So, we went to go see the GI today. It was a frustrating visit. He said given the blood test results, and the positive response to the diet (we started when we got the blood test results) he was 90% certain that it was celiac, but he would not "treat" him for celiac w/o the biopsy.
So, we'd have to put him back on gluten for a month and he'd undergo general anesthesia and they'll do the biopsy. He was very kind and understanding, but he really disagreed with our reluctance to undergo the biopsy.
I just can't justify poisoning a child this age for a month to satisfy the celiac "gold standard." If there hadn't been a five week delay between the blood test results and the GI visit, I probably would have kept the gluten in. But it seemed so irresponsible of me to do NOTHING. My kid was in pain, how could I do nothing?
Our plan is to keep him GF, and wait a couple of years and do it before he starts kindergarten in 2009. I think at that point he may start to notice or care that he's not eating what other kids eat. Right know he could not care less. He likes his five foods and he is totally happy to just eat that. The nutritionist looked at his growth charts and said he's clearly getting enough nutrition. (He inherited a nice SLOW metabolism from me and dad) His diet is limited, but not unhealthy.
But in the meantime, he does not want to 'treat' us for celiac until we do the biopsy. We talked him into doing the standard blood tests, and stool tests that they would do with the diagnosis. But I don't think this is going to work with this doctor. I want somebody who is willing to wait until my kid is a willing participant ie, he's 100% independent in the bathroom, and he understands why he's eating stuff that makes him very sick.
Does that sound crazy? Why don't the doctors "get it?" Taking the gluten out of my house really hasn't been that big of a deal. I'm an accomplished cook, and make most of my own sauces from scratch. So, I use wheat-free Tamari instead of soy sauce in my marinade. But subjecting a healthy child to general anesthesia at this point seems, well negligent.
The upside of the visit, was that he does not have the symptoms of cascien intolerance. He may have a problem with lactose, but most dairy he likes doesn't have a lot of lactose. We got a thing of lactaid milk, and we use good quality cheese so I think we're in good shape on that one.
So, it wasn't a complete waste of time.
So, we'd have to put him back on gluten for a month and he'd undergo general anesthesia and they'll do the biopsy. He was very kind and understanding, but he really disagreed with our reluctance to undergo the biopsy.
I just can't justify poisoning a child this age for a month to satisfy the celiac "gold standard." If there hadn't been a five week delay between the blood test results and the GI visit, I probably would have kept the gluten in. But it seemed so irresponsible of me to do NOTHING. My kid was in pain, how could I do nothing?
Our plan is to keep him GF, and wait a couple of years and do it before he starts kindergarten in 2009. I think at that point he may start to notice or care that he's not eating what other kids eat. Right know he could not care less. He likes his five foods and he is totally happy to just eat that. The nutritionist looked at his growth charts and said he's clearly getting enough nutrition. (He inherited a nice SLOW metabolism from me and dad) His diet is limited, but not unhealthy.
But in the meantime, he does not want to 'treat' us for celiac until we do the biopsy. We talked him into doing the standard blood tests, and stool tests that they would do with the diagnosis. But I don't think this is going to work with this doctor. I want somebody who is willing to wait until my kid is a willing participant ie, he's 100% independent in the bathroom, and he understands why he's eating stuff that makes him very sick.
Does that sound crazy? Why don't the doctors "get it?" Taking the gluten out of my house really hasn't been that big of a deal. I'm an accomplished cook, and make most of my own sauces from scratch. So, I use wheat-free Tamari instead of soy sauce in my marinade. But subjecting a healthy child to general anesthesia at this point seems, well negligent.
The upside of the visit, was that he does not have the symptoms of cascien intolerance. He may have a problem with lactose, but most dairy he likes doesn't have a lot of lactose. We got a thing of lactaid milk, and we use good quality cheese so I think we're in good shape on that one.
So, it wasn't a complete waste of time.
posted by Margaret at 7:54 PM
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