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Secondary Hemochromatosis?


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#1 Candy

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Posted 17 June 2009 - 02:57 AM

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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I have DNA ancestry in NW.EUROPE,where CELIAC'S known to be common.

DEC. '05 TESTED POSITIVE for the Celiac GENES HLA-DQ2 , and DQ3 SUBTYPE DQ8
Celiac Negative Endoscopy-Aug.'08 - Diagnosed with Hernia and GERD(Gastric Esophageal Reflux Disease),and prescribed Acid Reducing Medication. I hadn't eaten WHEAT for a year prior to the Endoscopy-maybe that's why result was Negative. I need TTG test to determine Active Celiac Status/

Disgnosed with Sjogren's 9/19/2008- Internist referred me to Eye Doctor and Rheumatologist.

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#2 TotalKnowledge

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Posted 17 June 2009 - 10:39 AM

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.
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#3 georgie

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Posted 17 June 2009 - 03:31 PM

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. http://live.psu.edu/...s...=10913&pf=1

Canada HH has a good site. http://www.cdnhemochromatosis.ca/
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Diagnosed May 2006 - Hashimotos Thyroid after being diagnosed in 1977 and told it didn't matter.
Diagnosed June 2006 with adrenal insufficiency.
Diagnosed June 2006 as Gluten Intolerant after I failed the Challenge Diet. Negative blood test.No biopsy.
Diagnosed June 2006 as B12 low. Needed weekly injections for a year.Still have them every 2 weeks.
Trialled Dairy Free Diet and reacted positively to that challenge in January 07.
News Flash! Coeliac Genetic Testing done April 08 . DQ2 Positive !
Diagnosed July 2010 FODMAP. Limits on Fructose, lactose, polyols, fructans. NO ONION! But I can have hard cheese, butter and cream again!!!


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