Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • 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 Celiac.com!
    eNewsletter
    Donate

Inconclusive Blood Tests, Highly Suggestive Biopsy

PepperandDaisysMommy

Recommended Posts

PepperandDaisysMommy Newbie
PepperandDaisysMommy
Posted

I am a 32 year old woman with no children. For about a year now, I have been suffering from digestive issues that have almost become normal to me. I regularly head straight to the bathroom after eating. I have battled with stomach cramping, bloating, diarrhea, hemhorroids, and mild acid reflux. I finally started seeing a GI specialist, who scheduled a colonoscopy and endoscopy. This was his first route because of my family history. My father suffers from severe acid reflux, my grandfather passed away from stomach cancer, and my aunt is a colon cancer survivor. After getting the biopsy results from my endoscopy, my dr. ordered 3 blood tests to check for Celiac. One test came back positive, one came back negative. The third was mildly positive. The biopsy was "highly suggestive" of Celiac. The dr. has ordered two more blood tests, but has said that he will probably give a formal diagnosis of Celiac at my next appt in January. Truthfully, I can't wait that long! Is it possible to be a Celiac with inconclusive blood tests and a positive biopsy?? This is all so new to me and any help would be appreciated.

Link to comment
Share on other sites
Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


Ahorsesoul Enthusiast
Ahorsesoul
Posted

You can have celiac disease or be gluten intolerant with all tests even showing negative results.

You can go gluten free at anytime. The sooner you do the sooner you will feel better.

Isn't it nice to know that it's not all in your head?!

Welcome to the gluten free world.

Link to comment
Share on other sites
happygirl Collaborator
happygirl
Posted

A positive biopsy is the gold standard for a Celiac diagnosis, so that is technically the "only" way to have a "true" confirmed case of Celiac. Many doctors are starting to diagnose on bloodwork alone. You don't have to have + bloodwork AND + biopsy to be diagnosed as a Celiac.

Continue to eat gluten until your next appointment so that you can finish any testing they request. However, if you are concerned about waiting until your next appointment, it may be worth it to call them and discuss your concerns - maybe they can get you in sooner, or run the bloodwork before your appointment.

Link to comment
Share on other sites
ravenwoodglass Mentor
ravenwoodglass
Posted

If you have had the biopsy and blood tests you are done with celiac testing. You can start the diet. Your body may give you the answer before you go back to the doctor.

Link to comment
Share on other sites
nora-n Rookie
nora-n
Posted

Yes, even the best blood tests will normally only be positive in about 80% of cases!!

That means that people have symptoms, and a positiv e biopsy, and still the blood tests will miss about 20%.

And what about partial celiac, where celiac is only patchy? The blood tests then are even more inconclusive.

(yes, the biopsy is the test that really counts)

nora

Link to comment
Share on other sites

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. GardeningForHealth
      - GardeningForHealth replied to GardeningForHealth's topic in Coping with Celiac Disease
      9

      10 years later, my celiac is progressing

      As a side note, it seems that medical science has evolved in the past 5-6 years regarding Celiac Disease, and I am now catching up. It seems that anything that disrupts the microbiome sufficiently enough can--in genetically susceptible individuals--lead to Celiac Disease. I have been reading now that antibiotics, excessive simple carbohydrates such as refined...
    2. GardeningForHealth
      - GardeningForHealth replied to GardeningForHealth's topic in Coping with Celiac Disease
      9

      10 years later, my celiac is progressing

      I mostly eat healthy. My diet has varied over the past 10 years but mostly consisted of meals I cooked at home made from scratch. Ingredients I used over the years include (not in order): non-wheat grains such as teff, sorghum, millet, and eggs, butter, cheese, some milk, meat (poultry, red meat, but very little processed meat), gluten-free baked bread (mostly...
    3. sc'Que?
      - sc'Que? commented on Scott Adams's article in Summer 2024 Issue
      1

      Speculating on Benjamin Franklin's Health: Could He Have Had Celiac Disease?

      Not wholly sure what benefit there is to this kind of speculation. I also find it somewhat amusing that the author somehow grazed right past the rather well-known fact that Franklin was a lover of beer and ale and is reported to have been a home-brewer. Yard's Brewing, Philadelphia, even brews a modern iteration, based on Franklin's own recipe: Poor Richard...
    4. TessaBaker
      - TessaBaker replied to MiriamW's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      54

      Hair loss

      It sounds like you're dealing with a complex situation, and I can understand how frustrating it must be not to have a clear answer. Gut health can indeed play a significant role in various aspects of our well-being, including hair health.
    5. Celiac16
      - Celiac16 replied to Sultana's topic in Related Issues & Disorders
      3

      Thiamine supplementation

      I have found similar benefits from thiamine. I was diagnosed with celiac at 16 and never really recovered despite strict gluten and dairy free diet and no detectable antibodies on checkup bloodworks. I’ve tried stopping the b1 but start to feel bad again- I wanted my doctors to do more extensive testing for the different thiamine transporters and enzymes w...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      120,993
    • Most Online (within 30 mins)
      7,748
    Celiac Family
    Newest Member
    Celiac Family
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      120.3k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • GardeningForHealth
      10 years later, my celiac is progressing

      By GardeningForHealth · Posted

      As a side note, it seems that medical science has evolved in the past 5-6 years regarding Celiac Disease, and I am now catching up. It seems that anything that disrupts the microbiome sufficiently enough can--in genetically susceptible individuals--lead to Celiac Disease. I have been reading now that antibiotics, excessive simple carbohydrates such as refined sugars and starches, the manner of birth such as C-section vs vaginal delivery, the diversity of one's diet, the presence of certain bacteria or viruses, can all contribute to microbiome dysbiosis, which can lead to Celiac. This is fascinating research.
    • GardeningForHealth
      10 years later, my celiac is progressing

      By GardeningForHealth · Posted

      I mostly eat healthy. My diet has varied over the past 10 years but mostly consisted of meals I cooked at home made from scratch. Ingredients I used over the years include (not in order): non-wheat grains such as teff, sorghum, millet, and eggs, butter, cheese, some milk, meat (poultry, red meat, but very little processed meat), gluten-free baked bread (mostly Canyon Bakehouse brand), vegetables, fruits, nuts, legumes, peanuts, chocolate (not in the past 6 months). However, the mistakes I made in my diet are that I consumed too much sugar and carbohydrates from gluten-free baked goods that I baked myself at home such as gluten-free dessert items, and also I ate pretty much the same exact meals over and over, so a great lack of diversity in what I ate. I got lazy. I think this messed up my microbiome. The meals I ate were mostly healthy though. I always made sure to eat vegetables and fruits on a daily basis.  I have checked for nutrient deficiencies over the years and I am sometimes low in Vitamin D. I started supplementing it after that. What concerns me is the progressive nature of the food intolerances, which indicates the gut is not healing and has been leaking all along. 
    • TessaBaker
      Hair loss

      By TessaBaker · Posted

      It sounds like you're dealing with a complex situation, and I can understand how frustrating it must be not to have a clear answer. Gut health can indeed play a significant role in various aspects of our well-being, including hair health.
    • Celiac16
      Thiamine supplementation

      By Celiac16 · Posted

      I have found similar benefits from thiamine. I was diagnosed with celiac at 16 and never really recovered despite strict gluten and dairy free diet and no detectable antibodies on checkup bloodworks. I’ve tried stopping the b1 but start to feel bad again- I wanted my doctors to do more extensive testing for the different thiamine transporters and enzymes which would be a better indication if I was deficient or dependent on it but everyone dismisses it (there are know genetic mutations where you need to take it daily for life). I have looked into Thiamine Responsive Megablast Anemia and I have a lot of the more mild symptoms of the disease that manifest when thiamine isn’t given to the patient such as optic neuritis… I just find the parallels interesting. i think that celiacs could be a side issue of inflammation that resulted from vitamin deficiencies. I was eating a lot of sugar leading up to my diagnosis and since eating gluten free didn’t make me feel much better, I’m wondering if this was more the underlying issue (sugar heavily depletes b1). I usually take 1.5g thiamine a day.
    • Fluka66
      Waiting for urgent referral.

      By Fluka66 · Posted

      Thank you for your welcome and reply.  Yes I've been carefully reading labels looking for everything in bold and have been amazed by what I have seen. However Heinz tomato and basil soup is wheat free so I m thinking I already have ulcers?  The acid could be causing the pain . My pain always starts in one place then follows the same route through me . GP confirmed that is the route of our digestive system.  So much pain from stabbing to tearing. If I throw in milk with lactose it's horrific.  Many years of it now, won't go into details but been seeing a consultant for a supposedly different problem . Wondering what damage has been done over the years. Many thanks for your reply. Wishing you the very best.    
×
×
  • Create New...