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Hemochromotosis

Karina

By Karina
in Related Issues & Disorders

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Karina Explorer
Karina
Posted

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?

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wildones Apprentice
wildones
Posted

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
Karina
Posted
  • Author

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?

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    • marion wheaton
      Are Lindt chocolate balls gluten free?

      By marion wheaton · Posted

      Thanks for responding. I researched further and Lindt Lindor chocolate balls do contain barely malt powder which contains gluten. I was surprised at all of the conflicting information I found when I checked online.
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      By trents · Posted

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    • knitty kitty
      My only proof

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    • Jmartes71
      My only proof

      By Jmartes71 · Posted

      I have been diagnosed with celiac in 1994, in remission not eating wheat and other foods not to consume  my household eats wheat.I have diagnosed sibo, hernia ibs, high blood pressure, menopause, chronic fatigue just to name a few oh yes and Barrett's esophagus which i forgot, I currently have bumps in back of my throat, one Dr stated we all have bumps in the back of our throat.Im in pain.Standford specialist really dismissed me and now im really in limbo and trying to get properly cared for.I found a new gi and new pcp but its still a mess and medical is making it look like im a disability chaser when Im actively not well I look and feel horrible and its adding anxiety and depression more so.Im angery my condition is affecting me and its being down played 
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