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

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

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

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

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

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

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

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.


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?

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.

Archived

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

  • 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. - Scott Adams replied to HelenH's topic in Gluten-Free Foods, Products, Shopping & Medications
      3

      Malt vinegar

    2. - Scott Adams replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      55

      Supplements for those Diagnosed with Celiac Disease

    3. - Scott Adams replied to MoniqueCham's topic in Related Issues & Disorders
      2

      Celiac Disease, Lymphocytic colitis and Bowel rupture

    4. - KelleyJo replied to HelenH's topic in Gluten-Free Foods, Products, Shopping & Medications
      3

      Malt vinegar

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,548
    • Most Online (within 30 mins)
      7,748

    Paulette Ryan
    Newest Member
    Paulette Ryan
    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

    • HelenH
    • Scott Adams
      Yes, unfortunately malt vinegar can definitely trigger a strong reaction in people with celiac disease. Malt vinegar is typically made from barley, which contains gluten, and unlike distilled white vinegar, it is not considered gluten-free. Even a small amount — especially if you’ve been strictly gluten-free for years — can cause a more intense reaction because your body is no longer accustomed to exposure. Many people report significant symptoms after accidental ingestion, including abdominal pain, diarrhea, fatigue, or flu-like feelings. You’re not alone in that experience. It may help to be especially cautious with salad dressings, chips, sauces, and restaurant foods, where malt vinegar is sometimes used.
    • Scott Adams
      A diagnosis of Refractory Celiac Disease Type 2 is a lot to absorb, especially if you feel like the severity wasn’t clearly communicated earlier. It’s understandable to feel shocked and frustrated. RCD Type 2 does require close specialist care, often with a gastroenterologist who has experience managing complex celiac cases, and sometimes coordination with hematology because of the immune cell changes involved. Focusing on nutrition is absolutely important — many people benefit from working with a registered dietitian who specializes in celiac disease to help address malabsorption, weight loss, and vitamin or mineral deficiencies. You’re doing the right thing by seeking information and support. Make sure you feel comfortable asking your care team direct questions about your biopsy results, treatment plan, and monitoring strategy — you deserve clarity and a coordinated approach.
    • Scott Adams
      I’m so sorry you’ve been through all of that — that’s an incredibly complex history. While methotrexate is widely used at low weekly doses for autoimmune conditions, it can, in rare cases, cause serious gastrointestinal side effects, including ulceration, mucosal injury, or even perforation. That said, a spontaneous sigmoid rupture from methotrexate at 15 mg weekly is extremely uncommon. In people with celiac disease — especially refractory celiac — there can already be underlying intestinal inflammation or altered mucosal integrity, which might theoretically increase vulnerability, but there isn’t strong published evidence clearly linking stable celiac disease to a markedly higher risk of methotrexate-related bowel perforation. Other factors such as concurrent inflammation, vascular compromise, infection, steroid use, or microscopic colitis may also contribute. It would be reasonable to review the case with a gastroenterologist familiar with refractory celiac and possibly a rheumatologist, and to report the event as a potential adverse drug reaction. I’d also be very interested to hear if others in the community have had similar experiences.
    • KelleyJo
      Yes,  I've reacted to malt anything . . . it does come from barley.  I'm super careful to avoid anything containing malt or even maltodextrin unless it's labeled from corn.
×
×
  • 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.