When I was diagnosed with Celiac Sprue in May of 09, I practically begged my doctor to not order me an endoscopy. It sounded pretty miserable, and procedures are expensive. So, he let it slide. I have been paranoid since then about being strictly gluten-free, but am still having gastrointestinal issues, for which I am seeing a gastroenterologist. He decided, after a gastric emptying scan and gallbladder scan (slow gastric emptying, normal gallbladder), to order me an endoscopy. I got it done two days later. Right after the procedure, he came and talked to me and told me that I still had quite a bit of inflammation. One of the nurses who’d been in on the procedure told me that it looked like I had villi missing, which means that there is gluten still being ingested. When I left, I was pretty angry. After how paranoid I’d been, I still had damage?? After a year???
After the actual biopsy came back, I went to my follow-up, and he told me “no Celiac.” ?!?!?! He said that that’s why they always wait for the actual biopsy before making a diagnosis. He says my villi look fine and healthy. Since my bloodwork was so positive, though, he told me that I have latent Celiac. Yes, it is a real thing. My mom was there with me and mentioned that I had been strictly gluten-free for a year, so wouldn’t that mess with the results? He said that no, it didn’t matter. With the latent Celiac diagnosis, though, he just recommended that I stay on a gluten-free diet, but that I should feel okay about “indulging” myself on occasion if I would like. ?!?!?!?!
Here’s the thing, though: It’s supposed to matter. On one of the large Celiac forums, there’s often discussion about how a person needs to eat gluten for three months prior to an endoscopy to get the correct result. Then again, they’re not doctors, and my gastroenterologist specializes in Celiac. Then I talked to my primary care doctor about it, and he says that the endoscopy didn’t go down far enough, so he wasn’t looking at the part where there’s damage.
It’s so frustrating, but I suppose the best I can really say is, “Isn’t it interesting that I have a condition that still needs so much research?” There are many discoveries being made in this area, so things are far from settled. It’s also probably tough to track, because Celiac and ensuing sensitivity can vary so much from person to person.
Having Celiac isn’t just a physical or lifestyle change. It’s rather psychological too, with definite social consequences. It’s tough trying to explain it to people. It’s tough going to potlucks and not having people understand that I really am okay just being there to spend time with people. (I usually eat beforehand to avoid glutenous foods and cross-contact issues.) It can be challenging to help people understand that, for me, this isn’t some fad diet that I’ll eventually give up on. No, I can’t just cheat a little (though according to my gastro, I can….?!?!?!). What if my kids have Celiac? They’ll be eating gluten-free at home anyway — the difference will just be being able to send them to Primary or school with the ability to eat whatever they want.
So, while this has been confusing and frustrating, I will continue to be just as paranoid as I was before about what goes into my mouth. Even if I do have latent Celiac, it means that I will have it full-blown at some point in my life, and unless I’m getting an endoscopy every year (which I’d rather not), I won’t have any idea when it starts, and then I’ll be damaging myself. I will also advise people to just get the endoscopy done at the beginning. I wish I would have.
In related news, this is not over. I’m still having some gastrointestinal issues. I have yet another gastroenterologist appointment Thursday, so maybe I’ll get some more ideas then.
He did put on me on an antibiotic, thinking I had some bacteria in my gut refusing to leave. I did seem to respond to it, but it’s still not over yet.
Anyone know anything about Candida?