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 Celiac.com!
    eNewsletter
    Donate

Low Iron Level With High B12 Level


Golden Girl

Recommended Posts

Golden Girl Rookie

My iron level is low but I have a high B12 level. I don't have the actual numbers yet from the Dr. but I have started liquid iron Florivital with orange juice and I have been eating more foods with iron but I am still feeling drained, depressed and not sleeping well. I have been trying to stay away from sugar and grains using coconut flour and almond flour and no dairy. I do have to have coffee in the morning so I get moving. I am on a leave of absence from work because I have been so depressed and not able to concentrate (brain fog). I also have bloating and I am very irritable. I was diagnosed with Celiac Disease 3 years ago I had 3 mini strokes before the diagnosis. Could some of my issues be related to the mini strokes? Or what could I eat to make me have more energy and get my focus back? Any information would be helpful, I'm not sure my Dr. is very knowledgeable about Celiac. I have been thinking maybe it could be systematic Candida but my GI Dr. said no that it would have been seen when they did the upper GI. I desperately need help and want to feel better.

Link to comment
Share on other sites

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



Celiac.com Sponsor (A8-M):



AVR1962 Collaborator

I would definately ask to see your lab results. I question the high B12.....is it high as in normal range high or hyper? That could make you sick there if your B12 is out of normal range but the question would then be, why is it that high?

Link to comment
Share on other sites
crimsonviolet Apprentice

I'd look into fructose malabsorption or SIBO (small intestinal bacterial overgrowth.) A hallmark seems to be low iron and high b12, and the bloating and fatigue fit with the typical symptoms.

Link to comment
Share on other sites
Bubba's Mom Enthusiast

I have low iron and high B12 as well. I thought it odd, because so many of us are low on B12?

Let us know if they find the cause of your symptoms?

Link to comment
Share on other sites
ravenwoodglass Mentor

May not be the case but are you taking a vitamin with folate? From what I have read (sorry don't have time to find the link) that can cause falsely high B12 readings.

Link to comment
Share on other sites
frieze Community Regular

the direct testing for B12 is questionable. Get tested for methylmalonic acid and homocysteine. Check out Same'

Link to comment
Share on other sites
Golden Girl Rookie

My iron level is low but I have a high B12 level. I don't have the actual numbers yet from the Dr. but I have started liquid iron Florivital with orange juice and I have been eating more foods with iron but I am still feeling drained, depressed and not sleeping well. I have been trying to stay away from sugar and grains using coconut flour and almond flour and no dairy. I do have to have coffee in the morning so I get moving. I am on a leave of absence from work because I have been so depressed and not able to concentrate (brain fog). I also have bloating and I am very irritable. I was diagnosed with Celiac Disease 3 years ago I had 3 mini strokes before the diagnosis. Could some of my issues be related to the mini strokes? Or what could I eat to make me have more energy and get my focus back? Any information would be helpful, I'm not sure my Dr. is very knowledgeable about Celiac. I have been thinking maybe it could be systematic Candida but my GI Dr. said no that it would have been seen when they did the upper GI. I desperately need help and want to feel better.

I called my Dr. to get my lab results:

iron 47

B12 1263

T4 Normal

TSH .27

I am not sure what the actual numbers should be.

Link to comment
Share on other sites

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



Celiac.com Sponsor (A8-M):



Ginger7 Rookie

Also note that b12 is absorbed in the latter part of intestine, the terminal ileum so one possible idea to throw out there is that celiac has caused damage in the duodenum or first part of intestine causing the low iron. The latter part of the intestine, terminal ileum may not be damaged and hence b12 is not low. What is the range of b12 given? Seems like that number might be right on the upper border or just over.

Also have you have ferritin tested which indicates stores of iron? Plus I agree with other post around b12 tests. Have you had endoscopy/colonoscopy done?

Link to comment
Share on other sites
Golden Girl Rookie

Also note that b12 is absorbed in the latter part of intestine, the terminal ileum so one possible idea to throw out there is that celiac has caused damage in the duodenum or first part of intestine causing the low iron. The latter part of the intestine, terminal ileum may not be damaged and hence b12 is not low. What is the range of b12 given? Seems like that number might be right on the upper border or just over.

Also have you have ferritin tested which indicates stores of iron? Plus I agree with other post around b12 tests. Have you had endoscopy/colonoscopy done?

I have had 2 endoscopies and 1 colonoscopy within the last 3 years. I forgot to mention I did go off of Prilosec I have been taking this over 2 years. I did read on a website about low stomach acid which can cause you to not absorb iron, I am going to mention this to my Dr. but I did start taking 3 times a day Betaine HCI. Today is my 2nd day.

Link to comment
Share on other sites

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - plumbago replied to Suzi374's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Lots of tests

    2. - trents replied to Suzi374's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Lots of tests

    3. - Suzi374 replied to Suzi374's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Lots of tests

    4. - Suzi374 posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Lots of tests

    5. - Peace lily posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      0

      Would like to gain weight


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      121,226
    • Most Online (within 30 mins)
      7,748

    NYKaren
    Newest Member
    NYKaren
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • plumbago
      I'm also a nurse, but one who has worked in chronic care, and to some extent, it is more satisfying to see patients through to a diagnosis (as opposed to working in the ED), but an accurate diagnosis does not occur not as often as it should! Your posting presents a lot of information. But a couple of things I can respond to. One, celiac disease is diagnosed by endoscopy and biopsy of the duodenum. So, pathology will need to weigh in. It's not diagnosed on gastroscopy. (At least, not as far as I know). Two, did you get blood tests for celiac disease? You will need to be eating gluten in order for those to be accurate. Three, where was the CT angiogram (of what)? I could go on and on, but thought I'd start there.
    • trents
      Was a biopsy done when you had your gastroscopy? Concerning your anemia, are you B12 deficient? It's nearly impossible to get sufficient B12 if you are a vegetarian unless you take supplements.
    • Suzi374
      And I’m anaemic, however I’m also female and vegetarian. I had an iron trans a couple of years ago however it’s starting to dwindle and taking supplements doesn’t seem to work. I can’t seem to absorb it. 
    • Suzi374
      Hi, I attended a neurologist appt last Tuesday, which I nearly cancelled, due to ongoing numbness and tingling in toes to mid foot. One of the first things he asked was ‘are you celiac’. I’m not. He thought all reflexes were ok but at the last minute decided on nerve conduction tests which were low normal. He was a little confused as he felt they should be better and tried a new set of probs, all the time, giving me multiple shocks which were not enjoyable lol. Anyway, he’s now ordered tests for myeloma, and all the vitaminy things that so many of you mention on here, also tests looking for autoimmune responses. I already have Hashimotos. Interestingly, to me, but maybe someone out there can relate or knows more than i do, although I was a nurse, but ED not ‘weird symptoms’  nurse. Anyway back to the interesting thing, I took duramine in 2013 to lose weight which caused a massive panic attack when I stopped taking it and half my hair fell out. I only took it for a week but it was horrible and I regret it. It triggered ongoing panic attacks which are horrendous. So I feel like I’m a bit crazy. Then in 2020 I had this sudden onset of horrible pain when trying to eat a cinnamon roll. It continued and I lost around 20 kgs. I had two gastroscopes and a colonoscopy and they were all normal. I scored a barium swallow and CT angiogram. All normal. The pain subsided a little but I was left with reflux and an awful feeling that I couldn’t get air when I ate some foods. This was not anxiety.  The anxiety was separate and I still maintain this. This was something to do with eating. It was like the air was thick but I wasn’t short of breath. I just had the sensation I was, then it triggered anxiety. Anyway, I had other weird things- couldn’t bend knees to shave legs in shower lol. Knees felt stiff and swollen but they weren’t. Knee WOUld swell up randomly but mri showed minimal issues. A bit of a meniscus degeneration but insignificant. Then the buzzing sensations in my head, the feeling like someone was stabbing me with something sharp. So now, I pre empted his tests, although I don’t think I’m celiac because it should have come up on gastroscopy, I’ve gone off gluten. Since Tuesday last week so 9 days. Since then I don’t appear to be as constipated, I realised I got through today without a nap and I’m not tired, maybe it’s just today and not related but I get very tired normally and sleep straight after work often, I can bend my knees and shave my legs lol, the buzzing vibrating has gone from my head, I had to call and ambulance as my heart decided we were off on a run, but we weren’t running and I’ve been a bit twitchy at bed time when trying to sleep, reflux is improving, I did get the weird suffocating feeling a bit when eating today but not as bad normall. Tingling and numbness still present and I felt like it moved up my legs a bit today but I’m a bit jittery. So I don’t know if it’s celiac disease or a gluten intolerance but I think, and it may be wishful thinking because my symptoms do make life a bit challenging, but maybe I’m feeling better. I don’t feel as cloudy. My thinking feels crisper. Like there’s no buzzing and I’m not fighting to break through the cloudiness now. I hope so much that this may help me feel a bit better moving forward. It would be a miracle as I really have struggled to work and parent and keep the house clean and I’m always anxious and exhausted.  If you get this far, please tell me if you you can relate to any of the above. Oh and tonsils out 5 years ago but before that antibiotics multiple times a year, sometimes intramuscular because they were so bad.  Op was meant to take 30 mins, it took 1.5 hours due to size of them. 
    • Peace lily
      Im still not gaining weight I’m on a gluten free diet . And still having issues with constapation started priobiocs figured it would help been over two weeks . I guess it’s going to be a long road for me .
×
×
  • Create New...