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

Anemia / Iron Infusions - Advice about post-infusion blood levels

Katrala

By Katrala
in Related Issues & Disorders

Recommended Posts

Katrala Contributor
Katrala
Posted

I'm looking for some help to understand some recent bloodwork.

I slowly became anemic over the past year and only discovered it when I was at a critical level (Hbg of 7, Ferritin of 3, etc.)  I received 3 iron IV infusions during the month of May (total of 1500 mg(?) of Feraheme.)

I had my blood checked a week after the last infusion (June 1st) and again this week (July 6th.)  Most of my numbers seem good, but my Ferritin levels have dropped a lot, but are still within normal range.  Has anyone else had a drop in Ferritin after infusions?  Is this normal or something I should be concerned about?

Here are my levels (June 1st, July 6th):

Ferritin (320.1, 108.1)

Iron (88, 92)

Hemoglobin (12.4, 13.4)

Hematocrit (41.7, 43)

Other variables:

  • I am an endurance athlete (cyclist) and, on average, spend 7 hours+ on the bike each week (I ask a lot of my body)
  • I am currently training to climb Mt. Rainier (14,000+ feet) and I can only do that if my hemoglobin stays in the normal range (I climb in less than 2 weeks, so I think I'm good there.)
  • I have had a hysterectomy, so the anemia is not related to any type of menstrual issues, etc.
  • I had a celiac panel done before I began the first infusion and it came back normal - my levels were not elevated at all.  Could celiac still be the root cause (malabsorption) of the anemia? 

Thank you in advance for any information, advice, etc.

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

Celiac.com Sponsor (A8-M):


cyclinglady Grand Master
cyclinglady
Posted
3 hours ago, Katrala said:

I'm looking for some help to understand some recent bloodwork.

I slowly became anemic over the past year and only discovered it when I was at a critical level (Hbg of 7, Ferritin of 3, etc.)  I received 3 iron IV infusions during the month of May (total of 1500 mg(?) of Feraheme.)

I had my blood checked a week after the last infusion (June 1st) and again this week (July 6th.)  Most of my numbers seem good, but my Ferritin levels have dropped a lot, but are still within normal range.  Has anyone else had a drop in Ferritin after infusions?  Is this normal or something I should be concerned about?

Here are my levels (June 1st, July 6th):

Ferritin (320.1, 108.1)

Iron (88, 92)

Hemoglobin (12.4, 13.4)

Hematocrit (41.7, 43)

Other variables:

  • I am an endurance athlete (cyclist) and, on average, spend 7 hours+ on the bike each week (I ask a lot of my body)
  • I am currently training to climb Mt. Rainier (14,000+ feet) and I can only do that if my hemoglobin stays in the normal range (I climb in less than 2 weeks, so I think I'm good there.)
  • I have had a hysterectomy, so the anemia is not related to any type of menstrual issues, etc.
  • I had a celiac panel done before I began the first infusion and it came back normal - my levels were not elevated at all.  Could celiac still be the root cause (malabsorption) of the anemia? 

Thank you in advance for any information, advice, etc.

What does your doctor think?  

I was like you.  Anemia, (low ferritin and hemoglobin) except I opted not to get transfusions.  On top of that I have a genetic anemia which pretty much masked the iron-deficiency anemia.  Oh, I am a cyclist too!  

Which  celiac tests did you take?  If the full panel was not given, you could ask for it.  If my doctor had not ordered the full panel (TTG, DGP, EMA) my celiac disease would not have been caught!  I test positive to only the DGP (even in follow-up testing).  You are becoming anemic for a reason.  You should be checked by a GI.  About 10% of celiacs are sero negative, so biopsies should be obtained.  The transfusion may hold until your race, but if your hemoglobin drops, I would not consider it.  There is some long-term damage that can occur to your heart (if I can recall, but I am not a doctor).  

Katrala Contributor
Katrala
Posted
  • Author

I should have said - I'm already blood / biopsy diagnosed (6 years ago.)

cyclinglady Grand Master
cyclinglady
Posted

Sorry, I should really read your posting.  That is what I get when I am trying to multi-task!  ?

  Have other things been ruled out (e.g. Crohn's)?  Have your doctors found the cause of your anemia?  

If I recall, my ferritin increased from a 2 to a 55 in just a few months of being gluten free.   

Was the last celiac disease test given exactly the same as the first?  A complete panel?   Did you ever get a follow-up Endoscopy?  Maybe it is time to see what is going on.  

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. xxnonamexx
      - xxnonamexx posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      0

      FDA looking for input on Celiac Gluten sensitivity labeling PLEASE READ and submit your suggestions

      Please read: https://www.fda.gov/news-events/press-announcements/fda-takes-steps-improve-gluten-ingredient-disclosure-foods?fbclid=IwY2xjawPeXhJleHRuA2FlbQIxMABicmlkETFzaDc3NWRaYzlJOFJ4R0Fic3J0YwZhcHBfaWQQMjIyMDM5MTc4ODIwMDg5MgABHrwuSsw8Be7VNGOrKKWFVbrjmf59SGht05nIALwnjQ0DoGkDDK1doRBDzeeX_aem_GZcRcbhisMTyFUp3YMUU9Q
    2. cristiana
      - cristiana replied to Atl222's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Increased intraepithelial lymphocytes after 10 yrs gluten-free

      Hi @Atl222 As @trents points out, there could be many reasons for this biopsy result. I am interested to know, is your gastroenterologist concerned? Also, are your blood tests showing steady improvement over the years? I remember when I had my last biopsy, several years after diagnosis, mine came back with with raised lymphocytes but no villous...
    3. trents
      - trents replied to Atl222's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Increased intraepithelial lymphocytes after 10 yrs gluten-free

      Welcome to the celiac.com community, @Atl222! Yes, your increased lymphocytes could be in response to oats or it could possibly be cross contamination from gluten that is getting into your diet from some unexpected source but not enough to damage the villi. And I'm certain that increased lymphocytes can be caused by other things besides celiac disease...
    4. Scott Adams
      - Scott Adams replied to Aretaeus Cappadocia's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Brown Rice Vinegar (organic) from Eden Foods is likely gluten free

      This is a solid, well-reasoned approach. You’re right that “koji” by itself doesn’t indicate gluten status, and the risk really does come down to which grain is used to culture it. The fact that you directly contacted Eden Foods and received a clear statement that their koji is made from rice only, with no wheat or barley, is meaningful due diligence—especia...
    5. Scott Adams
      - Scott Adams replied to wellthatsfun's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      nothing has changed

      Seven months can still be early in celiac healing, especially if you were mostly asymptomatic to begin with—symptoms like low iron, vitamin D deficiency, nail changes, and hair issues often take much longer to improve because the gut needs time to recover before absorption normalizes. A tTG-IgA of 69 is not “low” in terms of immune activity, and it can t...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,192
    • Most Online (within 30 mins)
      7,748
    DenisC
    Newest Member
    DenisC
    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

    • xxnonamexx
      FDA looking for input on Celiac Gluten sensitivity labeling PLEASE READ and submit your suggestions

      By xxnonamexx · Posted

      Please read: https://www.fda.gov/news-events/press-announcements/fda-takes-steps-improve-gluten-ingredient-disclosure-foods?fbclid=IwY2xjawPeXhJleHRuA2FlbQIxMABicmlkETFzaDc3NWRaYzlJOFJ4R0Fic3J0YwZhcHBfaWQQMjIyMDM5MTc4ODIwMDg5MgABHrwuSsw8Be7VNGOrKKWFVbrjmf59SGht05nIALwnjQ0DoGkDDK1doRBDzeeX_aem_GZcRcbhisMTyFUp3YMUU9Q
    • cristiana
      Increased intraepithelial lymphocytes after 10 yrs gluten-free

      By cristiana · Posted

      Hi @Atl222 As @trents points out, there could be many reasons for this biopsy result.  I am interested to know, is your gastroenterologist concerned?  Also, are your blood tests showing steady improvement over the years? I remember when I had my last biopsy, several years after diagnosis, mine came back with with raised lymphocytes but no villous damage, too! In my own case, my consultant wasn't remotely concerned - in fact, he said I might still get this result even if all I ever did was eat nothing but rice and water.   My coeliac blood tests were still steadily improving, albeit slowly, which was reassuring.
    • trents
      Increased intraepithelial lymphocytes after 10 yrs gluten-free

      By trents · Posted

      Welcome to the celiac.com community, @Atl222! Yes, your increased lymphocytes could be in response to oats or it could possibly be cross contamination from gluten that is getting into your diet from some unexpected source but not enough to damage the villi. And I'm certain that increased lymphocytes can be caused by other things besides celiac disease or gluten/oats exposure. See attachment. But you might try eliminating oats to start with and possibly dairy for a few months and then seek another endoscopy/biopsy to see if there was a reduction in lymphocyte counts. 
    • Scott Adams
      Brown Rice Vinegar (organic) from Eden Foods is likely gluten free

      By Scott Adams · Posted

      This is a solid, well-reasoned approach. You’re right that “koji” by itself doesn’t indicate gluten status, and the risk really does come down to which grain is used to culture it. The fact that you directly contacted Eden Foods and received a clear statement that their koji is made from rice only, with no wheat or barley, is meaningful due diligence—especially since Eden has a long-standing reputation for transparency. While the lack of gluten labeling can understandably give pause, manufacturer confirmation like this is often what people rely on for traditionally fermented products. As always, trusting your body after trying it is reasonable, but based on the information you gathered, your conclusion makes sense.
    • Scott Adams
      nothing has changed

      By Scott Adams · Posted

      Seven months can still be early in celiac healing, especially if you were mostly asymptomatic to begin with—symptoms like low iron, vitamin D deficiency, nail changes, and hair issues often take much longer to improve because the gut needs time to recover before absorption normalizes. A tTG-IgA of 69 is not “low” in terms of immune activity, and it can take 12–24 months (sometimes longer) for antibodies and the intestinal lining to fully heal, particularly in teens and young adults. Eating gluten again to “test” things isn’t recommended and won’t give you clear answers—it’s far more likely to cause harm than clarity. Weight not changing is also very common in celiac and doesn’t rule anything out. Please know that your frustration and sadness matter; this adjustment is hard, and feeling stuck can really affect mental health. You deserve support, and if you can, reaching out to a GI dietitian or mental health professional familiar with chronic illness could really help you through this phase. This study indicates that a majority of celiacs don't recover until 5 years after diagnosis and starting a gluten-free diet: Mucosal recovery and mortality in adults with celiac disease after treatment with a gluten-free diet However, it's also possible that what the study really shows is the difficulty in maintaining a 100% gluten-free diet. I suspect that if you looked closely at the diets of those who did not recover within 2 years might be that their diets were not 100% gluten-free. Perhaps they ate out more often, or didn't understand all of the hidden ingredients where gluten can hide. Either way, it shows how difficult recovery from celiac disease can be for most people. According to this study: This article explores other causes of flattened villi:    
×
×
  • 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.