Ada had an appointment with her gastroenterologist at Duke on Monday. She had dropped from the 7th to the 2nd percentile in weight in three months and the doctor was concerned about that, and had done a bunch of bloodwork and referred us to an allergist to help us sort out all her reactions, who we will incidentally see tomorrow.
Although weight isn’t the only indication of health, I wanted it to get back up to where it was because with all her food issues, it makes everyone, especially the doctor, uneasy when she loses weight.
I stopped eating rice and chicken because those were the foods she most often threw up. I threw potatoes in there as well, but added lamb and began eating more beef– pasture fed of course.
Ada had a rough 5 weeks between the appointments, mouth ulcers kept her from eating solids for a week or so, and then a stomach virus kept her from eating solids for another week and gave her terrible diarhea for a little more than a week.
Well, she gained 1.75 pounds! She actually even looks healthier and more vibrant these days, but it was a rough month. I really think it was the chicken. She just always got sick on it, and over ate it to an extent that it seemed a tad weird.
Her bloodwork was basically all normal. So let’s see here… gained weight, check. bloodwork good, check. and yes, the doctor STILL wants to do an endoscopy. Which, actually, I’m not totally against. If she has damage in her esophogus, stomach or intestines, it would be good to know.
They don’t feel she eats enough calories because we don’t know how much she actually gets when she nurses. Of course, my answer to that is, “Well she mostly nursed the past six weeks and gained MORE weight, so I think she’s getting plenty!” I didn’t say it like that to the doc, though.
But in all seriousness, if you can’t measure the calories she gets, you can just as easily say you don’t know that its NOT enough, as you can say that it is.
I know in my heart that the toddler nursing is helping our situation a lot.
Next thing. Before the endoscopy she wants us to feed Ada gluten for two weeks, because the way a celiac diagnosis works is that they have to see that the villi in the intestine are damaged to give the diagnosis, and Ada reacted so strongly to foods through my milk, she has never eaten gluten herself.
I hope the allergist has a different opinion. I’ve heard of a few allergists giving a kid a celiac diagnosis just based on symptoms as strong as Adas.
I just don’t understand why they can pressure me about her weight and to supplement her diet with more solids and less breastmilk, and then think its a good idea to feed her gluten. It’s not going to happen. Maybe when shes five. But by then it would different anyway. I’m not gonna lose the good health we’ve gained and the weight we’ve gained so that the doctor can give a gold standard diagnosis, at least not at this point.
I understand the reasoning, I really, really do. And my impression is that having a celiac diagnosis can help when she gets in schools with legal safeguards and insurance and stuff. But at this point in her life, she needs the good health more. I’m not gonna damage her gut on purpose.
And Payman had a good way of looking at it to. We aren’t at all these doctor’s appointments to prove she has food issues. We know that. We’ve seen the changes in her over the past 16 months of her life. I know that when I ate bread, 4 hours later she’d cry unconsoably for an hour– “colic”. And when I stopped the different foods, the crying and pain and rashes stopped.
Now she has small minor reactions we are trying to pin down, but that doesn’t mean we are ready to challenge the big foods that cause her issues. Her immune system is still forming. And it is malfunctioning, attacking things that are meant to be foods. So I’m not gonna tax it out anymore.
Oh, but Payman’s point. We are interested in doing the endoscopy to see if there are any other issues we need to be aware of. We don’t need it to know that gluten and other foods are damaging her inside.
So no, no gluten trial. Not yet. We’ll see how the allergist feels tomorrow, because I know the GI doc is going to defer to his opinion.