Celiac disease and Homozygous Hemochromatosis

[Diane Endicott]

I was diagnosed with celiac disease 12 years ago (I was 45 years old). Prior to my diagnosis, I was seeing a Hemotologist for anemia and had extremely low ferritin levels. When I turned 50, I was diagnosis with Hemochromatosis and had very high ferritin and liver enzyme levels. After several phlebotomies, my levels improved and eventually normalized. I follow a strict gluten-free diet and do not have any GI issues. My ferritin should go up, but has remained normal. I have a lot of osteoarthritis and wonder if there is a connection between my celiac disease and hemochromatosis. I stopped going to my hemotologist as he only shrugged his shoulders looked no further. Has anyone else had or know of someone with these issues?

[cristiana]

Hi Diana

Welcome to the forum.

This post interests me because my doctor tells me I have a tendency towards another blood condition - polycythemia.  In my case my ferritin is low (somewhere between 9 and 20) but my haemoglobin is always high normal.  In fact, according to my local lab it has now passed high normal for women, when it recently reached 16, but I think that was induced in part by dehydration.   It has gone down since, but if I continue to have higher levels I will probably be referred to a haematologist.  For the moment my consultant is just keeping an eye on me.    I have been told for the time being to not take iron tablets.

There are a couple of people on this forum who have similar issues so do read this thread (it isn't all about polycythemia).  

I hope others will chime in to help you.

Cristiana

 

Edited September 22, 2021 by cristiana

[trents]

Diane, are you still getting phlebotomies to siphon off excess iron? You say the iron levels eventually normalized after several phlebotomies but it's not clear from your post if it remained that way after going gluten free.

[Scott Adams]

Welcome to the forum! Hemochromatosis is a chronic condition that doesn't go away, so hopefully you're following up and treating it, usually by eating a diet low in iron and doing regular phlebotomies. 

[DianeF]

Hola Amigos,

Glad to find this post! I also have a high ferretin level- 204 for a norm that should be btwn. 6 and 160 and have been extremely gluten intolerant for years! I have done 4 chelation therapies and 4 phlebotomies to try and reduce these levels as well as an increasingly more restrictive diet devoid of the red meat laden previous dietary habit... symptoms improve with lots of exercise, enzymes and robotics etc. Will have my levels tested in a couple days and hoping do see success. The vision has been blurry and trying to find the remedy for that!

[trents]

Welcome to the forum, DianeF!

Robotics?

Also, you state you have been "extremely gluten intolerant for years!" Do you have celiac disease or NCGS (Non Celiac Gluten Sensitivity)? Do you have an official diagnosis for either? Are you on a strict gluten free diet?

[DianeF]

I meant to say probiotics!!!! Considering all my symptoms, I would say I have celiac but no official diagnosis... my diet is gluten free, very low in eggs, flours (rice, quinoa etc.) and am avoiding nighshades (except for at a restaurant today where I had a bit of tomatoe). I am also doing ozone therapy...

 

[Scott Adams]

4 hours ago, DianeF said:

Hola Amigos,

Glad to find this post! I also have a high ferretin level- 204 for a norm that should be btwn. 6 and 160 and have been extremely gluten intolerant for years! I have done 4 chelation therapies and 4 phlebotomies to try and reduce these levels as well as an increasingly more restrictive diet devoid of the red meat laden previous dietary habit... symptoms improve with lots of exercise, enzymes and robotics etc. Will have my levels tested in a couple days and hoping do see success. The vision has been blurry and trying to find the remedy for that!

Is your hematocrit/red blood cell count high as well? 

[DianeF]

Hi Scott,

If you are referring to hemoglobin level, it is at 16.2, just under the ratio (13.3-16.3), I live in Ecuador and am not very literate when it comes to these tests... my iron level is within range too. I was taking an iron supplement for a while and eating lots of red meat, liver- then I had a landslide on my new property which was a nasty emotional jolt so  think maybe the immune system got out of whack? I am currently doing ozone therapy also. Thanks for your interest! Will keep you posted*

Diane

[Scott Adams]

@DianeF hematocrit and red blood cell count are different than your hemoglobin levels, but you may want to ask your doctor if those levels were also checked. I am no expert on such issues, but I do have high hematocrit/red blood cell count and must do regular phlebotomies to treat it. 

High iron levels would not be a normal symptom of celiac disease, and the original poster having low levels is a more typical issue with undiagnosed celiac disease.

[Wheatwacked]

On 9/22/2021 at 5:39 AM, Diane Endicott said:

hemochromatosis

low vitamin D which is common in Celiac might be worth looking at.

Vitamin D Supplementation Modestly Reduces Serum Iron Indices of Healthy Arab Adolescents

[DianeF]

On 12/1/2022 at 1:37 PM, Scott Adams said:

@DianeF hematocrit and red blood cell count are different than your hemoglobin levels, but you may want to ask your doctor if those levels were also checked. I am no expert on such issues, but I do have high hematocrit/red blood cell count and must do regular phlebotomies to treat it. 

High iron levels would not be a normal symptom of celiac disease, and the original poster having low levels is a more typical issue with undiagnosed celiac disease.

Yes, found hemotocrito on the blood results... it is at a 46.5. My iron levels are within range at 93.8, thus far the other issues out of range are hi folic acid at 39.5 and basal insulin at 3.53. Getting lots more exercise and that seems to be helping.