Looking for advice..hemochromatosis

Posted by Nothing Helps @oliverlaurena, Apr 27, 2014

Looking for advice...I am 37 years old. For the last two years I have been experiencing food intolerances and mouth sores. The doctors have run all the lab work possible, allergy tests, and have done a colonoscopy. Nothing has been found. The only thing that seems to help is not eating gluten. But, even with that I still have really bad diarrhea around my period. This month the diarrhea is so bad I have had bleeding hemorrhoids for a week now. Taking my breath away pain.....Please HELP...

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dick price | @olboy1140 | Apr 27, 2014

have you had other organs checked like your liver and pancreas?

Nothing Helps | @oliverlaurena | Apr 27, 2014

In reply to @olboy1140 "have you had other organs checked like your liver and pancreas?" + (show)

I was able to find a liver test in my record....all levels were within normal range.
Total Protein 6.3 - 8.0 g/dL 6.6
Albumin 3.5 - 5.0 g/dL 4.0
Bilirubin, total 0.1 - 1.5 mg/dL 0.3
Bilirubin, conjugated

kinde | @kinde | Apr 27, 2014

I have food intolerance issues and also digestion issues and just got diagnosed for hemachromatosis which is iron overload that is hereditary. Going back to see what they can do for me but in the meantime I am putting probiotic powder from the pills in my mouth and that helps so much! The iron overload is creating lots of yeast in my system and it is awful!

Margaret Shepard | @Margaret_Marie | Apr 30, 2014

In reply to @kinde "I have food intolerance issues and also digestion issues and just got diagnosed for hemachromatosis which..." + (show)

Hi @kinde. I'm so sorry to hear about your digestion issues. Here is a link to some lifestyle and home remedies for hemochromatosis: http://www.mayoclinic.org/diseases-conditions/hemochromatosis/basics/lifestyle-home-remedies/con-20023606. Hope this helps.

jackedison | @jackedison | May 13, 2014

what are other symptoms you are facing along with diarrhea?

ianw | @ianw | Sep 7, 2018

Hi,
I have just been through a full health check and the only negative that came back was that I have high iron levels in my blood - 900+ which is affecting my liver and other organs. Test results showed that it is not hereditary disease so doctor thinks it is just diet. I need to go see a specialist dietician but can't get in for a few weeks, My only query with this that I have been trying to lose weight for the last 6 months so have been eating quite a well balanced and healthy diet, and would eat red meat / high iron foods less than 3 times per week. Has anyone else in the group had similar?
Thanks
Ian

lioness | @lioness | Sep 7, 2018

In reply to @ianw "Hi, I have just been through a full health check and the only negative that came..." + (show)

Ianw hi I found your story interesting as my brother had alot of iron in his system The Dr.told him to give blood when blood bank came around its called hyperchrometosis did your Dr ever mention it?

ianw | @ianw | Sep 8, 2018

In reply to @lioness "Ianw hi I found your story interesting as my brother had alot of iron in his..." + (show)

Hi - thanks no he never mentioned it but I will raise with him and see what he says

joejan | @joejan | Oct 17, 2018

Hoping to connect with others with this diagnosis. My husband was diagnosed with mild dementia in March and prescribed 2 meds. Primary symptom was memory issues. He has recently also been diagnosed with Hemachromatosis which can also affect memory. Am now wondering whether he does actually have dementia and am hoping for guidance from others with similar experience. Thank you.

Justin McClanahan, Moderator | @JustinMcClanahan | Oct 17, 2018

In reply to @joejan "Thank you for your response, Justin. My husband is currently under the care of a hematologist..." + (show)

@joejan, you are welcome. I only say that because of the information I found here, https://www.mayoclinic.org/diseases-conditions/hemochromatosis/symptoms-causes/syc-20351443. If you click on the tab that says "Doctors and departments" it lists gastroenterology and hepatology as the main two. Do you think you would have the ability to see a gastroenterologist or has this been mentioned?