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New And Questions On Tests

newmom07

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newmom07 Rookie
newmom07
Posted

Hi,

We think our 20 mo old son may have a wheat allergy. Our Dr. is less interested, but is ordering the celiac panel recommended here, a panel of common allergies and having his stool evaluated for malabsorption. My DH found this lab which tests using a stool sample, but seemed to be respected among the celiac community. Open Original Shared Link Anyone have any experience with this option? Is blood test to biopsy really the path, or could we opt for this less invasive diagnosis?

Thanks for any expertise you can share - getting up to speed is hard, but we're working at it!

-Betsy

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Simona19 Collaborator
Simona19
Posted

Hi,

We think our 20 mo old son may have a wheat allergy. Our Dr. is less interested, but is ordering the celiac panel recommended here, a panel of common allergies and having his stool evaluated for malabsorption. My DH found this lab which tests using a stool sample, but seemed to be respected among the celiac community. Open Original Shared Link Anyone have any experience with this option? Is blood test to biopsy really the path, or could we opt for this less invasive diagnosis?

Thanks for any expertise you can share - getting up to speed is hard, but we're working at it!

-Betsy

Hi!

I had the Gene test done in the similar Lab. I paid for it $386,-. My doctor used at first Quest Diagnostic for my gene test- three times. Each time it came back negative. Then I went to The Celiac Center at Columbia University Hospital in New York. My new doctor had ordered the gene test (the cheek swab) at Kimball genetics division of LabCorp. It came back positive. I have only a half of the gene DQ2. I have a small chance to get the celiac disease, but the posibility is there. Finaly I heard something positive because I had the symptoms, but nobody believed it that I was sick.

The lab did the detailed report on every alleles they found.

I heard that Enterolab was better then Quest and they, as you said, will give you the more detailed report which can help you to avoid allergens.

I also want to mention that I had my common allergies checked at my allergologist office. She did the prick test for them. I saw the reactions imediately. It was cheeper than stool tests.

I don't know which test is more reliable, but I hope I helped you in some way.

And one last thing: My husband was also tested for the celiac disease. His blood work came back positive. He had : tissue transglutam Ab 39 ref. range <5 and Gliadin AB IGA 76 ref. range <11. His doctor told him that he don't need to have endoscopy because his results are high and that was enough for the diagnosis.

ravenwoodglass Mentor
ravenwoodglass
Posted

Glad to hear your ped is taking this seriously. Do be aware that celiac is not an allergy so he may show negative to wheat on an allergy panel but still have celiac or gluten intolerance.

I didn't use Enterolab for diagnosis and they don't strictly 'diagnose' celiac but they can tell you if he is forming antibodies.

There are false negatives in both blood and biopsy so after you are done with all testing do give a good strict trial of the diet.

MsCurious Enthusiast
MsCurious
Posted

Hi!

I had the Gene test done in the similar Lab. I paid for it $386,-. My doctor used at first Quest Diagnostic for my gene test- three times. Each time it came back negative. Then I went to The Celiac Center at Columbia University Hospital in New York. My new doctor had ordered the gene test (the cheek swab) at Kimball genetics division of LabCorp. It came back positive. I have only a half of the gene DQ2. I have a small chance to get the celiac disease, but the posibility is there. Finaly I heard something positive because I had the symptoms, but nobody believed it that I was sick.

The lab did the detailed report on every alleles they found.

I heard that Enterolab was better then Quest and they, as you said, will give you the more detailed report which can help you to avoid allergens.

I also want to mention that I had my common allergies checked at my allergologist office. She did the prick test for them. I saw the reactions imediately. It was cheeper than stool tests.

I don't know which test is more reliable, but I hope I helped you in some way.

And one last thing: My husband was also tested for the celiac disease. His blood work came back positive. He had : tissue transglutam Ab 39 ref. range <5 and Gliadin AB IGA 76 ref. range <11. His doctor told him that he don't need to have endoscopy because his results are high and that was enough for the diagnosis.

WOW... I'm so amazed at what I'm learning here! Half a DQ2 gene? I know there are some places that are up on the research and some (like mine) that are still back in 1970. :( I know my gene test was sent to Quest, which doesn't reassure me much. I've not read much good about them. And when I got the results call from my doctors assistant, she couldn't even tell me my two DQx markers. She didn't even really know what I was talking about. Thanks for sharing... it gives me hope.

sa1937 Community Regular
sa1937
Posted

WOW... I'm so amazed at what I'm learning here! Half a DQ2 gene? I know there are some places that are up on the research and some (like mine) that are still back in 1970. :( I know my gene test was sent to Quest, which doesn't reassure me much. I've not read much good about them. And when I got the results call from my doctors assistant, she couldn't even tell me my two DQx markers. She didn't even really know what I was talking about. Thanks for sharing... it gives me hope.

My local hospital uses Quest any time blood needs to be analyzed that they can't do in-house. I have no problem with that. I have no clue what genes I have...only that I have celiac.

ETA: Gene tests are not diagnostic.

MsCurious Enthusiast
MsCurious
Posted

My local hospital uses Quest any time blood needs to be analyzed that they can't do in-house. I have no problem with that. I have no clue what genes I have...only that I have celiac.

ETA: Gene tests are not diagnostic.

My Doctor said if my DQx's came back and didn't show DQ2 or DQ8 we could rule out Celiac, which is why he did that test. If it could be ruled out ...that door would be closed. If it came back that I had the markers, then there "could be" a possiblity that I either have or could develop celiac disease.

ravenwoodglass Mentor
ravenwoodglass
Posted

My Doctor said if my DQx's came back and didn't show DQ2 or DQ8 we could rule out Celiac, which is why he did that test. If it could be ruled out ...that door would be closed. If it came back that I had the markers, then there "could be" a possiblity that I either have or could develop celiac disease.

Unfortunately your doctor is misinformed. Many have those genes and never develop celiac and there are celiacs that don't have those genes. Gene testing is a relatively new science and much is being learned every day but not all doctors keep up with the research.

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MsCurious Enthusiast
MsCurious
Posted

Unfortunately your doctor is misinformed. Many have those genes and never develop celiac and there are celiacs that don't have those genes. Gene testing is a relatively new science and much is being learned every day but not all doctors keep up with the research.

Yeah, I think that's exactly what I'm facing, which is why I sent him that video from the Mayo Research doctor. :) (I found it and sent it to him after the blood tests were already drawn) If nothing else, I'll know what my two DQ markers are so I can kind of watch as research unfolds.... and have an idea how it might apply to me. That's just a side bonus to the disappointment, I guess. :)

ravenwoodglass Mentor
ravenwoodglass
Posted

If nothing else, I'll know what my two DQ markers are so I can kind of watch as research unfolds.... and have an idea how it might apply to me. That's just a side bonus to the disappointment, I guess. :)

As long as they look for the other markers...some only look for those 2 and that's it plus new ones are being discovered everyday. To confuse things even further some genes are considered celiac associated in one country but not in another, like mine.

MsCurious Enthusiast
MsCurious
Posted

As long as they look for the other markers...some only look for those 2 and that's it plus new ones are being discovered everyday. To confuse things even further some genes are considered celiac associated in one country but not in another, like mine.

Yeah, I've read that Ireland and places like UK are far ahead of us in diagnosis of Gluten Intolerance/Celiac. They usually diagnose in under a year and here in the USA it takes an average of eleven years. That just goes to show what people have to go through to get the RIGHT diagnosis...sadly. :( I know the head Celiac guru at Mayo Clinic in Rochester is from Ireland or Scotland area. I'm sure they pulled him over for his expertise, since they are so far ahead of us.

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    • Theresa2407
      Is this celiac?

      By Theresa2407 · Posted

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For some there may be other factors involved, but most just aren’t letting their body heal properly. I blame the internet, and misinformation it contains. People want a quick fix, not realizing this is a life long disease. 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    • Wheatwacked
      Is this celiac?

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    • Rogol72
      Help I’m cross contaminating myself,

      By Rogol72 · Posted

      I cut out the rice because it was affecting my stomach at the time ... not necessarily dermatitis herpetiformis. It was Tilda Basmati Rice, sometimes wholegrain rice. I was willing to do whatever it took to heal. Too much fiber also disagrees with me as I have UC.
    • trents
      Is this celiac?

      By trents · Posted

      But you didn't answer my question. When you consume gluten, is there an identifiable reaction within a short period of time, say a few hours?
    • Scott Adams
      Is this celiac?

      By Scott Adams · Posted

      You can still have celiac disease with negative blood test results, although it's not very common:  Clinical and genetic profile of patients with seronegative coeliac disease: the natural history and response to gluten-free diet: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5606118/  Seronegative Celiac Disease - A Challenging Case: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9441776/  Enteropathies with villous atrophy but negative coeliac serology in adults: current issues: https://pubmed.ncbi.nlm.nih.gov/34764141/   
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