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

Inadequate Testing


CarlaB

Recommended Posts

CarlaB Enthusiast

With all the talk on the board about testing and the talk about Enterolab, I emailed my GP and asked him to send me my records (he's a friend of mine). He did. I found out the only test he did was gliandin IgA ABS. I know there are four other tests, and you would think that after all the time here I would know, but why is this single test inadequate? Obviously it was, but I'm wondering if this is ever not elevated while the other indicators are?

Also, the GI only took three biopsies after a 6 week gluten challenge ... no wonder he didn't find anything.

One more question. My hemoglobin was 13.6, which is about as high as it gets for me, but my iron saturation was 52. I always thought that hemoglobin was the test for iron. Anyone know what iron saturation is? My doc told me to stop takng iron based on it, then in two months I could hardly get out of bed!

Thanks for your insight!


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



Celiac.com Sponsor (A8-M):



mmaccartney Explorer
With all the talk on the board about testing and the talk about Enterolab, I emailed my GP and asked him to send me my records (he's a friend of mine). He did. I found out the only test he did was gliandin IgA ABS. I know there are four other tests, and you would think that after all the time here I would know, but why is this single test inadequate? Obviously it was, but I'm wondering if this is even not elevated while the other indicators are?

Did you doc test you for IgA deficiency? You can be IgA deficient and your anti-gliadin IgA will be negative. Other tests (IgG, ttg, and others I can't think of right now) might have told a different story.

The Anti-Gliadin IgA test is highly specific, but not highly sensitive. Meaning that a positive is most likely gluten intolerance/celiac (This is the specific part), while there can be false negatives (This is the sensitive part). The IgG test is not highly specific, but is highly sensitive. Meaning that a positive could be a number of things, while false negatives aren't as likely.

Hope that helps more then it confuses you further!

penguin Community Regular

The iron saturation is a measure of how much transferrin you have, which is what carries the iron around and releases it into the blood stream. I would kill for a saturation of 52! Actually, he told you to stop taking iron because 52 is a bit high. My bloodwork shows the normal range to be between 20-50%. My iron saturation is a 4 :blink:

What that means is that you are in no way anemic :)

Homegirl Apprentice

Iron saturation is your ferritin level or your iron stores. Whey they are depleted, you become anemic. I would ask what the lab range is for that because 52 may still not be enough for you. My labs ranges are like from 20 to 150 I think. My doctor put me on an iron supplement and I am now up to 44. I have read that the optipmal level is 70-90.

penguin Community Regular
Iron saturation is your ferritin level or your iron stores. Whey they are depleted, you become anemic. I would ask what the lab range is for that because 52 may still not be enough for you. My labs ranges are like from 20 to 150 I think. My doctor put me on an iron supplement and I am now up to 44. I have read that the optipmal level is 70-90.

Ferritin is different from iron saturation. Iron saturation is also called Transferrin Saturation and it's a calculation of your total serum iron and your total iron binding capacity. The result is a percentage. Here's the formula: Open Original Shared Link

TFS = 100 x Serum Iron (ug/dl) / TIBC (ug/dl)

Here is more info: Open Original Shared Link

Ferritin is the protein found mostly in the liver that stores iron. Ferritin levels give the doctor an indication of how much iron is stored in the body.

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. - trents replied to Atl222's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Increased intraepithelial lymphocytes after 10 yrs gluten-free

    2. - cristiana replied to Atl222's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Increased intraepithelial lymphocytes after 10 yrs gluten-free

    3. 0

      Celiac Friendly Sports Camps - Academy Camps - Virtual Open House

    4. - lizzie42 posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      0

      Low iron and vitamin d

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

    • Total Members
      133,219
    • Most Online (within 30 mins)
      7,748

    Cmat
    Newest Member
    Cmat
    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

    • cristiana
    • trents
      Cristiana, that sounds like a great approach and I will be looking forward to the results. I am in the same boat as you. I don't experience overt symptoms with minor, cross contamination level exposures so I sometimes will indulge in those "processed on equipment that also processes wheat . . ." or items that don't specifically claim to be gluten free but do not list gluten containing grains in their ingredient list. But I always wonder if I am still experiencing sub acute inflammatory reactions. I haven't had any celiac antibody blood work done since my diagnosis almost 25 years ago so I don't really have any data to go by.   
    • cristiana
      I've been reflecting on this further. The lowest TTG I've ever managed was 4.5 (normal lab reading under 10).  Since then it has gone up to 10.   I am not happy with that.  I can only explain this by the fact that I am eating out more these days and that's where I'm being 'glutened', but such small amounts that I only occasionally react. I know some of it is also to do with eating products labelled 'may contain gluten' by mistake - which in the UK means it probably does! It stands to reason that as I am a coeliac any trace of gluten will cause a response in the gut.  My villi are healed and look healthy, but those lymphocytes are present because of the occasional trace amounts of gluten sneaking into my diet.   I am going to try not to eat out now until my next blood test in the autumn and read labels properly to avoid the may contain gluten products, and will then report back to see if it has helped!
    • lizzie42
      Hi, I posted before about my son's legs shaking after gluten. I did end up starting him on vit b and happily he actually started sleeping better and longer.  Back to my 4 year old. She had gone back to meltdowns, early wakes, and exhaustion. We tested everything again and her ferritin was lowish again (16) and vit d was low. After a couple weeks on supplements she is cheerful, sleeping better and looks better. The red rimmed eyes and dark circles are much better.   AND her Ttg was a 3!!!!!! So, we are crushing the gluten-free diet which is great. But WHY are her iron and vit d low if she's not getting any gluten????  She's on 30mg of iron per day and also a multivitamin and vit d supplement (per her dr). That helped her feel better quickly. But will she need supplements her whole life?? Or is there some other reason she's not absorbing iron? We eat very healthy with minimal processed food. Beef maybe 1x per week but plenty of other protein including eggs daily.  She also says her tummy hurts every single morning. That was before the iron (do not likely a side effect). Is that common with celiac? 
    • Scott Adams
      Celiac disease is the most likely cause, but here are articles about the other possible causes:    
×
×
  • 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.