Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

  • Announcements

    • admin

      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Pernicious Anemia
0

13 posts in this topic

Oh, Yay, another autoimmune disease! So now I have this too, but hey, it's better than a poke in the eye with a sharp stick, right ;)

So my iron and B12 are low and I have neuropathy. I started sublingual B12 1000mcg about 2 months ago. I started prescription Ferrex about 2 weeks ago. When I started the Ferrex, I started taking 2000mcg B12, and got my first injection last week.

This somehow told my body to make the neuropathy worse :( I have to make an appt with my doctor to see her to get a shot (that means a 2 1/2 hour wait every time). I am wondering how often you all get shots, and if it's less now than in the beginning? I just need to know if I need to start planning on spending half of my work week sitting in my doctor's office :(:(

Thanks!

0

Share this post


Link to post
Share on other sites


Ads by Google:

If indeed you do have pernicious anemia the oral dosing of B12 you are taking is not high enough to be effective. Studies have shown that shots are not the only way to address perniciou anemia for some people. Apparently there is a passive mechanism of absorbtion that with high enough oral dosing does not require the normal intrinsic factor for assimilating B12. This passive mechanism is very inefficient, however, and requires 4000 to 8000 mcg daily to be effective. Not to worry, however. B12 is water soluble and therefore nontoxic, even in very high amounts.

0

Share this post


Link to post
Share on other sites

In addition are you certain the Ferrex is gluten free? Make sure you pharmacist checks it. The B12 injections should not increase your symptoms but getting glutened sure would.

0

Share this post


Link to post
Share on other sites

I don't get the shots. I take sublingual B12 in the form of methylcobalamin.

I wonder if it's possible that you are reacting to something in the shot--what is in the shot besides for B12?

As far as having another autoimmune disease, B2 deficiency is very common amongst celiacs due to absorption problems before going on the gluten-free diet, and after going on the gluten-free diet, not eating the "enriched" wheat products (B12 is in the "enriching").

Another common cause of B12 deficiency is long-term use of acid blockers--which many celiacs take because a common symptom amongst celiacs is GERD or reflux! These meds block production of the acid that happens to be needed to properly absorb the B12.

So it's possible that by continuing B12 therapy, staying gluten-free and, if you are currently on acid blockers, weaning down or even off them, you might be able to regulate your B12, in which case, you don't necessarily have another autoimmune disorder!

Of course, it's also possible that you do have another autoimmune disorder, or that you aren't amking adequate intrinsic factor, or any number of other things. But I like to think positive!

There are some good B12 deficiency/pernicious anemia websites out there--have you already found them?

0

Share this post


Link to post
Share on other sites

Most people I know has a loading dose like I did initially. Once a week for six weeks and then tapering down. I have one every three months now.

Don't you know someone who is an RN/LPN? They could easily give you the injection--it's not rocket science. You can even train someone around your house to do it for you--even yourself! You can get the syringes prefilled but drawing up the medicine is nothing. You use a whole vial so you can't overdose from one vial.

It makes a world of difference when it's at the right level.

0

Share this post


Link to post
Share on other sites




I started my B12 shots daily for two weeks, now I do weekly shots, at home. Your doctor can write you a prescription for them. A nurse at the clinic can teach you how to do them. Just check with your insurance company to see if they will pay for the shots you do yourself.

It actually hurts less if given into the tummy area. I was always doing them into my thigh when I first started. Another friend said her doctor showed her how to do them in her tummy with a Insulin needle. It took me two hours before I could stick that needle into my tummy, but wow, it didn't hurt like I thought it would. Unfortunately my tummy did not deflate!

0

Share this post


Link to post
Share on other sites
If indeed you do have pernicious anemia the oral dosing of B12 you are taking is not high enough to be effective. Studies have shown that shots are not the only way to address perniciou anemia for some people. Apparently there is a passive mechanism of absorbtion that with high enough oral dosing does not require the normal intrinsic factor for assimilating B12. This passive mechanism is very inefficient, however, and requires 4000 to 8000 mcg daily to be effective. Not to worry, however. B12 is water soluble and therefore nontoxic, even in very high amounts.

Can you take the 8000 all at once or does it need to be spaced out?

0

Share this post


Link to post
Share on other sites
In addition are you certain the Ferrex is gluten free? Make sure you pharmacist checks it. The B12 injections should not increase your symptoms but getting glutened sure would.

Yes, it is gluten-free, I had the pharmacist check before I filled it.

0

Share this post


Link to post
Share on other sites
I don't get the shots. I take sublingual B12 in the form of methylcobalamin.

I wonder if it's possible that you are reacting to something in the shot--what is in the shot besides for B12?

As far as having another autoimmune disease, B2 deficiency is very common amongst celiacs due to absorption problems before going on the gluten-free diet, and after going on the gluten-free diet, not eating the "enriched" wheat products (B12 is in the "enriching").

Another common cause of B12 deficiency is long-term use of acid blockers--which many celiacs take because a common symptom amongst celiacs is GERD or reflux! These meds block production of the acid that happens to be needed to properly absorb the B12.

So it's possible that by continuing B12 therapy, staying gluten-free and, if you are currently on acid blockers, weaning down or even off them, you might be able to regulate your B12, in which case, you don't necessarily have another autoimmune disorder!

Of course, it's also possible that you do have another autoimmune disorder, or that you aren't amking adequate intrinsic factor, or any number of other things. But I like to think positive!

There are some good B12 deficiency/pernicious anemia websites out there--have you already found them?

THe nurse told me it was only B12 in the shot. I take Aciphex for GERD. I was down to only taking it only every three days,until I had to start the Ferrex. It gives me terrible heartburn, so I had to go back to taking it daily. I have checked out some of the sites.

Thanks everyone for your help! I wonder if maybe the neuropathy is worse these last two days because nerves are healing? Getting worse to get better? Am I a ridiculous optimist? :lol:

0

Share this post


Link to post
Share on other sites
I started my B12 shots daily for two weeks, now I do weekly shots, at home. Your doctor can write you a prescription for them. A nurse at the clinic can teach you how to do them. Just check with your insurance company to see if they will pay for the shots you do yourself.

It actually hurts less if given into the tummy area. I was always doing them into my thigh when I first started. Another friend said her doctor showed her how to do them in her tummy with a Insulin needle. It took me two hours before I could stick that needle into my tummy, but wow, it didn't hurt like I thought it would. Unfortunately my tummy did not deflate!

Oh darn! Why couldn't they make a shot for that? :lol:

0

Share this post


Link to post
Share on other sites

A good web site for Pernicious Anemia is http://pernicious-anaemia-society.org/ They have a Forum. Some people are finding that methyl sublinguals before bedtime are more effective than taking it in the morning. Some find methyl injections done with insulin needles work well. Twice a week at first, then once a week etc. If you use B12 you must check your Folate and Potassium levels from time to time as well. I am doing the subcutaneous injections now and they don't hurt at all. I put an ice cube there for a couple of minutes, then its even easier. :) The sublingual tablets on their own were not enough for me.

0

Share this post


Link to post
Share on other sites
A good web site for Pernicious Anemia is http://pernicious-anaemia-society.org/ They have a Forum. Some people are finding that methyl sublinguals before bedtime are more effective than taking it in the morning. Some find methyl injections done with insulin needles work well. Twice a week at first, then once a week etc. If you use B12 you must check your Folate and Potassium levels from time to time as well. I am doing the subcutaneous injections now and they don't hurt at all. I put an ice cube there for a couple of minutes, then its even easier. :) The sublingual tablets on their own were not enough for me.

THanks Georgie! GReat resource!

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      103,608
    • Total Posts
      918,334
  • Topics

  • Posts

    • How do you know what's causing what?
      Hi Kam, If you are going to continue the celiac testing with an endoscopy, you need to keep eating gluten until it's done. It can be hard for vegetarians to keep their vitamin D levels up.   This Vitamin D  Council link has some good info on ways to boost your levels. https://www.vitamindcouncil.org/about-vitamin-d/
    • Blood results - odd
      Your ferritin was very low!  My result was a 2 when I was diagnosed.    I hard a hard time breathing and the fatigue was awful due to low hemoglobin levels.  But after going gluten free and taking iron for a few months, I quickly recovered from iron-deficiency anemia.  I still have hemologobin levels that are slightly below range due to Thalassemia which is genetic and my body has adjusted for it.   My B12 and folate levels are  super high.  My B12 is over 2000!  Yeah, I googled and ruled out cancers, etc.  Looks like some of us do not process man-made B12 often included in supplements.  I opted for natural sources of B-12 and folate and my levels have come down a bit.   Let us know your results.  Read the Newbie 101 section under "Coping" within this forum for tips.   Be patient.  It can take months, to years to feel good.  But it will happen!    
    • How do you know what's causing what?
      Welcome to the forum!   Well.....in theory you should be able to heal within a few months (grow new villi, etc.).  The reality is that it takes so much longer -- like a year or two (I kid you not!)  Why?  celiac disease can damage more than just the gut.  Depending on what was damaged (nerves, bones, etc) can impact healing time.  The gluten-free diet has a very steep learning curve.  It's not just giving up gluten.  It's avoiding cross contamination.  Becoming an expert in reading labels.  Learning to avoid foods processed on shared lines in a facility.  Then there are intolerances that most celiacs develop.  The most common ones is lactose.  Why?  The villi tips release the enzymes to digest lactose.  No villi tips?  Then you can not digest lactose.  Often this is temporary, but if you are one of the many adults in this world, you might already be lactose intolerant or might become so as you age.   Other intolerances that members often report include corn or soy.   Some celiacs react to oats, even gluten free.  So avoid oats for six months.  So, try cutting out dairy for a few days and see how you feel.  Then add in those items that have the least lactose:  hard cheese, butter, yogurt and see how you feel.   Avoid eating out for six months until you have seen some improvement.   Read our Newbie 101 thread under coping for more ideas!  Hope you feel better soon.   
    • Recovery diet, nutrition, leaky gut?
      I am having my endoscopy on Tuesday. I want to begin to heal my gut asap. I spent this morning in the ER with stabbing pain in my right shoulder blade, pain to the left of my belly button and vomiting. It's referred pain from my small intestine. I couldn't move or breathe hardly it hurt so bad. I NEED to get everything together to heal my gut asap. I don't want to ever go through this again. What are your recommendations? I've been reading a bit on leaky gut - anyone have good experience/links Or would the autoimmune diet be better? Are they one in the same? I know I am also reacting to casein and possibly potatoes. 
    • Celiac.com: Celiac Patients Could Get Gluten-free Stipend
      Celiac disease is a sensitivity to the gluten found in wheat, barley, rye, spelt and oats that causes an autoimmune response in which the body attacks ... View the full article
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

    • celiac sharon  »  cyclinglady

      Hello cycling lady, have you noticed my picture is showing up as you?  Have no idea why but it's rather disconcerting to see my picture and your words 😉  Do you know how to fix it?  You seem to have far more experience with this board than I do
      · 1 reply
    • Larry Gessner  »  cyclinglady

      Hi There, I don't know if there is a place for videos in the forum. I just watched "The Truth About Gluten" I think it is a good video. I would like to share it somewhere but don't know where it should go. Any help would be greatly appreciated.
      Here is the link if you have never watched it.
      https://youtu.be/IU6jVEwpjnE Thank You,
      Larry
      · 2 replies
    • ChiaChick  »  Peaceflower

      Hi Peaceflower, Just wanted to say thank you for the chat.
      · 0 replies
  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      60,707
    • Most Online
      1,763

    Newest Member
    Ree8080
    Joined