Jump to content

hagedorns1018

Advanced Members
 View Profile  See their activity

  • Posts

    6

  • Joined

  • Last visited

hagedorns1018's Achievements

Newbie

Newbie (1/14)

  • Conversation Starter
  • Week One Done
  • One Month Later
  • One Year In

Recent Badges

1

Reputation

  1. hagedorns1018
    It really is frustrating! It took 20 years to get a diagnosis of CVID, and now that I have it, the doctors don't want to help me be proactive with my health. Diarrhea with malabsorption affects over 50% of the people with CVID yet I can't get a doctor to address my iron deficiency. The doctor who ordered the Celiac Panel was the closest I could get but then...
  2. hagedorns1018
    Ahh, that makes sense. Here (U.S.) if I tell my doctor I think I have celiac disease and this is why... and he doesn't respect my subjective diagnosis, I would go to a different doctor. I diagnosed my CVID by telling the doctor which tests to order! I certainly do not want celiac disease... it is a VERY restrictive diet and can easily impact social activities...
  3. hagedorns1018
    Irene, does your doctors' believing you change how they care for you? I'm just curious because since I was diagnosed with immunodeficiency last fall (which took 20 of my 29 years to finally get diagnosed!), it really hasn't changed the care I receive (other than being on IgG infusions). I'm not sure how confirming a dx of Celiac would change how they would...
  4. hagedorns1018
    Thank you so much! That is a great idea! It does seem there are a few other Zebras here, but, like you said, they haven't been active for a while. Also, great info to know to give it at least 6 months... I had 12 weeks in my head but I will definitely commit to it for at least 6 months before deciding whether or not things have improved.
  5. hagedorns1018
    A Dual Antigen Screen includes transglutaminase and deamidated gliadin-derived peptide antibodies, IgA and IgG. The "Dual" part just means they are checking both IgA and IgG since my IgA was low and can give a false negative. But being deficient in all immunoglobulins is pretty rare, so I don't think they take low IgG into account when they rely on the tests...
  6. hagedorns1018
    My IgA is low, so the Celiac Reflex was triggered to do the Celiac Disease Dual Antigen Screen. This test was negative (result 4; ref range 0-19). The problem is, I have low IgG as well. My understanding is that if serum IgA is low, the celiac tests involving IgA antibodies can give a false negative. My question is, does this same logic apply to low...
×
×
  • 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.