• Join our community!

    Do you have questions about celiac disease or the gluten-free diet?

  • Ads by Google:
     




    Get email alerts Subscribe to Celiac.com's FREE weekly eNewsletter

    Ads by Google:



       Get email alertsSubscribe to Celiac.com's FREE weekly eNewsletter

  • 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 Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  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 What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes
0
Wolicki

Pernicious Anemia

Rate this topic

Recommended Posts

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!

Share this post


Link to post
Share on other sites
Ads by Google:
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.

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.

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?

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.

Share this post


Link to post
Share on other sites
Ads by Google:


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!

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?

Share this post


Link to post
Share on other sites


Ads by Google:


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.

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:

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:

Share this post


Link to post
Share on other sites


Ads by Google:


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.

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!

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
      108,908
    • Total Posts
      943,440
  • Member Statistics

    • Total Members
      67,039
    • Most Online
      3,093

    Newest Member
    Carolesune
    Joined
  • Popular Now

  • Topics

  • Posts

    • Teresa,  You posted this same question yesterday.  You did get a response, but you did not answer the questions asked which might help you.  We can not diagnose you over the internet.  We are not doctors, but just people who can not consume gluten.  We share tips, our personal experiences, and ask questions about the gluten free diet.   If you have or suspect DH, read through the DH section for coping strategies.  Keep to the gluten free diet.  Talk to your doctor!  It might NOT even be related to celiac disease!  
    • My suspicion is dehydration caused by too much fiber. Combined with your cold, fever and perhaps any medications, loss of appetite and the high fiber content of the chia, slowing down the passage of the post nasal drip thereby giving it more time to irritate. I had a similar experience with Graviola during a phase of anorexia, when I would take it without food. By the way, Cold-Eze does work.
    • Welcome!   Let me put your mind at ease.  While is true that some celiacs have fertility issues, it is usually because they are undiagnosed and not being treated.   I think your approach of focusing on your health for the next six months to a year prior to conception is an excellent idea.  Not only will it help insure a healthy pregnancy, but you will be able to handle and care for that baby for the next few decades!   I was in a dedicated gluten free bakery and saw a young family with a six month old baby boy.  I love babies and struck up a conversation.  They said that the wife had been sick with odd issues  and finally got diagnosed with celiac disease.  Six months  this later, she got pregnant after they had been trying for three years.   So, learn the gluten free diet.  Choose healthy foods and try to avoid processed junk foods (not good for anybody), excercise gently, reduce the stress in your life, and I bet you will be fine!   Green stools can be a sight of rapid transit. It could be gluten, a virus, or food poisoning.  Stay hydrated and you will be fine.  Celiacs have leaky guts, so you might have developed an intolerance.  How long have you been gluten free?  Try reading our Newbie 101 thread located at the top of the “Coping” section of the forum.   Take care.  
    • I have granuloma on both of my feet and got them after I had my daughter. She's now 2!! Not eating gluten has not effected it in the least.  I had a major flair up after my colonoscopy and an exploratory surgery, neither had anything to do with my feet . 
    • I have had rolling food intolerance issues and stuff crop up for years....but this time it was seemly triggered by a cold.  I got a cold this weekend standard fever, stuffy nose, coughing gunk up, head pressure, random dizzy spells etc. Anyway I was eating on my chia seed rotation before getting it just fine...but about halfway into my cold I started having vomiting issues after eating. I assumed this was the cold perhaps it was instead a flu. But I got over it now with just a bit of congestion and sore throat left BUT I noticed a pattern in my food diary and confirmed it yesterday...within 30-60mins of eating anything with chia seeds I am puking ....... it seems I got a new intolerance to them? I found this odd that it was seemly triggered by the cold. I guess it could have happened with the compromised system and fever. Has anyone else had a new food intolerance crop up after a cold?
  • Upcoming Events