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 Our Content
    eNewsletter
    Donate

New And Questions On Tests

newmom07

Recommended Posts

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

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

Celiac.com Sponsor (A8-M):


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.

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

Celiac.com Sponsor (A8-M):


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.

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. eKatherine
      - eKatherine replied to SaiP's topic in Coping with Celiac Disease
      12

      Dangerously underweight, Perfect gluten free and insomnia

      I suggest you look at your calorie intake. If you're not eating enough calories, your body will signal you to wake up and forage for more food. You need to be eating more calories than a healthy person of normal weight in order to gain weight. Also, your diet is extremely low in fat unless you are eating chicken thighs with the skin on, which I would recommend...
    2. trents
      - trents replied to AndiOgris's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      4

      False blood test positive?

      Since your mother has celiac disease, I would still keep an eye on this as there is a genetic component. Study results vary wildly, but the numbers are that anywhere from 10% to almost 50% of the first degree relatives of those with active celiac disease will themselves develop celiac disease.
    3. Russ H
      - Russ H replied to AndiOgris's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      4

      False blood test positive?

      Your initial test showed a moderately raised level of IgA tTG2. There are several causes of this apart from coeliac disease including: inflammation of the joints, bowel and liver. Transient rise in levels can be caused by an infection.
    4. trents
      - trents replied to sillyyak52's topic in Coping with Celiac Disease
      6

      Family education

      Rogol72, your recommendation to the OP to "show them pictures of dermatitis herpetiformis" confuses me as the OP does not mention having dermatitis herpetiformis.
    5. Rogol72
      - Rogol72 replied to sillyyak52's topic in Coping with Celiac Disease
      6

      Family education

      Hi @sillyyak52, I empathize with you. I would suggest showing them pictures of "dermatitis herpetiformis" which is a complication of undiagnosed/untreated Coeliac Disease. You can find them on Google images. It's pretty alarming to see and it may be the wake up call they need to visually understand what gluten can really do to the body. In this case...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      127,179
    • Most Online (within 30 mins)
      7,748
    Marla Jansen-DeMarco
    Newest Member
    Marla Jansen-DeMarco
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70k
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • eKatherine
      Dangerously underweight, Perfect gluten free and insomnia

      By eKatherine · Posted

      I suggest you look at your calorie intake. If you're not eating enough calories, your body will signal you to wake up and forage for more food. You need to be eating more calories than a healthy person of normal weight in order to gain weight. Also, your diet is extremely low in fat unless you are eating chicken thighs with the skin on, which I would recommend. Also be sure to add butter (real butter) to your vegetables. You can measure and record everything you eat, then look up and calculate what your protein/carb/fat intake is. Or just eat more chicken rather than filling up on vegetables and fruit.
    • trents
      False blood test positive?

      By trents · Posted

      Since your mother has celiac disease, I would still keep an eye on this as there is a genetic component. Study results vary wildly, but the numbers are that anywhere from 10% to almost 50% of the first degree relatives of those with active celiac disease will themselves develop celiac disease.
    • Russ H
      False blood test positive?

      By Russ H · Posted

      Your initial test showed a moderately raised level of IgA tTG2. There are several causes of this apart from coeliac disease including: inflammation of the joints, bowel and liver. Transient rise in levels can be caused by an infection.
    • trents
      Family education

      By trents · Posted

      Rogol72, your recommendation to the OP to "show them pictures of dermatitis herpetiformis" confuses me as the OP does not mention having dermatitis herpetiformis.
    • Rogol72
      Family education

      By Rogol72 · Posted

      Hi @sillyyak52, I empathize with you. I would suggest showing them pictures of "dermatitis herpetiformis" which is a complication of undiagnosed/untreated Coeliac Disease. You can find them on Google images. It's pretty alarming to see and it may be the wake up call they need to visually understand what gluten can really do to the body. In this case the skin ... The Coeliac rash that won't go away without a strict gluten free diet and Dapsone treatment (a toxic antibiotic). I'd also look at @glutenhatesmyguts on youtube  ... a funny educational take on Coeliac Disease ... the clips titled as follows may help ... "Celiac Disease Explained | Why Gluten REALLY Hates My Guts!" and "Story time: I almost ..." This person is on Tiktok also and has a category "Coeliac & gluten-free Info ". There's plenty of Coeliacs on Tiktok and IG posting frequently and advocating for themselves about the need to be strict and what happens when they get glutened.    Celiac Canada also has good resources on YT, both long and short educational clips  ... @CCACeliac . Do you know any Coeliacs in your area who could help you explain the need to be so strict? Some Coeliacs have mild symptoms while others have awful reactions to just a few crumbs. Or maybe the nurse could put you in contact with some other Coeliacs or a support group to help you with your family. Hope this helps you. And keep advocating for yourself no matter what.
×
×
  • Create New...