Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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


annacsmom

Recommended Posts

annacsmom Apprentice

Can anyone explain what pernicious anemia is. My daughter is highly anemic - ferritin level of 5, but her b12 is about 590. She also has hashimoto's, celiac, and has had vitiligo has a child. I don't know if this is something else we should look out for. Thanks


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



Celiac.com Sponsor (A8-M):



trents Grand Master
Can anyone explain what pernicious anemia is. My daughter is highly anemic - ferritin level of 5, but her b12 is about 590. She also has hashimoto's, celiac, and has had vitiligo has a child. I don't know if this is something else we should look out for. Thanks

Did you mean to say that your daughter has had vitiligo as a child or that her child has it? What are her hemoglobin and hematicrit levels?

Anyway, pernicious anemia results from the body being unable to adequately absorb vitamin B12 from dietary sources. B12 is necessary for the proper manufacture of hemoglobin, the oxygen-binding protein in red blood cells. People with pernicious cannot produce or produce enough of something called the "intrinsic factor" (which is an enzyme, I believe) necessary for the uptake of B12 from food sources passing through the gut.

Historically, people with pernicious anemia have had to get B12 from injections or from sublingual (under the tongue) supplements. However, some experts are saying that mega does of oral B12 (like 4 mg) can be effective since there is evidence that at least a small percentage of the oral form is passively absorbed through the intestinal mucosa, even when the intrinsic factor is lacking or missing.

Steve

tiffjake Enthusiast
Did you mean to say that your daughter has had vitiligo as a child or that her child has it? What are her hemoglobin and hematicrit levels?

Anyway, pernicious anemia results from the body being unable to adequately absorb vitamin B12 from dietary sources. B12 is necessary for the proper manufacture of hemoglobin, the oxygen-binding protein in red blood cells. People with pernicious cannot produce or produce enough of something called the "intrinsic factor" (which is an enzyme, I believe) necessary for the uptake of B12 from food sources passing through the gut.

Historically, people with pernicious anemia have had to get B12 from injections or from sublingual (under the tongue) supplements. However, some experts are saying that mega does of oral B12 (like 4 mg) can be effective since there is evidence that at least a small percentage of the oral form is passively absorbed through the intestinal mucosa, even when the intrinsic factor is lacking or missing.

Steve

Yup! I have pernicious anemia. I was absorbing a good amount of B12 after going gluten-free, but then it teetered off, and I am back to the sublingual tablets. I used the shots for years, and got tired of them. You daughter might enjoy the sublingual tablets more than the injections.

Pernicious Anemia is believed to be genetic, and is "life long" though the body may absorb more B12 from time to time. My body seemed to "cure" itself for about 6 mos, but the went back to anemic.

GNC has Sublingual B12 that is gluten-free.

georgie Enthusiast

Steve, I have low B12 and Dr is still testing for Pernicious Anaemia. I probably have it. My B12 was very low when dx. I notice your daughter's Ferritin is very low. Is she being treated for that? Should be 70 - 80.

trents Grand Master
Steve, I have low B12 and Dr is still testing for Pernicious Anaemia. I probably have it. My B12 was very low when dx. I notice your daughter's Ferritin is very low. Is she being treated for that? Should be 70 - 80.

georgie,

I don't think you meant to reply to my reply to the oringinal post by tiffjake, did you?

Steve

NicoleAJ Enthusiast

Actually 590 is a pretty solid number for B12. It should be between 200 and 1100. People can start having neurological symptoms when they get too low on that scale, but 590 is perfectly normal. They should keep an eye on it, and she should take supplements in case she's not getting enough in her diet, particularly if she's a vegetarian or vegan, but unless the B12 dropped significantly lower, I would say that the intrinsic factor is probably working (at least for now).

annacsmom Apprentice

Thanks for all your replies.

Georgie: She is taking an iron supplement -- is that good enough for her very low ferritin level?

NicoleAJ: Thanks for the info about b12. I thought her level was ok. She is taking a b complex vitamin for energy, immune system, etc. But if she starts going downhill, as she has been known to do, I think I'll try the sublingual b12 you mentioned. Thanks


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



Celiac.com Sponsor (A8-M):



RiceGuy Collaborator

Though the B12 level seems good right now, I believe I read that the body will rob B12 from various organs, stored reserves, and anyplace else to keep the blood levels up, so the number may be misleading. You should check on that, as I'm not totally certain at the moment. If and when you find a supplement is desirable, from all the recent reading I've been doing on it, the methylcobalamin form is best, as it doesn't require the liver for conversion. The cyanocobalamin form is much more common in the supplements, but does require conversion. It also includes cyanide :unsure: so I don't feel too comfortable taking that. The amount of cyanide is supposedly dealt with and disposed of, but that's if the gut is operating well enough to handle the task. Articles indicate that persons with certain sensitivities, digestive problems, and various other health concerns may want to avoid it. Do watch for the addition of other vitamins, as they generally have known toxicity levels, whereas B12 itself does not. For instance, too much niacin can cause skin problems among other things.

Source Naturals makes some in the methylcobalamin form, and they specifically state gluten-free. In all forms, lower dosages are absorbed more effectively than larger ones.

annacsmom Apprentice

Source Naturals makes some in the methylcobalamin form, and they specifically state gluten-free. In all forms, lower dosages are absorbed more effectively than larger ones.

georgie Enthusiast

Annacsmum, Have found this on the Forum -

The ideal level of ferritin

70-90

The dosing level

150-200 mg daily

What type of iron is best absorbed and / or best tolerated by stomach

ferrous fumarate

ferrous gluconate

ferrous bisglycinate

RiceGuy Collaborator
Where can I get this brand of b12? Also, should she still take another supplement with multiple b's, or is b12 good enough? Thanks Riceguy

There are a number of online stores that have the B12 if your local health store doesn't have it. For example there's Open Original Shared Link, and Open Original Shared Link, , just to name two. Prices seem to vary widely, but a Google or Amazon search should turn up some good deals.

As for other supplements, that's not as easy to suggest with specifics, because not all vitamins are tolerated in high doses. It depends on what she is absorbing well, and what she is not. For instance, I am likely better off not taking a supplement with folic acid, since I eat bunches of dark leafy vegetables daily. However, if I wasn't absorbing it, that would be a different story. In the case of Pernicious Anemia, the B12 from food isn't absorbed properly, if at all. So in that case a supplement is required. Again, since there is no known toxicity level for B12, the chance of getting too much seems nill. Plus the body stores it for later use, so the extra will be handy whenever it's needed. Apparently B12 assists in the digestion of proteins, fats, and carbohydrates, so if she eats protein-rich foods like peanut butter, foods with a lot of soy such as soy milk or cheese, etc, then more B12 would be used up. So her particular diet really comes into play here, and as the healing continues, and foods are added or removed from the diet, balancing the supplements would seem to require periodic modification. I don't mean to make it sound like you have to be a biochemist or something, nor to suggest regular blood work to check every detail. It's just not my place to make any sort of "ultimate recommendations".

I would suspect at least some additional deficiencies, as the intestinal damage would cause malabsorption. Everyone is different however, and often what works for one person simply doesn't for another. Generally a healthy person can simply maintain a reasonably diverse diet, and get all the nutrients they need. If with such a diet she has certain symptoms, or tests reveal deficiencies, then those are the ones to address most. Adding more of one type of food or less of another may be all that is needed, or a supplement might be better if the imbalance is great enough.

For one last example, suppose a person finds they don't tolerate fats very well. This may be caused by a problem with the liver, or believe it or not, a deficiency of cholesterol. The liver uses cholesterol to produce bile acids, which are then used to help digest fats. So the individual may be wrongly limiting fats, thus various other issues would eventually arise as organs run low on certain nutrients like omega-3's. However, the problem might simply be that they aren't getting enough fiber, which combines with the bile and helps eliminate it, signaling the liver to produce more. If such a trend continued, an elevated cholesterol count or weight gain may result, and they'd wonder why when they already limit the fats and/or cholesterol!

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      130,190
    • Most Online (within 30 mins)
      7,748

    Sah
    Newest Member
    Sah
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • knitty kitty
      Hi, @thejayland10, Do you still consume dairy?  Dairy can cause increased tTg IgA levels in some people with celiac disease who react to casein, the protein in dairy, just like to gluten.   You might try cutting out the processed gluten free foods.  Try a whole foods, no carbohydrate Paleo diet instead, like the AIP diet (the Autoimmune Protocol Diet by Dr. Sarah Ballantyne, a Celiac herself). Processed gluten free foods can be full of excess carbohydrates which can alter your microbiome leading to Small Intestinal Bacterial Overgrowth (SIBO).  SIBO is found in some people who are not responding to a gluten free diet.  SIBO can elevate tTg IgA levels.  The AIP diet cuts out sources of carbohydrates like rice, potatoes (nightshades), quinoa, peas, lentils, legumes, which starves out the SIBO bacteria.  Better bacteria can then proliferate.   I followed the AIP diet to get rid of my SIBO.  It's a strict diet, but my digestive tract had time to rest and heal.  I started feeling better within a few days.  Feeling improvement so soon made sticking to the AIP diet much easier. References: Small intestinal bacterial overgrowth among patients with celiac disease unresponsive to a gluten free diet https://pmc.ncbi.nlm.nih.gov/articles/PMC7759221/   Luminal antigliadin antibodies in small intestinal bacterial overgrowth https://pubmed.ncbi.nlm.nih.gov/9260801/#:~:text=Luminal total IgA concentrations (p,response to local bacterial antigens.   Potato glycoalkaloids adversely affect intestinal permeability and aggravate inflammatory bowel disease https://pubmed.ncbi.nlm.nih.gov/12479649/
    • trents
      First, welcome to the forum, @boy-wonder! Second, a little clarification in terminology is in order. Granted, inconsistency is rampant when it comes to the terminology associated with gluten disorders, but it has more or less become settled in this fashion: "Gluten intolerance" is a general term that car refer to either celiac disease or NCGS (Non Celiac Gluten Sensitivity). "Gluten Sensitivity" is the shortened version of NCGS. Third, Celiac disease is not an allergy to gluten. It is an autoimmune disorder characterized by gluten ingestion causing the immunes system to attack the lining of the small bowel, causing damage to it over time due to the constant inflammation that wears down the "villi" (mucosal finger-like projections that make up the lining). Over a significant period of time as gluten continues to be consumed, this generally results in impaired nutrient absorption. There are specific blood antibody tests available to check for celiac disease but the testing will not be valid while on a reduced gluten diet or a gluten free diet. Those already having having begun a gluten free diet must go back to consuming generous amounts of gluten for a period of weeks if they wish to pursue testing for celiac disease. Fourth, NCGS shares many of the same symptoms of celiac disease but does not damage the lining of the small bowel as does celiac disease. There is no test for it. A diagnosis for NCGS depends on first ruling out celiac disease. It is 10x more common than celiac disease. Some experts feel it can be a precursor to the development of celiac disease. Eliminating gluten from your life is the antidote for both. Fifth, you state that you are convince you don't have celiac disease by are just "gluten intolerant" (aka, gluten sensitive). How do you know that? It seems to me you are making a dangerous assumption here. I suggest you consider getting formally tested for celiac disease.
    • AllyJR
      Has anyone found a gluten free parakeet seed mix? I can't find a single one! My doctor wants me to make sure all pet food in the house is gluten free but I'm not sure if that's even possible with parakeets. We love our birds so much! I'm wondering if anyone has ever made their own bird seed mix if gluten free ones are not available. 
    • boy-wonder
      Hi, new member. About me, I had been suffering with weight gain, bloating and irregular and extreme bowel habits for a year or so. For example, I went on holiday in 2023, then again I  2024 at the same time of year and every shirt I wore in 2023 didn't fit anymore, couldn't even do the buttons up. Being in my mid 50s I put it down to age and middle aged spread. I'd been lucky all my life having good metabolism and being able to eat anything and as much as I like without putting on any weight, it drove my other half mad. Over a conversation with a friend health and age Related stuff came up and he mentioned someone he knew who had recently found out they were gluten intolerant,  I looked it up and had every one of 8 or so symptoms listed. Bloating,  weight gain,  headaches, brain fog,  constipation, etc etc. I took the decision to give going gluten free a try. Within 1 week I had lost 4 lb, now 7 weeks in I've lost 13 lb. I feel much better in general,  the bloating has severely subsided, it used to keep me awake at night as I felt so uncomfortable.  So pretty much a success story, as everyone here knows,  going gluten free isn't always easy, and eating out can be awkward,  but I consider myself lucky that I appear to have an intolerance rather than an allergy or being celiac.  I can deal with most of the gluten free options at the supermarket but, the big one for me is bread, I love bread, and the gluten free options I've tried are pretty poor. I was at a posh black tie event last night and chose all the food options I thought would be gluten free,  however,  there was bread on the table and I couldn't resist it, I had I small piece of bread,  god it was good, I wanted more but I resisted. Today I feel a bit dodgy, my stomach is churning, and I generally feel a bit urgh.  So here's the question, is that really down to 1 small piece of bread or is it coincidence?  I'd be interested in hearing how other people have reacted to a similar situation,  as I was considering having a day off every now and then and enjoying some lovely fresh bread.
    • ValerieC
      Does anybody know of a guide that ranks reevaluates universities and colleges in terms of their accommodation of celiac disease or food allergies?   Thanks in advance for any leads! Valerie 
×
×
  • Create New...