• 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
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
      108,911
    • Total Posts
      943,458
  • Member Statistics

    • Total Members
      67,053
    • Most Online
      3,093

    Newest Member
    JAcooks44
    Joined
  • Popular Now

  • Topics

  • Posts

    • I am just curious.  As a scientist (and I am not trying to be rude), how can you determine if hydrologized wheat protein from your husband’s shampoo was actually the culprit?  If I recall at your diagnosis, you were seronegative, Marsh Stage I, gene positive,  but your doctor still  suspected celiac disease.  You improved on a gluten diet.  Other than observation, how do you really know?  Could it not be something else that triggered your symptoms?   I firmly believe that even trace amounts of gluten (under 20 ppm), can impact sensitive celiacs.  But traces of a protein within a shampoo from someone else’s hair that was rinsed?    
    • I also can't have dairy but through a series of experiments and a lot of research I think I've pinpointed my problem. It may or may not be the same for you, but I thought I'd share.  There are two kinds of beta-casein protein A1 and A2. We'll call A1 "bad casein" and A2 "good casein". The two proteins differ only in a single amino acid, but this is enough to make it so that they are processed differently in your guy. Bad casein is actually broken down into a casomorphin, which is an opioid peptide. That does not mean that milk gets you high, or is as addictive as heroin, or anything like that, it just means that it can interact with opioid receptors (which the gut has a bunch of). It's worth noting that opioids cause constipation due to their interaction with the opioid receptors in the gut, and that a lot of people feel like cheese and dairy slow things down, but any connection between the two is pure speculation on my part at this point.  Now here's where things get weird. The vast majority of milk cows in the western world are derived from Holstein-like breeds, meaning black and white cows. In a few select places, you'll see farms that use Jersey-type cows, or brown cows (Jersey cows produce less milk than Holsteins, but many connoisseurs feel it's a higher quality milk, particularly for cheese).  Holstein-like cows have A1 and A2 casein (bad and good), however, Jersey-type cows only have A2 (good casein), unless their genetic line involved a Holstein somewhere in the past, which does happen.  A company in New Zealand figured out how to test their cows for these two genes, and selected their herd down to cows that specifically produce ONLY A2 (good) casein. You might have seen it in the store, it's called A2 milk. Some people have had a lot of luck with this milk, though it still doesn't solve the problem of cheese.  I have suspected, due to trial and error and a few accidental exposures, that I have a problem with A1 casein, but not A2. In line with this: I am able to eat sheep and goat dairy without any difficulty, so at least I can still enjoy those cheeses! I am also fortunate because I'm apparently not too sensitive, as I can still eat cow-milk butter. The process of making butter removes *most* (read: enough for me) of the casein.  However, if I eat cow cheese or a baked good with milk, I get really sick. It's a much faster reaction than if I get glutened. Within minutes I'm dizzy and tired and my limbs are heavy. I have to sleep for a couple of hours, and then, over the next couple of days, I'm vulnerable to moodiness and muscles spasms and stomach upset just as though I'd been glutened (though the brain fog isn't as bad). I actually haven't tried A2 milk yet, mostly due to lack of availability (and motivation, I don't miss milk, I miss CHEESE). However, last year, when I was getting ready to go on a trip to Italy, I had a thought. Once, in the recent past, when I'd been testing dairy, I'd had a slice of parmesan cheese. Miracle of miracles, I was fine. I didn't feel a thing! I was so excited that I ran out and got some brie to eat as a snack. That did not go so well... Turns out parmigiano reggiano is made from the milk of the Reggiana variety of cow which is, you guessed it, a brown cow (they say red). I did a little more research and found that dairies in Italy predominantly use brown cows. So I decided to try something. As some of you may know, Italy is something of a haven for celiacs. It's one of the most gluten-free friendly places I've ever been. You can say "senza glutine" in the smallest little town and they don't even bat their eyelashes. You can buy gluten free foods in the pharmacy because they're considered a MEDICAL NECESSITY. If travelling-while-celiac freaks you out, go to Italy. Check out the website for the AIC (Italy's Celiac society), find some accredited restaurants, and GO NUTS. While I was there, I decided to see if I could eat the dairy. I could.  Friends, I ate gelato Every. Single. Night. after that. It was amazing. Between the dairy being safe for me and the preponderance of gluten free options, it was almost like I didn't have dietary restrictions. It was heaven. I want to go back and never leave.  So that's my story. Almost too crazy to believe.  TL;DR: Black and white cows make me sick, brown cows are my friends.
    • I'm a scientist, and I did a little research into the study. Looks valid and it was published in a respected journal.  http://www.gastrojournal.org/article/S0016-5085(17)36352-7/pdf The science looks solid. As someone who didn't have a super clean cut diagnosis before going gluten free, I'd love to see something like this become available. Then again, there's no doubt in my mind that I can't have gluten, so any additional testing would be purely academic. But like I said, I'm a scientist. I can't help myself. 
    • Update: I have tried calling the company several times and have emailed twice. I have yet to talk to a person on the phone and no one has emailed me back.    I did a little research and they were are already involved with a class action lawsuit about being labeled as salt free and one of the first ingredients is sodium chloride.  I am done with this shampoo because this whole company seems a little shady now! 
    • I've actually been glutened by shampoo with hydrolyzed wheat protein, and I wasn't even the one using it. It was my husbands! I swear I don't go around eating my husbands hair.  I am pretty sensitive though, so it's entirely believable that the trace amounts in his hair were getting onto his and my hands and then making its way to my mouth, etc. etc.  It was a slow and steady low grade glutening that eventually built up to something that I was able to recognize as more definitively "a glutening". Once we ditched the shampoo and I recovered, I realized that I'd been feeling it for weeks.  It's going to depend on your level of sensitivity, but even if you don't feel it, it could still be doing damage. Also... I second that. Starch is a carbohydrate, protein is a protein (obviously), there is no simple process that would convert one into the other. Also, as gluten is a protein, converting starch to protein wouldn't be expected to do anything to gluten ANYWAY.  Speaking as a biologist here. I call poppycock. 
  • Upcoming Events