Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

High ferritin in coeliac blood test

Louise1991
 Share

Recommended Posts

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!!  

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


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

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


  • 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.

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
 Share
Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. Mari
      - Mari replied to Jmartes71's topic in Coping with Celiac Disease
      4

      Related issues

      jmartes, Thank you for sharing more information with us. Most of us Celiacs whose problems do not clear up with in a few years have to decide what to do next. We can keep seeing DR.s and hope that we will get some medication or advice that will improve our health. Or we can go looking for other ways to improve our health. Usually Celiac Disease is...
    2. Scott Adams
      - Scott Adams replied to catsrlife's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      4

      Patiently Waiting to See Results

      It's unfortunate that they won't work with you on this, but in the end sometimes we have to take charge of our own health--which is exactly what happened to me. I did finally get the tests done, but only after years of going down various rabbit holes and suffering. Just quitting gluten may be the best path for you at this point.
    3. catsrlife
      - catsrlife replied to catsrlife's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      4

      Patiently Waiting to See Results

      My doctor didn't take the time to listen to anything. I don't even think she knows what it means. She is more concerned about my blood pressure that is caused by her presence than anything else and just wants to push pills at me. The so-called dermatologist wouldn't do a skin test. she prescribed all of these silly antihistamine skin meds. This lady...
    4. Jmartes71
      - Jmartes71 replied to Jmartes71's topic in Coping with Celiac Disease
      4

      Related issues

      I had the test done by one of the specialist through second pcp I had only a few months because he was saying I wasn't.Even though Im positive HLA-DQ2 .My celiac is down played.I am with new pcp, seeing another girl doctor who wants to do another breathe test next month though Im positive sibo this year.I have high blood pressure not sure if its pain from...
    5. Scott Adams
      0

      Gluten-Free Peanut Butter Cup Swirl Brownies

  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,259
    • Most Online (within 30 mins)
      7,748
    Lindia
    Newest Member
    Lindia
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Mari
      Related issues

      By Mari · Posted

      jmartes, Thank you for sharing  more information with us. Most of us Celiacs whose problems do not clear up with in a few years have to decide what to do next. We can keep seeing DR.s and hope that we will get some  medication or advice that will improve our health. Or we can go looking for other ways to improve our health. Usually Celiac Disease is not a killer disease, it is a disabling disease as  you have found out. You have time to find some ways to help you recover. Stay on your gluten-free diet and be more careful in avoiding cross contamination . KnittyKitty  and others here can give you advice about avoiding some foods that can give you the gluten auto immune reaction and advice about vitamins and supplement that help celiacs. You may need to take higher doses of Vit. B12  and D3.  About 20 years before a Dr. suggested I might have Celiac disease I had health problems that all other Dr said they could not identify or treat. I was very opposed to alternative providers and treatments. So many people were getting help from a local healer I decided to try that out. It was a little helpful but then, because I had a good education in medical laboraties she gave me a book  to read and what did I think. With great skeptism I started reading and before I was half way through it I began using the methods outlined in the book. Using those herbs and supplements I went from hardly able to work to being able to work almost fulltime. I still use that program. But because I had undiagnosed celiac disease by 10 years later some  of my problems returned and I started to loose weight.    So how does a person find a program that will benefit them? Among the programs you can find online there are many that are snake oil scams and some that will be beneficial. by asking around, as I did. Is there an ND in your area? Do they reccomend that person? If you would like to read about the program I use go to www.drclark.net   
    • Scott Adams
      Patiently Waiting to See Results

      By Scott Adams · Posted

      It's unfortunate that they won't work with you on this, but in the end sometimes we have to take charge of our own health--which is exactly what happened to me. I did finally get the tests done, but only after years of going down various rabbit holes and suffering. Just quitting gluten may be the best path for you at this point.
    • catsrlife
      Patiently Waiting to See Results

      By catsrlife · Posted

      My doctor didn't take the time to listen to anything. I don't even think she knows what it means. She is more concerned about my blood pressure that is caused by her presence than anything else and just wants to push pills at me. The so-called dermatologist wouldn't do a skin test. she prescribed all of these silly antihistamine skin meds. This lady didn't even know what she was talking about and said "they never turn out as celiac, they usually just say it's dermatitis so here's your meds," just like my regular quack. I'm trying to change insurance companies at the moment and that has been a battle because of red tape, wrong turns, and workers having wrong phone numbers. What a joke! The allergy blood days say I have a wheat allergy of .31. Hopefully it's just that and until I find a decent doctor and dermatologist, I'll just lay off the wheat anyway, since it gives me asthma, high blood sugar, and joint pain. So frustrated at this point. The rash on my back of arms/elbows is mostly gone. Both calves and chest have started up. smh. It comes and goes. It fades faster now, though, although my forearms still produce one or two bumps on each side. The itching has calmed down a lot except for the bump area. I have dry skin to begin with so anything affecting it just makes it crazy. i'm never going to eat wheat again. I don't care if they need it to produce results or if it is just an intolerance, allergy, or celiac. It gives me hell.
    • Jmartes71
      Related issues

      By Jmartes71 · Posted

      I had the test done by one of the specialist through second pcp I had only a few months because he was saying I wasn't.Even though Im positive HLA-DQ2 .My celiac is down played.I am with new pcp, seeing another girl doctor who wants to do another breathe test next month though Im positive sibo this year.I have high blood pressure not sure if its pain from sciatica or sibo, ibs or hidden gluten. Im in disability limbo and I should have never been a bus driver because im still suffering and trying to heal with zero income except for my husband. This isnt fare that my health is dictating my living and having ti beg for being revalidation of my disregarded celiac disease. Its an emotional roller coaster I don't want to be on and the medical made it worse.New pcp new gi, exhausted, tired and really fed up. GI doctor NOT girl..
    • Mari
      Related issues

      By Mari · Posted

      Hi Jmartes, It sure is difficult to get useful advice from medical providers. Almost 20 years  ago a Dr suggested that I might have Celiacs and I took a Celiac Panel blood test. No gluten challenge diet. On that test the tTG was in normal range but an alpha antibody was very high. I went online and read about celiac disease and saw how I could investigate this low tTG and still have celiac disease. Normal tTG can happen when a person had been reacting for many years. Another way is that the person has not been eating enough gluten to raise the antibody level. Another reason is that the tTG does not show up on a blood but may show up on a fecal test. Almost all Celiacs inherit at least one of the 2 main Celiac genes. I had genetic tests for the Celiac genes at Enterolab.com. I inherited one main Celiac gene from one parent and the report said that the DQ gene I inherited from my other parent, DQ6, could cause a person to have more problems or symptoms with that combination. One of my grandmother's had fairly typical symptoms of Celiacs but the other grandmother had severe food intolerances. I seem to show some problems inherited from both grandmothers. Human physiology is very complex and researchers are just beginning to understand how different body systems interact.  If you have taken an autosomal DNA test you can download your raw data file and upload it to Prometheuw.com for a small fee and search for Celiac Disease. If you don't find any Cekiac genes or information about Celiac disease  you may not have autoimmune gluten intolerance because more than 99% of Celiacs have one or both of these genes.  PLEASE ASK QUESTIONS IF YOU WANT TO KNOW EHAT i HAVE DONE TO HELP WITH SYMPTOMS.  
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.