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Kate333

Weight Loss/Muscle Wasting on gluten-free Diet

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Did anyone here suffer noticeable weight loss either BEFORE or esp. AFTER your celiac disease diagnosis and beginning gluten-free diet?  That has become a BIG issue for me, despite being strictly gluten-free for 6 months.  Yesterday, I had 2 small sirloin steaks, potatoes and veggies yet STILL LOST a pound!

I am really struggling with this and esp. the muscle wasting/hunger...I know I have become rather obsessed with diet (paranoia about G exposure, esp. CC, almost makes scared to eat most foods). 😡  I used to LOVE eating before celiac disease and IBS/SIBO? ...now it's just a damn "chore".  I am afraid this problem has given me serious anorexia.  I look like a skeleton compared to my body pre-celiac disease diagnosis.....yet feel so helpless to prevent hunger/muscle wasting...😪.Do I have to wait until my gut heals BEFORE I can regain/normalize weight??  

Thanks for any comments...

 

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Kate333,

Unintentional weight loss is a classic symptom of Thiamine deficiency.  Muscle wasting is a classic symptom of Thiamine deficiency.

Your body needs thiamine to turn carbohydrates into energy.  Without enough thiamine, your body burns fat and muscle as energy sources because this route doesn't require thiamine.

Please read this article....and the informative comments after it....

https://www.hormonesmatter.com/connecting-symptom-dots-discovering-thiamine-deficiency/

Celiac Disease causes malabsorption which results in malnutrition.  Your damaged intestines are not absorbing enough Thiamine.  When you're thiamine deficient, Thiamine transporters on your body's cells quit working.  In order to get them working again, you have to take high doses of thiamine.

The muscle wasting and weight loss happened to me.  I lost sixty pounds in six weeks after a Celiac Crisis.  Luckily I found the hormones matter web site and began high dose thiamine.

Here's a few articles to which you might relate....

https://www.hormonesmatter.com/sibo-ibs-constipation-thiamine-deficiency/

http://www.hormonesmatter.com/thiamine-deficiency-causes-problems/

https://www.hormonesmatter.com/gastrointestinal-disease-thiamine/

 

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Thanks KK for reading/commenting/posting these article links!  I know TD is a popular issue of discussion among holistic med community folks...However, my labs all show normal vit./mineral levels--including all the "B"s. 

I also have really IBS/stress/sleep issues, esp. bad since this pandemic/quarantine began...EVERYDAY loose BMs no matter what the heck I eat😖.  I suspect these factors are big issues in my continued weight/muscle loss.  

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KK...I also forgot to mention that I take both daily multivitamin and B complex supplements.  B complex pill includes 3 mg. of B1 and I also try to eat foods high in Bs every day.

What triggered your "CC"??  Did you experience that rapid weight loss (and digestion issues) BEFORE you were dx with celiac disease?  And how long did it take for you to regain that weight?   

I am glad you are so much better!

 

 

 

 

 

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

"Levels of thiamin in the blood are not reliable indicators of thiamin status. Thiamin status is often measured indirectly by assaying the activity of the transketolase enzyme, which depends on TDP, in erythrocyte hemolysates in the presence and absence of added TDP [3]. The result, known as the “TDP effect,” reflects the extent of unsaturation of transketolase with TDP. The result is typically 0%–15% in healthy people, 15%–25% in those with marginal deficiency, and higher than 25% in people with deficiency. Another commonly used measure of thiamin status is urinary thiamin excretion, which provides data on dietary intakes but not tissue stores [5]. For adults, excretion of less than 100 mcg/day thiamin in urine suggests insufficient thiamin intake, and less than 40 mcg/day indicates an extremely low intake [6]."

How was your thiamine level tested?  

 

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High dose thiamine means 500 mg of thiamine a day or above.  

Some take 500 mg three times a day for several days, then a maintenance dose is set.

Thiamine has no upper limit.  It is safe.  It is water soluble, any excess is flushed out in urine.  At most, you may get nauseous.  If so back down the amount.  The RDA's are minimums to prevent illness, most set in World War II.

This article is in reference to Wernicke's Encephalopathy, but it proves high dose thiamine is effective and safe.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5354137/

 

My Celiac Crisis happened before my Celiac Disease diagnosis.  My doctors couldn't figure out what was wrong with me.  They said I was a hypochondriac and wrote me off.  Doctors don't recognize (or even think about the possibility of) vitamin deficiencies.  Thank my lucky stars I had a university degree and figured it out for myself.

The IBS, anxiety and sleep issues are all early signs of thiamine deficiency.  I know this one.  I lived through it.  

500 mg for three days and there will be a difference! 

 

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Kat333,

If you are losing weight you should consider SIBO or Refeeding Syndrome presenting as  a Celiac Crisis....

Here is a study about it....entitled "Refeeding syndrome in adults with celiac crisis: a case report"

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5791168/

You might also have Low Albumin levels....I did and the doctor's didn't know I had developed Refeeding Syndrome because it is often diagnosed as something else instead.

I wrote a Posterboy blog post about how and why Refeeding Syndrome aka (RFS) happens in Celiac......maybe it will help you.

If you have low BMI, and weight loss....you are definitely at risk for Refeeding Syndrome aka RFS.

See table 1 from above link on Refeeding Syndrome Presenting as a Celiac Crisis ....

Taking Magnesium Glycinate and Benfotiamine (fat soluble) B-1 with meals can help your Refeeding Syndrome.  I would also take an Enzymic B-Vitamin since all the B's works synergistically.

A Thiamine deficiency has also been show to be low/common in SIBO.....so it (Thiamine) should help either the SIBO or Refeeding Syndrome condition....when taken with a Magnesium Glycinate.

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

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

2 Tim 2:7 “Consider what I say; and the Lord give thee understanding in all things” this included.

Posterboy by the Grace of God,

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Hi again KK.  Thanks for your great words of reassurance, wisdom, and experience. I will definitely give that higher B1 dose a try, esp. knowing small risk of damage due to overdose (as can happen with other vitamins).  Did you really notice an improvement after ONLY 3 days on B1?!  Awesome!  Could you pls. share the gluten-free brand name you take?  Did you need Dr. script for such a high dose?  Is sublingual dissolvable better absorbed than pills?

I don't know if I've ever had a "classic CC crisis" but, last year (June) I had sudden sharp spike in BP/heartburn and the worst severe headache (I never even had those before in my life!) after bad phone conversations with first a screaming, cursing client and then a screaming boss.  Those symptoms were so severe I literally ended up in the ER, fearing a stroke, heart attack.  Luckily that wasn't the case.  Doc. said extreme stress/panic attack (well...hello??).  I went home, promptly quit the (toxic, stressful, draining) job I had endured far too long to save my sanity/health.  I thought a nice, long work break (I never took "real" vacations before) would make me feel better, but still terrible, inexplicable fatigue/anxiety/insomnia..

Then a few months after I quit toxic job, my bowels decided to revolt after another/different big stress in my life.  That's when primary care doc thought to do a TTG blood test which came back with elevated G antibodies at level 224.   I got EGD/SI biopsies afterward which was showed no small intestine damage, negative for C sprue, but mild gut gastritis.  I began gluten-free diet in Dec./Jan.  and, encouragingly, my next G antibody test (March 2020) showed my G numbers had signif. dropped to 73.  However, my June 2020 test showed slight increase (81)...I was disappointed, expecting/hoping G antibody numbers to have fallen to near "normal" levels.  But I realize that can take some time to happen  and I should just be patient, count my blessings (progress after only 6 months on gluten-free diet).

I can so relate to being tagged by some docs as "hypochondriac". 😉 I'm a lifelong HSP (highly sensitive person), very prone to anxiety/depression, and anx. DOES affect the ENTIRE body so definitely a link between physical/mental symptoms. (All the more reason for docs to ROUTINELY test for celiac disease/vitamin def the same way they do for cholesterol and thyroid.)  I keep wishing they had tested me for celiac disease in childhood...It is a real downer knowing I have been unknowingly damaging my gut for DECADES before docs even thought to check for celiac disease.  IMO ALL babies should be genetically tested for celiac disease after birth and retested for G antibodies before kindergarten.  Would probably spare so much lifelong misery...  

 

 

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If you are losing weight you should consider SIBO or Refeeding Syndrome presenting as  a Celiac Crisis....

Here is a study about it....entitled "Refeeding syndrome in adults with celiac crisis: a case report"

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5791168/

Thanks for the comments, PB.  But, good God no!  I am NOWHERE as sick as the person discussed in that study report. 😱

My BMI is in the "normal" range (although I wish it were a bit higher).  Also, I got blood tests recently which showed ALL vitamins/minerals and organ function tests are well within normal range.  My only symptoms are daily loose stools/sometimes constipation...constant fatigue, poor sleep.  Occasionally foot/leg cramps at night and "pins/needles". 

I am just going to try a trial of extra vitamin B and MH counseling...I think most of my digestive issues are primarily related to IBS/anxiety/fear of eating/G exposure.  Possibly some SIBO mixed in there..but trials of Rifaximin followed by probiotics have not provided long term bowel change relief.  CV pandemic certainly doesn't help anxiety which can manifest in gut (aka our "2nd brain").  I probably should learn better sleep habits and spend time away from this blog, obsessing about my symptoms/illness...😉

 

 

 

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I'm currently taking LifeExtension Benfotiamine with thiamine 100mg capsules (fat soluble form of thiamine) which helps my diabetes. Once or twice a day.

And I currently take Now B-1, 100mg tablets, one with every meal.  

I've tried several fat soluble forms of thiamine like Benfotimine and these two others...

I have tried Ecological Formulas Allithiamine 50 mg capsules.  This one is derived from garlic and works well. (But kind of pricey.)

I've tried Cardiovascular Research, Ltd Lipothiamine, 50 mg tablets, another fat soluble one. I really like this one.  

All are gluten free, casein free.  

I took Ecological Formulas Allithiamine (tetrahydrofurfuryl disulfide) but found it's really strong...and I take it on alternate days  instead of the Benfotiamine.

https://pubmed.ncbi.nlm.nih.gov/15328496/

I took just the Now B-1 100mg as the high dose thiamine because I was sceptical, too.  I took up to ten a day and my brain came back on.  After three days I could cut back, and I experimented with the other fat soluble ones. I had read the fat soluble forms cross the blood brain barrier and I didn't need such high doses.  Every one is different.  You have to find what works for you.

Hope this helps!

 

 

 

 

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Wanted to add....

Thiamine needs magnesium to work best, so I take Doctor's Best High Absorption Magnesium.

Years ago, I read this book... Niacin, the Real Story... by Dr. Hoffer and it really helped.  I had returned to normal niacin intake, but I felt something missing after correcting my  thiamine, so started taking Niacin as described in Dr. Hoffer's book.  With the thiamine and niacin together, I feel so much better!  

Niacin likes to work with Vitamin C.  I take Doctor's Best Vitamin C with Q-C.  

Niacin and Thiamine work together.  Now I've got both corrected, I feel so much better.  

Hope this helps!

P.S. Thiamine deficiency and SIBO

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

 

Edited by knitty kitty
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Hi again.  KK.  How many days/weeks/months??? before you noticed an improvement in how you felt after beginning all those supplements?

I asked that Q in my earlier note... Apologies for such a long-winded earlier note.😉  

 

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Sorry, so much information I wanted to impart. 

The difference I felt was within hours of taking that first 500 mg dose of thiamine.  Took another 500 mg at lunch.  I kept feeling better and better.  I realized I could take 300 mg or 400 mg with each meal and get the same effect.  Three or four days later, I didn't feel an improvement as obvious as when I took the first few doses, so I dropped to 200 - 300 mg with each meal and now I'm down to 100 mg with two meals and one benfotiamine.  If I get stressed or am very active, I can always take an extra.  I can tell when I need more.  I know I've had enough when my pee smells like I've eaten a ton of asparagus.  (There's lots of thiamine in asparagus which causes that sulfur smell.)  Thiamine is water soluble and is excreted in urine. 

Same way with the niacin, high doses at first, improvement within hours.  Improvement for days, hit a plateau, taper back slowly to maintenance dose.  It's in that book.

I felt like the lights in my head came back on.  I'd been living in a clammy basement, and all of a sudden, the lights switched on and continued to get brighter.  It was almost as if I could feel brain cells firing and connecting with other brain cells again.  My anxiety dissipated.  I felt competent, confident and calm again.  The pain and fatigue left.  I had tons of energy. 

When I was deficient, I didn't notice how much my brain function had declined.  With the high dose thiamine and niacin, I see the improvement and am shocked at the difference.  I'm aghast when I think of the years struggling with physical health problems, anxiety, depression, PTSD, mental illness problems that are all easily remedied with a five dollar bottle of vitamins in the correct dosage.  I'm horrified to think that the medical professionals ignore this simple solution and prefer prescription medications from which they can make a profit.  I still have a lot of hostility about how I was written off by the medical profession and lost everything, so I can't go into further detail, but it wounds me deeply when I realize how pervasive their attitude is that vitamins aren't that important,  just eat healthy.  You can't eat enough food to make up for a deficiency when you can't absorb and utilize what you eat because of deficiencies.  

Paraphrasing Dr. Hoffer, you're sick because you're vitamin deficient, not because you're medication deficient.  If you give the body what it needs to function properly, it will correct itself.  

As for me, I'm taking thiamine and niacin.  

 

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Wow!! Thanks for sharing, KK.  That gives me HOPE.  I would be ETERNALLY GRATEFUL if my even some of my physical/mental symptoms improve that quickly with extra B/magnesium!!😁 

I try not to blame my docs for not FIRST recommending a course of extra vitamins etc.  They weren't taught about it in med. school. They (esp. GI docs, endocrinologists) also weren't taught/trained to AUTOMATICALLY order TTG and other tests for EVERY patient who shows up in their offices, presenting with classic GI/celiac disease or other immune system complaints (GERD, unexplained fatigue, skin probs., D, C, gas).   Instead, they often make it worse by throwing pills at patients which are only "band-aids" that FURTHER compromise the immune system, instead of trying to pinpoint and eliminate the SOURCE/TRIGGER/REASON for the illness.   

IMO big pharma $$$, corp. greed has really messed up the once sane, humane medical system--for BOTH drs./nurses AND patients.  It's no longer "a profession"; it's a $$$ machine and that won't likely change in our lifetimes.  I know many drs./nurses have left in disgust because it's literally making THEM sick...

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Please call me Kitty.  I'm paranoid another K will slip into your abbreviation and then I'll really be in trouble!  😸

I think doctors and especially gastroenterologists should be taught about vitamins and deficiency diseases.  I learned about them in the premed courses I took at university.  Why couldn't they?  Because Big Pharma is in control of many medical schools and training hospitals.  Vitamins usually can't be patented, so Big Pharma can't make money off prescribing them.  But they can make money off of synthetic drugs.  So that's where they focus their attention, development and training. 

I had "band-aid" prescription drugs thrown at me by the dozens.  My health deteriorated all the more the faster they threw pills at me.  The known side effects of some of the medications I had been prescribed are vitamin deficiencies.  My doctors never warned me about this, they never took preventative actions, never prescribed prophylactic vitamins to counteract these known side effects.  Nothing. 

One doctor did check my Vitamin D level only after he ascertained that my insurance would cover it.   And to shut me up.  He knew he could prescribe Vitamin D 2, a synthetic form of Vitamin D made by Big Pharma.  Vitamin D 2  is about useless (not a biologically active form).  But he refused to check for any other deficiencies.  

My gastroenterologist did not recognize the niacin deficiency disease, Pellagra, when I went to an appointment with three out of the four D's.  (Diarrhea, Dermatitis, Dementia and Death).  I had Casal's necklace which was mistaken for syphilis.  And despite a negative on the syphilis test, no other explanation was given me by that office. Not even for the unrelenting diarrhea.  Just advised to keep taking my prescriptions. 

Thank my lucky stars, I knew the four D's of Pellagra.  It was on a test at university. It clicked.  I recognized it.  I started supplementing.  Amazon Next Day Delivery saved my life.  😼

I found Dr. Holder's book about Niacin.  If you read that, you can see how his revelations about Niacin was squeezed out by Big Pharma, too.  

I researched and refreshed what had I learned at university about vitamins and Celiac Disease.  I quit taking all those medications.  I started supplementing.  My health improved.

I got a different doctor who told me my vitamin levels were fine and I could stop supplementing.  He promptly prescribed several medications that he said without which I risked serious consequences.  My health disintegrated again.  He promptly took me off the prescription medications.  And I resumed supplementing.   And my health continues to improve.  

So, yes, highly skeptical of Big Pharma and the medical profession.  

All those supplements I listed are available on Amazon.com without a prescription.  Much of the information is now available for free on the internet or for minimal costs (certainly less than tuition).  Knowledge is power.

I hope the supplements work as dramatically for you as they did for me.  Please keep me posted on your results.  Please bear in mind, I am not a medical professional.  You may want to discuss your supplementation with your doctor.

Best wishes,

Kitty

 

 

 

 

 

 

 

 

 

 

 

 

 

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Here's the links to the book about Niacin and the vitamins.....

Dr. Holder's book on Niacin....

https://www.amazon.com/Niacin-Story-Wonderful-Healing-Properties/dp/1591202752/ref=mp_s_a_1_3?dchild=1&keywords=niacin+dr.+hoffer&qid=1594125580&sr=8-3

 

Life Extension Niacin 500 mg (Must get the kind that flushes for best results)

New packaging....

https://www.amazon.com/Life-Extension-Vitamin-Niacin-Capsules/dp/B000PBX32G/ref=mp_s_a_1_3?dchild=1&keywords=life+extension+niacin+500mg&qid=1594126958&sprefix=life+extension+niacin&sr=8-3

Or...

Life Extension Niacin 500mg (old packaging)

https://www.amazon.com/Life-Extension-Vitamin-Niacin-Caps/dp/B0041U3KAM/ref=mp_s_a_1_8?dchild=1&keywords=life+extension+niacin+500mg&qid=1594126988&sprefix=life+extension+niacin&sr=8-8

 

Now B-1 100mg

https://www.amazon.com/NOW-Vitamin-B-1-Thiamine-Tablets/dp/B0009P3DRS/ref=mp_s_a_1_3?dchild=1&keywords=now+b-1+100mg&qid=1594127431&sprefix=now+b-1+100&sr=8-3

 

The fat soluble thiamines:  Benfotiamine, Allithiamine, and Lipothiamine. 

Choose one.  You don't have to have all three.  

I tried all three to see the difference for myself.

I felt Allithiamine is the strongest, then Lipothiamine, and Benfotiamine (recommended for diabetes).

 

Life Extension Benfotiamine with thiamine

https://www.amazon.com/Life-Extension-Benfotiamine-Thiamine-Vegetarian/dp/B000MYXVTQ/ref=mp_s_a_1_5?dchild=1&keywords=life+extension+benfotiamine&qid=1594125709&sprefix=life+extension+benfoti&sr=8-5

 

Ecological Formulas Allithiamine

https://www.amazon.com/Ecological-Formulas-Allithiamine-Vitamin-Capsule/dp/B001Y9WZ5O/ref=sxts_sxwds-bia-wc-p13n1_0?cv_ct_cx=ecological+formulas+allithiamine&dchild=1&keywords=ecological+formulas+allithiamine&pd_rd_i=B001Y9WZ5O&pd_rd_r=0b9e5395-c056-43cc-b314-3de8a845c81e&pd_rd_w=SBqUi&pd_rd_wg=X3X1I&pf_rd_p=9e56d402-1874-404b-b267-c6aaa71b547f&pf_rd_r=S1HZXBPZRGKPZWH0MH50&psc=1&qid=1594125982&sprefix=ecological+formulas+&sr=1-1-191b1ae3-0539-4250-ad39-b698e0b800f6

 

Cardiovascular Research, Ltd Lipothiamine

https://www.amazon.com/Cardiovascular-Research-Lipothiamine-White-Count/dp/B002GODI7U/ref=sxts_sxwds-bia-wc-p13n1_0?cv_ct_cx=cardiovascular+research+lipothiamine&dchild=1&keywords=cardiovascular+research+lipothiamine&pd_rd_i=B002GODI7U&pd_rd_r=8559738e-8b8d-48ee-b06b-583fe1743b45&pd_rd_w=ZJRN8&pd_rd_wg=aesvU&pf_rd_p=9e56d402-1874-404b-b267-c6aaa71b547f&pf_rd_r=B1TE8BKNQQ7C9AKHXH6V&psc=1&qid=1594126158&sprefix=cardiovascular+research+&sr=1-1-191b1ae3-0539-4250-ad39-b698e0b800f6

 

Doctor's Best High Absorption Magnesium

https://www.amazon.com/Doctors-Best-Absorption-Magnesium-Glycinate/dp/B000BD0RT0/ref=mp_s_a_1_3?dchild=1&keywords=doctor's+best+high+absorption+magnesium+glycinate+lysinate&qid=1594126321&sprefix=doctor's+best+high+absorption+ma&sr=8-3

 

Doctor's Best Vitamin C with Q-C

https://www.amazon.com/Doctors-Best-Vitamin-Quali-C-Scotland/dp/B00I8PQ198/ref=mp_s_a_1_4?dchild=1&keywords=doctor's+best+vitamin+c+with+q-c&qid=1594126520&sprefix=doctor's+best+vitamin+c+w&sr=8-4

 

B-Complex (so you get all of your different B vitamins).  100 mg or 50mg...... whichever you prefer....

This one is 100mg of the B vitamins....

https://www.amazon.com/NOW-Vitamin-B-100-100-Capsules/dp/B000UX110A/ref=mp_s_a_1_3?crid=3UQS57NC8V1VW&dchild=1&keywords=now+b-100&qid=1594128004&refinements=p_85%3A2470955011&rnid=2470954011&rps=1&sprefix=now+b-1&sr=8-3

This one's 50 mg of the B vitamins.... 

https://www.amazon.com/Now-Supplements-Vitamin-B-50-Capsules/dp/B0013OSL5S/ref=mp_s_a_1_3?dchild=1&keywords=now+b-50+complex&qid=1594128155&sprefix=now+b-50&sr=8-3

 

 

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Niacin will make you flush.  It goes away in three to five days usually.  If your body  really needs niacin, you may flush longer, but it does go away.

Get the Life Extension Niacin 500 mg.  

And the Allithiamine or the Now thiamine.  I started with the Now thiamine.  

And the Magnesium.

And the Vitamin C.

These all work together.  

 

 

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I took ten of the Now Thiamine (B-1) tablets for three days.  I took 3 tablets at breakfast, 3 tablets at lunch and one with afternoon snack, and 3 tablets with dinner.  You can take ten of the tablets for more days than that if you keep feeling better.  If you get sick to your stomach, don't take so many at once or so close together or take fewer throughout the day.  

I took one Magnesium tablet at each meal and with my snack. If you get diarrhea, skip a tablet or two.

I took one Niacin (B-3) capsule with each meal and my snack.  If you get sick to your stomach, skip taking one or two.

I took one Vitamin C at breakfast and one at supper. 

Take only one of the Now B-50 complex.

 

38 minutes ago, DJFL77I said:

 

We straight?

You can take fewer of the Now Thiamine tablets and the niacin as you start feeling better.  

Every one is different and you have to find what works best for you.

 

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