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

Recommended Posts

libbyann Rookie

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

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
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

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
. 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- 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
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

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.

  • 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. - knitty kitty replied to pothosqueen's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      16

      Positive biopsy

    2. - knitty kitty replied to Jordan Carlson's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Fruits & Veggies

    3. - knitty kitty replied to pothosqueen's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      16

      Positive biopsy

    4. - trents replied to pothosqueen's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      16

      Positive biopsy

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

    • Total Members
      133,019
    • Most Online (within 30 mins)
      7,748

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

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Who's Online (See full list)

    • There are no registered users currently online
  • Upcoming Events

  • Posts

    • knitty kitty
      In the study linked above, the little girl switched to a gluten free diet and gained enough weight that that fat pad was replenished and surgery was not needed.   Here's the full article link... Superior Mesenteric Artery Syndrome in a 6-Year-Old Girl with Final Diagnosis of Celiac Disease https://pmc.ncbi.nlm.nih.gov/articles/PMC6476019/
    • knitty kitty
      Hello, @Jordan Carlson, So glad you're feeling better.   Tecta is a proton pump inhibitor.  PPI's also interfere with the production of the intrinsic factor needed to absorb Vitamin B12.  Increasing the amount of B12 you supplement has helped overcome the lack of intrinsic factor needed to absorb B12. Proton pump inhibitors also reduce the production of digestive juices (stomach acids).  This results in foods not being digested thoroughly.  If foods are not digested sufficiently, the vitamins and other nutrients aren't released from the food, and the body cannot absorb them.  This sets up a vicious cycle. Acid reflux and Gerd are actually symptoms of producing too little stomach acid.  Insufficient stomach acid production is seen with Thiamine and Niacin deficiencies.  PPI's like Tecta also block the transporters that pull Thiamine into cells, preventing absorption of thiamine.  Other symptoms of Thiamine deficiency are difficulty swallowing, gagging, problems with food texture, dysphagia. Other symptoms of Thiamine deficiency are symptoms of ADHD and anxiety.  Vyvanse also blocks thiamine transporters contributing further to Thiamine deficiency.  Pristiq has been shown to work better if thiamine is supplemented at the same time because thiamine is needed to make serotonin.  Doctors don't recognize anxiety and depression and adult onset ADHD as early symptoms of Thiamine deficiency. Stomach acid is needed to digest Vitamin C (ascorbic acid) in fruits and vegetables.  Ascorbic acid left undigested can cause intestinal upsets, anxiety, and heart palpitations.   Yes, a child can be born with nutritional deficiencies if the parents were deficient.  Parents who are thiamine deficient have offspring with fewer thiamine transporters on cell surfaces, making thiamine deficiency easier to develop in the children.  A person can struggle along for years with subclinical vitamin deficiencies.  Been here, done this.  Please consider supplementing with Thiamine in the form TTFD (tetrahydrofurfuryl disulfide) which helps immensely with dysphagia and neurological symptoms like anxiety, depression, and ADHD symptoms.  Benfotiamine helps with improving intestinal health.  A B Complex and NeuroMag (a magnesium supplement), and Vitamin D are needed also.
    • knitty kitty
      @pothosqueen, Welcome to the tribe! You'll want to get checked for nutritional deficiencies and start on supplementation of B vitamins, especially Thiamine Vitamin B 1.   There's some scientific evidence that the fat pad that buffers the aorta which disappears in SMA is caused by deficiency in Thiamine.   In Thiamine deficiency, the body burns its stored fat as a source of fuel.  That fat pad between the aorta and digestive system gets used as fuel, too. Ask for an Erythrocyte Transketolace Activity test to look for thiamine deficiency.  Correction of thiamine deficiency can help restore that fat pad.   Best wishes for your recovery!   Interesting Reading: Superior Mesenteric Artery Syndrome in a 6-Year-Old Girl with Final Diagnosis of Celiac Disease https://pubmed.ncbi.nlm.nih.gov/31089433/#:~:text=Affiliations,tissue and results in SMAS.  
    • trents
      Wow! You're pretty young to have a diagnosis of SMA syndrome. But youth also has its advantages when it comes to healing, without a doubt. You might be surprised to find out how your health improves and how much better you feel once you eliminate gluten from your diet. Celiac disease is an autoimmune disorder that, when gluten is consumed, triggers an attack on the villous lining of the small bowel. This is the section of the intestines where all our nutrition is absorbed. It is made up of billions of tiny finger-like projections that create a tremendous surface area for absorbing nutrients. For the person with celiac disease, unchecked gluten consumption generates inflammation that wears down these fingers and, over time, greatly reduces the nutrient absorbing efficiency of the small bowel lining. This can generate a whole host of other nutrient deficiency related medical problems. We also now know that the autoimmune reaction to gluten is not necessarily limited to the lining of the small bowel such that celiac disease can damage other body systems and organs such as the liver and the joints and cause neurological problems.  It can take around two years for the villous lining to completely heal but most people start feeling better well before then. It's also important to realize that celiac disease can cause intolerance to some other foods whose protein structures are similar to gluten. Chief among them are dairy and oats but also eggs, corn and soy. Just keep that in mind.
    • pothosqueen
×
×
  • 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.