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

Pernicious Anemia

libbyann

By libbyann
in Related Issues & Disorders

Recommended Posts

libbyann Rookie
libbyann
Posted

I've just started reading the gluten-free forums, I did a search for pernicious anemia and didn't find what I wanted, so I thought I'd ask. I identified wheat as the source of my stomach problems about 8 years ago (one of my doctors later agreed), and then 2 1/2 years ago, I was diagnosed with pernicious anemia. I didn't completely stop eating wheat until recently - I'm a slow learner!

Anyway, I've heard pernicious anemia can be caused by gluten intolerance. So my question is, if I stop eating gluten, will the anemia eventually reverse itself? How would I know? Would it show up in blood work? I know some vitamins can cause harm if you take too much of them, what if I keep taking B12 even if I get to where I don't need it anymore?

thanks,

LibbyAnn

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

Celiac.com Sponsor (A8-M):


VioletBlue Contributor
VioletBlue
Posted

The body throws off most excess B vitamins so not to worry about that: Open Original Shared Link

Iron is another story, you can overdose on it, but I'm taking huge doses of an iron complex and have yet to even approach normal. From everything I've read and experienced, getting vitamin and mineral levels back up to norm is tough initially. I've been at it nine months now and I'm still not there.

Violet

I've just started reading the gluten-free forums, I did a search for pernicious anemia and didn't find what I wanted, so I thought I'd ask. I identified wheat as the source of my stomach problems about 8 years ago (one of my doctors later agreed), and then 2 1/2 years ago, I was diagnosed with pernicious anemia. I didn't completely stop eating wheat until recently - I'm a slow learner!

Anyway, I've heard pernicious anemia can be caused by gluten intolerance. So my question is, if I stop eating gluten, will the anemia eventually reverse itself? How would I know? Would it show up in blood work? I know some vitamins can cause harm if you take too much of them, what if I keep taking B12 even if I get to where I don't need it anymore?

thanks,

LibbyAnn

trents Grand Master
trents
Posted
I've just started reading the gluten-free forums, I did a search for pernicious anemia and didn't find what I wanted, so I thought I'd ask. I identified wheat as the source of my stomach problems about 8 years ago (one of my doctors later agreed), and then 2 1/2 years ago, I was diagnosed with pernicious anemia. I didn't completely stop eating wheat until recently - I'm a slow learner!

Anyway, I've heard pernicious anemia can be caused by gluten intolerance. So my question is, if I stop eating gluten, will the anemia eventually reverse itself? How would I know? Would it show up in blood work? I know some vitamins can cause harm if you take too much of them, what if I keep taking B12 even if I get to where I don't need it anymore?

thanks,

LibbyAnn

Welcome, libbyann. I'll deal with your questions each in turn.

1. I do not believe that pernicious anemia is caused by gluten intolerance but they are both genetically-based and like gluten intolerance (most of us here call it celiac disease), pernicious anemia may have autoimmune component.

2. If you stop eating gluten, your pernicious anemia will not be affected but you will feel better and your general health will improve. Celiacs even without pernicious anemia are commonly anemic because their damaged small intestine lining doesn't assimilate iron very well, or for that matter, many other vitamins and minerals. If you have celiac diseas and pernicious anemia you have a double wammy problem with iron uptake.

3. "Would it show up in my blood work? How would I know?" Pernicious anemia is caused by the body's inability to produce something called "intrinsic factor". It is an enzyme produced in the gut necessary to assimilate iron. That can be tested for by blood work, at least indirectly.

4. B12 is a water-soluble nontoxic vitamin. You can take gobs of it and it won't hurt you. The excess will be excreted in your urine. People with pernicious anemia have two options: B12 injections or taking huge amounts of oral B12, say 4 mg daily. Recent research shows that people with pernicious anemia have not totally lost the ability to absorb B12 from the diet since there are, apparently, some alternate biochemical pathways for absorbing it that don't require intrinsic factor. However, this alternative pathway is very inefficient so you must consume very large quantities of B12 orally if this is to be a viable option. You will always, always need to either have injections or take huge oral doses of B12. Pernicious anemia does not go away and neither does celiac disease.

Hope this helps, Steve

ravenwoodglass Mentor
ravenwoodglass
Posted

My first question would be did your doctor test for intrinsic factor or did he just check your B12 levels? True P. Anemia is caused because your body does not produce the intrinsic factor that is needed to 'get' the B12 into your bloodstream. In Celiacs the villi that are damaged are the same ones that you need to produce the intrinsic factor. For people with celiac or gluten intolerance once the villi heal completely your body will be able to utilize B12 again. This can a bit of time. Whatever the reason for your low B12 levels you will get a lot of benefit from a good sublingual B12 supplement. Make sure it is sublingual that way of delivery bypasses the intestines alltogether and makes sure you get it into your system. B12 is not a vitamin that is toxic in large amounts so that is not a concern, but making sure it is gluten-free is.

Welcome to the world of gluten free living and to the boards.

tiffjake Enthusiast
tiffjake
Posted
. You will always, always need to either have injections or take huge oral doses of B12. Pernicious anemia does not go away and neither does celiac disease.

Hope this helps, Steve

Steve- By oral, do you mean sublingual??

I have pernicious anemia, and after years of bruises with the injections, I now take sublingual B12. It is not huge amounts. I take one tablet a day. My B12 is normal now (with the daily B12). I do not consider a daily sublingual to be a huge amount. I use GNC. They are sugar free, gluten free, and lots of other stuff free.

LibbyAnn- Welcome! You can take injections for pernicious anemia, or sublingual tablets that you place under your tounge and they are absorbed through the mouth instead of the stomach lining. That is what I do. :)

libbyann Rookie
libbyann
Posted
  • Author

LibbyAnn- Welcome! You can take injections for pernicious anemia, or sublingual tablets that you place under your tounge and they are absorbed through the mouth instead of the stomach lining. That is what I do. :)

tiffjake Enthusiast
tiffjake
Posted
LibbyAnn- Welcome! You can take injections for pernicious anemia, or sublingual tablets that you place under your tounge and they are absorbed through the mouth instead of the stomach lining. That is what I do. :)

Hi, Tiffany. I love your picture! I miss ballet, too. I have lupus in addition to gluten intolerance, and my joints just won't do plies anymore.

I took B12 shots for a year before I convinced the doctors to let me switch to sublinguals. It took 4-5 hours to go and get a shot, which was ridiculous. Sublinguals are hard to find, though. Sometimes I resort to regular oral supplements when I can't find sublinguals because I don't want to take no B12 at all, but I'm not sure it works as well.

I would suggest GNC. They are in almost every mall! :) They are pretty cheap, and are gluten-free (and other stuff like corn and soy, but I don't pay attention to all of that b/c I am just gluten free).

Also, even if you are not "diagnosed" with the lack of IF, then you can still take sublingual B12 for the health benefits. Like someone else said above, you can't overdose on it :)

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

Celiac.com Sponsor (A8-M):


georgie Enthusiast
georgie
Posted

I have Pernicious Anaemia and also Celiac/Gluten Intolerance. Its interesting to hear that many have felt that sublingual B12 works for them - as it didn't for me. I have had to have a year of nearly weekly and painful injections. I take sublinguals between jabs but they seem to do nothing. I have just ordered a B12 nasal spray from my compounding chemist, and will try that and see if that works a little. I just want to add that the blood test for Intrinsic Factor throws about 50% false negatives - so it can be hard to dx autoimmune PA from a more dietary type of low B12 deficiency. Some Drs use tablets as a means to dx the difference although I am not sure if I would want to suffer a year or two - trying to get a dx that way. My Dr was able to dx my PA with a positive Paritiel Cell Antibody result , and my history of 3 other autoimmune diseases and my slow response to sublinguals and other oral B12 supps. Once you start B12 the serum levels may show a false high so symptoms may not match the blood test result accurately. I need my B12 kept >1000 now to even feel half normal - and can still feel my jab when it wears off - usually about day 12 now... 9 this is great - was day 5 , then day 7, then day 8 ... ) I will post back if the methylcobalamin nasal spray works :)

Archived

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

Go to topic listing

  • 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. sc'Que?
      - sc'Que? commented on Celiac.com Sponsor: Review's article in Product Reviews
      1

      Bold Taste, No Alcohol & Crafted to Remove Gluten: Daura Non-Alc Beer Takes Alcohol-Free Beer to the Next Level

      @Daura Damm: Can we get a gluten-free Imperial Oatmeal Stout, please? Please?!?
    2. Mari
      - Mari replied to Jmartes71's topic in Related Issues & Disorders
      21

      My only proof

      I think, after reading this, that you areso traumatized by not being able yo understand what your medical advisors have been what medical conditions are that you would like to find a group of people who also feel traumatized who would agree with you and also support you. You are on a crusade much as the way the US Cabinet official, the Health Director of...
    3. Jmartes71
      - Jmartes71 replied to Jmartes71's topic in Related Issues & Disorders
      21

      My only proof

      Thus has got to STOP , medical bit believing us! I literally went through 31 years thinking it was just a food allergy as its downplayed by medical if THEY weren't the ones who diagnosed us! Im positive for HLA-DQ2 which is first celiac patient per Iran and Turkey. Here in the States especially in Cali its why do you feel that way? Why do you think your celiac...
    4. knitty kitty
      - knitty kitty replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      44

      Supplements for those Diagnosed with Celiac Disease

      @Scatterbrain, Thiamine Vitamin B1 and amino acid Taurine work together. Our bodies can make Taurine from meats consumed. Our bodies cannot make Thiamine and must consume thiamine from food. Meat is the best source of B vitamins like Thiamine. Vegetarians may not make sufficient taurine since they don't eat meat sources of taurine...
    5. knitty kitty
      - knitty kitty replied to Jmartes71's topic in Related Issues & Disorders
      21

      My only proof

      @Jmartes71, I went to Doterra's site and had a look around. The Doterra TerraZyme supplement really jumped out at me. Since we, as Celiacs, often have digestive problems, I looked at the ingredients. The majority of the enzymes in this supplement are made using black mold, Aspergillus! Other enzymes are made by yeast Saccharomyces! Considering...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,547
    • Most Online (within 30 mins)
      7,748
    GSward
    Newest Member
    GSward
    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

    • Mari
      My only proof

      By Mari · Posted

      I think, after reading this, that you areso traumatized by not being able yo understand what your medical advisors have been  what medical conditions are that you would like to find a group of people who also feel traumatized who would agree with you and also support you. You are on a crusade much as the way the US Cabinet  official, the Health Director of our nation is in trying to change what he considers outdated and incorrect health advisories. He does not have the education, background or experience to be in the position he occupies and is not making beneficial decisions. That man suffered a terrible trauma early in his life when his father was assonated. We see now how he developed and worked himself into a powerful position.  Unless you are willing to take some advice or  are willing to use a few of the known methods of starting on a path to better health then not many of us on this Celiac Forum will be able to join you in a continuing series of complaints about medical advisors.    I am almost 90 years old. I am strictly gluten free. I use 2 herbs to help me stay as clear minded as possible. You are not wrong in complaining about medical practitioners. You might be more effective with a clearer mind, less anger and a more comfortable life if you would just try some of the suggestions offered by our fellow celiac volunteers.  
    • Jmartes71
      My only proof

      By Jmartes71 · Posted

      Thus has got to STOP , medical bit believing us! I literally went through 31 years thinking it was just a food allergy as its downplayed by medical if THEY weren't the ones who diagnosed us! Im positive for HLA-DQ2 which is first celiac patient per Iran and Turkey. Here in the States especially in Cali its why do you feel that way? Why do you think your celiac? Your not eating gluten so its something else.Medical caused me depression. I thought I was safe with my former pcp for 25 years considering i thought everything I went through and going through will be available when I get fired again for health. Health not write-ups my health always come back when you're better.Im not and being tossed away at no fault to my own other than shitty genes.I was denied disability because person said he didn't know how to classify me! I said Im celiac, i have ibs, hernia, sciatica, high blood pressure, in constant pain have skin and eye issues and menopause intensified everything. With that my celiac nightmare began to reprove my disregarded disease to a bunch of clowns who think they are my careteam when they said I didn't have...I feel Im still breathing so I can fight this so no body else has to deal with this nightmare. Starting over with " new care team" and waisting more time on why I think I am when diagnosed in 1994 before food eliminated from my diet. P.s everything i went through I did write to medical board, so pretty sure I will continue to have a hard time.
    • knitty kitty
      Supplements for those Diagnosed with Celiac Disease

      By knitty kitty · Posted

      @Scatterbrain, Thiamine Vitamin B1 and amino acid Taurine work together.  Our bodies can make Taurine from meats consumed.  Our bodies cannot make Thiamine and must consume thiamine from food.  Meat is the best source of B vitamins like Thiamine.   Vegetarians may not make sufficient taurine since they don't eat meat sources of taurine.  Seaweed is the best vegetarian source of taurine. Vegetarians may not consume sufficient Thiamine since few veggies are good sources.  Whole grains, legumes, and nuts and seeds contain thiamine.  Many of these sources can be hard to digest and absorb for people with Celiac disease.   You may find taking the forms of thiamine called Benfotiamine or TTFD (tetrahydrofurfuryl disulfide) and a B Complex will give the benefits you're looking for better than taurine alone.  
    • knitty kitty
      My only proof

      By knitty kitty · Posted

      @Jmartes71, I went to Doterra's site and had a look around.  The Doterra TerraZyme supplement really jumped out at me.  Since we, as Celiacs, often have digestive problems, I looked at the ingredients.  The majority of the enzymes in this supplement are made using black mold, Aspergillus!  Other enzymes are made by yeast Saccharomyces!  Considering the fact that Celiac often have permeable intestines (leaky gut syndrome), I would be very hesitant to take a product like this.  Although there may not be live black mold or yeast in the product, the enzymes may still cause an immune system response which would definitely cause inflammation throughout the body.   Skin, eyes, and intestines are all made from the same basic type of cells.  Your skin on the outside and eyes can reflect how irritated the intestines are on the inside.  Our skin, eyes, and intestines all need the same vitamins and nutrients to be healthy:  Vitamin A, Niacin B3 and Tryptophan, Riboflavin B2, Biotin B7, Vitamin C, and Omega Threes.  Remember that the eight B vitamins work together.  Just taking high doses of just one, vitamin like B12, can cause a deficiency in the others.  Taking high doses of B12 can mask a Folate B9 deficiency.  If you take B12, please take a B Complex, too.  Thiamine B1 can be taken in high doses safely without toxicity.  Thiamine is needed by itself to produce energy so every cell in the body can function, but Thiamine also works with the other B vitamins to make life sustaining enzymes and digestive enzymes.  Deficiencies in either Niacin, Vitamin C, or Thiamine can cause digestive problems resulting in Pellagra, Scurvy, and Gastrointestinal Beriberi.   If you change your diet, you will change your intestinal microbiome.  Following the Autoimmune Protocol Diet, a Paleo diet, will starve out SIBO bacteria.  Thiamine keeps bacteria in check so they don't get out of control as in SIBO.  Thiamine also keeps MOLDS and Yeasts from overgrowth.   Menopause symptoms and menstrual irregularities are symptomatic of low Vitamin D.   Doctors are not as knowledgeable about malnutrition as we need them to be.  A nutritionist or dietician would be more helpful.   Take control of your diet and nutrition.  Quit looking for a pill that's going to make you feel better overnight.  The Celiac journey is a marathon, not a sprint.   "Let food be your medicine, and let medicine be your food."
    • RUKen
      Are Lindt chocolate balls gluten free?

      By RUKen · Posted

      The Lindt (Lindor) dairy-free oat milk truffles are definitely gluten-free, and (last time I checked) so are the white chocolate truffles and the mint chocolate truffles. 
×
×
  • 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.