Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.


  • Celiac.com Sponsor (A1):
    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Pernicious Anemia

foodiegurl

Recommended Posts

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!!

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


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 !

Archived

This topic is now archived and is closed to further replies.

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. trents
      - trents replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      4

      IBS-D vs Celiac

      No coincidence. Recent revisions to gluten challenge guidelines call for the daily consumption of at least 10g of gluten (about the amount in 4-6 slices of wheat bread) for a minimum of 3 weeks. If possible, I would extend that two weeks to ensure valid testing.
    2. SilkieFairy
      - SilkieFairy replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      4

      IBS-D vs Celiac

      Thank you both for the replies. I decided to bring back gluten so I can do the blood test. Today is Day #2 of the Challenge. Yesterday I had about 3 slices of whole wheat bread and I woke up with urgent diarrhea this morning. It was orange, sandy and had the distinctive smell that I did not have when I was briefly gluten free. I don't know if it's a...
    3. knitty kitty
      - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      @Jane02, I hear you about the kale and collard greens. I don't do dairy and must eat green leafies, too, to get sufficient calcium. I must be very careful because some calcium supplements are made from ground up crustacean shells. When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly. This is safe...
    4. Jane02
      - Jane02 replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency. I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently...
    5. knitty kitty
      - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      Hello, @Jane02, I take Naturewise D 3. It contains olive oil. Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets. Fractionated coconut oil is not the same as coconut oil used for cooking. Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,336
    • Most Online (within 30 mins)
      7,748
    Jeffrey Yeres
    Newest Member
    Jeffrey Yeres
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • trents
      IBS-D vs Celiac

      By trents · Posted

      No coincidence. Recent revisions to gluten challenge guidelines call for the daily consumption of at least 10g of gluten (about the amount in 4-6 slices of wheat bread) for a minimum of 3 weeks. If possible, I would extend that two weeks to ensure valid testing.
    • SilkieFairy
      IBS-D vs Celiac

      By SilkieFairy · Posted

      Thank you both for the replies. I decided to bring back gluten so I can do the blood test. Today is Day #2 of the Challenge. Yesterday I had about 3 slices of whole wheat bread and I woke up with urgent diarrhea this morning. It was orange, sandy and had the distinctive smell that I did not have when I was briefly gluten free. I don't know if it's a coincidence, but the brain fog is back and I feel very tired.   
    • knitty kitty
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By knitty kitty · Posted

      @Jane02, I hear you about the kale and collard greens.  I don't do dairy and must eat green leafies, too, to get sufficient calcium.  I must be very careful because some calcium supplements are made from ground up crustacean shells.  When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly.  This is safe and nontoxic.  Vitamin D level should be above 70 nmol/L.  Lifeguards and indigenous Pacific Islanders typically have levels between 80-100 nmol/L.   Levels lower than this are based on amount needed to prevent disease like rickets and osteomalacia. We need more thiamine when we're physically ill, emotionally and mentally stressed, and if we exercise like an athlete or laborer.  We need more thiamine if we eat a diet high in simple carbohydrates.  For every 500 kcal of carbohydrates, we need 500-1000 mg more of thiamine to process the carbs into energy.  If there's insufficient thiamine the carbs get stored as fat.  Again, recommended levels set for thiamine are based on minimum amounts needed to prevent disease.  This is often not adequate for optimum health, nor sufficient for people with absorption problems such as Celiac disease.  Gluten free processed foods are not enriched with vitamins like their gluten containing counterparts.  Adding a B Complex and additional thiamine improves health for Celiacs.  Thiamine is safe and nontoxic even in high doses.  Thiamine helps the mitochondria in cells to function.  Thiamine interacts with each of the other B vitamins.  They are all water soluble and easily excreted if not needed. Interesting Reading: Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/ Safety and effectiveness of vitamin D mega-dose: A systematic review https://pubmed.ncbi.nlm.nih.gov/34857184/ High dose dietary vitamin D allocates surplus calories to muscle and growth instead of fat via modulation of myostatin and leptin signaling https://pubmed.ncbi.nlm.nih.gov/38766160/ Safety of High-Dose Vitamin D Supplementation: Secondary Analysis of a Randomized Controlled Trial https://pubmed.ncbi.nlm.nih.gov/31746327/ Vitamins and Celiac Disease: Beyond Vitamin D https://pmc.ncbi.nlm.nih.gov/articles/PMC11857425/ Investigating the therapeutic potential of tryptophan and vitamin A in modulating immune responses in celiac disease: an experimental study https://pubmed.ncbi.nlm.nih.gov/40178602/ Investigating the Impact of Vitamin A and Amino Acids on Immune Responses in Celiac Disease Patients https://pmc.ncbi.nlm.nih.gov/articles/PMC10814138/
    • Jane02
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Jane02 · Posted

      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency.  I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently meet from my diet is vitamin D. Calcium is a hit and miss as I rely on vegetables, dark leafy greens as a major source, for my calcium intake. I'm able to meet it when I either eat or juice a bundle of kale or collard greens daily haha. My thiamine intake is roughly 120% of my needs, although I do recognize that I may not be absorbing all of these nutrients consistently with intermittent unintentional exposures to gluten.  My vitamin A intake is roughly 900% (~6400 mcg/d) of my needs as I eat a lot of sweet potato, although since it's plant-derived vitamin A (beta-carotene) apparently it's not likely to cause toxicity.  Thanks again! 
    • knitty kitty
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By knitty kitty · Posted

      Hello, @Jane02,  I take Naturewise D 3.  It contains olive oil.   Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets.  Fractionated coconut oil is not the same as coconut oil used for cooking.  Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the jar, and thus may be irritating to the digestive system. I avoid supplements made with soy because many people with Celiac Disease also react to soy.  Mixed tocopherols, an ingredient in Thornes Vitamin D, may be sourced from soy oil.  Kirkland's has soy on its ingredient list. I avoid things that might contain or be exposed to crustaceans, like Metagenics says on its label.  I have a crustacean/shellfish/fish allergy.  I like Life Extension Bioactive Complete B Complex.  I take additional Thiamine B 1 in the form Benfotiamine which helps the intestines heal, Life Extension MegaBenfotiamine. Thiamine is needed to activate Vitamin D.   Low thiamine can make one feel like they are getting glutened after a meal containing lots of simple carbohydrates like white rice, or processed gluten free foods like cookies and pasta.   It's rare to have a single vitamin deficiency.  The water soluble B Complex vitamins should be supplemented together with additional Thiamine in the form Benfotiamine and Thiamine TTFD (tetrahydrofurfuryl disulfide) to correct subclinical deficiencies that don't show up on blood tests.  These are subclinical deficiencies within organs and tissues.  Blood is a transportation system.  The body will deplete tissues and organs in order to keep a supply of thiamine in the bloodstream going to the brain and heart.   If you're low in Vitamin D, you may well be low in other fat soluble vitamins like Vitamin A and Vitamin K. Have you seen a dietician?
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.