Jump to content

  • 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):

Help Me Make Sense Of This?

kbidarch

Recommended Posts

kbidarch Apprentice
kbidarch
Posted

My 3 year old daughter had a positive blood test for Celiac, which was really an answer to so many questions - or so we thought! She underwent the biopsy on Tuesday. It came back with chronic inflammed esophagus, chronic inflammed stomach, elevated lymphoid aggregates, elevated presense of eosinophils (sp), but NEGATIVE for Celiac Sprue.

Does this mean she does NOT have Celiac? Does this mean she *may* have Celiac, but without enough damage to be detectable? What about the other things - esophagus, stomach, lymphocytes, etc - do they ever go along with Celiac? I was SO hoping for something more definitive today. The Dr wants to simply put her on Axid to treat the inflammation, and see her in 3 months.

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

Celiac.com Sponsor (A8-M):


kbidarch Apprentice
kbidarch
Posted
  • Author

My 3 year old daughter had a positive blood test for Celiac, which was really an answer to so many questions - or so we thought! She underwent the biopsy on Tuesday. It came back with chronic inflammed esophagus, chronic inflammed stomach, elevated lymphoid aggregates, elevated presense of eosinophils (sp), but NEGATIVE for Celiac Sprue.

Does this mean she does NOT have Celiac? Does this mean she *may* have Celiac, but without enough damage to be detectable? What about the other things - esophagus, stomach, lymphocytes, etc - do they ever go along with Celiac? I was SO hoping for something more definitive today. The Dr wants to simply put her on Axid to treat the inflammation, and see her in 3 months.

And for just a bit more info - here are her blood-work numbers:

IGE level - 196 (normal: <128)

Gliadin antibody - IGG antibody - 42 (normal: <17)

IGA levels were normal.

WheatChef Apprentice
WheatChef
Posted

No, Yes and Quite often.

The test can't prove the absence of celiac, only the presence of it. The presence of elevated antibodies in a young child should have been a good indicator to attempt a gluten-free diet but instead the doctor is charging you for drugs. The presence of elevated antibodies along with severe internal-inflammation should have been almost enough for a diagnosis.

Since your daughter already did the blood tests and the biopsies there is no longer any reason for her to continue consuming gluten if you think a gluten-free diet would benefit her (which it certainly sounds like there's a good chance it would). Good luck with the difficult diet adaptation ahead of you two.

ravenwoodglass Mentor
ravenwoodglass
Posted

Now you put the med away and do the diet strictly for a few months. She has a positive blood test and many endoscopic changes that are indicitive of celiac. Whether your doctor knows that the changes are the ones you would see with celiac before the villi are totally destroyed is doubtful. There is also 22 ft of small intestine and the damage can be spotty and easily missed. IMHO you should start the diet for her and also test all other family members.

Roda Rising Star
Roda
Posted

I have had my kids blood tested and they are both negative. If either one of them showed up positive on any one of the bloodwork tests I would not hesitate to put them gluten free based on that. I would have them get an EGD and biopsy too just to rule out other things also. I am blood and biopsy proven celiac, but now that I know more than I did when I was diagnosed, I wouldn't let a negative biopsy keep them gluten free if they needed to.

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. trents
      - trents replied to ThomasA55's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      5

      Iron loss and potential celiac.

      Yes, it does. And joint pain is another celiac symptom that is now well-recognized.
    2. ThomasA55
      - ThomasA55 replied to ThomasA55's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      5

      Iron loss and potential celiac.

      Does my iron loss sound like celiac to you?
    3. trents
      - trents replied to ThomasA55's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      5

      Iron loss and potential celiac.

      Being as how you are largely asymptomatic, I would certainly advise undertaking a gluten challenge in order to get formal testing for celiac disease. We have many forum participants who become violently ill when they undertake a gluten challenge and they therefore can't carry through with it. That doesn't seem to be the case with you. The reason I think it...
    4. ThomasA55
      - ThomasA55 replied to ThomasA55's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      5

      Iron loss and potential celiac.

    5. trents
      - trents replied to ThomasA55's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      5

      Iron loss and potential celiac.

      Welcome to the celiac.com community, @ThomasA55! Before I give my opinion on your question about whether or not you should undergo a gluten challenge, I would like to know how you react when you get a good dose of gluten? Are you largely asymptomatic or do you experience significant illness such as nausea and diarrhea? You mentioned intermittent joint...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      134,086
    • Most Online (within 30 mins)
      10,442
    Joseph01
    Newest Member
    Joseph01
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.7k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • trents
      Iron loss and potential celiac.

      By trents · Posted

      Yes, it does. And joint pain is another celiac symptom that is now well-recognized. 
    • ThomasA55
      Iron loss and potential celiac.

      By ThomasA55 · Posted

      Does my iron loss sound like celiac to you?
    • trents
      Iron loss and potential celiac.

      By trents · Posted

      Being as how you are largely asymptomatic, I would certainly advise undertaking a gluten challenge in order to get formal testing for celiac disease. We have many forum participants who become violently ill when they undertake a gluten challenge and they therefore can't carry through with it. That doesn't seem to be the case with you. The reason I think it is important for you to get tested is that many or most people who don't have a formal diagnosis find it difficult to be consistent with the gluten-free diet. They find ways to rationalize that their symptoms are due to something other than celiac disease . . . especially when it becomes socially limiting.  The other factor here is by being inconsistent with the gluten free diet, assuming you do have celiac disease, you are likely causing slow, incremental damage to your gut, even though you are largely asymptomatic. It can take years for that damage to get to the point where it results in spinoff health problems. Concerning genetic testing, it can't be used for diagnosis, at least not definitively. Somewhere between 30 and 40% of the general population will have one or both of the two genes known to be associated with the development of active celiac disease. Yet, only about 1% of the general population will develop active celiac disease. But the genetic testing can be used as a rule out for celiac disease if you don't have either gene. But even so, that doesn't eliminate the possibility of having NCGS (Non Celiac Gluten Sensitivity).
    • ThomasA55
      Iron loss and potential celiac.

      By ThomasA55 · Posted

    • trents
      Iron loss and potential celiac.

      By trents · Posted

      Welcome to the celiac.com community, @ThomasA55! Before I give my opinion on your question about whether or not you should undergo a gluten challenge, I would like to know how you react when you get a good dose of gluten? Are you largely asymptomatic or do you experience significant illness such as nausea and diarrhea? You mentioned intermittent joint pain before you began experimenting with a low gluten diet. Anything else?
×
×
  • Create New...