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Hereditary Hemochromatosis

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Hi ~ Haven't been on site for quite awhile now but back and searching for answers!  

I am almost 8 years celiac, totally gluten free, paleo diet for past 4 years,  and yippee, now I find that I have  Hereditary Hemochromatosis with genes provided by both parents. (thanks mom & dad!).  My ferritin levels are at 1200, should be 50, and am currently doing the weekly blood letting.  Sigh.  Just feel like I am getting weaker and weaker.  Muscle and joint pains, my vanity is shot as hair and eye lashes are falling out.  Feeling quite like an ugly sloth.  How was that for a Pity Party??! 

Basically just looking for anyone else out there going through this and any words of advice.  Help????  

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Celiac.com Sponsor (A8):

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Wow!  I am sorry that you are sick!  My friend’s Dad had this disorder.  He became much better after treatment.  Like celiac disease, it takes....T I M E!  Ugh!   So, there is hope!  ?


Non-functioning Gall bladder Removal Surgery 2005

Diagnosed via Blood Test (DGP IgA only) and Endoscopy: March 2013

Hashimoto's Thyroiditis

Osteopenia/osteoporosis -- June 2013

Allergies and Food Intolerances

Repeat endoscopy/Biopsies: Healed

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On ‎10‎/‎25‎/‎2017 at 12:12 PM, cyclinglady said:

Sigh!  Patience is not one of my virtues. lol  Now my hemoglobin is so low they cant take any more blood.  Feeling like I am caught in the middle. 

 

 

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Hang in there!  

Hugs!!!!


Non-functioning Gall bladder Removal Surgery 2005

Diagnosed via Blood Test (DGP IgA only) and Endoscopy: March 2013

Hashimoto's Thyroiditis

Osteopenia/osteoporosis -- June 2013

Allergies and Food Intolerances

Repeat endoscopy/Biopsies: Healed

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