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

If I Am Gluten Free- Why Would My Ferritin Be Low?


ItchyMeredith

Recommended Posts

ItchyMeredith Contributor

I have been strictly gluten free for almost a year now. When I had my bloodwork done a year ago my iron levels were okay- though my bloodwork came back positive for the celiac antibodies. Now- the celiac antibodies are normal because I have been gluten free for so long but my ferritin is 13. What the heck? Does anyone know why that would be?

Meredith


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



Celiac.com Sponsor (A8-M):



Ursa Major Collaborator

Well, apparently you are not getting enough iron in your diet. Being a vegetarian could be the cause, as the best source of iron is meat.

As a vegetarian who have to always take a good iron supplement to make up for what other people get in their diet. That obviously goes for B12 as well.

happygirl Collaborator

A lot of people have low iron problems and they aren't related to Celiac. Yours may have nothing to do with your dx of Celiac. People's iron stores can ebb and flow, for various reasons.

AliB Enthusiast

I kind of have a theory, and it is only a theory, but I wonder whether when we are ingesting gluten and malabsorption becomes an issue the reason we get so many illnesses and diseases could be because the body is drawing needed nutrients from other parts of itself in order to keep the essential organs going - for instance like the fact that many with Osteoporosis have been found to be suffering with Celiac. Their bodies are drawing calcium from the bones for use in other organs it would consider more important, like the heart.

Perhaps, now the body is starting to function more effectively and re-balance itself it demands more of the nutrients from the food we eat. Many follow a vegetarian/vegan diet out of choice, perhaps due to ethical reasons. What I have recently discovered though, is that Metabolically we are all different. Some are fast-oxidisers and need protein and fat, some are slow-oxidisers and need more carbs.

Those who metabolically sit at that end of the scale may cope quite well with a low-protein, high-carb vegetarian diet, but if one is at the other end of the scale, without enough animal-based purines (protein), their bodies cannot function properly. Its all in the genes.

I am an extreme 'protein' type. That means, that whether I wanted to or not, I could never be vegetarian. I could never get enough of the right protein for my type from vegetables and my body does not cope with vegetables. I did the Alkalising Diet last year. Yes, I lost weight and my Candida issues improved (probably because it was mainly veg and a little protein, but low-carb), but my stomach got so sore and painful after a month I couldn't keep going.

I now realise that it was not only because those who need a high-protein, high-fat diet should not eat very much in the way of vegetables or fruit but also because my body works the other way around to a carb-type, instead of alkalising my body it was actually making it more acid! My background is Anglo-saxon - originating from northern Scandinavia - you can't grow vegetables in frozen ground!!! So much of it makes sense.

Apart from the higher protein need (I would always get headaches if I didn't get enough!) and inability to cope with grains and carbs (which are unknown in the colder climes), I never have been able to cope with much in the way of fruit or vegetables, even though I love them. Weird. It's like a jigsaw puzzle slotting into place. My husband is a mixed metaboliser - much to my chagrin he can eat pretty much anything!

Sorry, I digressed. Anyway, I was just thinking that may quite possibly be why you now seem to need more iron.

Guest hightop girl

I have an autoimmune issue that does not allow me to absorb B12 properly as well as iron and other nutrients. No amount of meat, iron supplements or spinach will ever change that. My understanding was that it was not all that uncommon with celiac. I do not test particulary low on B12, but the antibody test came back positive. I listened to people harp on what I ate for almost a year before they finally tested for the antibody. Once my stores are too low (mine were so low they almost did a transfusion, but did the IV iron infusions instead) I have to have another infusion, they won't come back up on their own.

Takala Enthusiast

I don't know exactly why it would be in your case (other than diet and supplements) but besides taking a multi vitamin and a B complex, you can try eating a spoonful of blackstrap molasses every day. Crude but effective, if it is the kind of problem that responds to eating more of the missing nutrient.

TrillumHunter Enthusiast

I have this issue as well. I'm getting scoped (both ends ;):lol: ) on Wednesday to look for bleeding. I don't think they will find any but I don't know what else to do. If I take 400mg of iron and eat no dairy, I can get my serum iron up to a low normal. But all that iron is taking a toll on my stomach I think. Two years ago I had a gyno work up and that wasn't the issue.

Hightop, what is your autoimmune issue if you don't mind me asking? I have problems with b12 as well.

I'm not a vegetarian.


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



Celiac.com Sponsor (A8-M):



fedora Enthusiast

meredith,

my hubby has been a vegetarian-no fish, poultry, pork, beef-his entire life. His iron is great. But as a woman who has not reached menopause and is anemic, I do pay close attention to iron. I use Floravital, liquid supplement. And beets, spinach, other veggy sources. And cast iron pans only. The floravital got me through a full term pregnancy with twins( I wasn't so sick then). Good luck

Guest hightop girl

I wish I had not been so sick and out of it when they finally figured it out. I had been scoped both ends and tried oral iron supplements for at least 6 months as my iron dropped lower and lower. I think they said it was part of a multiple autoimmune syndrom and had to do with antiparietal cell antibodies. Basically they treat it as pernicious anemia even though my B12 is not low, just on the lower end of normal and I will have IV iron probably at least once a year. I also have Grave's disease, vitiligo, alopecia at times, and reynauds.

ItchyMeredith Contributor

Thanks everyone for your response. My doctor wants me to take Slow Fe. I am already taking a prenatal because we are thinking of TTC again. Usually, the iron in a prenatal is enough. At first my doctor said that it can be normal for women to be low in iron because of menstruation- but that explanation doesn't work with me because I haven't regained my fertility back yet due to breastfeeding. Who knows what is going on? I am going to take these supplements and hope that all is well when we recheck in 3 months. If my levels still aren't up by then I am sure my doctor and I will have to figure out why.

**Does nursing leech iron from your body? I'm going to look that up.

Joni63 Collaborator

Hi ItchyMeredith,

I'm currently having a similar problem. Been gluten free for 9 months and serum ferritin was just found to be 7. It was never tested before, but I have felt tired and like I've been slowly losing energy for years.

Some things I think have contributed to this are increasing my exercise, heavy menstrual cycles, and cutting out iron fortified cereals since going gluten free. (recently started having Rice Chex which is iron fortified = yeah). I also don't each much red meat, but do eat chicken and leafy green veggies.

Do you think this has gradually developed? You mentioned that your iron levels were ok when you got dx'd, are you sure your ferritin was checked at that time? A CBC doesn't show ferrritin and they have to order that as a separate test. Mine wasn't checked until I felt so bad I was begging them to test me for things and telling them I felt horrible.

My celiac antibodies also all came back normal, within 6 months. You would think we would be absobing much better at this point.

I've read you need extra iron during pregnancy, but not anything about during breastfeeding. Did you find out anything about that? I know the baby would get it's nutrients from breastfeeding, even if you are low.

Let us know if you find out anything!

ItchyMeredith Contributor

Joni-

That's a good point- I don't know if my ferritin was the actual thing that was checked. Right when I got my diagnosis my doctor took my blood. When I got my physical this year the new doc looked back in my records and noticed that I wasn't anemic when I got my celiac diagnosis. That's all she said.

That's really interesting- I wonder!

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. - trents replied to mamaof7's topic in Parents, Friends and Loved Ones of Celiacs
      7

      Help understand results

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

      Fruits & Veggies

    3. - wellthatsfun posted a topic in Gluten-Free Recipes & Cooking Tips
      0

      heaps of hope!

    4. - Tanisha L commented on Scott Adams's article in Kids and Celiac Disease
      1

      New Study Reveals Age and Racial Gaps in Pediatric Celiac Testing

    5. - knitty kitty replied to mamaof7's topic in Parents, Friends and Loved Ones of Celiacs
      7

      Help understand results

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

    • Total Members
      132,997
    • Most Online (within 30 mins)
      7,748

    IwannabHealthy
    Newest Member
    IwannabHealthy
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • trents
      Actually, it would be more correct to say that the genetic potential to develop celiac disease is passed down from parents to children. About 40% of the general population has the genetic potential to develop celiac disease but only about 1% of the general population actually do. But it is also true that the offspring of those who do have active celiac disease are at a considerably higher risk of developing active celiac disease than those of parents who have the genes but don't develop the disease. Some recent, larger studies put the risk at near 50% for the first degree relatives of those who have active celiac disease.
    • Jordan Carlson
      Hello everyone! Been a while since I posted. The past few moths have been the best by for recovery for myself. I have been the least bloated I have ever been, my constant throat clearing is almost gone, I have stopped almost all medication I was prevously taking (was taking vyvanse for adhd, pristiq for anxiety,fomotadine/blexten for histamine blockers and singulair). Only thing I take now is Tecta. I also no longer get any rashes after eating. Things are going very well. Most success came actually once I upped my B12 daily dose to 5,000 mcg. I do have one thing I am un able to figure out and want to see if anyone else has this issue or has experience working around it. Ever since I was born I have always had a issue getting fruits and veggies down. No matter how hard I tried, it would always result in gagging or throwing up. Always just thought I was a picky eater. Now that my stomach and system has healed enough that I can feel when something is off almost istantly, I notice that after eating most fruits (sometimes I am ok with bananas) and veggies, my stomach instantly starts burning and my heart starts to pound and I get really anxious as if my body doesnt know what to do with what just enetered it. So I am thinking now that this is what probably was going on when I was born and my body started rejecting it before which caused this weird sensory issue with it causing the gagging. Hoping someone has some exprience with this as well because I would love to be able to enjoy a nice fruit smoothie once in a while haha. Thanks everyone!
    • wellthatsfun
      i know i've been rather cynical and sad about being fully diagnosed in june 2025, but my boyfriend has been consistently showing me the wonderful world that is gluten free cooking and baking. in the past couple of days he's made me a gluten free rice paper-wrapped spanakopita "pastry", plus a wonderful mac and cheese bechamel-ish sauce with gluten free pasta (san remo brand if you're in australia/if you can get your hands on it wherever you are).  those meals are notably gluten free, but mainly he's been making me easy gluten free meals - chili mince with white rice and sour cream, chicken soup with homemade stock from the chicken remains, and roast chickens with rice flour gravy and roast veggies. i'm a bit too thankful and grateful lol. how lucky could i possibly be? and, of course, for those who don't have someone to cook for them, it's quite easy to learn to cook for yourself. i've been making a lot of meals for us too. honestly, cooking is pretty darn fun! knowing basic knife skills and sanitary practices are all you really need. experimenting with spices will help you get on track to creating some really flavourful and yummy dishes. coeliac is a pain, but you can use it to your advantage. healthier eating and having fun in the kitchen are major upsides. much luck to all of you! let's be healthy!
    • knitty kitty
      That test is saying that your daughter is not making normal amounts of any IGA antibodies.  She's not making normal amounts of antibodies against gliadin, not against bacteria, not against viruses.  She is deficient in total IGA, so the test for antigliadin antibodies is not valid.  The test was a failure.  The test only works if all different kinds of antibodies were being made.  Your daughter is not making all different kinds of antibodies, so the test results are moot.  Your daughter should have the DGP IgG and TTG IgG tests done.   The tests should be performed while she is still consuming gluten.  Stopping and restarting a gluten containing diet can make her more sick, just like you refuse to eat gluten for testing.  Call the doctor's office, request both the IGG tests. Request to be put on the cancellation list for an appointment sooner.  Ask for genetic testing.   Celiac disease is passed on from parents to children.  You and all seven children should be tested for genes for Celiac disease.  Your parents, your siblings and their children should be tested as well.  Eating gluten is not required for genetic testing because your genes don't change.  Genetic testing is not a diagnosis of Celiac disease.  Just having the genes means there is the potential of developing Celiac disease if the Celiac genes are activated.  Genetic testing helps us decide if the Celiac genes are activated when coupled with physical symptoms, antibody testing, and biopsy examination. It's frustrating when doctors get it wrong and we suffer for it.  Hang in there.  You're a good mom for pursuing this!  
    • knitty kitty
      @hjayne19, So glad you found the information helpful.  I know how difficult my struggle with anxiety has been.  I've been finding things that helped me and sharing that with others makes my journey worthwhile. I like Life Extension Bioactive Complete B Complex.  It contains the easily activated forms of B vitamins needed by people with the MTHFR genetic variation often found with Celiac disease.   Avoid B Complex vitamins if they contain Thiamine Mononitrate if possible.  (Read the ingredients listing.)  Thiamine Mononitrate is the "shelf-stable" form of B 1 that the body can't utilize.  B vitamins breakdown when exposed to heat and light, and over time.  So "shelf-stable" forms won't breakdown sitting on a shelf in a bright store waiting to be bought.  (It's also very cheap.)  Thiamine Mononitrate is so shelf-stable that the body only absorbs about thirty percent of it, and less than that is utilized.  It takes thiamine already in the body to turn Thiamine Mononitrate into an active form.   I take MegaBenfotiamine by Life Extension.  Benfotiamine has been shown to promote intestinal healing, neuropathy, brain function, glycemic control, and athletic performance.   I take TTFD-B1 Max by Maxlife Naturals, Ecological Formulas Allthiamine (TTFD), or Thiamax by EO Nutrition.  Thiamine Tetrahydrofurfuryl Disulfide (TTFD for short) gets into the brain and makes a huge difference with the anxiety and getting the brain off the hamster wheel.  Especially when taken with Magnesium Threonate.   Any form of Thiamine needs Magnesium to make life sustaining enzymes and energy.  I like NeuroMag by Life Extension.  It contains Magnesium Threonate, a form of magnesium that easily crosses the blood brain barrier.  My brain felt like it gave a huge sigh of relief and relaxed when I started taking this and still makes a difference daily.   Other brands of supplements i like are Now Foods, Amazing Formulas, Doctor's Best, Nature's Way, Best Naturals, Thorne, EO Nutrition. Naturewise.  But I do read the ingredients labels all the time just to be sure they are gluten and dairy free. Glad to help with further questions.  
×
×
  • 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.