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

Dr. Or Enterolab And Diagnosis Or Not


bahrbdoll

Recommended Posts

bahrbdoll Rookie

So, I haven't had much success with answers to what's wrong with me- my insurance will pay for genetic testing, so do you think that it would be benifical to start w/ my Dr. and if I don't get anything usefull then do entero lab? What are the benefits of having an actual diagnosis? I do have 3 daughters i'm worried about. Thanks

I guess I should have mentioned I've been gluten-free for 3mo.- and I am seeing some improvements


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



Celiac.com Sponsor (A8-M):



ang1e0251 Contributor

If it would be helpful to your daughters, then you should consider getting the dr's dx. See where the dr wants to take the testing. It's hard to go back later if you decide you want testing down the road and have been gluten-free for awhile.

Lisa Mentor

These are the tests to request from your doctor:

Anti-gliadin antibodies (AGA) both IgA and IgG

Anti-endomysial antibodies (EMA) - IgA

Anti-tissue transglutaminase antibodies (tTG) - IgA

Total IgA level.

Make sure that you are on a full gluten diet, until all testing is exausted. Enterolabs can test you for sensitivites, but they cannot diagnose for Celiac.

Good luck an take a walk around this place. It's full of wonderful information.

LDJofDenver Apprentice
So, I haven't had much success with answers to what's wrong with me- my insurance will pay for genetic testing, so do you think that it would be benifical to start w/ my Dr. and if I don't get anything usefull then do entero lab? What are the benefits of having an actual diagnosis? I do have 3 daughters i'm worried about. Thanks

I guess I should have mentioned I've been gluten-free for 3mo.- and I am seeing some improvements

If your medical insurance will pay for genetic testing I'd do it, especially since you don't have to be eating gluten to have that done (you mentioned you've been gluten-free for a few months).

A lot of celiacs on this forum (and out in the world in general) don't have a confirmed medical diagnosis (are self-diagnosed, in effect). My son was diagnosed by diet, by his GI doc, 11 years ago or so, which was good enough for him (and the doc!) after many many years of suffering and misdiagnosis. The GI doc's mother had celiac disease and doc took one look at my son's history and told him what was suspected, and put on a sort of Atkins diet to confirm. Both were delighted at my son's response and that was that. He began living gluten free.

I am diagnosed by both positive blood work and small intestine biopsy. A reason I see, by comparison of my son's to my case, is that with a medical diagnosis people (the public, family, schools, doctors/medical community) seem to take it more seriously and don't question you. Medical people are scientists and they always like "proof." However, for a large percent of celiacs, especially ones whose blood work came up negative, they have all the proof they need by the dramatic improvements once on a gluten free diet.

bahrbdoll Rookie

Thank You so much! That was the perfect answer, just what I needed to hear. I guess I'm the type of person who feels like I need it in black and white somehow someway. I'm just really having a hard time w/ Dr. telling me nope, no celiacs even though I litterally have experienced just about every symptom I've come across. yet, I'm improving slowly but surely being gluten-free- I just worry about the fact this is for life and I would like to know 100%, specially when it affects my girls. Thank you again

Amyleigh0007 Enthusiast

I finally got a doctor's diagnosis because of my genetic testing done through Entrolab. My doctor did not take me seriously when I first went in for the blood test. It was one year later with my gentic testing in hand did he sit and really listen to me. When he found out I had been gluten free for one year with fantastic results on top of having one Celiac gene and one gluten sensitivity gene he diagnosed me with Celiac. Since your insurance will pay for the genetic testing I would go ahead and have it done. You do not need to be eating gluten for it to be accurate. But, if you plan on having the blood test done to test for Celiac you should begin eating gluten again, at least for a few months. Three months gluten free is long enough for your body to begin to heal and you might not get accurate results.

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,650
    • Most Online (within 30 mins)
      7,748

    Alexandersgirl
    Newest Member
    Alexandersgirl
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
      Did the GI doc give you any rational for stopping the Tylenol during the gluten challenge? I have never heard of this before and I can't imagine a good reason for it. Ibuprofen, maybe, because it is an anti inflammatory but acetaminophen?  I don't see that it would have any impact on the test results to take Tylenol.
    • Julie 911
      Good day! New members here and I have a question about medication. My gastroenterologist made me stop some medication during the gluten challenge beforenthe screening test but I have a little surgery tomorrow and I need to know if I can use tylenol for half a day or if it will give me false results using it.   Thanks 
    • Scott Adams
      I agree, there can be contamination at many points--milling is another possible source of contamination for any flours.
    • trents
      Keep in mind that with manufactured food products, "gluten free" doesn't equate to no gluten. Things that are naturally gluten free can be cross-contaminated with gluten in the field, in shipping and in processing. In the U.S. companies can use the gluten free label as long as the product doesn't exceed 20ppm of gluten. That amount still may cause a reaction in some people.
    • deanna1ynne
      Dd10 was tested for celiac four years ago bc two siblings were dx’d (positive labs and biopsies). Her results at the time were positive ema  and ttg (7x the UL), but a negative biopsy. We checked again three months later and her ttg was still positive (4x the UL), but ema and biopsy were negative. Doc said it was “potential celiac” and to keep eating gluten, but we were concerned about harming her growth and development while young and had her go gluten-free because we felt the labs and ema in particular were very suggestive of early celiac, despite the negative biopsies. She also had stomach aches and lethargy when eating it. We just felt it’d be better to be safe than sorry. Now, four years later, she doesn’t want to be gluten-free if she doesn’t “have to be,” so underwent a 12 week gluten challenge. She had labs done before starting and all looked great (celiac panel all negative, as expected.) Surprisingly, she experienced no noticeable symptoms when she began eating gluten again, which we felt was a positive sign. However, 12 weeks in, her labs are positive again (ttg 4x the UL and ema positive again as well). Doc says that since she feels fine and her previous two biopsies showed nothing, she can just keep eating gluten and we could maybe biopsy again in two years. I was looking up the ema test and the probability of having not just one but two false positives, and it seems ridiculously low.  Any advice? Would you biopsy again? She’s old enough at this point that I really feel I need her buy-in to keep her gluten-free, and she feels that if the doc says it’s fine, then that’s the final word — which makes me inclined to biopsy again and hope that it actually shows damage this time (not because I want her to have celiac like her sisters, but because I kind of think she already does have it, and seeing the damage now would save her more severe damage in the long run that would come from just continuing to eat gluten for a few more years before testing again.)  Our doc is great - we really like him. But we are very confused and want to protect her. One of her older sibs stopped growing and has lots of teeth problems and all that jazz from not catching the celiac disease sooner, and we don’t want to get to that point with the younger sis. fwiw- she doesn’t mind the biopsy at all. It’s at a children’s hospital and she thinks it’s kind of fun. So it’s not like that would stress her out or anything.
×
×
  • 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.