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B12, Pernicious Anemia, Celiac Disease, Iron Levels

Oma81307

By Oma81307
in Coping with Celiac Disease

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Oma81307 Newbie
Oma81307
Posted

Hi! I've been celiac diagnosed for almost 2 years. I started the b12 injections shortly after being diagnosed and I am suppose to be down to once a month. (i'll get to that in a second). However last time my Iron/b12 was checked my b12 was 464 which is 64 over where dr wants it minimum. Iron however was a 12. They want that a 50. I took a round of repliva for 6 weeks. Iron still tested 12. They gave me another round of Repliva and scheduled a shot. Then all of a sudden it was like my energy went from decent. TO NOTHING. I couldn't get up. I wanted to sleep. I did work harder previous to this. Did I just over work myself to where the anemia symptoms kicked in or what? This was on a sat/sun that I became so drained I came home early from work. Slept 4 hours. When I woke up still not much energy. I knew that Monday I had a iron shot scheduled. On Tuesday after having the shot I cried. I really thought this would do like the b12 and give me energy at least for a time. It did not. All it did was make me want to sit up instead of lay down. I finally realized it was a few days till my monthly b12 shot so I checked with my best friend who is a RN and she agreed to go ahead and take it. All of a sudden ZOOM! I was up and gone. We decided maybe until I got the iron up I should take my b12 a little more often. Odd part is the b12 has helped me feel energy but I still feel weird. I have nausea, headaches, I feel like the top half my body wants to go go go and the other half wants to lay down. I have chills up my spine, I'm really cold, then pouring a sweat. I did find out there was some foods I was eating that contained glueten. Now I know why the iron isn't going anywhere. So rearranged my diet again. I just guess i'm curious why the b12 got me going with the iron so low and could the injection of b12 and the iron so low be interacting against one another. :huh:

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TrillumHunter Enthusiast
TrillumHunter
Posted

The iron shots don't work like b-12. It takes some time for new blood cells to be made using the iron you've been given. I started on iron infusions about two weeks ago. I've had one partial, due to an allergic reaction, and two full infusions. I would say yesterday is the first time I noticed any change. My hands and feet are warm and it's easier to breath. But no real boost as of yet. I take the b-12 injections as well. I had one yesterday and it does give a more immediate affect. It doesn't give me energy so much as take away the nerve pain I get.

I would say you can't really evaluate the effectiveness until you get your diet free of gluten. Gluten causes me to have that deep, deep fatigue that rest doesn't relive. Work hard to take care with your diet.

HTH

MaryJones2 Enthusiast
MaryJones2
Posted

Correcting anemia doesn't happen in a matter of weeks when your iron levels are so low. It takes months to correct and six weeks isn't really enough time to see much improvement. As Trillium mentioned gluten zaps any energy that I have and even with treatment I didn't see my iron levels start to improve until I was 100% gluten-free. I also had chills, sweats, etc. until my ferritin passed about 50. Hang in there and keep taking your iron pills. It's a slow improvement but eventually you'll get there.

Oma81307 Newbie
Oma81307
Posted
  • Author
Correcting anemia doesn't happen in a matter of weeks when your iron levels are so low. It takes months to correct and six weeks isn't really enough time to see much improvement. As Trillium mentioned gluten zaps any energy that I have and even with treatment I didn't see my iron levels start to improve until I was 100% gluten-free. I also had chills, sweats, etc. until my ferritin passed about 50. Hang in there and keep taking your iron pills. It's a slow improvement but eventually you'll get there.

how do you work like this? i work for burger king and am a store manager. I can't function. Also, if i go to er and tell them i have all this would they consult a hemoglobin dr and perhaps do iv's or blood transfusion to correct?

Ms. Skinny Chic Explorer
Ms. Skinny Chic
Posted

I have pernicious anemia/ iron anemia also...

Ms. Skinny Chic Explorer
Ms. Skinny Chic
Posted
I have pernicious anemia/ iron anemia also...

PS. My levels used to be very low, but my b 12 is currently @ 1300.

It was @ 3000 4 months ago.. It wasn't nowhere near that 5 years ago..

I was seriously ill... My hematologist wanted to give me iron injections too.

My hematologist had me taking B-12 every month for 6 -12 ms. My pernicious anemia is miraculously improving.. My iron improved also...

Pernicious Anemia is a lifelong illness, but it can improve..

How often are you taking your injections and at what dosage????????

024Mandy Newbie
024Mandy
Posted
Hi! I've been celiac diagnosed for almost 2 years. I started the b12 injections shortly after being diagnosed and I am suppose to be down to once a month. (i'll get to that in a second). However last time my Iron/b12 was checked my b12 was 464 which is 64 over where dr wants it minimum. Iron however was a 12. They want that a 50. I took a round of repliva for 6 weeks. Iron still tested 12. They gave me another round of Repliva and scheduled a shot. Then all of a sudden it was like my energy went from decent. TO NOTHING. I couldn't get up. I wanted to sleep. I did work harder previous to this. Did I just over work myself to where the anemia symptoms kicked in or what? This was on a sat/sun that I became so drained I came home early from work. Slept 4 hours. When I woke up still not much energy. I knew that Monday I had a iron shot scheduled. On Tuesday after having the shot I cried. I really thought this would do like the b12 and give me energy at least for a time. It did not. All it did was make me want to sit up instead of lay down. I finally realized it was a few days till my monthly b12 shot so I checked with my best friend who is a RN and she agreed to go ahead and take it. All of a sudden ZOOM! I was up and gone. We decided maybe until I got the iron up I should take my b12 a little more often. Odd part is the b12 has helped me feel energy but I still feel weird. I have nausea, headaches, I feel like the top half my body wants to go go go and the other half wants to lay down. I have chills up my spine, I'm really cold, then pouring a sweat. I did find out there was some foods I was eating that contained glueten. Now I know why the iron isn't going anywhere. So rearranged my diet again. I just guess i'm curious why the b12 got me going with the iron so low and could the injection of b12 and the iron so low be interacting against one another. :huh:

Hi, I just wanted to let you know that I know exactly how you feel. about a year and a half ago when I was diagnosed with ceilac my iron was at 2, B-12 and hemagloben or how ever you spell it were also extremely low, and I had no idea at the time. I was so used to sleeping all the time and having no energy I didn't know anything was wrong. Now when I look back I should have noticed that there was something going on. I would sleep for at least 10 hours a day and take naps. If I fell asleep during the day It would take my boyfriend 30 mins to wake me up. I was always talking in my sleep and I would appear to wake up(sit up and talk) but still be sleeping. Sometimes He wouldn't be able to wake me up so he would just carry me up to bed. I couldn't do any exercise. I would fall asleep when we had friends over, at the movie theatre, and a bunch of other places. It took me months to get my iron up to normal levels. I used pills, they never did put me on injections. anyway be patiant It will come along. good luck

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I hate gluten Apprentice
I hate gluten
Posted

I am at the begining of my b12 injections. I had to beg for them to even test me for low vit. Every time I read a post like this it reminds me how not alone I really am.

Oma81307 Newbie
Oma81307
Posted
  • Author
PS. My levels used to be very low, but my b 12 is currently @ 1300.

It was @ 3000 4 months ago.. It wasn't nowhere near that 5 years ago..

I was seriously ill... My hematologist wanted to give me iron injections too.

My hematologist had me taking B-12 every month for 6 -12 ms. My pernicious anemia is miraculously improving.. My iron improved also...

Pernicious Anemia is a lifelong illness, but it can improve..

How often are you taking your injections and at what dosage????????

I take one insulin syringe full of b12 once a month. though i took those extra shots i am now drained again. it was like go go go go go go and crash and burn. I went to er on saturday the 7th. didn't help. they couldn't get the results on the iron back till monday. I waited and waited missing work. I finally got aggravated and got my results from the er myself. iron was 47. i called my regular dr and got in with her by then i had sore throat and just felt lousy. she put me off for the rest of the week and said that she was calling it bacteria and viral and put me on predinsone steriod pack and zpak antibotic. by thursday my throat and stuff better but not energy. My doctor for celiac had never called back. so i called and spoke with a supervisor and they were like we don't know why they didn't call you but your dr wants you off work until she sees you. (which is today) so she checked the test the other places (er, reg dr) had run and said "no one tested your iron saturation" we will get that tomorrow when you come in." so we'll see what they find

wild fisher Rookie
wild fisher
Posted
Correcting anemia doesn't happen in a matter of weeks when your iron levels are so low. It takes months to correct and six weeks isn't really enough time to see much improvement. As Trillium mentioned gluten zaps any energy that I have and even with treatment I didn't see my iron levels start to improve until I was 100% gluten-free. I also had chills, sweats, etc. until my ferritin passed about 50. Hang in there and keep taking your iron pills. It's a slow improvement but eventually you'll get there.

What is Ferritin? I checked my last test result and i was at 5 and my iron saturation level was 9%. My Dr. did say i was anemic (iron deficiency) but didn't put me on any thing or say much about it so i left it alone. Now that i read this thread i'm thinking i should go back in.

Oma81307 Newbie
Oma81307
Posted
  • Author
Hi, I just wanted to let you know that I know exactly how you feel. about a year and a half ago when I was diagnosed with ceilac my iron was at 2, B-12 and hemagloben or how ever you spell it were also extremely low, and I had no idea at the time. I was so used to sleeping all the time and having no energy I didn't know anything was wrong. Now when I look back I should have noticed that there was something going on. I would sleep for at least 10 hours a day and take naps. If I fell asleep during the day It would take my boyfriend 30 mins to wake me up. I was always talking in my sleep and I would appear to wake up(sit up and talk) but still be sleeping. Sometimes He wouldn't be able to wake me up so he would just carry me up to bed. I couldn't do any exercise. I would fall asleep when we had friends over, at the movie theatre, and a bunch of other places. It took me months to get my iron up to normal levels. I used pills, they never did put me on injections. anyway be patiant It will come along. good luck

Hey thanks for your input. But they have now decided my iron, b12 is okay. they are waiting on celiac levels to come back i have NO idea what that does and my white blood count is up. I am going to my reg dr today to hopefully get some answers. I've absolutly crashed. I've not worked in a week and a half. other than about 5 hrs. I'm so tired. Taking a shower wears me out. At my gi dr I talk more to the nurses than i do my dr and they are not helping. She wrote me a note for work stating that i could work if i felt like it and don't if i don't. and that this was due to iron deficiancy. well now they called and said iron is fine. and they are waiting on celiac test i said what does that mean. well it could be the reason you feel the way you do. HELLLOOOOOOOO. what does it test. I did find out I was eating foods i wasn't suppose to. they didn't say wheat barley or rye so i thought them to be safe. ha! so i'm learning all over again. i'm going to start kicking butt and taking names i can't take this anymore. I have extreme exhaustion, bone pain, muscle pain and spasms, light headed, little sparks in front of my eyes at times, over all i feel like i have the flu that won't go away. i'm an 80 year old in a 34 year old body! ick. help. ever heard of the celiac level?

mimommy Contributor
mimommy
Posted
I have extreme exhaustion, bone pain, muscle pain and spasms, light headed, little sparks in front of my eyes at times, over all i feel like i have the flu that won't go away. i'm an 80 year old in a 34 year old body! ick. help. ever heard of the celiac level?

Are you sure it's not a "Celiac PANEL"? That is the name of at least two tests used to diagnose celiac disease--tissue transglutaminase (ttg) and total IgA.

Oma81307 Newbie
Oma81307
Posted
  • Author
Are you sure it's not a "Celiac PANEL"? That is the name of at least two tests used to diagnose celiac disease--tissue transglutaminase (ttg) and total IgA.

yep that's what it was. and it was elevated. they don't want to do anything about it. however my regular dr says it is nothing to do with celiac. he's run a bunch of test.. we'll see

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      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc.  Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food. The only processed food they eat regularly is a bowl of Cheerios here and there.  Could shaking legs be a symptom of just a one-time gluten exposure? I guess there's no way to know for sure if they're getting absolutely zero exposure because they do go to school a couple times a week. We do homeschool but my son does a shared school 2x a week and my daughter does a morning Pre-K 3 x a week.  At home our entire house is strictly gluten free and it is extremely rare for us to eat out. If we eat at someone else's house I usually just bring their food. When we have play dates we bring all the snacks, etc. I try to be really careful since they're still growing. They also, of course, catch kids viruses all the time so I  want to make sure I know whether they're just sick or they've had gluten. It can be pretty confusing when they're pretty young to even be explaining their symptoms! 
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