Saturday, September 15, 2012

First Blog Series

Three events occurred around the same time, and that’s why I am starting my first blog series. There’s too much to write about this topic in one post, so I will break it down and organize it into parts. Here’s the back story on what led to this.

Dennis and I have not given very many directions on how to feed our children because we haven’t really wanted other people to try. We also haven’t offered a ton of explanation as to why we feed them the way we do short of Celiac diagnosis. It’s complicated right now, it took us over a year to get as close to right as we are now, and we’re still learning. However, my sister brought up a good point back in July. As we were all eating and discussing why Wren could have this and not that, Amy said something profound: “What if you and Dennis die at the same time?”

This was the first major event, and here’s why. My sister does not talk about death, even though she is in the medical field and sometimes sees people die(maybe because of that). She actually gets pretty upset if anyone else tries to talk about it even in practical, planning terms. I knew if she was bringing up the d-word it was important enough to think about, and upon reflection I realized she was right. I just didn’t do anything about it.

Not long after this, I had a dream, and not of peace and harmony. I actually had a nightmare where Dennis and I were about to meet our demise at the same time. As we clutched each other and waited for the end, we were weeping, not because we were scared to die, not because this was not going to be a peaceful death. We were weeping because we had not left directions for how our children should be fed, and we were petrified. Sign number two.

Finally, the third event occurred when Dennis met some really nice people the other day and was explaining to them that our family has Celiac. They chimed in with, “Yeah, our kid’s friend has that. When she comes to the house all we can feed her is Cheetos.” Dennis relayed this story to me and we sat on our couch horrified.

Dennis: “Do Cheetos have gluten?”

Me: “Who cares? Why would you feed a person with a compromised gut a food that is a color nature could not have possibly created? How is that a good idea?”

Turns out, my preliminary searches show Cheetos to be gluten-free but not particularly made in a gluten-free facility, which is a problem (you’ll know why after this series).

All that to say this: I don’t seem to take cues well the first time. I think God was known to show Peter things three times before they sunk in, so maybe I’m sort of like that, just not as awesome of a disciple. And we need to leave some directions for our kids because even people with Celiac do not choose to eat the same way. Hopefully they choose to not eat gluten, but even within the range of gluten-free foods, there are a ton of choices.

This post and series may interest no one but family or people who could end up caring for my kids in the event of an emergency. Still, I’m going to share some information and assure you that a file with updated medical records will be available for easy access to what you need if something does happen to us. Know that we are on the more extreme side of crazy when it comes to food. We don’t take chances, and the guts in our house have proven they will not tolerate a diet of artificially colored food (that’s code for a snowball better fly straight through hell before anyone in their right mind feeds my kids a Cheeto).

So, without further ado, here are a couple of basics to start:

 Wren has Celiac. We’ll leave the test results for you.

 Sammy has not been tested for Celiac, but we act as if he has been given a positive result. That includes making sure he does not get cross-contaminated, just like Wren. The reasons for this are he showed early signs of Celiac as an infant that cleared up on a gluten-free diet, he is allergic to dairy, and no one in our house eats gluten anyway. I’m not going to focus on feeding healthy food to the family except for Sam, and that’s what I feel we’d be doing if he was on a diet full of gluten. If he ever wants to be tested, he will probably have to go through a gluten challenge which means three to four weeks of putting gluten in his system so the test will be accurate. Even if he does not have Celiac, weeks of exposure to an inflammatory food that he has never ingested except via breast milk before we knew about Celiac will make him sick. I will not be the one who makes the decision to put him through that; it will have to be his choice when he’s old enough to make it, and I’ll support him if/when he decides to. I’m the one who got to sign the papers that allowed him to get a spinal tap at 12 days old, so it’s kind of nice to wash my hands of causing my child anymore intentional pain. There are rumors of a test that does not require gluten in the system, but I can’t confirm the accuracy of it right now. Please make sure you follow a gluten-free diet for Sammy as well as Wren, who has obviously been confirmed to have Celiac. If Sammy does for sure have Celiac, and most doctors we’ve seen believe he does, then allowing him gluten or to be cross-contaminated will cause long term problems to his health that can lead to early death.

Kind of a heavy start. I promise Dennis and I are not planning on exiting the planet at the same time, but having a contingency plan never hurts. I’ll try to post something related to this series weekly or more, so either read all this and memorize it, or just book mark the page if you might end up in possession of our children.

And by all means if I’ve made you hungry for a Cheeto, go eat one. No judgment here.

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