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

Low Iron Level With High B12 Level

Golden Girl

Recommended Posts

Golden Girl Rookie
Golden Girl
Posted

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.

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

Celiac.com Sponsor (A8-M):


AVR1962 Collaborator
AVR1962
Posted

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?

crimsonviolet Apprentice
crimsonviolet
Posted

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.

Bubba's Mom Enthusiast
Bubba's Mom
Posted

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?

ravenwoodglass Mentor
ravenwoodglass
Posted

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.

frieze Community Regular
frieze
Posted

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

Golden Girl Rookie
Golden Girl
Posted
  • Author

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.

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

Celiac.com Sponsor (A8-M):


Ginger7 Rookie
Ginger7
Posted

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?

Golden Girl Rookie
Golden Girl
Posted
  • Author

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.

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 Sarah Grace's topic in Related Issues & Disorders
      24

      Headaches / Migraines and Hypoglycaemia

      Then we would need to cut out all meat and fish as they are richer sources of tyrosine than nuts and cheese. Something else about certain tyrosine rich foods must be the actual culprit.
    2. Scott Adams
      - Scott Adams replied to Russ H's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      KAN-101 Treatment for Coeliac Disease

      I agree that KAN-101 looks promising, and hope the fast track is approved. From our article below: "KAN-101 shows promise as an immune tolerance therapy aiming to retrain the immune system, potentially allowing safe gluten exposure in the future, but more clinical data is needed to confirm long-term effects."
    3. Scott Adams
      - Scott Adams replied to miguel54b's topic in Related Issues & Disorders
      1

      Body dysmorphia experience

      Thank you so much for having the courage to share this incredibly vivid and personal experience; it's a powerful reminder of how physical ailments can disrupt our fundamental sense of self. What you're describing sounds less like a purely psychological body dysmorphia and more like a distinct neurological event, likely triggered by the immense physical stress...
    4. Scott Adams
      - Scott Adams replied to Colleen H's topic in Related Issues & Disorders
      2

      Heat intolerant... Yikes

      The most common nutrient deficiencies associated with celiac disease that may lead to testing for the condition include iron, vitamin D, folate (vitamin B9), vitamin B12, calcium, zinc, and magnesium. Unfortunately many doctors, including my own doctor at the time, don't do extensive follow up testing for a broad range of nutrient deficiencies, nor recommend...
    5. Scott Adams
      - Scott Adams replied to Jmartes71's topic in Coping with Celiac Disease
      1

      Related issues

      I am so sorry you are going through this; it sounds incredibly overwhelming and disheartening to be dismissed by the very medical professionals you're turning to for help. It is completely understandable that you feel lost and exhausted, not just from the relentless physical symptoms like the leg pain, stomach issues, and profound fatigue, but from the psychological...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,151
    • Most Online (within 30 mins)
      7,748
    TheaBr
    Newest Member
    TheaBr
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • trents
      Headaches / Migraines and Hypoglycaemia

      By trents · Posted

      Then we would need to cut out all meat and fish as they are richer sources of tyrosine than nuts and cheese. Something else about certain tyrosine rich foods must be the actual culprit. 
    • Scott Adams
      KAN-101 Treatment for Coeliac Disease

      By Scott Adams · Posted

      I agree that KAN-101 looks promising, and hope the fast track is approved. From our article below: "KAN-101 shows promise as an immune tolerance therapy aiming to retrain the immune system, potentially allowing safe gluten exposure in the future, but more clinical data is needed to confirm long-term effects."  
    • Scott Adams
      Body dysmorphia experience

      By Scott Adams · Posted

      Thank you so much for having the courage to share this incredibly vivid and personal experience; it's a powerful reminder of how physical ailments can disrupt our fundamental sense of self. What you're describing sounds less like a purely psychological body dysmorphia and more like a distinct neurological event, likely triggered by the immense physical stress and inflammation that uncontrolled celiac disease can inflict on the entire body, including the nervous system. It makes complete sense that the specific sensory input—the pressure points of your elbows on your knees—created a temporary, distorted body map in your brain, and the fact that it ceased once you adopted a gluten-free diet is a crucial detail. Your intuition to document this is absolutely right; it's not "crazy" but rather a significant anecdotal data point that underscores the mysterious and far-reaching ways gluten can affect individuals. Your theory about sensory triggers from the feet for others is also a thoughtful insight, and sharing this story could indeed be validating for others who have had similar, unexplainable sensory disturbances, helping them feel less alone in their journey.
    • Scott Adams
      Heat intolerant... Yikes

      By Scott Adams · Posted

      The most common nutrient deficiencies associated with celiac disease that may lead to testing for the condition include iron, vitamin D, folate (vitamin B9), vitamin B12, calcium, zinc, and magnesium.  Unfortunately many doctors, including my own doctor at the time, don't do extensive follow up testing for a broad range of nutrient deficiencies, nor recommend that those just diagnosed with celiac disease take a broad spectrum vitamin/mineral supplement, which would greatly benefit most, if not all, newly diagnosed celiacs. Because of this it took me decades to overcome a few long-standing issues I had that were associated with gluten ataxia, for example numbness and tingling in my feet, and muscle knots--especially in my shoulders an neck. Only long term extensive supplementation has helped me to resolve these issues.      
    • Scott Adams
      Related issues

      By Scott Adams · Posted

      I am so sorry you are going through this; it sounds incredibly overwhelming and disheartening to be dismissed by the very medical professionals you're turning to for help. It is completely understandable that you feel lost and exhausted, not just from the relentless physical symptoms like the leg pain, stomach issues, and profound fatigue, but from the psychological toll of being told it's "just IBS" or that you need a therapist when you know your body is signaling that something is wrong. While it's true that a normal tTG test can indicate that celiac disease itself is being managed from a dietary perspective, it is a major oversight for your doctors to ignore your other diagnoses like SIBO, a hernia, and Barrett's esophagus, all of which can contribute significantly to the symptoms you describe. You are absolutely right to be seeking a new Primary Care Physician who will listen to your full history, take your Barrett's diagnosis seriously, and help you coordinate a care plan that looks at the whole picture, because your experience is not just in your head—it's in your entire body, and you deserve a medical team that acknowledges that. I had hernia surgery (laparoscopic), and it's not a big deal, so hopefully you can have your new doctor give you some guidance on that.
×
×
  • 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.