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Keep Waiting For Biopsy?

ryo

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ryo Apprentice
ryo
Posted

my daughter's blood work came back positive for celiac and now we are waiting for the biopsy (it will happen on the 23rd so we have two more weeks).  she was gluten-free for 2 weeks and has now been back on gluten for 2 weeks.  her symptoms are back and i am having a really hard time keeping her on gluten for the biopsy. she is starting to not eat again (she actually stopped eating for about two weeks right before we took her off gluten), has zero energy to get through the day, and is having huge meltdowns (crying for hours over little things).  i guess my question is... did anyone have the biopsy moved up due to strong reactions to being back on gluten.  if she is having such strong symptoms wouldn't the damage show up in her biopsy now?  she is 5 years old and it is killing me to sit back and watch her feel like this when we know that removing gluten can turn things around so quickly!

 

would love any advise on how to sit tight and wait this out.

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greenbeanie Enthusiast
greenbeanie
Posted

Poor little one! My daughter had meltdowns like you describe for several years before she was diagnosed. She'd often have 10-15 screaming, on-the-floor tantrums per day. Any little thing would set her off. (She had other neurological and digestive symptoms too.) It was really hard to keep her on gluten for the biopsy, especially after she had three strong positive blood tests. However, I'm glad we stuck it out and got a totally clear diagnosis. Her pathology report showed high lymphocyte counts throughout, but she only had mild villous blunting in the duodenal bulb, with normal villi in other parts of the duodenum. Of course we can never know for sure, but it seems like she may have gotten a false negative biopsy if we'd done it sooner.

My own experience was that I had a very strong and awful reaction to the gluten challenge, and I felt sure that such a strong reaction must mean there was detectable damage, but my tests were negative. That was even though my hair started falling out during the challenge, I soaked five shirts a night with sweat, was having diarrhea up to ten times per day, developed acute gastritis and esophagitis, and my tongue and cheeks became so swollen and painful that the swelling still hasn't gone down almost two months later. So, unfortunately, it's not necessarily the case that strong symptoms mean the biopsy will show the problem.

It sounds like it might be a good idea to call your daughter's doctor and make sure they know the full situation. It is worrisome if she stops eating, and that alone might be a compelling reason to do the biopsy sooner. Good luck! It's so hard to watch a little one in pain (especially when the solution is so close).

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