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

Recommended Posts

chatycady Explorer

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

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

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
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

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

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

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

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
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.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,040
    • Most Online (within 30 mins)
      7,748

    whotgrips44
    Newest Member
    whotgrips44
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):




  • Who's Online (See full list)


  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Scott Adams
      I'm not sure if you found what other here have posted on oral thrush, but this might be helpful: https://www.celiac.com/search/?q="Oral thrush"&quick=1&updated_after=any&sortby=relevancy
    • Scott Adams
      If you have DH you will likely also want to avoid iodine, which is common in seafoods and dairy products, as it can exacerbate symptoms in some people. This article may also be helpful as it offers various ways to relieve the itch:  
    • trents
      Welcome to the forum, @JulieRe! You would do well to get checked for a candida infection of the gut. Yeast thrives on carbs so you might also look into a low carb diet. These kinds of things seem to be more common in the celiac community than in the general population. There is a growing body of evidence that the development of celiac disease is rooted in unhealthy gut biome conditions. It's good that you are getting that red spot on your tongue checked out soon. It's likely related to the thrush but I would also not rule out a neoplasm which you would certainly want to catch early.
    • cassondracm01
      Hi there! I have very similar dermatitis herpetiformis responses. The only thing that helps is dissolving a Benadryl pill and rubbing that on the painful itchy spots that arise on my knees, scalp, elbows. I have been working with a nutritionist who also has celiac we narrowed down to me only getting we certified gluten-free products - which I try the best I can. But then I have found products that use guar gum and other additive gums I have reactions as well. It was my plant based milk. I had to switch to Elmhurst it’s just nuts and milk- most of the time.   I hope that’s helpful! I’ll keep following:) we seem to have very similar reactions! 
    • JulieRe
      Hi,  My name is Julie and I am new to the forum.  I have been diagnosed with Celiac disease since 2006.  I follow a strict gluten free diet. In July I was diagnosed with oral thrush.  I had swollen lips, and my tongue was very red towards the front.  I also had a weird taste in my mouth and very dry mouth despite drinking lots of fluids.  I went to Urgent care and was prescribed fluconazole oral tablets for 5 days and it essentially cleared up.  Has anyone else had this happen?  It was so strange.  The doctor thought the thrush was from my mouth guard I wear at night.  Although my cleaning process had not changed. Also today I noticed an abnormal red spot on my tongue.  No other symptoms.  I will be calling my dentist.  But am curious if anyone has had trouble with yeast in their gut. Thanks Julie
×
×
  • Create New...