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

Toddler with very low iron saturation


greenbeanie

Recommended Posts

greenbeanie Enthusiast

Does anyone have an infant/toddler with biopsy-confirmed celiac who had very low iron saturation as an early symptom? 

I posted in the “Testing” forum a few weeks about about my 15-month-old who has been on a very low-gluten diet due to first-degree relatives with celiac. He started showing obvious symptoms after a short time of eating a small amount of gluten each day. He ended up getting tTG- IgA and IgG tests, as well as DGP. All were normal, but I know celiac blood tests are unreliable at this age, especially on a low-gluten diet. Further tests showed macrocytic anemia (low hemoglobin, low RBC, high MCV) but normal folate and B12. His hemoglobin was tested three months prior at a well-baby visit and was on the higher side of normal then, so it dropped over 2 points in a short time. It was during this time that he began eating a few bites of wheat each day. He also lost weight, even though he eats a ton and has a healthy, varied diet (including iron-fortified gluten-free cereals, meat, and eggs). Further testing showed iron saturation at 6% (normal is 20-55%), low serum iron, but somewhat high ferritin. All stool tests were normal. 

I am waiting for the doctor to call me to explain the results. I previously felt like I had a good handle on what the bloodwork meant, and I know iron deficiency anemia is a common symptom of celiac. But now I’m unsure what to think because iron deficiency typically causes microcytic (not macrocytic) anemia and involves low ferritin (not high). I can’t find any research on PubMed that addresses this combo. His other bloodwork showed no markers of systematic inflammation or anything else alarming. I’ve read through archived forum posts and found a number of adults with iron saturation very low, but could celiac cause it to develop so quickly in a toddler? 


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



Celiac.com Sponsor (A8-M):



Scott Adams Grand Master

It sounds like an issue with iron metabolism, but I'm definitely not an expert in that area. Did you find the article below by Ron Hoggan? He also wrote a book on iron metabolism as well (https://www.amazon.com/Iron-Edge-Ron-Hoggan-ED/dp/0973628448):

 

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now

  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      129,572
    • Most Online (within 30 mins)
      7,748

    Terri Bull
    Newest Member
    Terri Bull
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.2k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • xxnonamexx
      Is blending same as cold press? Is there any juice recipe you tried that you feel helped like the ginger turmeric? Is there a brand turmeric powder you used etc? I used Aloe vera years ago but the taste is hard to get down. What are your go to juices you made?
    • Scott Adams
      Your genetic test results confirm that you carry the highest-risk markers for celiac disease, specifically the HLA-DQ2 haplotype (while being negative for HLA-DQ8). The fact that both HLA-DQA1*05 and HLA-DQB1*0201 appear twice means you inherited identical copies from each parent, making you homozygous for these genes. This double dose of the DQ2.5 haplotype is significant because it indicates an even stronger genetic predisposition to celiac disease compared to those who only inherit one copy. Research suggests that people with this homozygous pattern may have a higher likelihood of developing the disease, potentially more severe immune responses to gluten, and a stronger association with dermatitis herpetiformis (which aligns with your diagnosis). While this genetic profile doesn’t guarantee worse symptoms, it does reinforce why strict gluten avoidance is critical for you. Since you’re already diagnosed, the main takeaway is that your results explain your biological susceptibility—no further genetic counseling is needed unless you have family planning questions. The repeating variants simply mean both parents passed you the same high-risk alleles, which is why your body reacts so strongly to gluten. Ultimately, your diagnosis and management remain the same, but this insight helps underscore the importance of lifelong dietary diligence.
    • Scott Adams
      It sounds like you and your daughter are navigating celiac disease with a lot of care and dedication, and it’s wonderful that you’re prioritizing her health and growth during this critical time. Since her antibody levels and growth have plateaued, tightening up her diet by avoiding eating out (except at dedicated gluten-free places) is a smart move—even if it’s challenging socially. Many parents of celiac kids report significant growth spurts once gluten exposure is minimized, so there’s hope she’ll catch up if her levels improve. As for the future, while her growth window closing may reduce some risks, celiac is lifelong, and staying as strict as possible will likely always be best to avoid long-term complications, even if occasional cautious outings become manageable later. Navigating this with a teenager is tough, especially with spontaneous social events. For unplanned outings, keeping safe snacks (like GF protein bars, nuts, or fruit) in her bag or your car can help. To boost nutrition, try sneaking in variety where you can—like lentil or chickpea pasta instead of rice pasta, or adding veggies and proteins to her favorite dishes. Involving her in meal planning might help with pickiness, and connecting with other celiac families or support groups could provide social strategies and emotional support. It’s exhausting, but you’re doing an amazing job—your efforts now will set her up for a healthier future. Hang in there!
    • Scott Adams
      This is good news--I hope we can get this done on a national level!
    • Scott Adams
      I use a blender and have made various juice recipes over the years. 
×
×
  • Create New...