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.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Theresa2407 replied to Theresa2407's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Probiotics

    2. - KathyR37 replied to KathyR37's topic in Coping with Celiac Disease
      2

      New here

    3. - Scott Adams replied to KathyR37's topic in Coping with Celiac Disease
      2

      New here

    4. - KathyR37 posted a topic in Coping with Celiac Disease
      2

      New here

    5. - Scott Adams replied to Colleen H's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      3

      Celiac attack confusion and anxiety


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,808
    • Most Online (within 30 mins)
      7,748

    mhendy123
    Newest Member
    mhendy123
    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

    • Theresa2407
      thank you for your advice.   I have always taken them and I use Stonehedge because they are in a glass bottle, but don't have to be refrigerated.  I also like they are 3rd party tested and state gluten free. But you never know if something better has come alone over the years.
    • KathyR37
      Thank you for your response. I have already learned about the info you sent but i appreciate your effort. I am the only one in my family cursed by this disease. I have to cook for them too. I make sure that my utensils are free of gluten and clean after using them for other food. I use non-porous pots and pans and  gloves when cooking for them. One huge problem I have is a gag reflex out of this world and if something doesn't taste good it is not going down. Most commercially made breads and such taste like old cardboard.Pastas are about the same. I did find one flour that I like and use it regularly, but it is so expensive! All gluten free food is way more expensive. I only eat twice a day because I cannot afford to buy all that. We live on a very low income so my food purchases are quite limited.
    • Scott Adams
      What you've described—the severe weight loss, the cycle of medications making things worse, and the profound fear of eating before leaving the house—is a heavy burden to carry for 15 years. It is absolutely not your fault. While everyone's journey with celiac is different, the struggles with the learning curve, social isolation, and dietary grief are feelings many in the community know all too well. Your question about whether you should just eat what you want and manage the symptoms is a heartbreaking one, born from years of frustration. It's crucial to know that the diarrhea is a sign of ongoing damage to your small intestine from gluten, and simply managing the symptom with Imodium doesn't stop that internal harm or the risk of other complications. The fact that you are still getting sick within an hour of eating, even while trying to be gluten-free, is a huge red flag that something isn't right. This could be due to cross-contamination in your kitchen (e.g., using a shared toaster, colander, or condiment jars), hidden gluten in foods, or the possibility of another concurrent condition like refractory celiac disease. Don't give up!  This article has some detailed information on how to be 100% gluten-free, so it may be helpful (be sure to also read the comments section.):    
    • KathyR37
      I am new here but celiac disease is not new to me. I was diagnosed with it at age 60. At the time I weighed a whopping 89 pounds. I was so ignorant to celiac so I buried myself in learning all about it and looking for food I could eat. I lost so much weight and stayed sick all the time. So to combat the sickness I was give all sorts of meds for loose bowels and vomiting. All that just made me sicker. Eventually I chucked it all and went back to eating like I had all my life. Now I am from the south and biscuits and gravy are a big part of our food, as are breaded foods, pasta, and sandwich bread. Through the years I would try to do the gluten free thing again and am doing it now. It has not helped any. Within and hour of eating I have to run to the bathroom. I am now 75 and am wondering if I should just forget it and eat what I like, take Immodium and live the best I can. I cannot eat before going anywhere for fear of embarrassing myself. Family and church dinners are out of the question unless I eat and run straight home. I am so frustrated I just want to sit down and cry or throw something. Does everyone go through all this?
    • Scott Adams
      This article, and the comments below it, may be helpful:    
×
×
  • 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.