Celiac disease, hemochromatosis diagnosis and liver issues

[Caligirl57]

I was diagnosed with liver failure and told I needed a liver transplant. I had ascites drained (5litres) and went on a strict gluten free diet. I was diagnosed one day after ascites was drained, With celiac. This all took place while I was living in the UK. We left after 2 years due to my husbands job. 

i continue to bruise easily and my new Internist ordered a blood iron work  up. My iron  levels are off the charts! I was diagnosed with Hemochromoatis ( too much iron in the blood) I will start a regime of “blood letting” next week. It’s similar to donating blood.

 

is there anyone out there going through the same or similar ordeal? Both diseases cause joint pain, tiredness, itchy skin. My itchy skin started in my mouth. Lichen planus. My mouth was extremely painful. I hope this helps even one person going through this lifetime ordeal.

kind regards,

wanda

 

[NNowak]

We have both of those challenges in our family, and a few more. First, have you had the genetic testing for hemochromatosis?  This is very important because another important reason for high Ferritin is an inflammatory response. The body protects itself from free radicals (iron) during a crisis, so it grabs all the loose iron and stored it in the liver (high ferritin).  Disease thrives off iron, so this is rather ingenious. 
 

My sister has hemochromatosis, celiac and is heterozygous for the H63D gene. She donates blood every 56 days. Her diagnosis came when she was pregnant for her 4th child - not years after menopause. I, too, am heterozygous for H63D and had very high Ferritin and Iron. My GI has retested me several times in 3 months and refuses to accept its hemochromatosis. However, in this time, my GI tract seems to be healing after a significant flare, my ferritin has gone down a bit and my iron is borderline low. I was able to see my new internist this week who is on top of her game. She feels we are dealing with another autoimmune disease due to the granulomas found in my liver and more in my lungs - I had a CT in the ER a week ago that showed that. This could explain the elevated ferritin as an inflammatory response. I will see a hematologist if my ferritin doesn’t normalize once we get to the bottom of this. You don’t want to be blood letting if you are in an active flare because it will impede your healing. 
 

Make sure you research hemochromatosis, diagnosis, treatment and see a hematologist to discuss. It’s not something that a general practitioner can manage. 

[Caligirl57]

Hi NNowak,

thank you for your quick response.  My ferritin levels are 204 and my saturation is at 92. Normal iron levels are below 139 saturation is less than 55. These tests were done right before I had another endoscopy . It did not show inflammation in the stomach. 
ive never been a heavy or moderate drinker, so when I was told I had cirrhosis, I was flabbergasted and embarrassed. I have since learned to much iron stored in the liver can cause this. I’ll look up my gene type for Hemochromoatis. Thank you for sharing with me. I am 63 done with menopause by 13 years. 
Regards,

wanda

 

[Caligirl57]

The gene mutation I have is H63D as well. I’m just so tired of being tired! Did the bloodletting help your sister have more energy?

[NNowak]

59 minutes ago, Caligirl57 said:

Hi NNowak,

thank you for your quick response.  My ferritin levels are 204 and my saturation is at 92. Normal iron levels are below 139 saturation is less than 55. These tests were done right before I had another endoscopy . It did not show inflammation in the stomach. 
ive never been a heavy or moderate drinker, so when I was told I had cirrhosis, I was flabbergasted and embarrassed. I have since learned to much iron stored in the liver can cause this. I’ll look up my gene type for Hemochromoatis. Thank you for sharing with me. I am 63 done with menopause by 13 years. 
Regards,

wanda

 

My sisters ferritin was over 1,000 at diagnosis. Mine hovers between 400-600. Blood letting is exhausting and taxes the body. I’d recommend a hematologist to guide you through this. There are other disease processes that cause NAFLD that can progress into cirrhosis. In my experience with doctors, the autoimmune process is a mystery that requires more than 15 minutes with a patient. Often, a diagnosis is reached by ruling out other conditions. Hemochromatosis.org has plenty of information to get you started understanding what hemochromatosis is and the diagnostic values. I’m glad I didn’t jump to the blood letting despite how horrible I felt. 

[NNowak]

44 minutes ago, Caligirl57 said:

The gene mutation I have is H63D as well. I’m just so tired of being tired! Did the bloodletting help your sister have more energy?

No, my sister is exhausted all the time. It’s extremely difficult to give blood in a weakened state then expend energy to make more blood. I also have a B12/Folate deficiency, which was much more of a factor with my malaise, headaches and profound exhaustion. Have you been checked for nutritional deficiencies?

[Caligirl57]

My B12 is 2000. Ugh?

[cyclinglady]

1 hour ago, Caligirl57 said:

My B12 is 2000. Ugh?

Are you supplementing?  Mine was high (2,000+) when I was substituting fortified soy milk for dairy before my celiac disease diagnosis.  Maybe I was not able to use the cheaper cobalamin (B-12) used in the soy milk.    Just a theory.  I really did not use THAT much soy.  I never had liver issues.      Now it is in the normal range.  It took about a year or longer for my b-12 levels to fall within the normal range.  

Edited January 1, 2020 by cyclinglady

[NNowak]

Check your fortified foods and any supplements. My deficiencies are from malabsorption - I consume meat daily and the fortified soy or coconut milk. There are medical issues related to high B12 and exhaustion. If you are satisfied those issues aren’t present, the 2000 B12 isn’t concerning. The exhaustion is menacing though. That needs to be addressed. 

[Caligirl57]

2 hours ago, NNowak said:

My sisters ferritin was over 1,000 at diagnosis. Mine hovers between 400-600. Blood letting is exhausting and taxes the body. I’d recommend a hematologist to guide you through this. There are other disease processes that cause NAFLD that can progress into cirrhosis. In my experience with doctors, the autoimmune process is a mystery that requires more than 15 minutes with a patient. Often, a diagnosis is reached by ruling out other conditions. Hemochromatosis.org has plenty of information to get you started understanding what hemochromatosis is and the diagnostic values. I’m glad I didn’t jump to the blood letting despite how horrible I felt. 

 

[Caligirl57]

NNowak,

thank you for your kind and timely responses. I am seeing a hematologist, liver doctor and internist. I also am having to go a oncologist/gynecologist for a hysterectomy.  Ugh! Sucks to get old! ?

[NNowak]

Ugh!!  I agree!!  Sounds like you have your bases covered.  Hopefully you’ll walk away from this with renewed health, strength and energy. Best wishes!

[Caligirl57]

Awww,

Thank you and Happy New Year from Colorado.

[NNowak]

Happy New Year from Michigan!

[Caligirl57]

2 hours ago, Caligirl57 said:

My B12 is 2000. Ugh?

BTW,

Before I was diagnosed with celiac, a few food changes occurred. First, I have always been lactose intolerant, second I became violently ill after eating shell fish ( I use to eat without any issues) . I noticed sores in my mouth that were so painful, I was sent to an oral surgeon. He diagnosed me with lichen planus. Blisters like a celiac gets on there shins or elbows. Also, for those who are not aware toothpaste had gluten in it. Colgate sensitive is gluten-free. Always check ingredients in everything you put in your mouth.

Hope this helps even one person,