We went today to McMaster Children's hospital to meet with a gastroenterologist about Caden's ongoing gluten issues. After years of being told that I had to be imagining that his symptoms were related to food, it was really nice to meet a specialist who said everything I said made perfect sense. *phew*
His take? Caden is not a true celiac but instead he has a non-IgE-mediated allergy. What does this mean? Well he's having an "allergic" reaction but instead of the immunoglobulin E (IgE) reaction (anaphylaxis, hives, swelling) he is having an immunoglobulin G (IgG) reaction - stomach problems, exzema, and behavioural changes being the big clues. Apparently allergists in North America don't like to diagnose IgG allergies and it's a term used here only by gastroenterologists. Apparently in Europe it is a very accepted diagnosis by allergists and they have a significant body of evidence about this.
About half of kids with IgG reactions outgrow them by their first birthday and about 95% by age 4. This explains how he stopped reacting to corn, soy, dairy, and lentils with time. Given that we're down to the last 5%... he might outgrow it, he might not.
How do we move forward from here? We trial him once a year and if by chance, someday, it doesn't make him sick, we follow up after 3-6 months of daily consumption. If, at that time, he is feeling unwell or is anemic we will pursue the celiac biopsy (scope), if he's not, he's outgrown it and life is good.
And thus we begin the last chapter of 5 years of medical mystery and misdirection. I can't tell you how good it feels to be told that it's not all in my head.
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