I guess it's been a pretty quiet few days around our house. We had an uneventful weekend--probably too uneventful, as I hate wasting nice weather at this stage--but at least the kid stuff was also relatively uneventful. There were moments where things actually felt functional. A couple times I caught Jacob actively being nice to Carter, which is a major rarity. Like, he shared with him. WHAT?! I made sure to compliment him on it, as it was so nice to see. The other night he told me he likes Carter, which I still find a bit doubtful given continued iffy behavior toward him, but perhaps that single moment can grow to more. Or maybe he was just saying it for some sort of manipulative purpose, but I can hope.
Late last Thursday night I checked my email before bed and the portal on my PCP's website had an update. Sure enough, it was the lab report from my endoscopy. I read through it and my heart sank when I saw one reading that was slightly above normal and could indicate Celiac Disease. That reading was of the intraepithelial lymphocytes, which indicates some inflammation. It wasn't super high, though. I've seen the Celiac cutoff anywhere from 20-30 in the massive amount of Googling, and my reading was a 29. However, there was no damage to the villi, which is the main telltale sign of Celiac Disease. That's not to say that it couldn't be coming, that it's just not at that stage yet. Yet my bloodwork prior to this was a massive negative (2.8 where the cutoff was 20 or above), so it's not quite clear how those two things co-exist. As I've said, I've done an embarrassing amount of Googling since I got those results, and I came up with a long list of questions for my follow-up with the GI doctor, which I lucked out in getting an appointment yesterday thanks to a cancellation.
My mind and body have been making me a little nuts since the results came in, as I've been scrutinizing everything I've eaten and how I feel after. I'm hypersensitive to every little twinge, and I overanalyze everything. I honestly feel like I did after Jacob got his initial bloodwork but before his biopsy, when he had to keep eating gluten to keep the results valid. I felt guilty every single time I fed him gluten. I knew it was probably awful for him, I knew it would probably hurt him, but at that point we weren't allowed to put him on the diet so I just lived in guilt for a month. It's hard to believe, by the way, that we hit the three-year anniversary the other day of the phone call we got while at Disney, the one that changed our lives forever. And now three years later, against all odds, I'm dealing with this. And yet, I have minimal to no symptoms outside of the lymphocytes and the reflux, which could honestly each have other causes. There aren't a lot of other causes for the lymphocytes, but I did see some literature that indicates that proton pump inhibitors could increase the counts, and I do take one of those. Whether that's enough to do that on its own, I don't know. I do find it odd that I've had some form of reflux symptoms for at least two years, if not more, and if that's supposed to be caused by Celiac, how would I not already have damage? Jacob had stomach aches for six months and had damage, but maybe he had other less obvious symptoms before that? It's very confusing.
My visit with the doctor didn't really clear anything up, but it made me feel a little better. She confirmed that she can't make a Celiac diagnosis without damage to the villi. But there is still inflammation there, which we need to figure out. It can be caused by a few different things, the most ideal of which is an overgrowth of bacteria. It sounded like she couldn't really link the reflux to anything at this point, so I'll just have to deal with that for now, which is fine.
But now I'm in line for a slew of additional testing. One will test for the bacteria overgrowth. Another round of blood tests will check all of the Celiac testing I already had done, along with a few others that aren't normally done anymore because the other test usually tells the whole story. However, one of my levels was a little low, which can impact the main test result. Technically my level was not low enough to impact the results, but it was still enough of a blip that it's worth retesting and adding a few more. Beyond that, we're also going to do genetic testing. If my test shows up negative, it's a 99% chance I won't get Celiac. If it's positive, it's not a sure thing I will, but it's a higher likelihood. But, given Jacob's diagnosis, I'd almost have to think mine is positive. It'll take a while to get these going and get the results, so we're status quo for now.
Of course, like I said, I've been scrutinizing my body since, and of course I worry when I've eaten gluten and feel something odd. But is just gas? Is it just the inflammation causing some trouble? Is it all in my head because I'm stressed out and nervous? Or am I on the path to Celiac Disease after all? And if that's not enough, now I'm wondering a bit about Carter's bloodwork that he had done for Celiac Disease, and I'm wondering if his is reflecting the full story. He's not actively complaining about his stomach at this point, but when I ask him he often says it's still yucky. So who knows what's up there. We still have an appointment for him next week, though I worry because they really wanted me to keep a food diary and I haven't...only because there seemed to be no rhyme or reason to it bothering him.
On the bright side, the doctor was very supportive of my idea to get chiropractic work and/or acupuncture to work on both my taste/smell issues and the reflux. I sort of doubt it will work, but it's worth a try. And allergy shots are up next, once we get past the worst of allergy season and I'm not afraid to go off allergy medicine to get the one last test I need (for the one thing I'm not allergic to)before starting shots. Hopefully that can improve some issues, too. I guess you could say that I'm on a mission to fix all the things right now. I suppose I was waiting for the kids' issues to lighten up, but that may never happen, so I need to start taking care of myself.
On top of that, Craig is heading to my GI doctor on Friday to follow up after his little ER visit a couple weeks ago. I'm guessing an endoscopy is in his future, too. Hopefully she can figure out what's up with him easier than she has with me. We're falling apart, apparently.
So that's where things stand. Fun stuff, huh? Hopefully we'll get back to regularly scheduled parenting sometime soon.