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Secondary Hemochromatosis?


Candy

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Candy Contributor

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

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

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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      Welcome to the celiac.com community, @melthebell! I certainly would have a biopsy repeated as it has been 5 years since the first one. You mentioned he was scheduled for an endoscopy but make sure a biopsy is also done. It's possible he, like you are, is a "silent" celiac where the damage to the intestinal mucosa happens very slowly and can take years to manifest to the point of being detectable and where symptoms are minimal or absent. At 10 years old, his immune system may not be mature enough het to trigger the usual IGA responses that the IGA celiac tests are designed to detect.  I would also have genetic testing done to confirm that he has or doesn't have the potential to develop celiac disease. The genetic profile can also offer insight into the type of celiac disease a person will develop if they ever convert from latent to active. Take a look at table 2 under the section "Types of Celiac Disease" in the article found in this link: https://pmc.ncbi.nlm.nih.gov/articles/PMC9980758/  Genetic testing is available from 3rd party labs. I think you just have to send in a cheek swab sample.
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