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High ferritin in coeliac blood test

Louise1991
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Louise1991 Newbie
Louise1991
Posted

Hi everyone! 

So I’m a 30 year old female from the UK currently being investigated as possibly having coeliac disease or some kind of intolerance to gluten! 

About 4 weeks ago I had a blood test to check for the antibodies associated with coeliac disease, however the test came back negative- unfortunately I was given incorrect advice by my doctor who informed me I needed to eat gluten 2 weeks prior to the blood test. I had stopped eating gluten on the advice of a doctor I’d spoken to previously who suggested it would be good to see how I felt gluten free (much better- in fact most symptoms had gone within a week and a half of no gluten)

However, the results came back with high ferritin levels- Ive literally no idea what this really means, I know it’s to do with iron and quite frankly, after using doctor google, I’m not sure I want to know too much about this!! I know this would be considered unusual though in the case of a coeliac disease. The doctor I saw to get these results was not the best at explaining what could cause this however after asking me loads of questions she did say that she couldn’t believe the results had come back negatively. I have had a full examination twice and both times everything felt normal to the doctors. I have been told that it could be all to do with some inflammation due to eating gluten.

I have a repeat blood test booked for next week (after eating gluten now for around 8 weeks) and I’m really hoping for a positive result to explain all the symptoms I’ve experienced.

This message just looks like a big long moan at the moment but I guess what I’m asking is if anyone has been in a similar situation as this with these high ferritin levels? Im really panicking about what could be wrong with me, and it’s now causing me quite a bit of anxiety (thanks google)!! I guess I’ll know for sure next week but the anxiety is getting worse the closer next week comes! 

Thanks in advance for reading my long moan! Any advice or stories would be greatly appreciated!!  

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trents Grand Master
trents
Posted
21 minutes ago, Louise1991 said:

Hi everyone! 

So I’m a 30 year old female from the UK currently being investigated as possibly having coeliac disease or some kind of intolerance to gluten! 

About 4 weeks ago I had a blood test to check for the antibodies associated with coeliac disease, however the test came back negative- unfortunately I was given incorrect advice by my doctor who informed me I needed to eat gluten 2 weeks prior to the blood test. I had stopped eating gluten on the advice of a doctor I’d spoken to previously who suggested it would be good to see how I felt gluten free (much better- in fact most symptoms had gone within a week and a half of no gluten)

However, the results came back with high ferritin levels- Ive literally no idea what this really means, I know it’s to do with iron and quite frankly, after using doctor google, I’m not sure I want to know too much about this!! I know this would be considered unusual though in the case of a coeliac disease. The doctor I saw to get these results was not the best at explaining what could cause this however after asking me loads of questions she did say that she couldn’t believe the results had come back negatively. I have had a full examination twice and both times everything felt normal to the doctors. I have been told that it could be all to do with some inflammation due to eating gluten.

I have a repeat blood test booked for next week (after eating gluten now for around 8 weeks) and I’m really hoping for a positive result to explain all the symptoms I’ve experienced.

This message just looks like a big long moan at the moment but I guess what I’m asking is if anyone has been in a similar situation as this with these high ferritin levels? Im really panicking about what could be wrong with me, and it’s now causing me quite a bit of anxiety (thanks google)!! I guess I’ll know for sure next week but the anxiety is getting worse the closer next week comes! 

Thanks in advance for reading my long moan! Any advice or stories would be greatly appreciated!!  

Welcome to the forum, Louise.

You might want to google hemochromatosis with regard to the high ferritin levels. 

plumbago Experienced
plumbago
Posted
(edited)

It's probably too complicated for any of us to attempt to break this down for you. My first message is to talk this over with your doctor. It will also be my last message.

In between, I'll say I'm glad you are getting re-tested while on gluten; that is entirely appropriate.

Ferritin is the protein where iron is stored. (But the major storage site of iron is the liver) It is normally present in serum concentrations directly related to iron storage. But not always. There are cases when the correlation does not hold. That is when your doctor comes in, ok?

Increased ferritin can be a sign of iron excess. It can also be noted in people with certain kinds of anemia, and liver abnormalities. Increased ferritin can also be factitiously elevated in other cases.

Ferritin is also known as an acute phase reactant, a result from a defense mechanism, sometimes called acute phase reaction. The body will synthesize ferritin in response to an evasion of many pathogens.  The resulting conditions are sometimes referred to as the anemia of chronic disease, or more commonly today, inflammatory anemia.  These are often temporary conditions that cause the body to sequester iron that would otherwise be available to assist invading pathogens and worsen infection, tissue damage or other disease conditions.

Again, talk to your doctor, and good luck!

Editing to add: Also, there is always lab error. A good doc repeats tests that initially yielded and abnormal lab result.

Edited by plumbago
trents Grand Master
trents
Posted

I have only seen anemia of chronic disease in the frail elderly. 

plumbago Experienced
plumbago
Posted

@trents

There are a lot of others with anemia from chronic disease. I work with a population that can be very sick. It definitely exists outside of an elderly population. (I am not saying this is what is happening with OP at all, and I don't mean to alarm her.)

Louise1991 Newbie
Louise1991
Posted
  • Author

Thanks both for your responses. I appreciate it!! 
 

I agree that it’s something I am going to have to speak to my doctor in relation to. Im generally a panicky person (not sure why) and as mentioned in my initial message it’s the anxiety getting to me! 

I was told it could be a lab error- just not sure how often these occur!!! 

plumbago- You’ve not alarmed me don’t worry, I think maybe it’s just best if I try to stop panicking about everything until next week!

Thanks both again though! 

ZosiaK Newbie
ZosiaK
Posted
On 10/26/2021 at 7:51 PM, Louise1991 said:

Hi everyone! 

So I’m a 30 year old female from the UK currently being investigated as possibly having coeliac disease or some kind of intolerance to gluten! 

About 4 weeks ago I had a blood test to check for the antibodies associated with coeliac disease, however the test came back negative- unfortunately I was given incorrect advice by my doctor who informed me I needed to eat gluten 2 weeks prior to the blood test. I had stopped eating gluten on the advice of a doctor I’d spoken to previously who suggested it would be good to see how I felt gluten free (much better- in fact most symptoms had gone within a week and a half of no gluten)

However, the results came back with high ferritin levels- Ive literally no idea what this really means, I know it’s to do with iron and quite frankly, after using doctor google, I’m not sure I want to know too much about this!! I know this would be considered unusual though in the case of a coeliac disease. The doctor I saw to get these results was not the best at explaining what could cause this however after asking me loads of questions she did say that she couldn’t believe the results had come back negatively. I have had a full examination twice and both times everything felt normal to the doctors. I have been told that it could be all to do with some inflammation due to eating gluten.

I have a repeat blood test booked for next week (after eating gluten now for around 8 weeks) and I’m really hoping for a positive result to explain all the symptoms I’ve experienced.

This message just looks like a big long moan at the moment but I guess what I’m asking is if anyone has been in a similar situation as this with these high ferritin levels? Im really panicking about what could be wrong with me, and it’s now causing me quite a bit of anxiety (thanks google)!! I guess I’ll know for sure next week but the anxiety is getting worse the closer next week comes! 

Thanks in advance for reading my long moan! Any advice or stories would be greatly appreciated!!  

My husband has high ferritin and it is due to Fatty Liver

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  • 2 years later...
Pat Denman Rookie
Pat Denman
Posted

I, too have both conditions. Hemochromatosis diagnosed on 1996. I am now 89 years old. Never formally diagnosed Celiac but stopped eating gluten 2 years ago as I could not get out of bed after eating it for some days and all the doctors seen over my lifetime Never tested for it even though I had hall marks. Short stature, migraines, digestive upsets, chronic fatigue! My oldest son was Celiac but Jehovah God helped me to save him when he was an infant thru special diet and prayer.

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