Where Do We Go From Here?

[Mylesmommy]

My son had an EGD and sigmoidoscopy on Monday, upper biopsies negative. Waiting for sigmoid biopsies, but I thought it wasn't usually found that low.

In some strange way I am disappointed because I feel like now I have no answer. He is just really gluten intolerant I guess. I know that gluten free helps, but I feel like when you say your son is gluten intolerant people look at you and say....yeah right.

I am going to get some probiotics and switch him off of dairy again to see if we can really heal his gut. Poor boy, I can tell what he had for dinner just looking at his diaper, it all comes right back out. He can't be getting that much in terms of nutrition.

[africanqueen99]

I can't even tell you how sorry I am to hear this.  Seriously, I had two kids scoped last week and they both came back negative.  I cried!  I wanted there to be clear damage so I *knew* I was making the right decision.

 

The oldest kid is still going with celiac - even after a negative biopsy.  The GI DX her before the scope and said that it's not uncommon for kids to clearly have celiac and not have a positive biopsy.  She said it's like having a water mark on the middle of your large dining room table.  You can take a lot of pictures and never see the water mark.  Biopsies are like that - they simply can't see the entire thing.  This kid has every other sign of celiac, though (1st degree relative, stomach pains, no growth in over a year).

 

Middle kid was sort of iffy before the scope.  So he came back negative and we're not going with celiac.  He's going to be nearly 100% gluten-free until he hits the birthday party circuit and then he can have the gluten-y treats there.

 

You know, you can call your son whatever you want to the vast majority of people.  Who cares what they think - if gluten doesn't work for your kid then that's all that matters.

[Mylesmommy]

This sounds odd, but it's so nice to hear someone say they almost cried when the biopsy didn't show anything! I feel the same way. I just wanted a concrete answer! Sick, I know. I really wouldn't wish celiac on anyone! I just want to have a straightforward answer. Now I just feel like I put my kid through a procedure for nothing.

I know gluten is not good for him though. I gave him a big bowl of goldfish before he went to bed as a last goodbye before his procedure...he was up four times that night. He still wakes up at night, but when he is off gluten...sleeps like a dream.