Jump to content

  • You are not alone. Join Celiac.com for trusted gluten-free answers and forum support.



  • Celiac.com Sponsor (A1):
    Celiac.com Sponsor (A1-M):

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



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. suek54
      - suek54 replied to BelleDeJour's topic in Dermatitis Herpetiformis
      20

      Dermatitis Herpetiformis - follow up dermatology appointment coming up

      KnittyKitty, quite agree, more tests should be standard, mandatory even, but they simply are not in the UK. Younger people seem to be tested more older people. Limited funds perhaps, its not right and would be vehemently denied by the-powers-that-be, but there you are. More and more I've found that as I get older I need to do more of the detective...
    2. BelleDeJour
      - BelleDeJour replied to BelleDeJour's topic in Dermatitis Herpetiformis
      20

      Dermatitis Herpetiformis - follow up dermatology appointment coming up

      Oh wow, I also have vitiligo on my hands and just in the last few days (when I have been brave enough to actually look at my skin now it's a bit better) on my feet a bit. A derm years ago noticed it and said 'stress', I thought probably topical steroid use but what you have written, fits.
    3. knitty kitty
      - knitty kitty replied to BelleDeJour's topic in Dermatitis Herpetiformis
      20

      Dermatitis Herpetiformis - follow up dermatology appointment coming up

      @suek54, Testing for nutritional deficiencies is considered part of proper follow up care for those with Celiac Disease and Dermatitis Herpetiformis. The malabsorption of nutrients is common in both. The problem is doctors don't know much about nutrition. Doctors aren't required to take many hours of instruction in nutrition. They are taught...
    4. suek54
      - suek54 replied to BelleDeJour's topic in Dermatitis Herpetiformis
      20

      Dermatitis Herpetiformis - follow up dermatology appointment coming up

      Hi KnittyKitty, Like Belle I have read all your info with great interest and made notes to do a bit of research. It really is a minefield isn't it? Im already on that autoimmune bandwagon you mention - vitiligo, premature ovarian failure (at 39), hypothyroidism, Addison's and now dermatitis herpetiformis. I'm stopping there, any more would just...
    5. knitty kitty
      - knitty kitty replied to BelleDeJour's topic in Dermatitis Herpetiformis
      20

      Dermatitis Herpetiformis - follow up dermatology appointment coming up

      @BelleDeJour, The genetics are fascinating. I'm very curious about what your genetic test would show. My dad was a smoker, too. Tobacco acts as an antihistamine. Histamine levels increase in the immune response to gluten. My mother had headaches, gastro symptoms, and thyroid problems. She developed nodules and had to have her thyroid removed...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      134,121
    • Most Online (within 30 mins)
      10,442
    foxymama564
    Newest Member
    foxymama564
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.7k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • suek54
      Dermatitis Herpetiformis - follow up dermatology appointment coming up

      By suek54 · Posted

      KnittyKitty, quite agree, more tests should be standard, mandatory even,  but they simply are not in the UK.  Younger people seem to be tested more older people. Limited funds perhaps, its not right and would be vehemently denied by the-powers-that-be, but there you are. More and more I've found that as I get older I need to do more of the detective work myself. Thankfully, I  am able to do that but feel very sorry for those who can't.  Anyway, I have already gained so many helpful suggestions on this forum and its just so nice to know that I'm not the only one with this wretched condition.  We live to fight another day🤗 Sue  
    • BelleDeJour
      Dermatitis Herpetiformis - follow up dermatology appointment coming up

      By BelleDeJour · Posted

      Oh wow, I also have vitiligo on my hands and just in the last few days (when I have been brave enough to actually look at my skin now it's a bit better) on my feet a bit. A derm years ago noticed it and said 'stress', I thought probably topical steroid use but what you have written, fits. 
    • knitty kitty
      Dermatitis Herpetiformis - follow up dermatology appointment coming up

      By knitty kitty · Posted

      @suek54, Testing for nutritional deficiencies is considered part of proper follow up care for those with Celiac Disease and Dermatitis Herpetiformis.  The malabsorption of nutrients is common in both.  The problem is doctors don't know much about nutrition. Doctors aren't required to take many hours of instruction in nutrition.  They are taught outdated information which doesn't apply to clinical practice.  They attend medical schools funded by pharmaceutical companies and taught to prescribe drugs to treat symptoms, not discover the source of the illness.  There are many diseases that would benefit from proper nutrition.  Arthritis, MS, vitiligo, infertility,  and Diabetes are just a few. Do be sure to visit Dr. Lonsdale and Dr. Marrs' site where I learned so much about thiamine... https://hormonesmatter.com/genetic-thiamine-deficiency-ravaged-my-family/ https://hormonesmatter.com/familial-beriberi-discovering-lifelong-genetic-thiamine-deficiency/ https://hormonesmatter.com/thiamine-deficiency-causes-problems/
    • suek54
      Dermatitis Herpetiformis - follow up dermatology appointment coming up

      By suek54 · Posted

      Hi KnittyKitty, Like Belle I have read all your info with great interest and made notes to do a bit of research. It really is a minefield isn't it? Im already on that autoimmune bandwagon you mention - vitiligo, premature ovarian failure (at 39), hypothyroidism, Addison's and now dermatitis herpetiformis. I'm stopping there,  any more would just be greedy don't you think!😂 One of my two brothers had rheumatoid arthritis, his daughter has MS, my other brother had pernicious anaemia, all autoimmune. The force seems to be strong in our family. Interestingly,  my grandmother had frequent bouts of sickness and diarrhoea all her life, poor love. No-one ever got to the bottom of it. I wonder if she too had coeliacs? dermatitis herpetiformis is horrid but the dapsone 100mg has now cleared my skin. Im still getting some itching and prickling, but nothing to see. Im hoping that will stop in time. My bloods are holding well, no side effects that I'm aware of.  You seem to have access to a lot more tests in the USA than we do here in UK. Our NHS is brilliant but only with private health insurance could we get all the tests you mention. Hey ho, perhaps I'll win the lottery then I shall have the whole raft of tests.  Thank you so much for all the info.  Sue      
    • knitty kitty
      Dermatitis Herpetiformis - follow up dermatology appointment coming up

      By knitty kitty · Posted

      @BelleDeJour, The genetics are fascinating.  I'm very curious about what your genetic test would show.  My dad was a smoker, too.  Tobacco acts as an antihistamine.  Histamine levels increase in the immune response to gluten.  My mother had headaches, gastro symptoms, and thyroid problems.  She developed nodules and had to have her thyroid removed.  This is common in thirty percent of patients with Hashimoto's thyroiditis.  I've got two Celiac genes, so they both must have had Celiac.    The thyroid and the pancreas use a great deal of thiamine, as do the brain and heart.  Thiamine deficiency can be localized in one organ.  Thiamine deficiency localized in the digestive system, Gastrointestinal Beriberi, has the same symptoms as Celiac Disease, abdominal pain, acid reflux, bloating, sibo, gastroparesis, diarrhea and constipation.  Thiamine deficiency localized in the pancreas reduces insulin production and results in diabetes.  In the thyroid, Hashimoto's is related to thiamine deficiency.  Headaches and migraines can be a result of thiamine deficiency.  My mother at 67 developed Glioblastoma Multiforme, brain cancer.  My dad had a Triple A (Abdominal Aortic Aneurysm) which is also linked to thiamine deficiency.  It was caught in time, but he later died of pneumonia after chemo for lung cancer at 81.  Thiamine deficiency is commonly found in all types of cancer.   I'm so glad you're going to look into Benfotiamine.  Do take all the rest of the B vitamins as well as Benfotiamine.  They all work together, but Thiamine also does a whole bunch of wonderful stuff by itself, so taking more than just the recommended daily allowance is beneficial.  Our metabolic need for thiamine increases when we're sick, emotionally stressed, or exercise regularly.  Thiamine in all its forms is safe and nontoxic.  There's no upper limit.  I've been taking high dose thiamine for over a decade.  Do get checked for other nutritional deficiencies like Vitamins D, A, and C, all very important in skin health, as well as magnesium (works with thiamine) and iron. I love your comment about "digesting the wealth of information" and it being gluten free!   There's no wealth like knowledge, no poverty like ignorance.  So thankful I can share the wealth!   Do keep us posted on your progress!
×
×
  • Create New...