I know that I've mentioned in the past that we are a food allergy family. Dan has a serious allergy to tree nuts (not to mention various other things like blue cheese), and his mom has celiac disease. Because of the genetic component, Dan is supposed to be tested for celiac annually, but so far has always tested negative. It was originally suggested to us by someone (I can't remember who) that Mariam also be tested annually, but we've in the past we've met resistance from our pediatricians when we asked about testing. The prevailing opinion of her doctors so far has been that she doesn't have any severe symptoms and she isn't a first-degree relative of someone who has celiac.
When we switched pediatricians about this time last year (for a number of reasons) the new doctor's office noticed, as we have, that Mariam is really small for her age. Her height is probably just a bit below average, but her weight is considerably lower than that. In the last two and a half years, she's gained about five pounds total and at almost eight years old, is just above forty pounds. The new doctor suggested that if she was still tiny in a year's time, we could go ahead and do the celiac test. And, last week we did.
Here's where it gets a little complicated. I won't bore you all with technical details and test acronyms, but essentially, there are about four different blood tests which are commonly used in a particular order in the diagnosis of celiac. That is, if I have any understanding of what's going on here, which I might very well not. But Dan does, so that helps. Mariam was supposed to be given two of the four tests, but for some reason, results only came back on one. On that test, a value of four or less is negative for celiac, a value of nine or above is positive. Mariam's result was an 8.4, or what the Mayo Clinic (who ran the test) calls a "weak positive."
What does this mean? Well, that's the part that comes next. Mariam's is basically a positive result, but the fact that the result from the other test never appeared isn't super helpful when it comes to making a solid diagnosis. Which means that more tests are needed. The nurse practitioner who called with the results wants to talk to a pediatric gastroenterologist before ordering the next set of tests, which is slightly maddening because they are a very clear next step as far as anyone else can tell. Plus, she works part time, so getting in touch with a specialist and then getting tests ordered if she gets the okay will take until at least the middle of next week, if not longer. Blood samples are sent to Mayo for testing, which takes an additional week. So, right now, there isn't any real certainty. But in all likelihood, Mariam has celiac disease.
I'm pushing for us to have any necessary follow up appointments or additional testing done as soon as possible. Knowing that we are having a new baby in about six weeks makes me especially motivated; I don't want to be in the beginning stages of a major family diet shift just as we're welcoming a newborn. A bit much all at once, you know? But it could still be a number of weeks before we have concrete answers to this little puzzle. And, we can't make any dietary changes for Mariam until after the next round of tests are complete or we risk false negative results which could further confuse the situation. I think it goes without saying that further confusion is not really an appealing option.
So, we wait. I won't say anything about waiting patiently. Just waiting. And while we do, I could definitely use help finding resources related to going gluten-free. I'm more than aware that the internet is overflowing with potential sources for information on gluten-free living. But, there is more there than I feel like I even want to attempt navigating on my own right now. I would love to have some help knowing where to begin and what resources are worthwhile. I'm especially concerned with the fact that we will need to have our household be both gluten-free and nut-free since so many gluten-free recipes (especially baking) seem to include nuts. If you have a favorite gluten-free cookbook, blog, website or magazine recommendation, I'd love to know about it. Especially anything that covers the basics of this whole business.
I think what I am trying to say here is this: help?!?
