Will A Month Of Eating Gluten-free Make My Biopsy A False Negative? (also, Gliadin Question)

[gfjayhawk]

I may have celiac, according to my bloodwork. I went gluten-free about a month ago, and I feel much better now. But my children tested positive for gliadin antibodies, and my GP would now like me to be biopsied to see whether I have true celiac disease. (Her rationale is that if I truly have celiac, the kids definitely should go gluten-free even though only their gliadin antibody test was positive. If the biopsy is negative, I suppose that putting the kids on a gluten-free diet would be optional.)

Will a month without gluten mess up the biopsy results? How long do I need to eat wheat before I can get a valid test result? And, do any of you have experience with positive gliadin tests (the other antibodies in my children's panels were negative)? I'd prefer not to make the kids go gluten-free if I can avoid it, but OTOH I would hate to keep feeding them gluten if it's harming them. (At least there's no pressure... )

I've done a lot of reading, but haven't really found the answers I'm looking for. Thanks for any help you can give me!

[gfjayhawk]

Just wanted to add that I've seen quite a bit in the literature about gliadin antibodies being associated with neurological and autoimmune disorders (as well as gluten intolerance). I've only had the opportunity to speak with non-GI doctors so far, but they didn't seem to have heard much about gliadin at all. What do your GIs say about gliadin, if you have asked them?

[happygirl]

The nutritionist from the Celiac Center at the University of Maryland spoke last year and said that a gluten free diet of only one week begins to affect the biopsy in some people.

So yes, you could get a false negative. If its a positive, its definitely a positive. But if its a negative, you won't know if its a true negative.

[tarnalberry]

there's no way to know for sure - it depends on how much damage you had, how fast you heal, where they biopsy, how they read it, etc.

quite frankly, I'd either insist on the biopsy for them (if you need a biopsy-generated diagnosis for some reason), or try them on the diet and see if there are any changes for them. the dietary challenge is a valid diagnostic test, if done properly (if they're not getting gluten anywhere).

[gfjayhawk]

My main concerns with just changing their diet now are compliance (especially with my younger son), and that we wouldn't have an actual diagnosis. (That would probably only matter if I needed to take them to a GI later on.)

Do they give kids a general anesthetic for the biopsy? It seems like something that would be pretty scary for a child.

  tarnalberry said:

there's no way to know for sure - it depends on how much damage you had, how fast you heal, where they biopsy, how they read it, etc.

quite frankly, I'd either insist on the biopsy for them (if you need a biopsy-generated diagnosis for some reason), or try them on the diet and see if there are any changes for them. the dietary challenge is a valid diagnostic test, if done properly (if they're not getting gluten anywhere).

[cruelshoes]

  gfjayhawk said:

My main concerns with just changing their diet now are compliance (especially with my younger son), and that we wouldn't have an actual diagnosis. (That would probably only matter if I needed to take them to a GI later on.)

Do they give kids a general anesthetic for the biopsy? It seems like something that would be pretty scary for a child.

We had an endoscopy on son when he was 6. Honestly - it was harder on me than it was on him . He was not able to eat anything after midnight, and we got to the hospital at 6 am for a 7 am appointment. They put him out with laughing gas, and then put in the IV while he was under. He freaked out a little from the feeling of the laughing gas, but it was only for a few seconds until he was out. They offered us something to relax him beforehand, but we didn't think he needed it. If I had it to do over again, I would have taken them up on it. He got to choose a scent to put in his mask - he chose root beer. It was all done in an hour or so, and we were home before noon. He doesn't remember anything about the procedure itself because of the amnesia effect of the sedation.

I am a big proponent of getting the endoscopy to get a good diagnosis. The pictures we have of his intestines tell the story for us. My family/in-laws were very resistant to making him gluten-free until they saw the pictures. Even though he had no symptoms, the damage to his intestines was very clear, and quite dramatic. There will be no question later on when he is a teeneger whether or not he really has celiac. Also, if you decide to get a 504 plan or try to get gluten-free lunches from the school district, you will need a note from the doctor to do so. That would be much more difficult without a diagnosis behind you.

Others will disagree, but I think a biopsy is a wise way to go. Good luck with whatever you decide to do.