Update for my own condition tracking purposes…
My tooth pain is getting worse by the day.
I finally got an answer from Dr. Fresh Air’s office yesterday. Not his fault, just didn’t get the call back from his nurse after I called her. He had gotten the results from the colonoscopy but was still awaiting the pathology results on Monday, so the nurse was going to call me back when the doc got the pathology results, plus I gave her a question for the doc (is it ok to go ahead and take my vitamins while doing the gluten challenge? I’ve researched and can’t find the answer, so I defer to the one who went to school for such things since he’s not a giant pinkytoehead like Dr. Ego.). Anyway, she never called back. So I called again yesterday, because it’s been two weeks (only? seems like longer…) since the colonoscopy. Today they said the colonoscopy was normal (other than my inability to shut up under anaesthesia and my complete ability under same anaesthesia to offend the “I never said I was a liberal” nurse–they didn’t say that, I just remember that), fantastic news about the normalcy. Biopsies were normal, pathology normal. Hooray! Confirmation. Closer to celiac diagnosis.
The nurse who looked up my chart today told me that the doctor’s notes said that I should have an endoscopy in 3 months. That’s already scheduled, it’s why I’m so miserable.
The endoscopy is supposed to be in the June-teens, but if we are leaving Florida before the June-teens, I’m going to call Dr. Fresh Air and ask if he will please please pretty please do the biopsy in May instead, which will give us eight weeks on a gluten challenge, which is, eh, not as good as twelve weeks (and of course I mean good for flattening my villi and getting a good positive biopsy, not good for my health or mental stability), but still pretty decent. And considering the lack of motility in my roughly twenty-two feet of small intestine these days because i’ve been oh so good at eating the requisite arbitrary equivalent of four slices of bread every day (and more because I don’t want to fail my test and because oh my yippee, I can eat anything in the world right now with reckless abandon for the last time ever in my life! I’m embracing that even though it makes me feel like someone’s hitting me with a bus after every meal!), holy mildew around the inside of the toilet, Batman, eight weeks is probably plenty. If eight weeks isn’t enough for me, maybe Dr. Fresh Air, since he’s young and hip, will consider the young and hip procedure of letting me swallow a pill-sized camera so we can watch it travel the length of my digestive tract for eight hours. Of course, I’d probably talk throughout the eight hours (excruciating for the poor doctor, who is Indian and would probably be badgered for his mother’s or wife’s chicken tikka masala recipe for eight long hours) and tick off Linda the not-liberal nurse. Actually, I will request she not be involved in my future procedures at this particular hospital, lest I wake up to hostility and anger from nurses who do not understand that stating one’s political beliefs while under anaesthesia should be met with greater understanding than, say, choosing to get drunk and then stating the same political beliefs or yelling that the Jews are responsible for all the wars in the world.
WARNING: ASIDE! I get that it’s uncooth to discuss politics and religion at dinner without the kid gloves on or without everyone being happily on the same page and ok with discussing the sensitive issues, but in a colonoscopy under anaesthesia? How the heck am I supposed to control that? I chose to get all loose-lipped? I didn’t go on a drinking binge and then start spouting off what I think. Someone injected something in my veins under doctor’s orders, and I said, “Are y’all still going to take care of me, even though I’m an evil conservative?” I did not plan that. After that I started talking about how proud I am of Frank and his blog and how awesome he is, and I probably even quoted his stats to all in the surgery room. Poor hostile nurse. How offensive I was to her sensibilities. I still have more to say on this.
Anyway, the endoscopy is a different kind of procedure and isn’t done under the same kind of anaesthesia. Plus, there’s a tube down your throat, so you can’t talk. Happy doctors. Fine with me. Who knows, they probably have all my passwords and know the exact location of all of our guns after just one colonoscopy. I don’t know about the camera procedure, whether there is anaesthesia involved. I don’t care to experience that again.
What else. Did I mention my teeth? Wow, they hurt.
Oh yes. I’ve become addicted to Doritos. Fiery habanero, which are actually gluten-free, but they give me migraines, because even though the machines are twice-washed between batches, the same machines are used for the GF chips as are used for the non-GF chips at the Frito-Lay factory. And I think the only non-GF Doritos are the Nacho Cheese. I think all the other ones are listed as GF. But again, the cross-contamination is a problem for me. So I am chowing down until my endoscopy, after which I will quit them (for the most part).
Apparently, I can’t absorb anything except sugar, which I convert immediately to thigh fat.
TMI Alert: Papaya enzymes are THE BOMB for anyone with intestinal issues. I chew two of the “now” brand after every meal. Solid poo! WOW! Almost as amazing as those tomatoes-in-a-bag I keep seeing commercials for on Red Eye. It’s amazing. Since the colonoscopy, I’ve been alternating between… um… motility issues and my normal problems (un-solid poo), and after waiting to hear whether I can take my vitamins (they’ll call me Monday), I finally gave up and chewed two Thurs night with dinner, then two yesterday with lunch. Then two last night. And last night, my first solid poo since my colonoscopy. It’s that quick. A certain friend of mine with a different bowel disease (she knows who she is) put me on to the papaya enzymes, and the difference with them is amazing.
Next, I just might break down and try the other recent suggestion I got from my IBD friend. Maybe I’ll tell you about it someday. You probably are better off for not knowing. But we are all about the natural remedies. We hate bad side effects.
Oh, but I do need meds for now, especially for the nerve pain and the epilepsy. And the Keppra is good. It’s very good for the seizures. It started working so much better than the Topamax almost immediately, and so far no bad side effects. I was napping like mad at first, but that only lasted a couple of weeks.
The fatigue is huge. Not sleepy, but body is tired.
Nerve pain is bad most days.
I’m trying to get bladder infections every couple of weeks. That was common before I went GF, just in the months leading up to going GF. After I went GF, no more of that. Last night, my bladder was screaming so badly that I couldn’t get to sleep until around 4 a.m.
Maybe some of it will improve when I get the answer about the vitamins. I can load up on the B vitamins and vitamin A for the tooth pain and the bladder issues. I took a vitamin A and drank three bottles of water last night for my bladder, and I have no pain today.
And that’s the health update. Yes, my body hates gluten.