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 Hemoglobin..normal Ferritin..


sashamay23

Recommended Posts

sashamay23 Newbie

Well you guys have been horribly encouraging and as i said in my post, i'm going to go ahead and get the celiac panal assuming my doc orders it for me (i emailed her so i should find out tomarrow if she did..and i should then get my blood drawn mid-wk).

but all this talk about my anemia and iron levels has me very perplexed and i was wondering if any of you have any tips/advice/things to talk to my doc about...

i was diagnosed with anemia when i was about 13yrs old. I was exhasted/fatigued, my hair was falling out, i'd get cold chills all the time and had a hard time functioning in school. was told to take 900+ mg (give or take 5mg) every day for three months. I did. and things started to improve. but after the 3 months, i discovered i was still having issues if i didnt keep up on the iron.. and over the years, whenever id go more than a wk without taking a few 325mg tablets.. i would get so tired/exhasted/sleepy/sleep 17+ hrs and still be sooo lethargic etc. and thats basically been my life since then.

i brought it up with docs who have just told me "oh just keep taking ur iron then." - i can feel when it starts to get low and i have to take it, or i just cannot get out of bed and it interferes w/ work and life.

i finally bugged my new doc to do a ferritin test on me..and i thought itd be low but it came out "normal" at 70. my hemoglobin has never been over 12, and usually it stays between 11 and 12. i purposly stopped taking iron and was hardly functional for the last cbc test and i was only at 11. just "barely anemic"

it makes me wonder though with regards to this possible celiac thing.. my ferritin levels should be showin way lower for the week at the most, i can go w/out iron.. but i have been taking steady iron supplements (and of course increase in diet and such.. i natrually eat kinda high iron foods b/c iv felt this way so for long.)

it makes me wonder why i hafta keep taking iron and whats causing it..(ie celiac?) and am i maybe just ultra sensitive to lowish hemoglobin levels?

if i do have celiac, itd make since that i have to take so much iron to maintain my low levels.. but again...i dont know. im confused.

and then now i'm wondering if maybe a lot of my exhastion and fatige could be celiac..it sure explains all my intestinal issues iv had.

where b4 i was freakin out about it being celiac..and now.. i dunno, maybe im hoping it is? i wanna feel like a "normal" 22 yr old..

i thought id throw the question/thoughts/rambligns out there to see if any of you have had any similar expierences at all..and to try to make since of everything in my head if thats okay!

thanks so much!


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



Celiac.com Sponsor (A8-M):



CarlaB Enthusiast

I have the same thing ... and just about the same symptoms you describe (plus some because they became much worse at the years went on, but at 22 I had the same ones as you). Although I am gluten intolerant, my anemia issues come from babesia (a coinfection of Lyme Disease). Malaria can cause the same thing.

Of course, celiac can cause an iron deficiency, but since you're still in the "looking for what's wrong" stage, I thought I'd bring up a couple other things.

nora-n Rookie

Your ferritn (a transport protein made by the liver) could be thrown off for some different reasons.

nora

sashamay23 Newbie
Your ferritn (a transport protein made by the liver) could be thrown off for some different reasons.

nora

hm.. interesting...any ideas what could throw off ferritn levels? or give false levels or whatever?

CarlaB Enthusiast

Here's something interesting I found Open Original Shared Link

Ferritin is normally found mainly inside of cells, with only a small amount in the blood. When there is damage to organs that contain ferritin (especially the liver, spleen, and bone marrow), ferritin levels can become elevated even though the total amount of iron in the body is normal. Ferritin levels may not be particularly helpful in persons with Open Original Shared Link, chronic infections, cancers, or Open Original Shared Link (which are all associated with organ damage).

and this Open Original Shared Link

Ferritin test

The ferritin test measures the level of a protein in the blood that stores iron for later use by the body.

Medications that can cause increased ferritin levels include dietary iron supplements. In addition, some diseases that do not directly affect the body's iron storage can cause artificially high ferritin levels. These disorders include infections, late-stage cancers, lymphomas, and severe inflammations. Alcoholics often have high ferritin levels.

2kids4me Contributor

Iron is only one part of the puzzle, a substance called erythropoetin is produced by the kidneys and has a crucial role for hemoglobin production.

You can have anemias related to low B12 - in that case -ferrtin levels would be normal but the person would have a type of anemia called macrocytic anemia.

A person in kidney failure would have normal ferritin but be anemic because the kidney is no longer producing erythropoetin.

B 12 deficiency is common in celiac disease for 2 reasons

1) the damaged intestine cannnot absorb the vitamin

2) the intrinsic factor produced by gastric parietal cells that allows B 12 to be absorbed - is not produced because of autoimmune attack on those cells.

There are a number of threads about B 12 in this forum so it is a common problem.

Fatigue is also a big symptom for B12 deficiency, as well as clumsiness, numbness or tingling....

Many here have recommended the sublingual B 12 (under the tongue) for oral use.

I use B 12 injections because I do not produce the intrinsic factor - so nothing would be absorbed no matter how much I took orally.

Sandy

sashamay23 Newbie

huh..thankyou guys so much! that is really interesting. i'll hafta check into all that. =)


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



Celiac.com Sponsor (A8-M):



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. - SilkieFairy replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      IBS-D vs Celiac

    2. - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    3. - Jane02 replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    4. - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    5. 0

      Penobscot Bay, Maine: Nurturing Gluten-Free Wellness Retreat with expert celiac dietitian, Melinda Dennis

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

    • Total Members
      133,336
    • Most Online (within 30 mins)
      7,748

    Jeffrey Yeres
    Newest Member
    Jeffrey Yeres
    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

    • SilkieFairy
      Thank you both for the replies. I decided to bring back gluten so I can do the blood test. Today is Day #2 of the Challenge. Yesterday I had about 3 slices of whole wheat bread and I woke up with urgent diarrhea this morning. It was orange, sandy and had the distinctive smell that I did not have when I was briefly gluten free. I don't know if it's a coincidence, but the brain fog is back and I feel very tired.   
    • knitty kitty
      @Jane02, I hear you about the kale and collard greens.  I don't do dairy and must eat green leafies, too, to get sufficient calcium.  I must be very careful because some calcium supplements are made from ground up crustacean shells.  When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly.  This is safe and nontoxic.  Vitamin D level should be above 70 nmol/L.  Lifeguards and indigenous Pacific Islanders typically have levels between 80-100 nmol/L.   Levels lower than this are based on amount needed to prevent disease like rickets and osteomalacia. We need more thiamine when we're physically ill, emotionally and mentally stressed, and if we exercise like an athlete or laborer.  We need more thiamine if we eat a diet high in simple carbohydrates.  For every 500 kcal of carbohydrates, we need 500-1000 mg more of thiamine to process the carbs into energy.  If there's insufficient thiamine the carbs get stored as fat.  Again, recommended levels set for thiamine are based on minimum amounts needed to prevent disease.  This is often not adequate for optimum health, nor sufficient for people with absorption problems such as Celiac disease.  Gluten free processed foods are not enriched with vitamins like their gluten containing counterparts.  Adding a B Complex and additional thiamine improves health for Celiacs.  Thiamine is safe and nontoxic even in high doses.  Thiamine helps the mitochondria in cells to function.  Thiamine interacts with each of the other B vitamins.  They are all water soluble and easily excreted if not needed. Interesting Reading: Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/ Safety and effectiveness of vitamin D mega-dose: A systematic review https://pubmed.ncbi.nlm.nih.gov/34857184/ High dose dietary vitamin D allocates surplus calories to muscle and growth instead of fat via modulation of myostatin and leptin signaling https://pubmed.ncbi.nlm.nih.gov/38766160/ Safety of High-Dose Vitamin D Supplementation: Secondary Analysis of a Randomized Controlled Trial https://pubmed.ncbi.nlm.nih.gov/31746327/ Vitamins and Celiac Disease: Beyond Vitamin D https://pmc.ncbi.nlm.nih.gov/articles/PMC11857425/ Investigating the therapeutic potential of tryptophan and vitamin A in modulating immune responses in celiac disease: an experimental study https://pubmed.ncbi.nlm.nih.gov/40178602/ Investigating the Impact of Vitamin A and Amino Acids on Immune Responses in Celiac Disease Patients https://pmc.ncbi.nlm.nih.gov/articles/PMC10814138/
    • Jane02
      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency.  I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently meet from my diet is vitamin D. Calcium is a hit and miss as I rely on vegetables, dark leafy greens as a major source, for my calcium intake. I'm able to meet it when I either eat or juice a bundle of kale or collard greens daily haha. My thiamine intake is roughly 120% of my needs, although I do recognize that I may not be absorbing all of these nutrients consistently with intermittent unintentional exposures to gluten.  My vitamin A intake is roughly 900% (~6400 mcg/d) of my needs as I eat a lot of sweet potato, although since it's plant-derived vitamin A (beta-carotene) apparently it's not likely to cause toxicity.  Thanks again! 
    • knitty kitty
      Hello, @Jane02,  I take Naturewise D 3.  It contains olive oil.   Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets.  Fractionated coconut oil is not the same as coconut oil used for cooking.  Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the jar, and thus may be irritating to the digestive system. I avoid supplements made with soy because many people with Celiac Disease also react to soy.  Mixed tocopherols, an ingredient in Thornes Vitamin D, may be sourced from soy oil.  Kirkland's has soy on its ingredient list. I avoid things that might contain or be exposed to crustaceans, like Metagenics says on its label.  I have a crustacean/shellfish/fish allergy.  I like Life Extension Bioactive Complete B Complex.  I take additional Thiamine B 1 in the form Benfotiamine which helps the intestines heal, Life Extension MegaBenfotiamine. Thiamine is needed to activate Vitamin D.   Low thiamine can make one feel like they are getting glutened after a meal containing lots of simple carbohydrates like white rice, or processed gluten free foods like cookies and pasta.   It's rare to have a single vitamin deficiency.  The water soluble B Complex vitamins should be supplemented together with additional Thiamine in the form Benfotiamine and Thiamine TTFD (tetrahydrofurfuryl disulfide) to correct subclinical deficiencies that don't show up on blood tests.  These are subclinical deficiencies within organs and tissues.  Blood is a transportation system.  The body will deplete tissues and organs in order to keep a supply of thiamine in the bloodstream going to the brain and heart.   If you're low in Vitamin D, you may well be low in other fat soluble vitamins like Vitamin A and Vitamin K. Have you seen a dietician?
    • Scott Adams
      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product. 
×
×
  • 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.