Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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

Hemochromotosis


Karina

Recommended Posts

Karina Explorer

My doc called with lab results today. I had a bunch of minerals and stuff tested for since my celiac disease diagnosis. Anyway, my iron panel stuff was HIGH not low, and in fact it was significantly high, so doc says I may have Hemochromotosis, which can lead to liver problems later. I am so confused, b/c you would think having celiac disease would make it not likely to have high iron stores. I was tested for celiac disease via endoscopy and biopsies. Has anyone hear heard of this being related at all to celiac disease?


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



Celiac.com Sponsor (A8-M):



wildones Apprentice

My son and I both have celiac disease and high iron levels and have had liver problems. He has had his iron levels tested fairly frequently because he also has short-gut (more than 70% of small intestines removed, his ileocecal valve removed and part of his colon removed). I remember doing research on hemochromotosis several yrs ago, and was told that I don't have it. I guess I didn't really answer your question :unsure: did I ?

Lorraine

Karina Explorer

Lorraine,

My doc is doing a genetic test to see if I have it. Have you had that done? He also said that the disease doesn't really manifest itself in women until age 50-60 due to pregnancies and menstruation. I was anemic in my pregnancies and had to take supplemental iron :huh: . Another weird thing is a few months ago when I had a physical my "iron" level was low, but my GI doc says that wasn't accurate b/c it wasn't a full iron panel and was only showing what happened to be circulating in my blood at the time of the blood draw. How old is your son? Have they diagnosed him with Hemochromotosis? My doc says it is common, even though it is weird that I would have it and have celiac disease. Exactly what liver problems have you guys had? Another weird thing was that my doc said my bilirubin was high, but my other liver tests were fine. He said this is yet another thing called Gilbert's sydrome--it is benign and requires no treatment or anything, but I asked him was he sure it wasn't related to the high iron, and he said no he was certain it was just Gilbert's. We did of course discuss the ramifications of untreated Hemochrom. on the liver. I am very confused at this point. Do you follow a special diet for the high iron?

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. - TerryinCO replied to TerryinCO's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      21

      New Guy Here...

    2. - ShRa posted a topic in Gluten-Free Restaurants
      0

      Gliadin X 

    3. - trents replied to TerryinCO's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      21

      New Guy Here...

    4. - trents replied to Tazzy11's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      Pathology results - coeliac positive?

    5. - Scott Adams replied to Tazzy11's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      Pathology results - coeliac positive?


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      127,565
    • Most Online (within 30 mins)
      7,748

    Gary moody
    Newest Member
    Gary moody
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70.3k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • TerryinCO
      I beleive so.  Waiting for response from NP.
    • ShRa
      Is Gliadin X recommended/safe for accidental glutening or where there is a risk of cross contamination? Or is there any other recommendation in such case? We travel alot to meet family and dine out as well. There is always risk of accidental glutening and cross contamination. Thanks.   
    • trents
      So, is their reasoning for doing another biopsy after you've been gluten free for awhile to get a comparison of before and after? In other words, there should be healing of the SB lining if you go gluten free for awhile if you have celiac disease?
    • trents
      Welcome to the forum, @Tazzy11! Yes, your DGP-IGG test is positive. It means you could have celiac disease. But there are other possible causes for an elevated DGP-IGG count. I note that your TTG-IGA was not positive. The TTG-IGA is considered the chief celiac antibody test and a bit more reliable than the DGP-IGG. But let me ask you an important question. Prior to the blood draw, had you already begun to limit your intake of gluten? Also, were these the only two tests ordered to check for celiac disease? A physician should always order what we call the "total IGA" test (it goes by other names as well) to check for IGA deficiency. If you are IGA deficient, the scores for individual IGA celiac antibody tests, such as the TTG-IGA will be falsely low. By the way you spelled "coeliac" I judge you must be in the UK. There are several other antibody tests that can ordered when checking for celiac disease in order to get a more complete picture. Here is an article outlining the various tests:  
    • Scott Adams
      This article might be helpful. It breaks down each type of test, and what a positive results means in terms of the probability that you might have celiac disease. One test that always needs to be done is the IgA Levels/Deficiency Test (often called "Total IGA") because some people are naturally IGA deficient, and if this is the case, then certain blood tests for celiac disease might be false-negative, and other types of tests need to be done to make an accurate diagnosis. The article includes the "Mayo Clinic Protocol," which is the best overall protocol for results to be ~98% accurate.    Per this article: They will likely schedule an endoscopy to see if you have celiac disease, and for this they would want you to continue eating gluten daily until that test is completed.
×
×
  • Create New...