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

Okay, Guys, Need Your Input On Something.....


Canadian Karen

Recommended Posts

ravenwoodglass Mentor
Thanks Guys!

The liquid iron was the first we tried. I am eating liver till it is coming out of my batuzzis!!! She also wrote on the note to the specialist:

"despite p.o. elemental iron, is ti time for systemic iron?"

I also have been chronically anemic since I was a child. I can remember making weekly visits to a doctor when I was little and getting my finger pricked all the time (I guess that's how they tested it for kids??)

Hugs.

Karen

How are your B12 levels? At my worst my iron and B12 were low but the B12 was lower. After sublingual B12 supplements it was easier to get my iron back where it should be. Don't know if it would apply for others but it helped my brain fog and fatigue quicker than I thought it would.


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



Celiac.com Sponsor (A8-M):



Canadian Karen Community Regular

I just heard from the specialist's office:

He wants me to continue with the oral iron supplements for the time being..... :huh:

I swear, sometimes you feel like you are just banging your head against a wall.... <_<

Karen

jenvan Collaborator

Karen... A suggestion :) I always take things into my own hands or insist when need be. Perhaps your doc is stubborn...I'm not sure. When my doc said to continue the pills after a long time on them with no results, I insisted on seeing a hematologist to get the infusion. Once I got to the hema., she totally agreed. Anywho, I can't remember how long you have been this way...but if you are refractory, you can probably take pills till you are blue in the face w/o results. No villi, no iron. Just a thought :)

Canadian Karen Community Regular

I shouldn't have much of a problem getting a referral to a hematologist since I was supposed to go to one anyway for another test, and I have been procrastinating on that one.

Both my brother and my father have something called "lacking Factor 5", whatever that is, and all members of the family are supposed to get tested for it. Dad's condition is actually so severe that the medication he takes for it is rat poison (Warfarin, something like that.....). Anyway, I was supposed to go to brothers hematologist for the blood test. I will work on getting in to see him.....

Karen

mommida Enthusiast

I think Jen has given you the best advice here. Most people on iron supplements get the big "C". You can't be absorbing any of it.

L.

jenvan Collaborator

I have a friend with that disease Karen. Glad you're going to try the hema. Let me know how it goes!

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,611
    • Most Online (within 30 mins)
      7,748

    Rotary
    Newest Member
    Rotary
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • itsdunerie
      Dang......did it again and yeah I should admit I am 63 with clumsy phone thumbs. I started feeling better quickly and a doctor a year later said I had to eat  poison (gluten) every day for a month so he could formally diagnose me and NO FREAKING WAY. I couldn't then and can't imagine putting my body through that crap (no pun intended) on purpose ever again.  Why ingest poison for a month to have some doctor say Hey, All you Have To Do Is Never Eat poison Again.. 
    • itsdunerie
      Poop head, sorry, but I accidentally posted and can't figure out how to continue my post. My long winded post was going to tell you that after I figu
    • itsdunerie
      15 years ago my best friend 'diagnosed' me as Celiac. Her little nephew had been formally diagnosed and her observations of me dealing with brain fog, stomach problems and other stuff had her convincing me to try going gluten free. Oh my heavens, within 3 days, no lie, I felt human again. Took me about a y
    • Scott Adams
      It seems like you have two choices--do a proper gluten challenge and get re-tested, or just go gluten-free because you already know that it is gluten that is causing your symptoms. In order to screen someone for celiac disease they need to be eating gluten daily, a lot of it--they usually recommend at least 2 slices of wheat bread daily for 6-8 weeks before a blood screening, and at least 2 weeks before an endoscopy (a colonoscopy is no used to diagnose celiac disease). Normally the blood panel is your first step, and if you have ANY positive results there for celiac disease the next step would be to take biopsies of your villi via an endoscopy given by a gastroenterologist.  More info on the blood tests and the gluten challenge beforehand is below: The article includes the "Mayo Clinic Protocol," which is the best overall protocol for results to be ~98% accurate. Here is more info about how to do a gluten challenge for a celiac disease blood panel, or for an endoscopy: and this recent study recommends 4-6 slices of wheat bread per day:   Not to discourage you from a formal diagnosis, but once you are diagnosed it may lead to higher life and medical insurance rates (things will be changing quickly in the USA with the ACA starting in 2026), as well as the need to disclose it on job applications. While I do think it's best to know for sure--especially because all of your first degree relatives should also get screened for it--I also want to disclose some negative possibilities around a formal diagnosis that you may want to also consider.  
    • Wheatwacked
      Yes.  Now, if you hit your finger with a hammer once, wouldn't you do your best not to do it again?  You have identified a direct connection between gluten and pain.  Gluten is your hammer.  Now you have to decide if you need a medical diagnosis.  Some countries have aid benefits tgat you can get if you have the diagnosis, but you must continue eating a gluten-normal diet while pursuing the diagnosis. Otherwise the only reason to continue eating gluten is social. There are over 200 symptoms that could be a result of celiac disease.. Celiac Disease and Non Celiac Gluten Sensitivity  both cause multiple vitamin and mineral deficiency.  Dealing with that should help your recovery, even while eating gluten.  Phosphatidyl Choline supplements can help your gut if digesting fats is a problem,  Consider that any medications you take could be causing some of the symptoms, aside from gluten.        
×
×
  • 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.