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

How Long Will Villi Damage Show On Biopsy?


boysmom

Recommended Posts

boysmom Explorer

I am 100% convinced I am reacting to gluten. The question is what the cause is. I have been gluten-free for about 2 months now and I simply do not think I can tolerate a long enough gluten challenge to be effective. At this point one small cross-contamination leads to a night of misery and 2 days of incapacitating lethargy. I just found evidence in my baby book that looks very likely to me that this may have been an issue when I was 1 month old. *IF* I'm right and I've had this all my life (I'm 47 now) I'm wondering whether the damage would still be able to show on biopsy at this point. Do doctors rebiopsy regularly to check your progress as you recover? if so, how often were you tested and how long was it before your biopsy looked normal again? I guess I'm wondering whether a biopsy would be a waste of time at this point ( and I know even if it had been done before I quit eating gluten it could have shown negative, but I'm trying to guess what the chances are that it would show).

Thanks,

Luanne


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



Celiac.com Sponsor (A8-M):



chasbari Apprentice

We finally came to the conclusion I was dealing with Celiac shortly before Thanksgiving this past November and went gluten-free even though I had no diagnosis and everyone was cautioning about how it would prevent a proper diagnosis. Sure enough, the blood test was negative but my doctor was very willing to continue down the diagnosis path because of all the anecdotal information and my initial positive response to gluten-free. The initial imaging they did on my abdomen also showed some areas of concern so the endoscope was ordered. I had that about six weeks after starting gluten-free and the Gastro took one look at the villous atrophy and said it was a no brainer on the diagnosis. This was after the gluten-free Paleo was making me feel much better. Don't know if this helps at all and I think I was very fortunate to have a very cooperative group of physicians throughout the process. Oh, formal DX was given in February. I have not had any follow up imaging or biopsy as of yet and don't think will do any until a year has passed so I am not familiar with what the typical follow up would be.

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.