In the spring of 2005, my daughter developed persistent problems with her digestive system--frequent morning nausea, occasional throwing up, and stomach pain. This started with a stomach virus that seemed to resolve itself quickly in what seemed like a normal manner, but then the symptoms returned. For about a month, we had trouble figuring it out. The symptoms, actually, were exactly what I was told indicated post-viral gastroparesis.
After some casting about, we took Maya to Children's Hospital's (we live in Pittsburgh) GI department, where she took the antibody test for celiac. This was positive, so an endoscopy was done and I was told that it showed "enough" flattened villi to make a celiac diagnosis. My sense was that she did not have a markedly smooth bowel, but that there was some flattening of the villi.
When I read stories other parents have told, here's the part where their children are put on gluten-free diets and the whole world turns around almost immediately. The symptoms disappear, the child starts thriving again, and all is well.
My daughter's story is a little different, and that's causing us some confusion. Happily, it isn't a tragic one. Unlike many parents of children diagnosed with Celiac, we did not suffer through terrifying years of acute symptoms, failure to grow, hospitalizations and even near-death traumas. Maya had always been extremely healthy and continues to be tall, big and strong for her age.
But her symptoms didn't immediately disappear. They lingered for a month, seemingly unaffected by the new diet. This was frustrating, but more frustrating was her doctors' seeming inability to process that information. It wasn't that they simply said, "well, sometimes it takes a while" (although from what I can tell, it usually doesn't); it was more like they had settled on Celiac as the cause of her previous problems and then seemed to edit her history in their minds so that the narrative fit celiac--gluten had clearly been the problem and she started feeling better pretty quickly on the gluten-free diet. The fact that we didn't see it that way didn't seem to have an impact.
Still, after a month, she did feel better, so we have stuck to the gluten-free diet, being as vigilant as we can in keeping her away from gluten, but this has not ended her GI troubles. They are, fortunately, periodic, not constant. They usually begin with what seems like a typical kids upset tummy, and then for a month or so afterward she has trouble with morning nausea (and sometimes nausea at other times of the day), and her stomach seems to be very connected to her emotions during these periods. This problem has shown up consistently in late summer, but I do not connect it to the start of school because this year, it was the last week before school that saw the problems fade away. Her nausea and stomach pain seems to be slightly eased by periactin at night, but with no consistency.
So, we've been left wondering whether Maya's occasional bouts of stomach trouble have been caused by exposure to gluten or if Maya's celiac is silent and the problem comes from some other source or, finally (and I know this will be met with very strong admonitions), whether Maya doesn't have celiac disease at all. My wife is a medical anthropologist and we have both seen western medicine declare something to be a fact for years, absolutely and with no equivocation, until something new comes to light. For instance, ulcers were caused by stomach acid until they were found to be caused by bacteria--I don't remember GIs saying "we just don't know what causes these things," but maybe they did. I'm not a doctor, but I have some skepticism about medical certainty and I hope no one will take offense at that. I'm not doctor-bashing here; I'm trying to help my kid.
Here's the latest chapter in the story: yesterday we accidentally gave Maya a cookie that had gluten. It was listed as wheat-free, but we were careless and didn't notice that it had barley flour. We were a bit distressed but also curious: this was the first time we knew without doubt that she had consumed gluten since she began the gluten-free diet, so we waited for symptoms. None appeared. Not yesterday, and not today now that she's up.
I know that this does not necessarily mean that Maya doesn't have celiac--I am aware that many cases of celiac are symptom-free, but is this diagnosis ever uncertain? Are there any other conditions that might cause some villi to flatten in the intestine besides celiac? It just seems to me that the way my daughter's problems have manifested themselves is not consistent with celiac and never has been, and there's still something wrong with her. I'm not panicked about it; it doesn't appear life-threatening, but it is unpleasant for her when these episodes arise, and I do not like the idea of having her on what might be an unnecessarily restrictive diet while her real problem is undiagnosed and untreated.
I would appreciate any advice and guidance I could get from people who know more about this than I do.