Jump to content
  • 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

Weight Loss/Muscle Wasting on gluten-free Diet


Kate333

Recommended Posts

DJFL77I Experienced

that sounds like a lot of them to take .  Then what did you do after the 3 days?

Can I just try the b 50 with Magnesium...


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



Celiac.com Sponsor (A8-M):



GFinDC Veteran

Hi Kate,

There are a few things to consider about your antibodies still being elevated.

You may be consuming a small amount of gluten on an ongoing basis and not realize it.

You may have a determined immune system that is not going to power down right away.

Going back to a very basic diet may help.

Awol cast iron stomach Experienced
7 hours ago, knitty kitty said:

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. I

Wow.This is heartbreaking.💔

knitty kitty Grand Master
15 minutes ago, DJFL77I said:

Then what did you do after the 3 days?

Can I just try the b 50 with Magnesium 

I felt so much better taking the high dose thiamine, but after three days my brain function didn't seem to be improving as dramatically.  I had reached a plateau.  I no longer needed as much.  I cut down on the amount I was taking slowly. When I didn't feel as bright, I took a little more.

Every one is different.  You might have improvement for more than three days.  It depends on how deficient your body is and what makes you feel better.  

Taking the B50 and magnesium is a good place to start.  

I was taking the high doses of thiamine because I had read that the transporters that allow thiamine into the cells shut down when there's a thiamine deficiency.  Sort of like a doorman not allowing anybody in or out of a building.  In order to get the thiamine transporters to work again, there has to be lots and lots of thiamine.  Sort of like an angry mob banging on the doors of that building trying to get in.  It takes about three days for high doses of thiamine to turn the transporters back on.  The doors open.  Once the transporters are working again the thiamine doses can be lowered.  A similar thing happens with niacin.  

If you take just the B-50 complex, there's not enough thiamine or niacin in there to do what I described above.   

27 minutes ago, DJFL77I said:

Then what did you do after the 3 days?

Can I just try the b 50 with Magnesium 

 

 

knitty kitty Grand Master

Thanks for your sympathy. 😿

Casal's necklace in syphilis occurs towards the shoulders. 

Casal's necklace in Pellagra occurs on the areas of the neck exposed to sunlight.  In Pellagra, any skin exposed to sunlight  becomes photosensitive, becoming more pigmented and scaly skin develops.  Neck, face, arms, feet.  

I have a hand print on my arm where I rested my hand while my arm rested on the window sill of my dad's truck while he drove me to a doctor appointment.  The pigmentation is permanent.  The scars from the scaling is permanent.  

Google Images for "pellagra rash" .  

Yeah, I'm a mess.

31 minutes ago, Awol cast iron stomach said:

Wow.This is heartbreaking.💔

 

Posterboy Mentor
7 hours ago, DJFL77I said:

that sounds like a lot of them to take .  Then what did you do after the 3 days?

Can I just try the b 50 with Magnesium...

DJ,

You can take just the B-50 and Magnesium.....but be sure to take it 2x to 3x with meals.

The best B-1 form is one of the Fat Soluble forms Knitty Kitty already mentioned...

So take your B-complex (Enzymic is better) and a Magnesium either as a Glycinate (anytime including bedtime) or a Magnesium Citrate with meals and one of the Fat Soluble B-1s like Benfotamaine.....

And try to find a Enzymic with the ThiamineHCL form....it has a better absorption profile than the Mononitrate often found in cheaper B-complexs...

And you should notice a noticeable difference in 3 to 4 weeks and a sustained difference in 3 to 4 months....

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

Posterboy,

Posterboy Mentor
7 hours ago, knitty kitty said:

Taking the B50 and magnesium is a good place to start.  

I was taking the high doses of thiamine because I had read that the transporters that allow thiamine into the cells shut down when there's a thiamine deficiency.  Sort of like a doorman not allowing anybody in or out of a building.  In order to get the thiamine transporters to work again, there has to be lots and lots of thiamine.  Sort of like an angry mob banging on the doors of that building trying to get in.  It takes about three days for high doses of thiamine to turn the transporters back on.  The doors open.  Once the transporters are working again the thiamine doses can be lowered.  A similar thing happens with niacin.  

If you take just the B-50 complex, there's not enough thiamine or niacin in there to do what I described above. 

To All Et Al,

This study on ThiamineHCL confirms what Knitty Kitty was saying....

This is just the abstract entitled "Pharmacokinetics of High-Dose Oral Thiamine Hydrochloride in Healthy Subjects"

https://pubmed.ncbi.nlm.nih.gov/22305197/

See figure One....the Thiamine blood levels didn't go up significantly for ThiamineHCL until it went over 500 milligram a day...so taking a fat soluble B-1 like Benfotamine with meals should allow your Thiamine levels to stay elevated long enough to do some good...

IE most B-complex's don't have enough B-1 to make a significant difference and why taking a fat Soluble B-1 with your B-complex's is important.....and especially with Magnesium Glycinate again anytime or with Magnesium Citrate with meals as a Co-factor to help the body convert it (thiamine) to it's active form in the body.

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

Posterboy,


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



Celiac.com Sponsor (A8-M):



knitty kitty Grand Master

Thank, PosterBoy!

Thanks for the link!  You always have the best links and additional input!

 Much appreciated!

Knitty Kitty

 

Kate333 Rising Star

Thanks for everyone's great comments, links, and insight!!....

But could we PLEASE close this thread now??  I am pretty overwhelmed by all the back and forth comments/discussions, info, tons of emails showing up in my inbox.  It will take me DAYS to read through it all!!😵

Thanks,

Kate

 

DJFL77I Experienced

my Dr wants me to take a multi vitamin with iron...   so i found this:    https://www.riteaid.com/shop/nature-made-multi-complete-with-iron-tablets-130-tablets-0352985?gclid=Cj0KCQjw3ZX4BRDmARIsAFYh7ZKMcKhirAsxBMIVsLLFFv0L8rQartuhx4C5Fnd0xUAsmB5U6gvn7TIaAmrcEALw_wcB

it also has magnesium in there.. 100mg    should i still take magnesium separately before a meal and the b-50  ?

Posterboy Mentor
21 hours ago, Kate333 said:

Thanks for everyone's great comments, links, and insight!!....

But could we PLEASE close this thread now??  I am pretty overwhelmed by all the back and forth comments/discussions, info, tons of emails showing up in my inbox.  It will take me DAYS to read through it all!!😵

Thanks,

Kate

 

Kate333,

You can always uncheck the notify button....I have done the same thing myself....(if a thread gets too busy)

Their were a lot of reply's yesterday....but it will probably slow down now....

That said I am going to answer DJ's questions on Vitamin/supplements now....maybe it will help you too when you get a chance to "catch" up on this thread again...

Knitty Kitty had a lot to say....I tend to be a little too long.....so my next reply will be a little long because I don't currently know when I might get back....

Each to his own style.....but I like to answer as many questions as possible in one reply....in case I can't make it back for awhile......which can make my reply's too long to read for some...but as Knitty Kitty said she had a lot of ground cover.....

Posterboy,

Posterboy Mentor
12 hours ago, DJFL77I said:

my Dr wants me to take a multi vitamin with iron...   so i found this:    https://www.riteaid.com/shop/nature-made-multi-complete-with-iron-tablets-130-tablets-0352985?gclid=Cj0KCQjw3ZX4BRDmARIsAFYh7ZKMcKhirAsxBMIVsLLFFv0L8rQartuhx4C5Fnd0xUAsmB5U6gvn7TIaAmrcEALw_wcB

it also has magnesium in there.. 100mg    should i still take magnesium separately before a meal and the b-50  ?

And your comment "I just want B1, B3, and the Magnesium guess"

DJ,

I looked at your label.....and the form of magnesium was oxide.....a poorly available form....so you are not getting much Magnesium or Thiamine from this supplement....it was Thiamine mononitrate both with low absorbability...

So yes find a separate Magnesium Glycinate and Benfotiamine taken with meals and it will help you along with this Multivitamin....

these multi-----is not nearly as good as it sounds....

If you have ever taken Magnesium you will know why this..this mutli has only a 1/4 of your RDA of magnesium as an example....

Magnesium are honking big pills.....you would have to take 4 pills just to get the minimum RDA of Magnesium alone.....and with oxides....that might only be 30pct or less of it absorbed...

Also low or no stomach acid is a common cause of Iron deficiency...and until you address that even taking a good iron supplement might not help.

see this research entitled "Is Achlorhydria a Cause of Iron Deficiency Anemia?" and the answer was yes!

https://pubmed.ncbi.nlm.nih.gov/25994564/

This goes for Magnesium as well and why it is good to supplement with it...

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

Posterboy,

 

Posterboy Mentor
Just now, Posterboy said:

And your comment "I just want B1, B3, and the Magnesium guess"

DJ,

I couldn't answer  your B-complex question in one reply.

Yes B1, B3, and Magnesium is critical to good health but also B-2 aka Riboflavin is important as well and why it is easier to find a good enzymic B-Vitamin.

One of the reason's B-complex's should be taken together is they work synergistically together....

See this medical news today article that explains why this is...

https://www.medicalnewstoday.com/articles/219561

quoting

Vitamin B2 is essential for:

Maintaining the mucous membranes in the digestive system

Maintaining a healthy liver

Converting tryptophan into niacin, an amino acid

Keeping the eyes, nerves, muscles and skin healthy

Absorbing and activating iron, folic acid, and vitamins B1, B3 and B6

Hormone production by the adrenal glands

Preventing the development of cataracts

Fetal development, especially in areas where vitamin deficiency is common

Some research suggests that vitamin B2 may help prevent cataracts and migraine headache, but further studies are needed to confirm this.

Other studies have found that in children with autism, supplements of vitamins B2, B6, and magnesium appear to reduce the levels of abnormal organic acids in the urine"

And this Riboflavin/B2 also could be contributing to your iron issues...

Read these Posterboy blog posts and I think they will help you....

I ironically wrote these Posterboy blog post(s) so I wouldn't have to type toooooooo much....but sometimes it is necessary no matter what you do!

This one will show you why FREQUENCY is more important than the amount of your B-Vitamin....it written from the perspective of Niacinamide (the flush free form of Niacin) but it true too for B-1 and B-2 (Riboflavin)...

We eat two to three times a day right?

And this one shows how many Celiac's are low in Micronutrients and the doctor's don't know to check our Vitamin status' ......

try and read the comments I think it will  help you.

These are my lesson's learned from supplementing and I have tried faithfully to pass on to other's that are interested...

You will probably notice an improvement in energy and fatigue and lessened muscle cramps in 3 to 4 weeks with the Magnesium Glycinate (good for night time sleeping) alone or Magnesium Citrate (but always with meals)....I know I did!

Knitty Kitty has given you good advise.....take these (Benfotiamine) and a good Enzymic B-complex and Magnesium Glycinate with meals and you will be surprised how much better you feel in 3 months!

A sign of a higher quality B-complex is one with ThiamineHCL in it which has higher availability....

Again I hope this is helpful but it is not medical advise.

2 Corinthians (KJV) 1:3,4 3) “Blessed be God, even the Father of our Lord Jesus Christ, the Father of mercies, and the God of all comfort;  4) who comforteth us in all our tribulation, that we may be able to comfort them which are in any trouble (fellow sufferer), by the comfort wherewith we ourselves are comforted of God.”

As always, 2 Timothy 2:7  “Consider what I say; and the Lord give thee understanding in all things”

Posterboy by the grace of God,

GFinDC Veteran
(edited)
On 7/7/2020 at 8:35 PM, Kate333 said:

Thanks for everyone's great comments, links, and insight!!....

But could we PLEASE close this thread now??  I am pretty overwhelmed by all the back and forth comments/discussions, info, tons of emails showing up in my inbox.  It will take me DAYS to read through it all!!😵

Thanks,

Kate

 

Hi Kate,

If you click the red or green follow circle you can change the notification preferences.  Setting notifications to once a day or once a week should cut down on the emails.

Edited by GFinDC
Posterboy Mentor
On 7/7/2020 at 9:38 AM, DJFL77I said:

that sounds like a lot of them to take .  Then what did you do after the 3 days?

Can I just try the b 50 with Magnesium...

DJ et Al,

This shows how B1 (Thiamine), B2 (Riboflavin), B3 (Niacinamide) work synergistically to down regulate inflammation in the body (or at least in mammals)

It is new research so it will take years for the medical community to incorporate this the latest fascinating finding(s) on how our B-Vitamins help down regulate inflammation in our body.

But you can benefit by taking an Enzymic B-complex either a B-50 or B-100 with meals now and Magnesium Glycinate now....until more studies prove that indeed B-Vitamins indeed help us with inflammation.

Entitled "Vitamin B Combination (B1, B2, B3) Reduces Fluconazole Toxicity in Wistar Rats"

https://pubmed.ncbi.nlm.nih.gov/30903555/

They will say more test will need to be done in humans before this can be proven while people continue to suffer...

Despite additional research a couple years before this latest research already showing this effect in humans...

entitled "Vitamin B diminishes effects of air pollution-induced cardiovascular disease"

https://www.sciencedaily.com/releases/2017/04/170412111211.htm

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

Posterboy,

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
  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - catnapt posted a topic in Related Issues & Disorders
      0

      anyone here diagnosed with a PARAthyroid disorder? (NOT the thyroid) the calcium controlling glands

    2. - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      how much gluten do I need to eat before blood tests?

    3. - Jmartes71 posted a topic in Coping with Celiac Disease
      0

      Curious question

    4. - Amy Barnett posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      0

      Question

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,322
    • Most Online (within 30 mins)
      7,748

    avery144
    Newest Member
    avery144
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • catnapt
      learned I had a high PTH level in 2022 suspected to be due to low vit D  got my vit D level up a bit but still have high PTH   I am 70 yrs old (today in fact) I am looking for someone who also has hyperparathyroidism that might be caused by malabsorption    
    • catnapt
      I am on day 13 of eating gluten  and have decided to have the celiac panel done tomorrow instead of Wed. (and instead of extending it a few more weeks) because I am SO incredibly sick. I have almost no appetite and am not able to consume the required daily intake of calcium to try to keep up with the loss of calcium from the high parathyroid hormone and/or the renal calcium leak.    I have spent the past 15 years working hard to improve my health. I lost 50lbs, got off handfuls of medications, lowered my cholesterol to enviable levels, and in spite of having end stage osteoarthritis in both knees, with a good diet and keeping active I have NO pain in those joints- til now.  Almost all of my joints hurt now I feel like someone has repeatedly punched me all over my torso- even my ribs hurt- I have nausea, gas, bloating, headache, mood swings, irritability, horrid flatulence (afraid to leave the house or be in any enclosed spaces with other people- the smell would knock them off their feet) I was so sure that I wanted a firm diagnosis but now- I'm asking myself is THIS worth it? esp over the past 2 yrs I have been feeling better and better the more I adjusted my diet to exclude highly refined grains and processed foods. I didn't purposely avoid gluten, but it just happened that not eating gluten has made me feel better.   I don't know what I would have to gain by getting a definitive diagnosis. I think possibly the only advantage to a DX would be that I could insist on gluten-free foods in settings where I am unable to have access to foods of my choice (hospital, rehab, nursing home)  and maybe having a medical reason to see a dietician?   please let me know if it's reasonable to just go back to the way I was eating.  Actually I do plan to buy certified gluten-free oats as that is the only grain I consume (and really like) so there will be some minor tweaks I hope and pray that I heal quickly from any possible damage that may have been done from 13 days of eating gluten.    
    • Jmartes71
      So I've been dealing with chasing the name celiac because of my body actively dealing with health issues related to celiac though not eating. Diagnosed in 1994 before foods eliminated from diet. After 25 years with former pcp I googled celiac specialist and she wasn't because of what ive been through. I wanted my results to be sent to my pcp but nothing was sent.I have email copies.I did one zoom call with np with team member from celiac specialist in Nov 2025 and she asked me why I wanted to know why I wanted the celiac diagnosis so bad, I sad I don't, its my life and I need revalidaion because its affecting me.KB stated well it shows you are.I asked then why am I going through all this.I was labeled unruly. Its been a celiac circus and medical has caused anxiety and depression no fault to my own other than being born with bad genetics. How is it legal for medical professionals to gaslight patients that are with an ailment coming for help to be downplayed? KB put in my records that she personally spent 120min with me and I think the zoom call was discussing celiac 80 min ONE ZOOM call.SHE is responsible for not explaining to my pcp about celiac disease am I right?
    • Amy Barnett
      What is the best liquid multivitamin for celiac disease?
    • Jmartes71
      I've noticed with my age and menopause my smell for bread gives me severe migraines and I know this.Its alarming that there are all these fabulous bakeries, sandwich places pizza places popping up in confined areas.Just the other day I suffered a migraine after I got done with my mri when a guy with a brown paper bag walk in front of me and I smelled that fresh dough bread with tuna, I got a migraine when we got home.I hate im that sensitive. Its alarming these places are popping up in airports as well.I just saw on the news that the airport ( can't remember which  one)was going to have a fabulous smelling bakery. Not for sensitive celiacs, this can alter their health during their travel which isn't safe. More awareness really NEEDS to be promoted, so much more than just a food consumption!FYI I did write to Stanislaus to let them know my thoughts on the medical field not knowing much about celiac and how it affects one.I also did message my gi the 3 specialist names that was given on previous post on questions on celiac. I pray its not on deaf door.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.