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

Positive Blood Test Results

ClaireE

Recommended Posts

ClaireE Newbie
ClaireE
Posted

Hello all. I have been told today from my doctor that a I have a positive blood test for Coeliac. I have been anemic for 4 months and a repeat blood test last week showed that after taking iron tablets since diagnosis my levels are still very low, my nanna had Coeliac Disease and my mum suggested that I should have a test to rule it out as it can be hereiditary.

I am just confused now as I have been referred to the hospital to see the consultant and have an endoscopy and gut biopsy but the doctor said that even tho I have tested positive it doesn't mean further tests will confirm I have celiac disease, when I asked her to explain how this can be the case, she didn't really answer so wonder if anyone could offer any further advice especially as the waiting list to see the consultant is 3-4 months.

Thanks in advice

Claire

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

Celiac.com Sponsor (A8-M):


gf4life Enthusiast
gf4life
Posted

No matter what your doctor says you will need the gluten free diet, since you are having a reaction to gluten, that is why the tests were positive. But do NOT start the gluten free diet until after the endoscopy/gut biopsy. Yes, I realise that this means 3-4 months of suffering, but if you eat gluten free for even a few days before the test it can alter the results and be a false negative on the biopsy. I'm sorry that you have to wait so long, but please stick to eating gluten for now.

Ursa Major Collaborator
Ursa Major
Posted

For myself, I had no intentions of eating gluten another HOUR after figuring out it was what was making me so sick. Good dietary response along with a positive blood test also confirms celiac disease. Biopsies are only accurate if they are taken from a damaged area. If the damaged parts of your bowel are missed, you'll end up with a false negative. Biopsies can only confirm celiac disease, but negative biopsies still don't rule it out.

The problem comes when doctors will tell a patient that they can definitely not have celiac disease when their biopsies are negative, and tell them they can eat whatever they want.

It is entirely your choice if you really want to keep suffering for another three or four months to have a test which may or may not confirm what you already know, or skip the biopsy and just try the gluten-free diet to see if it helps.

Anemia is one of the most common symptoms of celiac disease. Your positive blood test, along with the anemia and family members being officially diagnosed with celiac disease should really be enough evidence that you have celiac disease. Your doctor obviously isn't very knowledgeable about celiac disease, as she thinks the blood test means nothing without a positive biopsy.

Anyway, you need to make up your own mind on what to do. Personally, I wouldn't want to suffer for the whole summer, knowing how to get well.

ClaireE Newbie
ClaireE
Posted
  • Author

Thank you for your replies. I have only been researching Celiac since yesterday and luckily came across this forum which already has given me a lot of advice and information. I am sure in time it will prove to be invaluable.

Hopefully the biopsy will not prove negative as will be even more confusing and I can progress to see a dietician and try a gluten free lifestyle.

Claire

JessieFree Apprentice
JessieFree
Posted

Hello I know how you feel I am almost in that same position. I went to my family physician with stomach problems she had me do a sonogram when she couldn't find anything she sent me to a gastro specialist who had me do a upper endoscopy. The biopsy was positive for celiac and I have all the systems but he sent me to get a bloodtest to confirm it anyway. Then he said that even if the blood test is negative I may still have it and either way I have to get a dietrition and go on the gluten free diet for 3 months. If I get better I have it if not I have to have more tests. Isn't the biopsy and symptoms enough? I just want a yes or no answer. I don't see paying a dietitian and going through 3 months gluten free when that may not even be the cause. But since you have a family history of it and blood test is positive I'd think it's pretty safe to say you have it.

Hello all. I have been told today from my doctor that a I have a positive blood test for Coeliac. I have been anemic for 4 months and a repeat blood test last week showed that after taking iron tablets since diagnosis my levels are still very low, my nanna had Coeliac Disease and my mum suggested that I should have a test to rule it out as it can be hereiditary.

I am just confused now as I have been referred to the hospital to see the consultant and have an endoscopy and gut biopsy but the doctor said that even tho I have tested positive it doesn't mean further tests will confirm I have celiac disease, when I asked her to explain how this can be the case, she didn't really answer so wonder if anyone could offer any further advice especially as the waiting list to see the consultant is 3-4 months.

Thanks in advice

Claire

ClaireE Newbie
ClaireE
Posted
  • Author

I just want to know either way now and can't believe the NHS's waiting list times, unfortunately cannot afford to pay to go private. I would love to give a gluten free diet a trial but the doctor advised me to keep the same diet going as this will effect the test results but I am entrigued to know if it would make a difference as I feel so tired all the time at the moment.

Archived

This topic is now archived and is closed to further replies.

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. cristiana
      - cristiana replied to Dizzyma's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Newly diagnosed mam to coeliac 11 year old

      Hi @Dizzyma I note what @trents has commented about you possibly posting from the UK. Just to let you know that am a coeliac based in the UK, so if that is the case, do let me know if can help you with any questions on the NHS provision for coeliacs. If you are indeed based in the UK, and coeliac disease is confirmed, I would thoroughly recommend...
    2. trents
      - trents replied to Dizzyma's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Newly diagnosed mam to coeliac 11 year old

      Welcome to the celic.com community @Dizzyma! I'm assuming you are in the U.K. since you speak of your daughter's celiac disease blood tests as "her bloods". Has her physician officially diagnosed her has having celiac disease on the results of her blood tests alone? Normally, if the ttg-iga blood test results are positive, a follow-up endoscopy...
    3. Dizzyma
      - Dizzyma posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Newly diagnosed mam to coeliac 11 year old

      Hi all, I have so many questions and feel like google is giving me very different information. Hoping I may get some more definite answers here. ok, my daughter has been diagnosed as a coeliac as her bloods show anti TTG antibodies are over 128. We have started her on a full gluten free diet. my concerns are that she wasn’t actually physically s...
    4. Scott Adams
      0

      Better-Than-Takeout Gluten-Free Chicken Fried Rice

    5. Kimmy88
      - Kimmy88 commented on Scott Adams's article in Winter 2026 Issue
      2

      Gut Healing After a Celiac Diagnosis: What Science Says About Recovery Time (+Video)

      Excellent article!! I shared with my family, so they would understand!
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,923
    • Most Online (within 30 mins)
      7,748
    cmckurtz
    Newest Member
    cmckurtz
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • cristiana
      Newly diagnosed mam to coeliac 11 year old

      By cristiana · Posted

      Hi @Dizzyma I note what @trents has commented about you possibly posting from the UK.  Just to let you know that am a coeliac based in the UK, so if that is the case, do let me know if can help you with any questions on the NHS provision for coeliacs.    If you are indeed based in the UK, and coeliac disease is confirmed, I would thoroughly recommend you join Coeliac UK, as they provide a printed food and drink guide and also a phone app which you can take shopping with you so you can find out if a product is gluten free or not. But one thing I would like to say to you, no matter where you live, is you mention that your daughter is anxious.  I was always a bit of a nervous, anxious child but before my diagnosis in mid-life my anxiety levels were through the roof.   My anxiety got steadily better when I followed the gluten-free diet and vitamin and mineral deficiencies were addressed.  Anxiety is very common at diagnosis, you may well find that her anxiety will improve once your daughter follows a strict gluten-free diet. Cristiana 
    • trents
      Newly diagnosed mam to coeliac 11 year old

      By trents · Posted

      Welcome to the celic.com community @Dizzyma! I'm assuming you are in the U.K. since you speak of your daughter's celiac disease blood tests as "her bloods".  Has her physician officially diagnosed her has having celiac disease on the results of her blood tests alone? Normally, if the ttg-iga blood test results are positive, a follow-up endoscopy with biopsy of the small bowel lining to check for damage would be ordered to confirm the results of "the bloods". However if the ttg-iga test score is 10x normal or greater, some physicians, particularly in the U.K., will dispense with the endoscopy/biopsy. If there is to be an endoscopy/biopsy, your daughter should not yet begin the gluten free diet as doing so would allow healing of the small bowel lining to commence which may result in a biopsy finding having results that conflict with the blood work. Do you know if an endoscopy/biopsy is planned? Celiac disease can have onset at any stage of life, from infancy to old age. It has a genetic base but the genes remain dormant until and unless triggered by some stress event. The stress event can be many things but it is often a viral infection. About 40% of the general population have the genetic potential to develop celiac disease but only about 1% actually develop celiac disease. So, for most, the genes remain dormant.  Celiac disease is by nature an autoimmune disorder. That is to say, gluten ingestion triggers an immune response that causes the body to attack its own tissues. In this case, the attack happens in he lining of the small bowel, at least classically, though we now know there are other body systems that can sometimes be affected. So, for a person with celiac disease, when they ingest gluten, the body sends attacking cells to battle the gluten which causes inflammation as the gluten is being absorbed into the cells that make up the lining of the small bowel. This causes damage to the cells and over time, wears them down. This lining is composed of billions of tiny finger-like projections and which creates a tremendous surface area for absorbing nutrients from the food we eat. This area of the intestinal track is where all of our nutrition is absorbed. As these finger-like projections get worn down by the constant inflammation from continued gluten consumption before diagnosis (or after diagnosis in the case of those who are noncompliant) the efficiency of nutrient absorption from what we eat can be drastically reduced. This is why iron deficiency anemia and other nutrient deficiency related medical problems are so common in the celiac population. So, to answer your question about the wisdom of allowing your daughter to consume gluten on a limited basis to retain some tolerance to it, that would not be a sound approach because it would prevent healing of the lining of her small bowel. It would keep the fires of inflammation smoldering. The only wise course is strict adherence to a gluten free diet, once all tests to confirm celiac disease are complete.
    • Dizzyma
      Newly diagnosed mam to coeliac 11 year old

      By Dizzyma · Posted

      Hi all, I have so many questions and feel like google is giving me very different information. Hoping I may get some more definite answers here. ok, my daughter has been diagnosed as a coeliac as her bloods show anti TTG antibodies are over 128. We have started her  on a full gluten free diet. my concerns are that she wasn’t actually physically sick on her regular diet, she had tummy issues and skin sores. My fear is that she will build up a complete intolerance to gluten and become physically sick if she has gluten. Is there anything to be said for keeping a small bit of gluten in the diet to stop her from developing a total intolerance?  also, she would be an anxious type of person, is it possible that stress is the reason she has become coeliac? I read that diagnosis later in childhood could be following a sickness or stress. How can she have been fine for the first 10 years and then become coeliac? sorry, I’m just very confused and really want to do right by her. I know a coeliac and she has a terrible time after she gets gluttened so just want to make sure going down a total gluten free road is the right choice. thank you for any help or advise xx 
    • xxnonamexx
      Fermented foods, Kefir, Kombucha?

      By xxnonamexx · Posted

      very interesting thanks for the info  
    • Florence Lillian
      gluten free cookie recipes

      By Florence Lillian · Posted

      More cookie recipes ...thanks so much for the heads-up Scott.  One can never have too many.  Cheers, Florence.
×
×
  • 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.