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Apr 20

Celiac’s Disease

I was writing a lovely little post about April vacation.  We did a little walking, a little hiking, a little cooking.  A little hanging out, a little rearranging.  A little homeschooling, because it’s not vacation for Sam, and then it all came screaming to a halt on Wednesday afternoon.

A few weeks ago, Jessie had had some bloodwork done.  It was routine, almost.  She’d had some abdominal pain, nothing huge, but it was there, and her pediatrician ordered bloodwork.  I was positive it was nothing.  Which is why I was so shocked when she came back testing positive for wheat, egg white and dairy.  I had just barely  managed to adjust to that (we hadn’t seen the allergist yet, don’t panic, don’t change anything yet) and the next day, her pediatrician told me that her celiac panel came back positive too.

It’s been a whirlwind of doctor’s visits and problems and issues lately, and I feel as though I spend a large portion of my day on the phone holding for a nurse.

I was in the office, scheduling appointments for Sam as a follow up for his physical.  He’s mostly healthy, but has acid reflux and he did have a pretty significant traumatic brain injury a few years ago.  Then Jessie had the allergies, and somewhere in the middle of it, Julie sprained her elbow.

Anyway – the allergist.  So the allergist confirmed that her numbers were barely outside of the normal range, and nothing to worry about.  Her gastroenterologist was not as reassuring, and wanted to send her in for an endoscopy.  So we did that.  But I was pretty sure it was nothing.  The allergies were nothing.  And the likelihood of her having celiac was less that one percent, we had no family history of it.

But on Wednesday afternoon, while we were at the dog park, in a misguided and mostly unsuccessful attempt to socialize our poor puppy, we got the call.   Positive for celiac.

Suddenly, I’m in this new place, where we have to revamp everything about her diet, figure out how to do it in a way that makes her feel empowered and successful, and still manage Sam’s overwhelming food issues, make sure Julianna (who is just like her sister, down to the vague stomach complaints, the body aches, the fatigue) gets tested as well.  I’m on the phone for hours, talking to this doctor or that one, or more likely the poor nurses and admins (many of whom are now on a first name basis with me).

Jessie is so positive and handling it so well.  On the day she was diagnosed, she told me that there were kids that day who got a cancer diagnosis, so she wasn’t going to complain about celiacs (and on the 30th anniversary of Bridgett’s death, I know exactly what that means).  I think on some level she’s relieved that there’s an answer for all of the problems she’s had this year.   Plus her best friend has it, so it’s not as scary and unknown for her.

But it’s still scary and unknown for me.  For Julie, who keeps asking if Jessie can eat mayonnaise, or chips, or soda.  It’s scary for Sam, who’s already so freaked out about food and not knowing how her diagnosis is going to impact him.  I’m online all the time, with gluten free cookbooks and memoirs all over the place.  Marc’s going gluten free as well, and I love him so much for that.  I can’t make the house gluten free, at least not yet.  We can work towards it, but with Sam and Julie… it’s going to be a process.

We’ll figure this out.  She’s fifteen, old enough to know what she’s doing, to advocate for herself.  Young enough so that Marc and I can still guide her and help her and teach her what she needs.  But wow – this is not the April vacation I had planned on at all.

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