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

Vitamins And Mineral Suppliments


bincongo

Recommended Posts

bincongo Contributor

I am confused. My lab tests show I am almost anemic, have low WBC, low MCHC. I am in normal range on B1 but close to being low. My B6 was high, vitamin D was normal. My B12 and calcium were normal. I am trying to figure out what Vitamins and Minerals to take. My Centrum Silver says it has 833% of daily requirement of Vitamin B12, does that really mean anything to a Celiac?

I went to my health food store and picked up Vitamin B1 100mg, Folic acid 400mcg, Gentle Iron 25mg and Vitamin B12 250 mcg all made by Solgar. I am trying to cut out the vitamin B6 by separating it from the others but of course my multivitamin has B6 5mg which is listed at 250% DV. I don't know if I should take the multivitamin and just go with the separate ones. I am also taking Magnesium.

As a side line, I think I am having neuro problems, both my legs are having some pain and numbness. No tingling of feet and hands like some people report. This neuro symptom seems to come and go. I also have osteopenia and wonder how much Calcium to take.

I have only been a diagnosed Celiac for 3 months now and these are recent lab tests after finding out I was a Celiac.


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



Celiac.com Sponsor (A8-M):



Emilushka Contributor

I'm also a recent diagnosis. My doc told me to just take a multivitamin with an additional 400 mcg of folic acid and a couple Tums for calcium (I also have a calcium supplement with Vitamin D included). I'm actually doubling the folic acid (with the doc's approval) in case of accidental pregnancy.

For you, it really sounds like the worst part right now is your almost-anemia. Did you talk to your doc about the lab results? Taking one iron pill per day is a good way to start, and remember that the iron pills can constipate you and give you gas (so if you get symptoms, it doesn't necessarily mean you got glutened - although meds and vitamins can have gluten, so check the ingredients carefully!)

How long have you been osteopenic? Taking one calcium supplement per day as a start and doing weight-bearing exercise (walking is the absolute best) will help to build up your bone density. If you've had a DEXA scan in the past, I'm sure you're scheduled for another one to monitor your bones.

Check with the doc about the lab results, but it really sounds like you're doing well overall! B12 is one of the vitamins that's stored in the liver long-term, so don't worry too much about it if you have enough of it. A person NORMALLY has a 3-year supply of B12 stored in the liver (with Celiac for three years, though, you could have had malabsorption and be running low so I'm not trying to tell you to NOT take it).

So ... start with replacing the B1, which was low-normal, and the iron and calcium, which we know are low too. Usually if you take in too much of a B vitamin you just pee out the excess, so it should be OK to take the multivitamin that you have. Add on an iron supplement to that and also some calcium and make sure you're walking.

HappyGrandma Rookie

B6, Liquid B under the tongue,B complex and Raw D have really helped me. Hope you feel better soon.

bincongo Contributor

I'm also a recent diagnosis. My doc told me to just take a multivitamin with an additional 400 mcg of folic acid and a couple Tums for calcium (I also have a calcium supplement with Vitamin D included). I'm actually doubling the folic acid (with the doc's approval) in case of accidental pregnancy.

For you, it really sounds like the worst part right now is your almost-anemia. Did you talk to your doc about the lab results? Taking one iron pill per day is a good way to start, and remember that the iron pills can constipate you and give you gas (so if you get symptoms, it doesn't necessarily mean you got glutened - although meds and vitamins can have gluten, so check the ingredients carefully!)

How long have you been osteopenic? Taking one calcium supplement per day as a start and doing weight-bearing exercise (walking is the absolute best) will help to build up your bone density. If you've had a DEXA scan in the past, I'm sure you're scheduled for another one to monitor your bones.

Check with the doc about the lab results, but it really sounds like you're doing well overall! B12 is one of the vitamins that's stored in the liver long-term, so don't worry too much about it if you have enough of it. A person NORMALLY has a 3-year supply of B12 stored in the liver (with Celiac for three years, though, you could have had malabsorption and be running low so I'm not trying to tell you to NOT take it).

So ... start with replacing the B1, which was low-normal, and the iron and calcium, which we know are low too. Usually if you take in too much of a B vitamin you just pee out the excess, so it should be OK to take the multivitamin that you have. Add on an iron supplement to that and also some calcium and make sure you're walking.

My DEXA scan last year showed I wasn't improving even with calcium and Boniva but it is no wonder because I didn't know I was a Celiac. I think I will take your advice. I will take the multivitamin instead of extra B12 and I will add extra iron. I was told you should take B12 and iron together. I do take calcium with vitamin D but I can't remember how much I should be taking per day. I have been osteopenic for about 6 years. I will also add a pill of Folic acid and B1.My doctor didn't mention my anemia, maybe because it was 0.5 away from being abnormal so it didn't show up as a red flag. She plans to recheck my labs in 4 months but did not give any advice on what suppliments to take. I asked for a copy of my labs so I could look them over myself.

Emilushka Contributor

Given that you're still recovering from the Celiac itself, your doc may be trying to avoid making you take a bunch of pills because some of this will heal itself on its own. Maybe she's waiting to see where things are in 4 months before making any judgments about what you're actually lacking for real and what's just a consequence of Celiac (which will go away as you heal! YAY!)

If you're taking your multi, you can add a single calcium pill to it and you'd be getting "extra" and hopefully enough. After 4 months, you could find out if that's sufficient when you go to see your doc.

If you're not menstruating anymore, ask your doc after the 4 months to see if you're taking too much iron. You won't be losing it as regularly if you don't have a period.

bincongo Contributor

Given that you're still recovering from the Celiac itself, your doc may be trying to avoid making you take a bunch of pills because some of this will heal itself on its own. Maybe she's waiting to see where things are in 4 months before making any judgments about what you're actually lacking for real and what's just a consequence of Celiac (which will go away as you heal! YAY!)

If you're taking your multi, you can add a single calcium pill to it and you'd be getting "extra" and hopefully enough. After 4 months, you could find out if that's sufficient when you go to see your doc.

If you're not menstruating anymore, ask your doc after the 4 months to see if you're taking too much iron. You won't be losing it as regularly if you don't have a period.

You know that really makes sense. Now I have about 6 bottles of extra vitamin's and minerals so my plan is to use them up since I am a little deficient for now and when they are gone I will go back to the multivitamin and calcium only. It won't affect my blood work 4 months from now.

Emilushka Contributor

That sounds totally reasonable. Just make sure you double-check with your doc in 4 months about the iron. It is possible to have too much iron.


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



Celiac.com Sponsor (A8-M):



ravenwoodglass Mentor

If you are taking a vitamin with folate that can make the B12 reading higher than it really is on a blood test in addition many of the ranges for B12 are actually too low. If you level was below 500 you dhould be supplementing. Also it can take a long time after your body stops being able to utilize B12 before the blood tests will drop enough for you to show as deficient. In addition celiac damage can keep us from absorbing B12 through regular supplements and our food. Since you are showing neuro signs it isn't going to hurt to take a sublingual B12 for a bit to see if it helps. With osteopenia it is a good idea to supplement D3 and calcium for a bit and make sure you are doing some weight bearing excercise.

Marilyn R Community Regular

Thanks for the great information, Ravenwood. xox

bincongo Contributor

If you are taking a vitamin with folate that can make the B12 reading higher than it really is on a blood test in addition many of the ranges for B12 are actually too low. If you level was below 500 you dhould be supplementing. Also it can take a long time after your body stops being able to utilize B12 before the blood tests will drop enough for you to show as deficient. In addition celiac damage can keep us from absorbing B12 through regular supplements and our food. Since you are showing neuro signs it isn't going to hurt to take a sublingual B12 for a bit to see if it helps. With osteopenia it is a good idea to supplement D3 and calcium for a bit and make sure you are doing some weight bearing excercise.

My B12 level was 583. My mulivitamin contains 50mcg of B12 and 400mcg of Folic acid and 800IU of plain D. I have picked up a bottle of Vitamin D3 2000IU in each softgel and Vitamin B12 250mcg in a tablet. Would you suggest I use the extra D3 and B12?

ravenwoodglass Mentor

My B12 level was 583. My mulivitamin contains 50mcg of B12 and 400mcg of Folic acid and 800IU of plain D. I have picked up a bottle of Vitamin D3 2000IU in each softgel and Vitamin B12 250mcg in a tablet. Would you suggest I use the extra D3 and B12?

I would go ahead with the D3 for a bit, have your doctor check your levels after a couple months and if the levels are then normal you could cut the D3 back to every other day or three days. You don't want to little D3 but you also don't want too much. If your having neuro symptoms you would want to take a sublingual B12 until you are healed fully gut wise. If you intestines are compromised you won't be able to absorb B12 from a regular swallowed tablet. That is the reason for the sublingual. The amount of B12 will seem very high but B12 is a water soluable vitamin and any excess your body can't use will simply be excreted. The sublingual dissolves under your tongue and gets into the blood stream bypassing the damage to the intestines. After you have healed then you can switch to the regular swallowed variety of the B12.

bincongo Contributor

I would go ahead with the D3 for a bit, have your doctor check your levels after a couple months and if the levels are then normal you could cut the D3 back to every other day or three days. You don't want to little D3 but you also don't want too much. If your having neuro symptoms you would want to take a sublingual B12 until you are healed fully gut wise. If you intestines are compromised you won't be able to absorb B12 from a regular swallowed tablet. That is the reason for the sublingual. The amount of B12 will seem very high but B12 is a water soluable vitamin and any excess your body can't use will simply be excreted. The sublingual dissolves under your tongue and gets into the blood stream bypassing the damage to the intestines. After you have healed then you can switch to the regular swallowed variety of the B12.

Sounds like a plan. I had sublingual of B6 and B12 together in one tablet but I don't want to add more B6 since I was high. I had taken that before my blood work. I can look for sublingual for only B12 and I will add the D3 for awhile.

Archived

This topic is now archived and is closed to further replies.

  • 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. - trents replied to SamAlvi's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      5

      High TTG-IgG and Normal TTG-IgA

    2. - SamAlvi replied to SamAlvi's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      5

      High TTG-IgG and Normal TTG-IgA

    3. - Jsingh replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Son's legs shaking

    4. - lizzie42 posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Son's legs shaking

    5. - trents replied to Paulaannefthimiou's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Bob red mill gluten free oats

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

    • Total Members
      132,868
    • Most Online (within 30 mins)
      7,748

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

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • trents
      Currently, there are no tests for NCGS. Celiac disease must first be ruled out and we do have testing for celiac disease. There are two primary test modalities for diagnosing celiac disease. One involves checking for antibodies in the blood. For the person with celiac disease, when gluten is ingested, it produces an autoimmune response in the lining of the small bowel which generates specific kinds of antibodies. Some people are IGA deficient and such that the IGA antibody tests done for celiac disease will have skewed results and cannot be trusted. In that case, there are IGG tests that can be ordered though, they aren't quite as specific for celiac disease as the IGA tests. But the possibility of IGA deficiency is why a "total IGA" test should always be ordered along with the TTG-IGA. The other modality is an endoscopy (scoping of the upper GI track) with a biopsy of the small bowel lining. The aforementioned autoimmune response produces inflammation in the small bowel lining which, over time, damages the structure of the lining. The biopsy is sent to a lab and microscopically analyzed for signs of this damage. If the damage is severe enough, it can often be spotted during the scoping itself. The endoscopy/biopsy is used as confirmation when the antibody results are positive, since there is a small chance that elevated antibody test scores can be caused by things other than celiac disease, particularly when the antibody test numbers are not particularly high. If the antibody test numbers are 10x normal or higher, physicians will sometimes declare an official diagnosis of celiac disease without an endoscopy/biopsy, particularly in the U.K. Some practitioners use stool tests to detect celiac disease but this modality is not widely recognized in the medical community as valid. Both celiac testing modalities outlined above require that you have been consuming generous amounts of gluten for weeks/months ahead of time. Many people make the mistake of experimenting with the gluten free diet or even reducing their gluten intake prior to testing. By doing so, they invalidate the testing because antibodies stop being produced, disappear from the blood and the lining of the small bowel begins to heal. So, then they are stuck in no man's land, wondering if they have celiac disease or NCGS. To resume gluten consumption, i.e., to undertake a "gluten challenge" is out of the question because their reaction to gluten is so strong that it would endanger their health. The lining of the small bowel is the place where all of the nutrition in the food we consume is absorbed. This lining is made up of billions of microscopically tiny fingerlike projections that create a tremendous nutrient absorption surface area. The inflammation caused by celiac disease wears down these fingers and greatly reduces the surface area needed for nutrient absorption. Thus, people with celiac disease often develop iron deficiency anemia and a host of other vitamin and mineral deficiencies. It is likely that many more people who have issues with gluten suffer from NCGS than from celiac disease. We actually know much more about the mechanism of celiac disease than we do about NCGS but some experts believe NCGS can transition into celiac disease.
    • SamAlvi
      Thank you for the clarification and for taking the time to explain the terminology so clearly. I really appreciate your insight, especially the distinction between celiac disease and NCGS and how anemia can point more toward celiac. This was very helpful for me.
    • Jsingh
      Hi,  My 7 year daughter has complained of this in the past, which I thought were part of her glutening symptom, but more recently I have come to figure out it's part of her histamine overload symptom. This one symptom was part of her broader profile, which included irritability, extreme hunger, confusion, post-nasal drip. You might want to look up "histamine intolerance". I wish I had known of this at the time of her diagnosis, life would have been much easier.  I hope you are able to figure out. 
    • lizzie42
      My 5yo was diagnosed with celiac last year by being tested after his sister was diagnosed. We are very strict on the gluten-free diet, but unsure what his reactions are as he was diagnosed without many symptoms other than low ferritin.  He had a school party where his teacher made gluten-free gingerbread men. I almost said no because she made it in her kitchen but I thought it would be ok.  Next day and for a few after his behavior is awful. Hitting, rude, disrespectful. Mainly he kept saying his legs were shaking. Is this a gluten exposure symptom that anyone else gets? Also the bad behavior? 
    • trents
      Not necessarily. The "Gluten Free" label means not more than 20ppm of gluten in the product which is often not enough for super sensitive celiacs. You would need to be looking for "Certified Gluten Free" (GFCO endorsed) which means no more than 10ppm of gluten. Having said that, "Gluten Free" doesn't mean that there will necessarily be more gluten than "Certified Gluten" in any given batch run. It just means there could be. 
×
×
  • 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.