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@oliverlaurena

Posts: 2
Joined: Apr 22, 2014

Looking for advice..hemochromatosis

Posted by @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…

Liked by Ljf911

REPLY

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

@olboy1140

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

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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

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!

@kinde

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!

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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.

what are other symptoms you are facing along with diarrhea?

@joejan

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.

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Hello @joejan, welcome to Connect. I can understand why you would have questions about whether or not the hemochromatosis or dementia is what is causing memory issues or if your husband has dementia at all. If you don't mind sharing, have your providers collaborated on each diagnosis to determine which may be causing the memory issues. Did the provider who diagnosed hemochromatosis mention that it might be the primary cause of the memory issues? You may notice, I moved your discussion to the Digestive Health group as hemochromatosis is typically treated by the Gastroenterology and Hepatology division. I would also like to invite back a few members who previously discussed hemochromatosis, @savov, @ruettj.

@joejan

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.

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Thank you for your response, Justin. My husband is currently under the care of a hematologist and a neurologist – wondering whether he should instead be seeing a gastroenterologist? I welcome input from others who may have some guidance to offer. Thank you all.

@joejan

Thank you for your response, Justin. My husband is currently under the care of a hematologist and a neurologist – wondering whether he should instead be seeing a gastroenterologist? I welcome input from others who may have some guidance to offer. Thank you all.

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@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?

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.

Hello @joejan,

You may notice that I merged your initial discussion to this one as I thought it would be beneficial for you to meet other members who have experience with hemochromatosis.
If you click on VIEW & REPLY in your email notification, you will see the whole discussion and can join in, meet, and participate with other members talking about their or their loved ones' experiences.

How is your husband doing, @joejan? Has he consulted with a gastroenterologist?

Husband recently diagnosed with Hemochromatosis and was prescribed Jadenu in lieu of giving blood twice a week. Would welcome any experiences of others with this condition. Side effects of this med (generic for Exelon); Have you seen weight loss? Are you limiting red meat? Any other guidance/info would be very much appreciated. Thank you!

@joejan

Husband recently diagnosed with Hemochromatosis and was prescribed Jadenu in lieu of giving blood twice a week. Would welcome any experiences of others with this condition. Side effects of this med (generic for Exelon); Have you seen weight loss? Are you limiting red meat? Any other guidance/info would be very much appreciated. Thank you!

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@joejan, I moved your discussion back with your other posts to the hemochromatosis discussion to keep them in one place. Although it is a for a different diagnosis, I'd like to invite @tavi who has discussed using this medication.

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