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


mom

Recommended Posts

mom Rookie

:o Hey guys

I am now into 6 months of gluten free dieting and am still fighting anemia. My damage is severe in my small intestine, so my iron is slow toabsorb I am taking supplements and eating spinach etc. Even though there is still progress in my nutrition going well. I am still going to be scheduled for iron infusion this month. My whole point to this story, is that a good GI doc is well worth the time and effort to find and hold on to. I am blessed with mine. He is interested in my continuing health. I am also being checked out for other malfunctions that go along with celiac disease(thyroid) for one. I just hear so many negative stories on doctors that I just thought that I might add a glimmer or ray of hope out-there!

mom :)B)


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



Celiac.com Sponsor (A8-M):



Rikki Tikki Explorer

Mom:

I am happy that you have a good doctor. Your right they are hard to find. Since mine diagnosed me with celiac he was finished and I was left on my own. Hold onto him! ;)

debm5 Newbie

I also had anemia. My doctor put me on iv iron therapy. This was back in Sept. It brought my levels back to normal. The iron tabs did really nothing for me. I am having a cbc tomorrow. I am feeling a bit run down, but today I had a non epi seizure. They wipe me out. My spells show to be on of of the side effect to celiac, but the doctors say they don't think so,( Gi doc & neuro docs). If you have a doctor that believes you, GOD BLESS HIM!!!

Debbie

------------------------------

july-o4, positve biopsy for celiac disease. dec/04 h.pylori.

gluten-free since aug/04 (glutened accidental several times)

zarfstertugboat Newbie
:blink: hey mom, ....... nice to hear you have a good dr. ....they are hard to find. ...........one of my drs. says that my iron is ok, the other one says its low. do you know what the numbers should be? zarf (zarfstertugboat) HI.
mom Rookie

:D Thank you all for the info and helpful comments on this subject. I will move on to the infusion next week, feeling more secure than I would have.

Mom :):P;)

  • 1 month later...
julie5914 Contributor

Hey there,

Your hematocrit should be about 37-38 or above. Your hemoglobin should be 12 or above. The lowest I have been tested at was 30 and 10 and I responded to therapy through slow release pills. I am sorry some of you are having to do the infusions, but it is good that you have a doctor that is taking care of you and not just telling you to eat more veggies and meat!

  • 2 months later...
perfect010 Newbie

Well, low iron here's one for ya. My level was down to 7 one time and I had to have a blood transfusion. that was three years agao. Guess what I do to keep my iron up, and believe me I've done my research, Organic Full Flavor Black Strap Molasses, yeah you've got it right molasses. Look on the label, you will see that iron is highest in this than anything else i've ever eaten. It depends on the brand but you can find up to 70% of the daily recommended in some of the molasseses and others are only 20%. I just keep it in the fridge and once or twice a day I take a tablespoon and swallow it down. It is not the worst , i guess becasue I keep it cold. Drinking orange juice with your iron helps it absorb also, least that's what my dr told me. And did you know if you are eating spinach for iron you should eat it raw? In fact anytime you can eat your food raw, you are definitely getting the most out of it. I don't eat meat raw, but you know the stuff you can eat raw I do.


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



Celiac.com Sponsor (A8-M):



jenvan Collaborator

mom--

i had an infusion done earlier this year, and it has kept my iron levels up, since i was severe before. i am still in the normal range, so it is a treatment i'd definitely recommend. just make sure they test u for an allergy to it before you get the full infusion...

Corrine Rookie

Is low iron levels a problem even after being on gluten free diet for some time? My sister in law is having problems with her iron level and has been gluten-free for 4years.

Canadian Karen Community Regular

Low iron levels can be an ongoing problem despite a gluten free diet. I have been anemic my whole life. I can remember as a child getting my finger pricked every week to get my blood tested and ALWAYS being on iron supplements. Since my celiac kicked in in my early 20's, absorbing iron has been quite difficult for me. I have found the I can absorb best the Liquid Iron. Maybe because it is liquid it absorbs quicker before the celiac has a chance to get rid of it..... I was on that for all my pregnancies where my iron went dangerously low......

Karen

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. - 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.

    2. - 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.

    3. - 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.

    4. 0

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

    5. - Scott Adams 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.

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

    • Total Members
      133,331
    • Most Online (within 30 mins)
      7,748

    Kristy2026
    Newest Member
    Kristy2026
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • 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. 
    • trents
×
×
  • 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.