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Positive Biopsy Negitive Bood Tests?

Edges12

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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?

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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.

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    • trents
      celiac, chocolate and alcohol

      By trents · Posted

      So, you had both and endoscopy with biopsy and a colonoscopy. That helps me understand what you were trying to communicate. No, no! It never occurred to me that you were trying to mislead me. It's just that we get a lot of posters on the forum who are misinformed about what celiac disease is and how it is diagnosed so I need some clarification from you which you were so gracious to give.
    • barb simkin
      celiac, chocolate and alcohol

      By barb simkin · Posted

      I had both the genetic genes for celiac.  My gastroenologist advised he also took a biopsy during one of my colonoscopies and endoscopy and advised I had celiac disease, along with stomach ulcers from my esophagus stomach down to my small bowel. I was shown the ulcers on the catscan and endoscopy report.  I also had polyps in 3 places throughout my large bowel. I was on a strict diet for months following.  I am sorry if I didnt define how I was diagnosed with celiac disease.  I am sorry if you think I was misleading you. I also had to pay $150.00 for the genetic testing.
    • trents
      celiac, chocolate and alcohol

      By trents · Posted

      So, I'm a little confused here. I understand you to say that you have not been officially diagnosed with celiac disease. Is this correct?  You have had genetic testing done to check for the potential for developing celiac disease and that was positive. Is this correct? I think you meant to type "gluten sensitivity" but you typed "gluten insensitivity". Just so we are clear about the terminology, there is celiac disease and there is NCGS (Non Celiac Gluten Sensitivity). They are not the same but they have overlapping symptoms. Celiac disease causes damage to the small bowel lining but NCGS does not. NCGS is often referred to in short form as gluten sensitivity. However, people often use the terms celiac disease and gluten sensitivity interchangeably so it can be unclear which disease they are referring to. Genetic testing cannot be used to diagnose celiac disease but it can be used to establish the potential to develop active celiac disease. About 40% of the general population has one or both of  the genes that have been most strongly connected with the potential to develop active celiac disease but only about 1% of the population actually develops active celiac disease. This makes the genetic test useful for ruling out celiac disease but not for diagnosing it. A colonoscopy cannot be used to diagnose celiac disease because it doesn't permit the scope to go up into the small bowel where celiac disease does the damage. They use an endoscopy ("upper GI) for checking the small bowel lining for celiac damage.
    • barb simkin
      celiac, chocolate and alcohol

      By barb simkin · Posted

      I did nor read the chocolate pkg as it was of fered to me and I ate 2 pcs. I do know that only very dark chocolate and and a very few others are gluten free. Most alcohols contain gluten. I have several yrs of not knowing my celiac condition as docs would not do the test. After looking on the internet about my sufferings I insisted on the gene trsting which showed positive for gluten insensitivity and a biopsy on my next colonoscopy that also showed positive which could not help the damage done to my small bowel. So I very rarely have a glass of wine
    • trents
      celiac, chocolate and alcohol

      By trents · Posted

      @barb simkin, are you sure the chocolate products are gluten-free and not "manufactured on equipment that also handles wheat products and tree nuts", i.e., cross-contamination? And what kind of alcoholic beverages are we talking about? Most beers are made from gluten-containing grains. Just checking.
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