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Pernicious Anemia

foodiegurl

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foodiegurl Collaborator
foodiegurl
Posted

Yesterday, I got a call from the nurse saying my B12 was low, and the Dr wants me to test for pernicious anemia, by taking the parietal antibody test next week. Of course being the word pernicious freaks me out in that it means fatal :( :(

I have been gluten free for 2 1/2 months, I am not sure what my beginning b12 was..but would it have improved by now with a gluten-free diet? I am actually a vegetarian, but do eat fish once a week.

I have also been taking prilosec for 4 months and i know this can effect it too.

Is it pretty common for people to have this with celiac?

And if I do have it, what kind of dr do I see? A hematologist?

It all just seems overwhelming, and I don't even think I have any symptoms. I mean I feel good, have loads of energy, but then i never would have thought I had Celiac either.

I just want to be "normal" again :(

Any advice or insight would be appreciated, thanks!!

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MaryJones2 Enthusiast
MaryJones2
Posted

pernicious anemia is only dangerous when it's not treated properly. If you have pernicious anemia you lack the ability to absorb B12 through your digestive tract (research intrinsic factor) so it doesn't matter what supplement you take or what you eat. The standard treatment is to bypass the digestive system with B12 injections every week or two.

strawberrynin Newbie
strawberrynin
Posted
pernicious anemia is only dangerous when it's not treated properly. If you have pernicious anemia you lack the ability to absorb B12 through your digestive tract (research intrinsic factor) so it doesn't matter what supplement you take or what you eat. The standard treatment is to bypass the digestive system with B12 injections every week or two.

I inject 1 cc per week to keep up. It's common with Gastric bypass patients...and celiac...but it may take more time for your intestines to heal than 2 1/2 months. Most seem to think its between 6 - 9 months before substantive enough healing occurs for proper absorption to recur.

bbbjenkins Newbie
bbbjenkins
Posted

Hey, don't worry too much about the anemia--it's fairly common and typically easy to treat. In terms of B12 deficiency my research (pretty limited) indicates that there is both a patch and sublingual (dissolves under the tongue) tablet, so you can forgo the needles if you want to. Obviously you should consult your doc about this. You've got two, maybe three, things working against you in the anemia dept: vegetarian diet--B12 is usually found in meat and fish + legumes, your Celiac's (the above mentioned intrinsic factor and your small bowel malabsorption), and lastly your sex (sorry to say) as women tend to suffer iron and folate deficiencies at higher rates than men, having at least something to do with having a menstrual cycle, which makes sense. Anemia is kind of a generic/general term which encompasses many, many types/conditions. It can be complicated to sort it all out, but, luckily, you don't really have to. As I've said, a little B12 (and a little iron and folate if necessary) via treatment and an 'anti-anemia' diet and you're good to go. Now that you've entered the world of Celiac's disease, I'd recommend grabbing a Merck manual at your local used bookstore. These manuals are used by medical professionals, doctors and nurses, for their comprehensive, clear, and concise information. If you don't have any medical training the details might escape you, but you'll get all the general concepts. I have one and it has been invaluable. It's reassuring to at least have some idea of what's going on and what you can expect. I can't stress educating yourself re: Celiac's enough. As this forum makes abundantly clear, much of the medical community is fairly clueless when it comes to Celiac's. Which means you get treated for conditions and ailments you don't have!!! After 8 months of total small bowel dysfunction, just yesterday a doctor told me I probably have a virus and to come back in 4 weeks. P-L-E-A-S-E. I was like "How about I come back in four minutes and punch you in the face!" I'm totally kidding. I am very non-violent and have never hit anyone in the face, but I totally understand your downheartedness (is this even a word?) re" Celiac's. It's hard to be sick and chasing gluten-free status ain't easy. But, hey, at least you know what's going on now and it's totally treatable. If you're going to have a disease, Celiac's is not a bad choice. My local Co-op grocery labels all of their Gluten-free items and they carry a lot of stuff. You will get the hang of it and you will feel better. Good luck!

Brent

ps If it makes you feel any better whiskey's still allowed and I had some killer gluten-free chocolate ice cream a couple of nights ago. I wouldn't recommend the whiskey just yet--alcohol and a damaged small bowel don't go real well together, but knock yourself out with the gluten-free ice cream!

foodiegurl Collaborator
foodiegurl
Posted
  • Author

Thanks Brent, that cheered me up. Especially the punching in the face part!

Unfortunately, I am a vodka girl rather than whiskey, and now I guess it is more difficult to find good and gluten-free vodka..grrrr.....

The gluten-free diet, I feel I have a pretty good handle on and it helps that I love cooking fresh veggies and everything from scratch.

A part of me think that it comes back that I don't have pernicious anemia, and just am low in b12 due to the celiac, I may add a little meat back in, who knows...maybe I will go crazy and do it! A big, homemade pot roast!

anne

Hey, don't worry too much about the anemia--it's fairly common and typically easy to treat. In terms of B12 deficiency my research (pretty limited) indicates that there is both a patch and sublingual (dissolves under the tongue) tablet, so you can forgo the needles if you want to. Obviously you should consult your doc about this. You've got two, maybe three, things working against you in the anemia dept: vegetarian diet--B12 is usually found in meat and fish + legumes, your Celiac's (the above mentioned intrinsic factor and your small bowel malabsorption), and lastly your sex (sorry to say) as women tend to suffer iron and folate deficiencies at higher rates than men, having at least something to do with having a menstrual cycle, which makes sense. Anemia is kind of a generic/general term which encompasses many, many types/conditions. It can be complicated to sort it all out, but, luckily, you don't really have to. As I've said, a little B12 (and a little iron and folate if necessary) via treatment and an 'anti-anemia' diet and you're good to go. Now that you've entered the world of Celiac's disease, I'd recommend grabbing a Merck manual at your local used bookstore. These manuals are used by medical professionals, doctors and nurses, for their comprehensive, clear, and concise information. If you don't have any medical training the details might escape you, but you'll get all the general concepts. I have one and it has been invaluable. It's reassuring to at least have some idea of what's going on and what you can expect. I can't stress educating yourself re: Celiac's enough. As this forum makes abundantly clear, much of the medical community is fairly clueless when it comes to Celiac's. Which means you get treated for conditions and ailments you don't have!!! After 8 months of total small bowel dysfunction, just yesterday a doctor told me I probably have a virus and to come back in 4 weeks. P-L-E-A-S-E. I was like "How about I come back in four minutes and punch you in the face!" I'm totally kidding. I am very non-violent and have never hit anyone in the face, but I totally understand your downheartedness (is this even a word?) re" Celiac's. It's hard to be sick and chasing gluten-free status ain't easy. But, hey, at least you know what's going on now and it's totally treatable. If you're going to have a disease, Celiac's is not a bad choice. My local Co-op grocery labels all of their Gluten-free items and they carry a lot of stuff. You will get the hang of it and you will feel better. Good luck!

Brent

ps If it makes you feel any better whiskey's still allowed and I had some killer gluten-free chocolate ice cream a couple of nights ago. I wouldn't recommend the whiskey just yet--alcohol and a damaged small bowel don't go real well together, but knock yourself out with the gluten-free ice cream!

georgie Enthusiast
georgie
Posted

Bumping up this Topic so you can have a listen. I highly recommend Sally 's book. Could it be B12 ? - Sally Pacholok.

https://www.celiac.com/gluten-free/index.php?showtopic=57752

The PA Society has a lot of information and a Forum at their website.

Open Original Shared Link

The Parietal Cell Antibody test and Intrinsic Factor test are not terribly accurate at diagnosing PA so if you have anegative result you can still have PA.

Autoantibody screen Intrinsic factor (IF) antibodies, if present, are virtually diagnostic of pernicious anaemia. However, they are absent in 50% of patients with pernicious anaemia. Gastric parietal-cell antibodies are present in 85% of people with pernicious anaemia, but are also found in 3-10% of people who do not have pernicious anaemia.

Open Original Shared Link

And if you are diagnosed - make sure you have the Loading Dose and treat to symptoms !

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