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

Ferritin


Jherm21

Recommended Posts

Jherm21 Community Regular

So I was diagnosed almost one year ago. I still have other issues going on but feel as if I've made some progress. At diagnosis my ferritin levels were pretty low borderline normal and a few weeks ago had another test done and ferritin was even lower. Like one number off from being normal. My lab was 15 and I think normal is from 14- 300 I was just wondering if low ferritin had caused anyone grief even with normal hemoglobin and normal iron panel (my iron has gone up since diagnsos) but ferritin is lower. Does anyone recommend supplementing or is it not concern since my iron is normal? My t3 hormone levels are super low but all other lab for thyroid were semi ok just wondering if this is affecting my thyroid function. I have so many symptoms of low iron but I have normal hemoglobin. I don't want to take iron unless it would help and not harm me. Any advice? My one doc knows nothing about ferritin and I see another doc coming up soon which I'll mention. But sometimes when I bring up ferritin they think I'm asking for something secretive! 


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



Celiac.com Sponsor (A8-M):



Ennis-TX Grand Master
48 minutes ago, Jherm21 said:

So I was diagnosed almost one year ago. I still have other issues going on but feel as if I've made some progress. At diagnosis my ferritin levels were pretty low borderline normal and a few weeks ago had another test done and ferritin was even lower. Like one number off from being normal. My lab was 15 and I think normal is from 14- 300 I was just wondering if low ferritin had caused anyone grief even with normal hemoglobin and normal iron panel (my iron has gone up since diagnsos) but ferritin is lower. Does anyone recommend supplementing or is it not concern since my iron is normal? My t3 hormone levels are super low but all other lab for thyroid were semi ok just wondering if this is affecting my thyroid function. I have so many symptoms of low iron but I have normal hemoglobin. I don't want to take iron unless it would help and not harm me. Any advice? My one doc knows nothing about ferritin and I see another doc coming up soon which I'll mention. But sometimes when I bring up ferritin they think I'm asking for something secretive! 

Vitamin C and higher iron foods like cocoa nibs, seeds proteins, and yellow pea protein powder can help. Just look at the DV % of iron on say a pure Pea Protein and Pumpkin Seed protein powder. Having some in a shake. yogurt, etc can help Amusingly I found mixing it into creamy soups to be interesting in moderation, and some garlic powder with it is a bit cheezy for a topping seasoning....>.> PS do not try making a cheese sauce with it....just taste off

cyclinglady Grand Master

When was the last time your GI checked your celiac antibodies?  If gluten is in your diet, that could prevent iron from being absorbed (enough to keep you going but not enough to actually store).  

When I was diagnosed, my ferritin was at a 2, but my hemoglobin was impacted.   Within a few months, it jumped to around 50.   Mind you, I am post menopausal.  Maybe a lower ferritin is okay for you?  

Jherm21 Community Regular

Interesting cyclinglady I do run about 3 times a week not long distance or anything but maybe there is some correlation with that. Never even thought maybe that's just my normal. Last time my antibodies were check was around February and they were normal levels meaning I didn't have any antibodies for gluten I tests negative on the blood test there was one blood test not taken and that was the EMA antibodies but we checked that 5 months in the diet and that was negative.  I still wonder if I have celiacs as I feel better off gluten and tested positive for biopsy. Gi diagnosed me as such so for now I'm just avoid gluten ?

Ennis pumpkin protein sounds good does it have flavor? Where do I buy all that suggested. 

Jherm21 Community Regular

I hope my message made sense my phone changes all my words!

Jherm21 Community Regular

I also went to the endocrinologist and was told today my vit d level has gone down and she told me to supplement but she didn't tell me how much to take? Should I just take one every other day. I live in Michigan so there's no sign of sunshine. What brands are best

Ennis-TX Grand Master
7 minutes ago, Jherm21 said:

I also went to the endocrinologist and was told today my vit d level has gone down and she told me to supplement but she didn't tell me how much to take? Should I just take one every other day. I live in Michigan so there's no sign of sunshine. What brands are best

I use liquid health in a dropper 0.75ml a day. Supposed to take 1ml every 2-3 days but I found my dosing at .5-.75ml daily to work best.  Get it on Luckyvitamin.com like my other supplements for the most part.


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



Celiac.com Sponsor (A8-M):



cyclinglady Grand Master
3 hours ago, Jherm21 said:

Interesting cyclinglady I do run about 3 times a week not long distance or anything but maybe there is some correlation with that. Never even thought maybe that's just my normal. Last time my antibodies were check was around February and they were normal levels meaning I didn't have any antibodies for gluten I tests negative on the blood test there was one blood test not taken and that was the EMA antibodies but we checked that 5 months in the diet and that was negative.  I still wonder if I have celiacs as I feel better off gluten and tested positive for biopsy. Gi diagnosed me as such so for now I'm just avoid gluten ?

Ennis pumpkin protein sounds good does it have flavor? Where do I buy all that suggested. 

Heal strike?  Nah, I would not bet on that.  Like you, I looked into that when my hemoglobin was dropping like crazy.   I run 3 times a week, swim and ride my bike.  Nothing excessive like those 100 mike racers.   ?.  It was really celiac disease that caused my low ferritin and not perimenopause (heavy cycles) or hypothyroid (when I was not running hyper) etc. which played a part, but they were not the root cause.  

Ennis-TX Grand Master
11 hours ago, Jherm21 said:

Interesting cyclinglady I do run about 3 times a week not long distance or anything but maybe there is some correlation with that. Never even thought maybe that's just my normal. Last time my antibodies were check was around February and they were normal levels meaning I didn't have any antibodies for gluten I tests negative on the blood test there was one blood test not taken and that was the EMA antibodies but we checked that 5 months in the diet and that was negative.  I still wonder if I have celiacs as I feel better off gluten and tested positive for biopsy. Gi diagnosed me as such so for now I'm just avoid gluten ?

Ennis pumpkin protein sounds good does it have flavor? Where do I buy all that suggested. 

Pumpkin seed protein is a light sweet, nutty flavor...it is made from pressed pumpkin seed kernels. OH on the Pea Protein you have to check the brands >.< I got naked pea last time since it was on sale, and started getting more anemic.......no clue why. I checked labels....no clue how they did it but Naked Pea contains 1% your DV of iron but Growing Naturals my standard version contains 30% your DV of iron. Pumpkin Seed Protein Contains 15-20% depending on brand. OH if you can not stomach the pea protein by itself...or have it in smoothies.....they make chips out of it....1 serving is 28% your iron DV.  THey might sound odd and not be the best tasting....but I would rather eat these then go back on supplements....they worked good but damn the stomach and gut issues those iron pills caused -_-
Open Original Shared Link
Open Original Shared Link
Open Original Shared Link
 

cap6 Enthusiast

Very interesting post!  When first diagnosed my ferritin levels were so low they talked about iron infusions.  Lucky to bring it up to acceptable levels with prescription iron supps.  On and off  through the years I would feel the old tired feeling and go back on the iron supps.

Flash forward 8 years and I had those old tired feelings again so went in to have my irons levels tested.   This time my ferritins were 1200, normal should be about 50.   Seems I have genetic hemochromatosis, an inherited disease (a gene from each parent) where my body keeps on making too much iron.,  Now I have to go in for weekly bloodletting of 1 pint a week until the levels go down , then monthly maintenance blood lets for life. 

All of this said, I would find a good  hematologist to assist you.   Don't mess around with iron! 

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

      Fruits & Veggies

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

      heaps of hope!

    3. - knitty kitty replied to mamaof7's topic in Parents, Friends and Loved Ones of Celiacs
      6

      Help understand results

    4. - knitty kitty replied to hjayne19's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      10

      Insomnia help

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

    • Total Members
      132,994
    • Most Online (within 30 mins)
      7,748

    KimberlyS
    Newest Member
    KimberlyS
    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

    • 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.  
    • trents
      Welcome to the celiac.com community @pothosqueen!   Can you be more specific about which IGA test was run that resulted in 114 score and said to be "normal" and could you please include the reference range for what would be normal? By the size of that number it looks like it may have been what we call "total IGA" but that test is not usually run without also running a TTG-IGA. Total IGA tests for IGA deficiency. If someone is IGA deficient, then the celiac-specific IGA tests like the TTG-IGA will be inaccurate. Was this the only IGA test that was run? To answer, your question, yes, a positive biopsy is normally definitive for celiac disease but there are some other medical conditions, some medications and even some food proteins in rare cases that can cause positive biopsies. But it is pretty unlikely that it is due to anything other than celiac disease.
×
×
  • 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.