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 Biopsy Negitive Bood Tests?

Edges12

Recommended Posts

Edges12 Newbie
Edges12
Posted

My 6 year old son (adopted-no real family history) Had endoscopy last week for abdominal pain, vomiting. He was found to have reflux, gastric spasm, and espophagitis. The biopsy also showed increased lymphocites in his intestional tract and villa atrophy. the GI said he felt he had Celiac and ran a celiac panel and some other Immune Tests. He just called to say that the tests came back normal and he does not have celiac. He is not sure what he has but did not reccommend any other testing. Meanwhile our son is down 7 lbs in 2 1/2 weeks and continues to do poorly. The pediatrician is still doing research.

So .... could he still have Celiac and have negative blood tests? any other thoughts on what we should do, tests etc. When he had the blood work done he had been sick for 12 days and had been on almost a full liquid diet. I asked the GI if this might effect the results and he said no. Any thoughts?

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

Celiac.com Sponsor (A8-M):


celiac3270 Collaborator
celiac3270
Posted

There definitely can be for a few reasons: If you don't eat gluten for at least 3 months before testing, if you're IgA deficient, if the lab messes up, etc. It's definitely possible. Prometheus is a good lab to send the blood to. And some people just test negative but respond very well to a gluten-free diet....or get a negative blood, but positive Enterolab result.

What blood tests were run?

KaitiUSA Enthusiast
KaitiUSA
Posted

Some blood tests that are done are not as specific as others. Prometheus labs as mentioned is a reliable lab for celiac testing. He also should get a gene test done.

Enterolab might be a good option they test for malabsorption, gluten sensitivity, genes and so forth.

He has the symptoms and the damage it sounds to me like he has celiac. Some people have negative bloodwork but still have it, some people have negative biopsies and have it.

He could also have been IgA deficient. Alot of celiacs are and that can make otherwise positive tests, negative.

I think you should find a doctor for him that knows alot about celiac and symptoms and so forth.

Good luck and your family will be in my prayers.

Edges12 Newbie
Edges12
Posted
  • Author

I am not postive which labs were run. He just wrote Celiac Panel and then also added IGA,IGM and one other plus a test for lymphocites in the blood (which is not back yet) He did not read me the results just told me they were fine. Our son was certainly not gluten free for 3 months but was for the 12 days prior to testing due to his stomach problems and inability to eat. The tests were done through LabCorp

celiac3270 Collaborator
celiac3270
Posted

I asked because the tests under the celiac panel hold different....weight w/ a pos. or neg. reaction...with one test a positive might be nearly definite and with another, it might still make celiac disease questionable.

Endoscopies can easily get false negatives but have very reliable positives. I'd go gluten-free on that.

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. Lkg5
      - Lkg5 replied to Charlie1946's topic in Related Issues & Disorders
      44

      Severe severe mouth pain

      My sebaceous hyperplasia and thrush disappeared when I stopped all dairy.
    2. Lkg5
      - Lkg5 commented on Scott Adams's article in Diagnosis, Testing & Treatment
      1

      Rapid Diagnosis of Celiac Disease Using Blood-Based Infrared Spectroscopy and Deep Learning

      Wow!!! 😂
    3. Charlie1946
      - Charlie1946 replied to Charlie1946's topic in Related Issues & Disorders
      44

      Severe severe mouth pain

      @knitty kitty Thank you so much for all that information! I will be sure to check it out and ask my doctor. I am just at a loss, I am on my 2nd round of miracle mouthwash and I brush and scrape my tongue and (sorry this is gross) it's still coated in the middle
    4. Aretaeus Cappadocia
      - Aretaeus Cappadocia posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      0

      Brown Rice Vinegar (organic) from Eden Foods is likely gluten free

      Traditional brown rice vinegars are made by fermenting brown rice and water with koji (Kōji 麹). The gluten risk comes from the method of preparing the koji: rice, wheat or barley may be used. Regardless of the starting grain, "koji" typically will be listed as an ingredient, and that term alone does not indicate gluten status. I called Eden Foods re...
    5. Scott Adams
      - Scott Adams replied to wellthatsfun's topic in Gluten-Free Recipes & Cooking Tips
      1

      heaps of hope!

      Your post nails the practical reality of living well with a celiac diagnosis. The shift from feeling restricted to discovering a new world of cooking—whether through a supportive partner making gluten-free spanakopita and gravy, or learning to cook for yourself—is exactly how many people find their footing. It turns a medical necessity into a chance to bui...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,096
    • Most Online (within 30 mins)
      7,748
    Kathy28
    Newest Member
    Kathy28
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

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

  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • Lkg5
      Severe severe mouth pain

      By Lkg5 · Posted

      My sebaceous hyperplasia and thrush disappeared when I stopped all dairy.
    • Charlie1946
      Severe severe mouth pain

      By Charlie1946 · Posted

      @knitty kitty Thank you so much for all that information! I will be sure to check it out and ask my doctor.  I am just at a loss, I am on my 2nd round of miracle mouthwash and I brush and scrape my tongue and (sorry this is gross) it's still coated in the middle 
    • Aretaeus Cappadocia
      Brown Rice Vinegar (organic) from Eden Foods is likely gluten free

      By Aretaeus Cappadocia · Posted

      Traditional brown rice vinegars are made by fermenting brown rice and water with koji (Kōji 麹). The gluten risk comes from the method of preparing the koji: rice, wheat or barley may be used. Regardless of the starting grain, "koji" typically will be listed as an ingredient, and that term alone does not indicate gluten status. I called Eden Foods regarding their product "Organic Brown Rice Vinegar" (product of Japan) to ask how their product is made. They gave me a clear answer that they >do< use rice and they >do not< use wheat or barley in preparing their koji. FWIW, the product itself does not contain any labeling about gluten, gluten risk, or gluten safety. Based on Eden's statement, I am going to trust that this product is gluten safe and use it.
    • Scott Adams
      heaps of hope!

      By Scott Adams · Posted

      Your post nails the practical reality of living well with a celiac diagnosis. The shift from feeling restricted to discovering a new world of cooking—whether through a supportive partner making gluten-free spanakopita and gravy, or learning to cook for yourself—is exactly how many people find their footing. It turns a medical necessity into a chance to build kitchen skills, eat more whole foods, and actually enjoy the process. Your point that the basics—knife skills, food safety, and experimenting with spices—are all you really need is solid, helpful advice. It’s a good reminder that the diagnosis, while a pain, doesn’t have to stop you from eating well or having fun with food.
    • Scott Adams
      Fruits & Veggies

      By Scott Adams · Posted

      You are experiencing a remarkable recovery by addressing core nutrient deficiencies, yet you've uncovered a deeper, lifelong intolerance to fruits and vegetables that appears to be a distinct issue from celiac disease. Your experience points strongly toward a separate condition, likely Oral Allergy Syndrome (OAS) or a non-IgE food intolerance, such as salicylate or histamine intolerance. The instant burning, heart palpitations, and anxiety you describe are classic systemic reactions to food chemicals, not typical celiac reactions. It makes perfect sense that your body rejected these foods from birth; the gagging was likely a neurological reflex to a perceived toxin. Now that your gut has healed, you're feeling the inflammatory response internally instead. The path forward involves targeted elimination: try cooking fruits and vegetables (which often breaks down the problematic proteins/chemicals), focus on low-histamine and low-salicylate options (e.g., peeled pears, zucchini), and consider working with an allergist or dietitian specializing in food chemical intolerances. 
×
×
  • 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.