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

My Scope Came Back Negitive

Sarah B

Recommended Posts

Sarah B Apprentice
Sarah B
Posted

This summer I had the bloood test done for celiacs and it came back positive. Even this month when my GI doctor looked at he he said that I probably had celiacs. By the time I had recieved my results from the blood test I was already away at school and didn't have time to drive an hour to a GI doctor. So I started my gluten-free diet and have been on one since. In order to make my family doctor happy I scheduled an appointment with a GI Doctor, had the scope done. Yesterday the doctors nurse called and told me that the results were negitive and I don't have celiacs. The doctor doesn't know why my blood results were postive.

I'm a hunderd percent better on this new diet. I can think better, excerise better. I feel better all around. Dos this scope mean that I don't have celiacs?

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

Celiac.com Sponsor (A8-M):


lynnelise Apprentice
lynnelise
Posted

To be accurate the scope needs to be done while you are still ingesting gluten. How long were you on the gluten free diet?

ravenwoodglass Mentor
ravenwoodglass
Posted

No the negative scope does not mean you are not celiac. Your blood tests were postive because you are forming antibodies to gluten and the diet has healed your small intestine. You need to be actively consuming gluten for the scope to have any chance of a positive and even on a full gluten diet the false negative rate is still rather high. With your positive blood work and the resolution of symptoms gluten-free you have your diagnosis. You might want to have the blood tests rerun. With your improvement and a decrease in blood antibody levels if you need a doctor derived diagnosis for any reason that may get you one.

Sarah B Apprentice
Sarah B
Posted
  • Author

I've been on a gluten free diet since september. so about 3 to 4 months.

Could my intestine have healed the quickly?

My dad and I went and talked to my GI doctor today and he was insinstant that I didn't have it. He basicly told me that because my scope came back negative I didn't have it and there was no way I could have had it.

That it was all in my head.

according to my blood results

my Gliadin IGA was 66.5

and my Gliadin IGG was 59.2

Aren't they suppose to be below 20?

ravenwoodglass Mentor
ravenwoodglass
Posted

I've been on a gluten free diet since september. so about 3 to 4 months.

Could my intestine have healed the quickly?

My dad and I went and talked to my GI doctor today and he was insinstant that I didn't have it. He basicly told me that because my scope came back negative I didn't have it and there was no way I could have had it.

That it was all in my head.

according to my blood results

my Gliadin IGA was 66.5

and my Gliadin IGG was 59.2

Aren't they suppose to be below 20?

Did you tell the doctor that you had been gluten free for that long? Yes your intestines could have healed in that time. Please stick with the diet. Your panel numbers are quite high for a reason. I am sorry you had such a lousy doctor. By the way your family should also get panels done as celiac is strongly genetic.

Skylark Collaborator
Skylark
Posted

This summer I had the bloood test done for celiacs and it came back positive. Even this month when my GI doctor looked at he he said that I probably had celiacs. By the time I had recieved my results from the blood test I was already away at school and didn't have time to drive an hour to a GI doctor. So I started my gluten-free diet and have been on one since. In order to make my family doctor happy I scheduled an appointment with a GI Doctor, had the scope done. Yesterday the doctors nurse called and told me that the results were negitive and I don't have celiacs. The doctor doesn't know why my blood results were postive.

I'm a hunderd percent better on this new diet. I can think better, excerise better. I feel better all around. Dos this scope mean that I don't have celiacs?

Going gluten free for a few months could have given you a clean scope if you only had lymphocytic infiltration, which is the mildest form of damage. There is also growing evidence that people with celiac antibodies and a negative scope are still celiac. It's just that the autoimmunity isn't severe enough to give a positive biopsy. Doctors don't seem to be familiar with the research. If you feel better on the diet, the safest thing is to assume you're celiac and stick to the diet.

Doctors that tell people stuff is in their head make me so mad. They did the same to my mom, who is negative both blood and biopsy, yet she got rid of decades of IBS by going gluten-free.

(And psssst... It's "celiac". No letter s at the end. ;))

Sarah B Apprentice
Sarah B
Posted
  • Author

Going gluten free for a few months could have given you a clean scope if you only had lymphocytic infiltration, which is the mildest form of damage. There is also growing evidence that people with celiac antibodies and a negative scope are still celiac. It's just that the autoimmunity isn't severe enough to give a positive biopsy. Doctors don't seem to be familiar with the research. If you feel better on the diet, the safest thing is to assume you're celiac and stick to the diet.

Doctors that tell people stuff is in their head make me so mad. They did the same to my mom, who is negative both blood and biopsy, yet she got rid of decades of IBS by going gluten-free.

(And psssst... It's "celiac". No letter s at the end. ;))

Can you cite where you found this information? I couldn't anything on it online.

Thanks

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

Celiac.com Sponsor (A8-M):


Skylark Collaborator
Skylark
Posted

Can you cite where you found this information? I couldn't anything on it online.

Thanks

For starters, there is a brand new article that was all over the news a couple weeks ago. It's in last month's J. Proteomic Research. It shows similar metabolomics between biopsy-diagnosed celiacs and people with the antibodies but negative biopsy.

Open Original Shared Link

The whole idea of latent celiac has been strongly supported by Markku Mäki, a leading Finnish celiac researcher. I saw most of his data and the idea of a broad spectrum of genetic gluten intolerance in a talk but you should be able to find his abstracts in Pubmed because he publishes a lot. He had a prospective study where he showed EMA+, negative biopsy folks converting to Marsh 2 and Marsh 3 celiac over a few years, among other data. Pubmed is at Open Original Shared Link and you just search his name to see lots of interesting research.

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,027
    • Most Online (within 30 mins)
      7,748
    EmmaGraceeee
    Newest Member
    EmmaGraceeee
    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

    • Scott Adams
      Celiac getting dentures

      By Scott Adams · Posted

      Your experience is both shocking and critically important for the community to hear, underscoring the terrifying reality that cross-contamination can extend into the most unexpected and invasive medical devices. It is absolutely devastating that you had to endure six months of sickness and ultimately sustain permanent vision loss because a doctor dismissed your legitimate, life-altering condition. Your relentless research and advocacy, from discovering the gluten in MMA acrylic to finding a compassionate prosthodontist, is a testament to your strength in a system that often fails celiac patients. While the scientific and medical consensus is that gluten cannot be absorbed through the skin or eyes (as the molecules are too large to pass through these barriers), your story highlights a terrifying gray area: what about a substance *permanently implanted inside the body*, where it could potentially shed microparticles or cause a localized immune reaction? Your powerful warning about acrylic lenses and the drastic difference with the silicone alternative is invaluable information. Thank you for sharing your harrowing journey and the specific, severe neurological symptoms you endure; it is a stark reminder that celiac is a systemic disease, and your advocacy is undoubtedly saving others from similar trauma.
    • Scott Adams
      Dedicated gluten-free Restaurants in East Bay (near San Francisco):

      By Scott Adams · Posted

      Those are driving distance from me--I will try to check them out, thanks for sharing!
    • Scott Adams
      Fighting for a name

      By Scott Adams · Posted

      I am so sorry you're going through this bad experience--it's difficult when your own lived reality of cause and effect is dismissed by the very professionals meant to help you. You are absolutely right—your violent physical reactions are not "what you think," but undeniable data points, and it's a form of medical gaslighting to be told otherwise, especially when you have a positive HLA-DQ2 gene and a clear clinical picture. Since your current "celiac specialist" is not addressing the core issue or your related conditions like SIBO and chronic fatigue, it may be time for a strategic pivot. Instead of trying to "reprove" your celiac disease to unwilling ears, consider seeking out a new gastroenterologist or functional medicine doctor, and frame the conversation around managing the complications of a confirmed gluten-free diet for celiac disease. Go in and say, "I have celiac disease, am strictly gluten-free, but I am still suffering from these specific complications: SIBO, chronic fatigue, dermatological issues, and high blood pressure linked to pain. I need a partner to help me address these related conditions." This shifts the focus from a debate about your diagnosis to a collaborative plan for your current suffering, which is the help you truly need and deserve to work toward bouncing back.
    • NanCel
      Celiac getting dentures

      By NanCel · Posted

      Hello, no I had to have them re done and then used a liner over the top.  Many dentists are not aware of the celiac effects.  Best of luck.   There is other material, yet, very expensive.
    • sleuth
      Nicotine Gum For Gluten Symptoms.. Am I Crazy?

      By sleuth · Posted

      He is not just a psychiatrist.  He is also a neuroscientist.  And yes, I have already read those studies.   I agree with benfotiamine.  This is short term while glutened/inflammation occurs.  As I had already mentioned, these symptoms no longer exist when this phase passes.  And yes, I know that celiac is a disease of malnutrition.  We are working with a naturopath.
×
×
  • 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.