• Ads by Google:
     




    Get email alerts Celiac.com E-Newsletter

    Ads by Google:



       Get email alertsCeliac.com E-Newsletter

  • 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 What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-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

Recommended Posts

Wolicki    39

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:


trents    8

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
ravenwoodglass    1,221

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:


Ahorsesoul    53

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
Wolicki    39
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:


Wolicki    39
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
Wolicki    39
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
Wolicki    39
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:


georgie    12

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
Wolicki    39
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
      107,913
    • Total Posts
      938,658
  • Member Statistics

    • Total Members
      65,840
    • Most Online
      3,093

    Newest Member
    Scott Nelson
    Joined
  • Popular Now

  • Topics

  • Posts

    • Yeah been there, done that, I have broken down to learning to how to cook acorns even, fall I steal pumpkins from the city decorations after halloween so I can eat the seeds and sell the meat in baked goods at the markets. I sometimes used to take produce from the grocery stores. Note you can sometimes talk with a manager and haggle on damaged produce they would toss.  I do not do steal them anymore, my family now offers to support me more now days, and the farmers market and bakery sales keep it where I can just afford food.

           It is  risky state, you have to MAKE sure you eating plenty of fat and protein. Otherwise your body eats itself, as the next best source for fats and protein is the stuff stored on your body as the fat and muscles your have. I live this way myself bit more mild since I can not eat meats. But I eat plenty of egg whites, nuts, seeds, and leafy greens. I literally eat every 4-5 hours at least a protein shake to prevent my body from turning on itself. You can actually body build in ketososis. You just need to really load on the fats and protein, it makes for a LEAN and slow building process....not as easy as carb bulking but my only choice due to my ulcerative colitis having carb, and sugar triggers.

          I am allergic to corn and break out in a rash from it....my mother is hispanic and well you see where that goes, I recall about a year ago she hugged and kissed me on the cheek....well she had eaten something with corn or drank a soda cause I ended up with a red rash in a lip imprint on my cheek bit amusing story for you.   I did a post earlier about where to bulk buy foil sheets, and freezer paper online from my supplier for my bakery I will update this later today with links for you. Buy in industrial rolls and they last you 4-6months
       
    • FYI newly diagnosed should not have oats right away. 
    • You may want to ask your doctor for a celiac panel. That would be a good start. The biopsy needs to be done next to an active lesion and they need to be looking for DH.  Unfortunately it can take a while for DH to be diagnosed because many doctors are not very knowledgeable in the skin form of celiac. Keep eating gluten until all celiac related testing is done. Then you can try the diet if the doctors haven't been able to figure things out or won't test properly.  It can take some time for DH to resolve so you might not notice a difference right away and folks with DH tend to be very sensitive to even small amounts of gluten so you must be very strict. Hope you get some relief soon as I know how miserable the rash can be.
    • Take the opportunity to get healthy!    Nuts, seeds, fruits, take these as snacks on your drive. I personally love almonds and pumpkin seeds. Or bananas and blueberries. Or if you need protein there's lots of gluten free protein bars at gas stations. I like to pack hard boiled eggs too.  One thing I do for long trips is I make sort of a granola/protein bar at home and take it with me.    1 cup oats 3 eggs two spoonfuls of peanut butter some cinnamon and a banana.   mash it all together and bake it like a cake for about 20 minutes. Chop em up into little bars and bag em for your trip. just get creative and try new things! 
    • I totally understand.    Ive noticed the same thing when I started really ramping up my fitness program.    To start, cut out the 30 day challenges. If your serious about fitness, you will incorporate it as a normal entity of life. We already have compromised immune systems so putting sudden outbursts (or challenges) of stress on it will only make you more susceptible to pathogens and ultimately, get you sick.    Take a week, only stretch, light cardio, very light strength training, and lots of rest. Next week, add a little more. Show your body that you can handle it, but do it push it by any means. This new training regime is forever, it's your lifestyle. Take it easy, and play it smart. Slowly add more intense training over time... slowly. Get to a point where you feel your nutrition and fitness needs are being satisfied, and you're productively making differences.   i personally work out 3-4 days a week. But if I go too hard, I get sick. Then I get frustrated that I can't exercise, I work out anyway, and get even more sick. It's just not smart. So I stopped that. I have respect for my immune system and its limits. I took it very slow, and increased my intensity over time. Now I'm at that golden point in my life where everything is balanced. Progress (in terms of personal aesthetics for myself and my interests) is slow, but it's progress. And it's a hell of a lot better than the go hard and get sick cycle.   Best of luck to you friend! I'm sure you will find your way! Learn your body. Know that you are strong, you are powerful, you just have to play it smart. 
  • Upcoming Events