else is going on.

I have taken 2 SIBO tests, both were negative.

Link to comment
Share on other sites
Acacia Voynar Explorer
On 10/28/2023 at 2:26 PM, Wheatwacked said:

Hi Acacia.  I'll try to follow your outline.  My first questions are do you have results for a homocysteine test and what is your vitamin D level?  Any medications? BP, cholesterol, diabetes, etc.

I want to start by saying how incredibly sorry I am to hear about the loss of your wife.

  • I haven't had a homocysteine test.. what is that?
  • In August my Vitamin D level was 65 ng/ml (with the 12,500 IU supplementation) 
  • I recently started steroids for treatment of potential Refractory.  I've been taking budesonide for 6 weeks now.  I take digestive enzymes and hcl with every meal (both OTC).

 

On 10/28/2023 at 2:26 PM, Wheatwacked said:

Stop the multi.  Start the Choline, Thiamin, Iodine. Continue the D. Add the others.

Can you please help me to understand why you suggest stopping the multi?

Thank you so much for your time and all of the information! 

Link to comment
Share on other sites

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



knitty kitty Grand Master

@Acacia Voynar,

Yes, your symptoms sound like they are related to vitamin and mineral deficiencies.

Don't be taking multivitamins, nor vitamin and mineral supplements in the eight to twelve weeks prior to having blood tests done to check for nutritional deficiencies.   Acacia, your blood tests probably reflect the multivitamin you've been taking.  Vitamins can enter the bloodstream directly from our digestive tract.  They circulate throughout the body, replenishing every cell.  Excesses are filtered out through the kidneys.  By waiting several weeks after stopping supplementation, more accurate measurements of what your body is absorbing would be made.  

There are some tests that check how well a vitamin is being utilized in the body.  They check for the end products after a vitamin has been used.  One such test is the Erythrocyte Transketolase test that sees how well Thiamine is being utilized.  

We do need to talk about diet because, ideally, that is where vitamins and minerals should come from.  

Gluten based flours are required to be enriched with vitamins and minerals.  Removing gluten from the diet also removes the vitamin and mineral supplements added by the manufacturers.  Gluten free facsimile foods are not required to be enriched with vitamins and minerals.  So if you are substituting gluten free facsimile foods filled with carbohydrates, proteins, and fats without the corresponding vitamins and minerals needed to process them into energy, you are doing yourself a great disservice.

A diet that includes fresh meat, fruits, and vegetables is beneficial because these foods contain micronutrients and beneficial natural compounds we are only beginning to understand.  I highly recommend the Autoimmune Protocol Diet, a Paleo diet.  

Excluding certain inflammatory foods like dairy, high plant lectins (grains, pseudo grains, grasses), and nightshades (which contain glycoalkaloids that promote leaky gut syndrome) is needed in order to reduce inflammation, repair gut permeability, and promote healing.  

At the same time, providing essential vitamins and minerals is needed for healing.

Vitamin D (the form D 3 is better assimilated than D 2, the synthetic form often prescribed by doctors) will help regulate the immune system at levels above 78 nmol/L.  

Replenishing my Thiamine insufficiency made a major improvement in my journey.  Thiamine Vitamin B 1 is the B vitamin that becomes depleted the quickest.  Symptoms of Thiamine insufficiency seem to wax and wane due to dietary consumption of foods high in Thiamine or high in carbohydrates.  

Thiamine needs magnesium to make important enzymes.  If there is a magnesium deficiency, Thiamine won't be able to work resulting in a functional thiamine deficiency.  So many thiamine deficiency symptoms overlap with magnesium deficiency symptoms. 

These symptoms include:

Headaches & migraines

Feeling fatigue, muscle weakness, and muscular pain or cramping

Sleep issues (both insomnia and sleeping too much)

GI issues (bloating, loose stools or constipation) aka gastrointestinal beriberi

Depression, anxiety and irritability 

Mental struggles: Terrible brain fog, difficulty concentrating, feeling confused, having a hard time remembering words and forming sentences

Neuropathy in my feet

Urinary incontinence

Random shivers / feeling extra cold

Ridges in nails 

Occasional balance issues 

 

The cognitive and neurological symptoms are especially worrisome.  Thiamine deficiency can affect the brain, causing white spots on MRIs.  Thiamine deficiency needs to be corrected as quickly as possible so no permanent damage is done.  

I supplemented with high dose Thiamine, 500 - 2000 mg of Thiamine Hydrochloride.  Later I added Allithiamine and Benfotiamine, forms of Thiamine shown to get into cells easily and improve deficiency symptoms quickly. 

I also took a B 100 Complex to ensure I was getting sufficient B vitamins.  The eight B vitamins work together, depending on each other for enzymes and energy to work properly.  

Magnesium Glycinate is a well absorbed form of magnesium supplements.  Magnesium and calcium work together, so a calcium supplement is a good idea.

I hope this helps.  

Thiamine deficiency disorders: a clinical perspective

https://pubmed.ncbi.nlm.nih.gov/33305487/

Edited by knitty kitty
Add link
Link to comment
Share on other sites
Wheatwacked Veteran

   

On 10/27/2023 at 12:56 PM, Acacia Voynar said:

Folate RBC - 602 (normal value >280 ng/mL)

On 10/28/2023 at 5:26 PM, Wheatwacked said:

consuming too much folic acid from fortified foods and supplements can cause unmetabolized folic acid (UMFA) to accumulate in your blood. This doesn’t happen when you eat high folate foods

 High level of RBC folate is associated with an increased risk of cardiovascular mortality among hypertensive patients with elevated homocysteine while serum folate has no such effects.  Serum and Red Blood Cell Folate With All-Cause and Cardiovascular Mortality

All of the added "folate" is folic acid.  In the US folic acid and folate are allowed to be used interchangeably in nutrition labels.  Plus, there is just enough in that multi to make you feel like you are doing something, but not enough to really make a difference, except for the bottom line of the company.

        Linus Pauling Institute: High Homocysteine  High homocysteine concentration in the blood is associated with an increased risk of cardiovascular disease (CVD). Therefore, homocysteine-lowering strategies are being investigated for their ability to reduce the risk of CVD. Nutrients involved in the metabolism of homocysteine include folate, vitamin B12, vitamin B6, riboflavin, and choline. Choline is a precursor to betaine, a compound that participates in a reaction that converts homocysteine to methionine. ... Two preliminary randomized controlled trials indicated that supplementation with large doses of choline or betaine decreased plasma homocysteine levels in healthy men and CVD patients."

          If you have more than 50 mcmol/L, homocysteine may damage the lining of your arteries. High levels of homocysteine can also lead to blood clots or blood vessel blockages.

         Choline deficiency in mice and humans is associated with increased plasma homocysteine concentration  Elevated concentrations of homocysteine in blood may be an independent risk factor for the development of atherosclerosis. Elevated homocysteine concentrations can be caused by decreased methylation of homocysteine to form methionine, as occurs in folate deficiency. A parallel pathway exists for methylation of homocysteine, in which choline, by way of betaine, is the methyl donor.

Link to comment
Share on other sites
Wheatwacked Veteran
23 hours ago, Acacia Voynar said:

budesonide

Is it helping?  The advantage of budesonide is that it doesn't seem to cause Secondary Adrenal Insufficiency when used long term but has low bioavailability and seems expensive.  For short term prednisolone is more effective because it doesn't have to be processed through the liver first and is cheap.  Pharmaceuticlal companies don't like cheap. I do.

 I started on 30 mg a day back in 2012 because my fibromyalgia was so bad I could'nt get out of bed.  It started working in hours.  Unfortunately I was on it for two years before starting Gluten Free.  Then I didn't need it any more for the pain but I need 5-10 mg a day as a maintenance dose because I developed Secondary Adrenal Insufficiency.

Link to comment
Share on other sites
Acacia Voynar Explorer
30 minutes ago, Wheatwacked said:

Is it helping?  The advantage of budesonide is that it doesn't seem to cause Secondary Adrenal Insufficiency when used long term but has low bioavailability and seems expensive.  For short term prednisolone is more effective because it doesn't have to be processed through the liver first and is cheap.  Pharmaceuticlal companies don't like cheap. I do.

 I started on 30 mg a day back in 2012 because my fibromyalgia was so bad I could'nt get out of bed.  It started working in hours.  Unfortunately I was on it for two years before starting Gluten Free.  Then I didn't need it any more for the pain but I need 5-10 mg a day as a maintenance dose because I developed Secondary Adrenal Insufficiency.

It hasn't made any noticeable difference with my GI symptoms. It's interesting you say that about your fibromyalgia... it was prescribed for my potential refractory celiac but the one benefit I did notice at first, was an improvement in my fibro symptoms.  The last few weeks it hasn't been as effective, and I'm starting to return to how I felt before starting the medication.  My insurance thankfully does cover it, so I am okay with the small co-pay.  I am only taking a 6mg daily dose.

Link to comment
Share on other sites
Acacia Voynar Explorer
1 hour ago, Wheatwacked said:

   

 High level of RBC folate is associated with an increased risk of cardiovascular mortality among hypertensive patients with elevated homocysteine while serum folate has no such effects.  Serum and Red Blood Cell Folate With All-Cause and Cardiovascular Mortality

All of the added "folate" is folic acid.  In the US folic acid and folate are allowed to be used interchangeably in nutrition labels.  Plus, there is just enough in that multi to make you feel like you are doing something, but not enough to really make a difference, except for the bottom line of the company.

        Linus Pauling Institute: High Homocysteine  High homocysteine concentration in the blood is associated with an increased risk of cardiovascular disease (CVD). Therefore, homocysteine-lowering strategies are being investigated for their ability to reduce the risk of CVD. Nutrients involved in the metabolism of homocysteine include folate, vitamin B12, vitamin B6, riboflavin, and choline. Choline is a precursor to betaine, a compound that participates in a reaction that converts homocysteine to methionine. ... Two preliminary randomized controlled trials indicated that supplementation with large doses of choline or betaine decreased plasma homocysteine levels in healthy men and CVD patients."

          If you have more than 50 mcmol/L, homocysteine may damage the lining of your arteries. High levels of homocysteine can also lead to blood clots or blood vessel blockages.

         Choline deficiency in mice and humans is associated with increased plasma homocysteine concentration  Elevated concentrations of homocysteine in blood may be an independent risk factor for the development of atherosclerosis. Elevated homocysteine concentrations can be caused by decreased methylation of homocysteine to form methionine, as occurs in folate deficiency. A parallel pathway exists for methylation of homocysteine, in which choline, by way of betaine, is the methyl donor.

Thank you!  This is all a lot of information and I'm feeling a bit overwhelmed but I will digest what you and @knitty kitty have suggested and start on some of the recommended supplements.  I'll keep you posted on my progress. :)

Link to comment
Share on other sites
Wheatwacked Veteran

Vitamin D deficiency

Daily oral dosing of vitamin D3 using 5000 TO 50,000 international units a day in long-term hospitalized patients: Insights from a seven year experience   During this time, we have admitted over 4700 patients, the vast majority of whom agreed to supplementation with either 5000 or 10,000 IUs/day. Due to disease concerns, a few agreed to larger amounts, ranging from 20,000 to 50,000 IUs/day. There have been no cases of vitamin D3 induced hypercalcemia or any adverse events attributable to vitamin D3 supplementation in any patient. Three patients with psoriasis showed marked clinical improvement in their skin using 20,000 to 50,000 IUs/day. Analysis of 777 recently tested patients (new and long-term) not on D3 revealed 28.7% with 25-hydroxyvitaminD3 (25OHD3) blood levels < 20 ng/ml, 64.1% < 30 ng/ml, a mean 25OHD3 level of 27.1 ng/ml, with a range from 4.9 to 74.8 ng/ml.

Quote

Surge of information on benefits of vitamin D

According to McCarthy, his target range is based upon several factors:

  • A lifeguard study that found vitamin D levels in the 70 ng/mL range up to 100 ng/mL (nature’s level) were associated with no adverse effects;
  • Data in patients with breast cancer showing a reduction in the incidence of new cancer with postulated 0 point at 80 ng/mL;
  • Colon cancer data showing a reduction in the incidence of new cancer (linear) with postulated 0 point at 75 ng/mL;
  • More than 200 polymorphisms of the vitamin D receptor requiring higher D levels to attain same desired outcomes;
  • When a patient misses dosing, an attained level of 80 ng/mL gives the patient an additional month of good levels off of vitamin D.

You can calculate your daily intake from the National Nutrition Database Download FoodData Central Data.  There are websites that you can use.  I made my own spreadsheet based on SR28.  Here is what it looks like to give you an idea.  Nutrient Log

 

  • 10,000 IU vitamin D to control autoimmune.
  • 500 mg Thiamine - neurologic symptoms
  • 500 mg Nicotinic Acid - increase capillary blood flow
  • 500 mg Pantothenic Acid - creates energy from glucose Krebs Cycle
  • 1000 mcg B12 - creates hemoglobin for oxygen transport
  • 500 mg Taurine - essential amino acid, a powerful antioxident that we make indogenously so it is officially labeled "Conditional Essential" as Choline used to be, but not enough when sickness increases inflammation. reduces Reactivite Oxygen Species (ROS are are free radicals.).
  • 840 mg Phosphatidly Choline x 3 - essential for fat digestion, gall bladder, liver, brain fog, cell membranes, prevent congenital spinal defects (along with B6, B12, folate, Taurine.
  • Iodine - muscle tone, testosterone, hyper and hypo thyroid, slow healing.  I eat Nori and Kelp

 

Link to comment
Share on other sites
Acacia Voynar Explorer
13 hours ago, knitty kitty said:

@Acacia Voynar,

Yes, your symptoms sound like they are related to vitamin and mineral deficiencies.

Don't be taking multivitamins, nor vitamin and mineral supplements in the eight to twelve weeks prior to having blood tests done to check for nutritional deficiencies.   Acacia, your blood tests probably reflect the multivitamin you've been taking.  Vitamins can enter the bloodstream directly from our digestive tract.  They circulate throughout the body, replenishing every cell.  Excesses are filtered out through the kidneys.  By waiting several weeks after stopping supplementation, more accurate measurements of what your body is absorbing would be made.  

There are some tests that check how well a vitamin is being utilized in the body.  They check for the end products after a vitamin has been used.  One such test is the Erythrocyte Transketolase test that sees how well Thiamine is being utilized.  

We do need to talk about diet because, ideally, that is where vitamins and minerals should come from.  

Gluten based flours are required to be enriched with vitamins and minerals.  Removing gluten from the diet also removes the vitamin and mineral supplements added by the manufacturers.  Gluten free facsimile foods are not required to be enriched with vitamins and minerals.  So if you are substituting gluten free facsimile foods filled with carbohydrates, proteins, and fats without the corresponding vitamins and minerals needed to process them into energy, you are doing yourself a great disservice.

A diet that includes fresh meat, fruits, and vegetables is beneficial because these foods contain micronutrients and beneficial natural compounds we are only beginning to understand.  I highly recommend the Autoimmune Protocol Diet, a Paleo diet.  

Excluding certain inflammatory foods like dairy, high plant lectins (grains, pseudo grains, grasses), and nightshades (which contain glycoalkaloids that promote leaky gut syndrome) is needed in order to reduce inflammation, repair gut permeability, and promote healing.  

At the same time, providing essential vitamins and minerals is needed for healing.

Vitamin D (the form D 3 is better assimilated than D 2, the synthetic form often prescribed by doctors) will help regulate the immune system at levels above 78 nmol/L.  

Replenishing my Thiamine insufficiency made a major improvement in my journey.  Thiamine Vitamin B 1 is the B vitamin that becomes depleted the quickest.  Symptoms of Thiamine insufficiency seem to wax and wane due to dietary consumption of foods high in Thiamine or high in carbohydrates.  

Thiamine needs magnesium to make important enzymes.  If there is a magnesium deficiency, Thiamine won't be able to work resulting in a functional thiamine deficiency.  So many thiamine deficiency symptoms overlap with magnesium deficiency symptoms. 

These symptoms include:

Headaches & migraines

Feeling fatigue, muscle weakness, and muscular pain or cramping

Sleep issues (both insomnia and sleeping too much)

GI issues (bloating, loose stools or constipation) aka gastrointestinal beriberi

Depression, anxiety and irritability 

Mental struggles: Terrible brain fog, difficulty concentrating, feeling confused, having a hard time remembering words and forming sentences

Neuropathy in my feet

Urinary incontinence

Random shivers / feeling extra cold

Ridges in nails 

Occasional balance issues 

 

The cognitive and neurological symptoms are especially worrisome.  Thiamine deficiency can affect the brain, causing white spots on MRIs.  Thiamine deficiency needs to be corrected as quickly as possible so no permanent damage is done.  

I supplemented with high dose Thiamine, 500 - 2000 mg of Thiamine Hydrochloride.  Later I added Allithiamine and Benfotiamine, forms of Thiamine shown to get into cells easily and improve deficiency symptoms quickly. 

I also took a B 100 Complex to ensure I was getting sufficient B vitamins.  The eight B vitamins work together, depending on each other for enzymes and energy to work properly.  

Magnesium Glycinate is a well absorbed form of magnesium supplements.  Magnesium and calcium work together, so a calcium supplement is a good idea.

I hope this helps.  

Thiamine deficiency disorders: a clinical perspective

https://pubmed.ncbi.nlm.nih.gov/33305487/

A BIG thank you for ALL of that information. I appreciate you taking time out of your day to help me. I'm going to digest what you have told me (I am feeling a bit overwhelmed by all the information) and start taking some action.  One more question - are you familiar with any nutritional deficiencies that cause amenorrhea? 

Link to comment
Share on other sites
Wheatwacked Veteran

Yeah, I actually was started on predisone for a bout of gout, but stayed on it because it worked for the other pain and I got be functioning.

 

Link to comment
Share on other sites
Wheatwacked Veteran

Diets that are very low in fat can raise your risk of amenorrhea. The choline will help in fat digestion.  Low choline intake often are the cause of  gall bladder problems.

There is so much contradictory information it does get overwhelming.  And to boot they always scare you with the fear of hypervitaminosis, rare compared to hypovitaminosis in our culture; and recommend talking to your doctor first.  Doctors know less than you do.  They are taught medication, not nutrition.

One of my favorites is vitmanin D.  The scare of skin cancer has everyone covering up, and calcification from vitamin D.  Yet there are only about a million cases of skin cancer a year and 42 million people with autoimmune diseases.

Iodine intake in the US is half what it was in 1970, prescriptions of thyroxine and cases of cancers has doubled.  On the other hand, Japanese on traditional diet, high in iodine, above the US Safe Tolerable limit, have half as much breast cancer.

Link to comment
Share on other sites
knitty kitty Grand Master
39 minutes ago, Acacia Voynar said:

A BIG thank you for ALL of that information. I appreciate you taking time out of your day to help me. I'm going to digest what you have told me (I am feeling a bit overwhelmed by all the information) and start taking some action.  One more question - are you familiar with any nutritional deficiencies that cause amenorrhea? 

Yes, Thiamine deficiency will cause amenorrhea.  Vitamin D deficiency will contribute to amenorrhea.

High dose Thiamine supplementation has been shown to improve fibromyalgia.

 

High-dose thiamine improves the symptoms of fibromyalgia

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3669831/

And...

Hiding in Plain Sight: Modern Thiamine Deficiency

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

 

Edited by knitty kitty
Add link
Link to comment
Share on other sites
plumbago Experienced

Excess of folate and b6 can cause peripheral neuropathy.

Link to comment
Share on other sites
  • 2 weeks later...
oliver2023 Apprentice
On 10/30/2023 at 6:19 PM, knitty kitty said:

@Acacia Voynar,

Yes, your symptoms sound like they are related to vitamin and mineral deficiencies.

Don't be taking multivitamins, nor vitamin and mineral supplements in the eight to twelve weeks prior to having blood tests done to check for nutritional deficiencies.   Acacia, your blood tests probably reflect the multivitamin you've been taking.  Vitamins can enter the bloodstream directly from our digestive tract.  They circulate throughout the body, replenishing every cell.  Excesses are filtered out through the kidneys.  By waiting several weeks after stopping supplementation, more accurate measurements of what your body is absorbing would be made.  

There are some tests that check how well a vitamin is being utilized in the body.  They check for the end products after a vitamin has been used.  One such test is the Erythrocyte Transketolase test that sees how well Thiamine is being utilized.  

We do need to talk about diet because, ideally, that is where vitamins and minerals should come from.  

Gluten based flours are required to be enriched with vitamins and minerals.  Removing gluten from the diet also removes the vitamin and mineral supplements added by the manufacturers.  Gluten free facsimile foods are not required to be enriched with vitamins and minerals.  So if you are substituting gluten free facsimile foods filled with carbohydrates, proteins, and fats without the corresponding vitamins and minerals needed to process them into energy, you are doing yourself a great disservice.

A diet that includes fresh meat, fruits, and vegetables is beneficial because these foods contain micronutrients and beneficial natural compounds we are only beginning to understand.  I highly recommend the Autoimmune Protocol Diet, a Paleo diet.  

Excluding certain inflammatory foods like dairy, high plant lectins (grains, pseudo grains, grasses), and nightshades (which contain glycoalkaloids that promote leaky gut syndrome) is needed in order to reduce inflammation, repair gut permeability, and promote healing.  

At the same time, providing essential vitamins and minerals is needed for healing.

Vitamin D (the form D 3 is better assimilated than D 2, the synthetic form often prescribed by doctors) will help regulate the immune system at levels above 78 nmol/L.  

Replenishing my Thiamine insufficiency made a major improvement in my journey.  Thiamine Vitamin B 1 is the B vitamin that becomes depleted the quickest.  Symptoms of Thiamine insufficiency seem to wax and wane due to dietary consumption of foods high in Thiamine or high in carbohydrates.  

Thiamine needs magnesium to make important enzymes.  If there is a magnesium deficiency, Thiamine won't be able to work resulting in a functional thiamine deficiency.  So many thiamine deficiency symptoms overlap with magnesium deficiency symptoms. 

These symptoms include:

Headaches & migraines

Feeling fatigue, muscle weakness, and muscular pain or cramping

Sleep issues (both insomnia and sleeping too much)

GI issues (bloating, loose stools or constipation) aka gastrointestinal beriberi

Depression, anxiety and irritability 

Mental struggles: Terrible brain fog, difficulty concentrating, feeling confused, having a hard time remembering words and forming sentences

Neuropathy in my feet

Urinary incontinence

Random shivers / feeling extra cold

Ridges in nails 

Occasional balance issues 

 

The cognitive and neurological symptoms are especially worrisome.  Thiamine deficiency can affect the brain, causing white spots on MRIs.  Thiamine deficiency needs to be corrected as quickly as possible so no permanent damage is done.  

I supplemented with high dose Thiamine, 500 - 2000 mg of Thiamine Hydrochloride.  Later I added Allithiamine and Benfotiamine, forms of Thiamine shown to get into cells easily and improve deficiency symptoms quickly. 

I also took a B 100 Complex to ensure I was getting sufficient B vitamins.  The eight B vitamins work together, depending on each other for enzymes and energy to work properly.  

Magnesium Glycinate is a well absorbed form of magnesium supplements.  Magnesium and calcium work together, so a calcium supplement is a good idea.

I hope this helps.  

Thiamine deficiency disorders: a clinical perspective

https://pubmed.ncbi.nlm.nih.gov/33305487/

Hello, what tests can measure magnesium and calcium accurately?

Link to comment
Share on other sites
knitty kitty Grand Master

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now

  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      125,735
    • Most Online (within 30 mins)
      7,748

    SashaLondon
    Newest Member
    SashaLondon
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.8k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • jmiller93
      I’m have a vitamin D deficiency. I’m still waiting on a qualitative fat test to see if I have malabsorption. 
    • knitty kitty
      @jmiller93, Some of us are seronegative and don't test positive on tTg IgA tests.  Anemia, diabetes, and Thiamine deficiency can cause false negatives on Celiac panels.  Have you been checked for nutritional deficiencies?  Iron? Thiamine?  Vitamin B12?  Vitamin D?  Only one Celiac markers is needed to develop the active disease.   I agree a gluten free diet trial is worth a try.
    • knitty kitty
      @HWB, Have you been checked for SIBO?  Small Intestinal Bacterial Overgrowth will cause constipation and chemically breath.   The best way to get rid of SIBO is to go on a ketogenic/Paleo diet, like the Autoimmune Protocol Diet.  It starves out the carbohydrate loving bacteria and allows good bacteria to repopulate the small intestine.   The SIBO bacteria can communicate with the brain along the gut-brain axis, making you crave carbs, and in return, the SIBO bacteria can mess with your immune system by lowering inflammation and producing endorphins.  So, it's no wonder you feel better eating sugar.   I took high dose (500-1000 mg/day) Benfotiamine (Thiamine) which promotes intestinal healing and helps keep bacterial in check.  Thiamine and Benfotiamine are safe and nontoxic even in high doses.  High doses (500-1000 mg) every day are required to get results.  The body responds differently to high doses.  Got rid of my SIBO like this.  It was tough, but Celiac makes you stronger.
    • Wheatwacked
      Try whole milk yogurt.  I eat Stoneyfield vanilla.  Add fruit if you like.  Cultured Pasteurized Organic Whole Milk, Pectin, Vitamin D3. Live Active Cultures S. thermophilus, L. bulgaricus, Bifidobacterium BB-12®, L. acidophilus, L. paracasei and L. rhamnosus. Looking at the NO Fat Greek Yogurt, consider that to give the mouth feel of real yogurt ahd Manufacterers of no fat yogurt add various processed ingrediant that many Celiacs have digestive issues with such as gums.  Consider it processed food.  Fat is an important factor in our appestat to tell us we've eaten enough.  Remove fat and we eat more.  Compared to whole milk yogurt Chobani no fat greek yogurt has a cardboard mouth feel. Chobani no fat greek: Cultured Nonfat Milk, Cane Sugar, Black Cherries, Water, Fruit Pectin, Guar Gum, Natural Flavors, Cherry Juice Concentrate, Locust Bean Gum, Lemon Juice Concentrate. 6 Live and Active Cultures: S. Thermophilus, L. Bulgaricus, L. Acidophilus, Bifidus, L. Casei, and L. Rhamnosus Funny that since recommending low fat diets in the 1970's the US population has gone from 15% to 50% obese.
    • sh00148
      Just had my daughter diagnosed and am currently awaiting blood test results for my son. As well as many bowel issues, mostly loose stools with mucus and lots of gassy moments sometimes leading to leaning stool, he has recently soiled himself in his sleep twice. He has been toilet trained for a long time, but is not waking up with the poo. It’s not just a little, it’s a lot.    We have had to make an appointment re his blood test results next week so will find out if it is coeliac too but I’m just wondering whether anyone else has had this? Ive read online that it could mean he’s constipated, but he poos all the time and it’s often soft, never hard. 
×
×
  • Create New...