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

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.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,728
    • Most Online (within 30 mins)
      7,748

    Jo-Anne Bloom
    Newest Member
    Jo-Anne Bloom
    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

    • Gigi2025
      Thanks much Scott.  Well said, and heeded.   I don't have Celiac, which is fortunate.
    • Scott Adams
      Do you have the results of your endoscopy? Did you do a celiac disease blood panel before that?  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:    
    • Scott Adams
      It is odd that your Tissue Transglutaminase (TTG) IgA level has bounced from the "inconclusive" range (7.9, 9.8) down to a negative level (5.3), only to climb back up near the positive threshold. This inconsistency, coupled with your ongoing symptoms of malabsorption and specific nutrient deficiencies, is a strong clinical indicator that warrants a more thorough investigation than a simple "satisfactory" sign-off. A negative blood test does not definitively rule out celiac disease, especially with such variable numbers and a classic symptomatic picture. You are absolutely right to seek a second opinion and push for a referral to a gastroenterologist. A biopsy remains the gold standard for a reason, and advocating for one is the most direct path to getting the answers you need to finally address the root cause of your suffering. 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:    
    • Scott Adams
      There is a distinction between gluten itself and the other chemicals and processing methods involved in modern food production. Your experience in Italy and Greece, contrasted with your reactions in the U.S., provides powerful anecdotal evidence that the problem, for some people, may not be the wheat, but the additives like potassium bromate and the industrial processing it undergoes here. The point about bromines displacing iodine and disrupting thyroid function is a significant one, explaining a potential biological mechanism for why such additives could cause systemic health issues that mimic gluten sensitivity. It's both alarming and insightful to consider that the very "watchdog" agencies meant to protect us are allowing practices banned in many other developed countries. Seeking out European flour and your caution about the high-carb, potentially diabeticgenic nature of many gluten-free products are excellent practical takeaways from your research, but I just want to mention--if you have celiac disease you need to avoid all wheat, including all wheat and gluten in Europe.
    • Rejoicephd
      @Scott Adams That's actually exactly what I ended up asking for— vodka tonic with Titos.  I saw on their website that Tito's is certified gluten-free (maybe many of the clear vodkas are, I don't know, I just happened to look up Tito's in advance). I should have actually specified the 'splash' though, because I think with the amount of tonic she put in there, it did still end up fairly sweet.  Anyway, I think I've almost got this drink order down!
×
×
  • 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.