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Secondary Hemochromatosis?

Candy

By Candy
in Related Issues & Disorders

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Candy Contributor
Candy
Posted

I seem to get too much Iron or it isn't being processed correctly by the Liver-I had the Hemochromatosis test and it was NEGATIVE-but I often have gold bronzy skin and ,my heart tends to hurt,and my joints are stiff,yet all regular blood work given by the doctor comes back normal.

Do any other Celicas out there tend to have this?

Also My iron level was a little low on the bloodwork test despite the fact that I seem to be overdosing on Iron,so apparently my iron isn't being processed properly through the liver,and goes elsewhere,but where I don't know...

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TotalKnowledge Apprentice
TotalKnowledge
Posted

My sister has been diagnosed with Hemochromatosis. She has been very ill for some time. They have also scheduled her for a test for celiac. Her blood tests came back normal.

She has already started to remove gluten from her diet to see if she feels better. It has made so many of my problems better that she is going to give it a try. She of course going to have to start eating gluten again before her test at Duke.

Having started researching the heck out of Celiac's disease, gluten intolerance and hemochromotosis I have come across many studies researching a possible link. I have not found anything conclusive but with all the other problems that can come from gluten intolerance it would not surprise me.

[edit] Her diagnosis was via liver biopsy. She tested negative for the genetic markers, making her Hemochromatosis one of the rarer varieties.

georgie Enthusiast
georgie
Posted

My Iron and Ferritin were normal high when dx with Coeliac, and have been climbing steadily in the last 3 years on the gluten-free diet. They are now borderline high... Am about to have another test - Dr checking levels every few months now. Have tried to stop eating red meat as often and more chicken and fish .. The Celtic Curse they call it and as Coeliac is associated with a Celtic ancestry as well I think they may be connected. I had some good links that explained a theory that HH may even be a survival adaptation for Coeliac. My HH genetic tests are normal but there are lots of genes not able to be tested yet. Open Original Shared Link

Canada HH has a good site. Open Original Shared Link

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    • knitty kitty
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    • Trish G
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      Thanks, that's a great addition that I hadn't thought of. 
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      Is this celiac?

      By trents · Posted

      Other diseases, medical conditions, medications and even (for some people) some non-gluten foods can cause villous atrophy. There is also something called refractory celiac disease but it is pretty uncommon.
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      ttg iga high (646 mg/dl) other results are normal

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      knitty kitty asks a very relevant question. So many people make the mistake of experimenting with the gluten free diet or even a reduced gluten diet soon before getting formally tested.
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