Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • 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

Do I Really Have Pernicious Anemia?

chatycady

By chatycady
in Related Issues & Disorders

Recommended Posts

chatycady Explorer
chatycady
Posted

I was diagnosed with pernicious anemia some years ago. I am now pretty well all better, but I still take the B-12 shots. Do I really have pernicious anemia? Or was I anemic because of gluten? Anyone have any ideas on this? I don't wnat to get sick again, so I keep taking the shots.

My Dr. said I should quit the shots and see what happens. Is there a test I could take?

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

Celiac.com Sponsor (A8-M):


MaryJones2 Enthusiast
MaryJones2
Posted

How were you diagnosed? There are tests that can tell you if you have pernicious anemia vs. run of the mill B12 deficiency.

chatycady Explorer
chatycady
Posted
  • Author

Schillings test. But I guess I thought it wouldn't work again since I am not deficienct any longer. I also thought it wasn't used much anymore. Not accurate?

JennyC Enthusiast
JennyC
Posted
Schillings test. But I guess I thought it wouldn't work again since I am not deficienct any longer. I also thought it wasn't used much anymore. Not accurate?

I'm in a clinical laboratory science program right now, and they are teaching us that the Schillings test is used to diagnose B12 deficiency and pernicious anemia, so I think it's still pretty standard. I don't think it would hurt to go off your B12, just make sure that they are monitoring you for anemia.

MaryJones2 Enthusiast
MaryJones2
Posted

If it is truly pernicious anemia (and it sounds like it is) and you stop the injections you'll become anemic again as your body lacks intrinsic factor which is required to properly absorb b12 through normal digestion. Some people with pernicious anemia have impared ability to absorb but most have no ability to absorb it in the digestive tract. That's why it's necessary to bypass the digestive system with shots in pernicious anemia patients. There is really no harm in continuing the shots. I have weekly shots for years and can absolutely feel it when I miss a few.

chatycady Explorer
chatycady
Posted
  • Author

Thanks for the advice. I think I'll stick with the shots. Maybe when I'm 100% better I"ll go off the shots and see what happens. I had a lot more symptoms than just anemia before they found the anemia. So to play it safe I'll continue.

Every month when I take the shot, I wonder - Do I need it? :rolleyes:

MaryJones2 Enthusiast
MaryJones2
Posted

I know what you mean. I too have a lot of issues and I always question the medications or supplements that I take. Oddly, I don't with the b12 shots. I think it's because it's so easy just to take a shot every now and again and not have to worry about it!

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

Celiac.com Sponsor (A8-M):


NicoleAJ Enthusiast
NicoleAJ
Posted

My GI told me that he could test for intrinsic factor whether I was deficient or not, so he just did a simple blood test. I still take my shots now that I'm no longer deficient, but I definitely stretch them out a lot longer than I used to. Now that my B12 levels are so high from years of shots twice a month, I don't really need to worry about a sudden dip. B12 can stay in your system for a very long time, so by the time you get deficient, it means you've been deficient for a very long time. When I need a shot, I can definitely feel it throughout my body.

chatycady Explorer
chatycady
Posted
  • Author
My GI told me that he could test for intrinsic factor whether I was deficient or not, so he just did a simple blood test. I still take my shots now that I'm no longer deficient, but I definitely stretch them out a lot longer than I used to. Now that my B12 levels are so high from years of shots twice a month, I don't really need to worry about a sudden dip. B12 can stay in your system for a very long time, so by the time you get deficient, it means you've been deficient for a very long time. When I need a shot, I can definitely feel it throughout my body.

Do you have an digestive issues when you are low on B-12? I used to get indigestion and have "butterflies" in my stomach. I have delayed shots and get these symptoms. Just wondering.

Thanks

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      128,338
    • Most Online (within 30 mins)
      7,748
    jojocle
    Newest Member
    jojocle
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.1k
    • Total Posts
      70.8k
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • cristiana
      Neurologic symptoms - Muscle Twitching and Hand Tremors

      By cristiana · Posted

      I'd like to second supplementation.  Around the time of my diagnosis and for a good while afterwards I had twitching muscles, including my face, as well as pins and needles and numbness.  We do have tremors in my family anyway, regardless of being coeliac, so I can't really comment on that. If you can find out where you are with your iron levels and B12, that's a good start.  I am not sure where you are posting from but in the UK normal lab results for B12 are quite a bit lower than in other countries, so you might find if you are borderline you will get some improvement by continuing to supplement that.   I found taking magnesium also incredibly helpful against facial twitches. I don't know about you, but all these symptoms increased my anxiety levels as I was worried about them.  That only served to make the symptoms worse.  So it might be worth looking into addressing any underlying anxiety issues.   I still notice that if I'm nervous, or worried, my blood sugar levels are down, some of the symptoms comes back temporarily.  It's like there is still a bit of a weakness there.
    • knitty kitty
      SkinSafe

      By knitty kitty · Posted

      Hello, @Itsabit, Your journey sounds very similar to mine.   I'm very concerned about your diet since you say you don't eat a lot of meat, which is the main source of B vitamins.  Nutritional deficiencies go along with Celiac Disease.  Blood tests are not accurate measurements of deficiency states.  The body robs stored vitamins from organs to circulate in the bloodstream to supply the brain and heart.  You can have deficiency symptoms before blood levels change. I have a hypersensitivity to sulfites, so much so that I had to switch my toothpaste to one that doesn't contain Sodium Lauryl Sulfate.  SLS can cause oral irritation as a side effect, too.   My mouth would burn and I avoided certain foods.  Dapsone contains sulfites, as do antibiotics.  Treatment with sulfites can precipitate a Thiamine deficiency disorder because sulfites cut thiamine in two making it useless. https://pubmed.ncbi.nlm.nih.gov/35506963/ https://pmc.ncbi.nlm.nih.gov/articles/PMC10506142/ I have an allergy to nickel, also.  Zinc helps keep other metals in balance in the body.  Zinc is also terribly important to skin health and oral health. https://pubmed.ncbi.nlm.nih.gov/8445075/ https://pmc.ncbi.nlm.nih.gov/articles/PMC11274920/ https://pubmed.ncbi.nlm.nih.gov/1977254/ Thiamine (Vitamin B 1) deficiency disorder symptoms and altered thiamine metabolism can occur after radiation or chemo.   Thiamine and Niacin B 3 are important in nerve conduction.  When I was very malnourished, I had paresthesia that made me feel itchy all over, and made my dermatitis herpetiformis extremely unbearable.  The form of Niacin that causes flushing, Nicotinic Acid (not the same as nicotine in cigarettes) is beneficial because the flushing helps open the small capillaries in the skin which allows the antibodies to be cleared and disposed.  Pellagra can occur in Celiac Disease.   I had it, and my doctor didn't properly diagnose it, either.   I had a rash around my neck, Casal's Necklace, along with a blistering rash on my arms and any skin exposed to the sun.   https://pubmed.ncbi.nlm.nih.gov/8445075/ https://cgp.iiarjournals.org/content/10/4/169 https://pmc.ncbi.nlm.nih.gov/articles/PMC11722086/ https://pmc.ncbi.nlm.nih.gov/articles/PMC6780714/ https://pmc.ncbi.nlm.nih.gov/articles/PMC10229844/ https://pubmed.ncbi.nlm.nih.gov/1977254/ You should be checked for more than just B12 deficiency.  The eight B vitamins work together, and we need more of them when we're trying to heal.  They are water soluble, so the body can easily excrete them if not needed. Have you had your Vitamin D level checked?  Vitamin D regulates the immune system and lowers inflammation.   I hope you can find some benefit from my experiences.  Keep us posted on your progress.   P.S.  When trying not to itch the dermatitis herpetiformis, if you press gently on a large area (press with your whole hand) above the itchy spot, the itchiness goes away.  The bigger area of stimulation drowns out that one jangling dermatitis herpetiformis itchy nerve in the brain. For skin care products, I use tallow balm which is absorbed better into the skin than petroleum products or plant products.  Tallow balm (Vintage Traditions is my favorite) helps my Dermatitis Herpetiformis spots look and feel better quickly.  Tallow soap and olive oil soap is beneficial as well.
    • knitty kitty
      What should I do with these test results?

      By knitty kitty · Posted

      Hello, @Jack Common, I know how frustrating health mysteries can be. Perhaps you're having a reaction to the medication you were given for the giardiasis you mentioned in another post. The giardiasis infection would account for the high Igg results.  Have you been reinfected? The site I've linked below has lots of information about the long term consequences of being treated with a medication frequently prescribed for giardiasis infection.   https://hormonesmatter.com/metronidazole-toxicity-doctor-denial/ https://hormonesmatter.com/?s=metronidazole https://pmc.ncbi.nlm.nih.gov/articles/PMC3870550/ Please let us know if your symptoms may be due to this reaction to the prescription for giardiasis. Best wishes.
    • knitty kitty
      How many grams is there in one slice of wheat bread?

      By knitty kitty · Posted

      Hello, @Jack Common, I know how frustrating health mysteries can be. Perhaps you're having a reaction to the medication you were given for the giardiasis. The giardiasis infection would account for the high Igg results.  Have you been reinfected? The site I've linked below has lots of information about the long term consequences of being treated with a medication frequently prescribed for giardiasis infection.   https://hormonesmatter.com/metronidazole-toxicity-doctor-denial/ https://hormonesmatter.com/?s=metronidazole https://pmc.ncbi.nlm.nih.gov/articles/PMC3870550/ Please let us know if your symptoms may be due to this reaction to the prescription for giardiasis. Best wishes.
    • Itsabit
      SkinSafe

      By Itsabit · Posted

×
×
  • Create New...