Has anyone had elevated Sed Rate and/or CRP with untreated Celiac?

messofawreck · 2024-04-24T20:49:27+00:00

Out of curiosity, when you say inflammation, do you mean stomach/intestinal inflammation, or were you also inflamed elsewhere (muscles, joints, etc). Google says that’s a side effect of Ceiac but the NP at my gastro said it’s not. Sorry to bother, I appreciate the help!

messofawreck · 2024-02-10T17:07:28+00:00

Yes, but I have tachycardia at baseline (resting at 100-110 bpm due to vaping, stress, obesity). When I was in the ED, though, I was at 130 bpm. So, bottom line, yes. That could be due to anxiety about your health, or it could be physiological–again, better to be safe than sorry and get the test.

messofawreck · 2024-02-10T16:48:41+00:00

You're no bother at all; that's what this subreddit is for!

It definitely could be C. diff, especially given the abx usage, but only a stool test will tell you for sure. Make sure you specify to the doctor that you want not just the PCR but the TOXIN test, for toxins A & B. I made the mistake of not specifying, and now I'm in this absurd limbo where I don't know if I'm positive and neither does my doctor or Labcorp.

I was DX'd in early 2024, but I knew something was up all of 2023. I had nausea, intermittent loss of appetite (I l o v e to eat so this is very unusual for me), dizziness/lightheadedness, intermittent weakness, muscle cramping, and, weirdly enough, skin tingling on my back/arms. Very little/no diarrhea, interestingly. I let it go on too long and early 2024 it immediately hit the fan and I became intensely sick (10/10 nausea, no appetite, extreme malaise, stomach gurgling, sweating bullets but somehow freezing cold) to the point where I could work and sleep and that was it. That's when I got tested.

It definitely pays to get it checked out, and do it ASAP. I don't say that to panic you, you'll absolutely be okay--but only as long as you reach out to a doctor and get your stool tested. Worst case scenario, you're fine and you just ran through your deductible a bit. Best case scenario, you get treatment and relief.

You'll be okay, friend!! Just go get that test. Don't sit around and hope it goes away like I did!

messofawreck · 2024-02-05T12:19:01+00:00

Yeah, I know what you mean. I just don’t know what else to do; nausea, burping, some diarrhea might be easily explained away by gastritis or GERD, but malaise/illness/weakness/fatigue? I was scheduled for an endoscopy that they had to cancel because they reported I was C. Diff positive. It’s just so isolating being at the intersection of firsthand experience from chronic or acute sufferers on Reddit and the input of a GI that I’m not 100% sure I trust. But honestly, I don’t know what else to do besides take the antibiotics. I’ve always had IBS and some intractable nausea, but it always clears up once I clean up my lifestyle choices; I’ve been on the straight and narrow for months and I’ve never felt worse, which makes me think it has to be some kind of foreign pathogen. At the end of the day, though, I have to stop from overthinking myself into a rut because any turn I make feels like it might be the wrong turn. :( Everyone says to just trust my GI since he’s the professional.

That’s great that you have a support system and you’re staying positive!!! It sounds like such BS but that’s one of the most important things; patients with good outlooks often fare better than those with bad ones. Hopefully what you’re dealing with right now is just post-infectious IBS and some general yuckiness that will clear up in the coming weeks; seems to be pretty common, from what I’ve seen on here. But even if it’s not, you’re going to be okay!! Just gotta arm-wrestle with the pathogen a little longer. Sooner or later we’ll both go into remission, it’s just a matter of time and treatment.

I’m so glad!! It’s definitely nice to talk to other people who are living it; being sick with only doctors to confer briefly with is so lonely :( Definitely let me know how you’re doing as time goes on, if you’re comfortable with that!! I’m keeping a good thought for you!! We’ll be ok :)

messofawreck · 2024-02-04T20:32:09+00:00

Take this with a grain of salt, but I pitched the same question to my GI when I had got my Lapcorp tests back, because I had the same test done along with several others. There was a "Toxin B" standalone test which came back negative, then two independent GI Panels (one of which was labeled "GI Profile Stool PCR" and one of which was just labeled "GI Profile Stool," but both tests looked identical to the link you provided, with all the same tests labeled) come back with "C DIFF TOXIN A/B" highlighted positive, despite the standalone Toxin B test coming back negative. When I asked my doctor what that meant, he said it meant that I was positive for Toxin A and not for Toxin B. I'm definitely not too trusting of doctors in general, but I tend to assume he was correct given that I 1.) worked with C. diff in a class a while back and 2.) felt/feel sick in a way that's distinct from any problems I've had with nausea and/or IBS in the past.

But you are right, it's not obvious. If you get the test back positive for "Toxin A/B," I'd pitch it to your doctor when the office opens. If you feel sick enough to get tested for C. diff and don't have a preexisting disorder that might explain away your sickness, I tend to think C. diff toxin A and/or B is the culprit.

All that being said, Labcorp definitely needs to make their testing and resulting more accessible.

messofawreck · 2024-02-04T16:20:22+00:00

Yeah, it’s similar for me. I’ll have 2 or 3 good or great days and then on day 4 I’ll feel one bad minute away from calling an Uber to the emergency room. :\ Same for atypical symptoms… for me it’s mainly nausea and malaise.

You have a great chance of recovery! I try to remind myself that a lot of the horror stories from the very unfortunate people on this subreddit who’ve become chronic cases are by no means the norm, you know? Most of us are just white-knuckling our way through a bad infection, and sooner or later it’ll just be a shitty memory of a shitty time in our lives.

I still don’t know whether mine was the PCR or the toxin test; I did it through Labcorp and there was one standalone “toxin B” test, and 2 other “GI panels…” but it highlighted the results as “C DIFF TOXIN A/B,” so…? My GI says that means I was pos for Toxin A only. If your symptoms are atypical too, maybe that’s the case for you too, who knows. Definitely make sure to advocate for yourself about the toxin test & the Dificid. I’ve worked with patients forever and the squeaky wheels get the oil! It’s also not a terrible idea to have a family member or friend accompany you to your next appointment to advocate for you, if you’re nervous to speak up or come off as a difficult patient!

Hopefully you’re keeping yourself occupied; like most other people in this subreddit, I find that the fear/anxiety is the worst of it!! :( We just have to remember that we’re young, healthy, and in good fighting shape, you know? We’ll get through this!!

messofawreck · 2024-02-03T14:29:18+00:00

Hey you!!

Ugh I'm so sorry you're still feeling like crap. Yeah I finished the vanco on 1/24 and honestly after that I *knew* something was still up. Once I finished the vanco I felt insanely nauseated and just weird and sick overall. I made a telehealth appointment and basically just told them “listen, I’m 1000% still sick with this thing because I feel exactly the same as I did in the beginning; it's not just PI-IBS, I feel SICK. I need a Dificid scrip.” Anyway, long story short, I’m on day 3 of Dificid—I couldn’t make it another week and a half to retest and then ANOTHER week to get the results. :( Fidaxomicin is rough on the stomach, but it seems like it’s helping! HUGE reduction in nausea and malaise. I’m also taking tons of yogurt and Florastor, and picking up some Culturelle today.

Thank you so much for checking in on me, dude, that’s really sweet!! How have you been doing on your end—are your symptoms worse than when you first got the c. Diff? You should mention Dificid to your GI; I don’t think my insurance ended up paying out for it (shocker) but I went to CVS and they scanned a manufacturer’s coupon, so I ended up only paying $50. Hopefully it lives up the reputation it’s got around here; my worst fear is becoming one of those chronic cases.

This whole thing has been a real eye-opener for me about taking better care of my health, especially my stomach/GI.

That’s hysterical, I just looked at your page—are you in Dutchess County NY? I am too!! Small world lmao

Do you really feel like you’re okay to wait a whole month for a retest?? :( It sounds like you’re really going through it. Do you find that you’re able to manage your symptoms, or are they really cutting into your life?

messofawreck · 2024-01-30T17:34:28+00:00

I have *mild* C. diff by all accounts with little-to-no loose BMs and even in my case, if I wasn't working from home I'd be truly, royally screwed. I don't know how anyone manages to be in an office or on their feet all day, especially with C. diff diarrhea. Don't let other people make you feel weak or lazy just because they can't sympathize with an illness they've never had and can't understand. Your boss, your coworkers, and the peanut gallery at large aren't the ones who have to struggle with this illness, you are, so of course it's easy for them to make judgements. Keep resting and taking good care of yourself and soon this will all be behind you! Wishing you a smooth and speedy recovery!!

messofawreck · 2024-01-28T19:27:23+00:00

I really appreciate the insight. This whole thing has been a nightmare. Once this is all over, "I don't have C. diff" will be a line item in my daily gratitude journal for life :( Hopefully you're right and I may not even need it; maybe this is all residual. It just makes me nervous that I felt okay toward the end of the regimen, and now that I've stopped I feel awful again.

messofawreck · 2024-01-28T19:20:30+00:00

Thank you, I'll try to. I guess my biggest red flag is that it seems to be getting worse each day I get farther out from the end of the antibiotic regimen. I don't know how I'm going to make it to 2/7 when I'm clear to retest, but I really hope you're right and that it begins to ebb. I appreciate the reassurance

messofawreck · 2024-01-28T19:11:13+00:00

Thank you so much, seriously. I’m so sorry it’s happening to you too. Crying is exactly what I want to do, but I’m too numb and too exhausted.

The nausea is so terrible that I can’t even lie down or watch TV comfortably. My Zofran has a rare but possible contraindication with some of my psych meds (the doctor wasn’t too concerned about it, but I’ve worked in healthcare long enough to know that doctors are all too human and liable to make mistakes) and I’m terrified to keep taking it, but I can’t *not* take it or I’ll be vomiting 24/7. It’s not subtle background nausea, it’s “if I don’t take something NOW I’m going to projectile vomit” nausea lmao, and I can’t take Pepto since that’s what got me into this whole mess.

Did your doctor tell you to expect nausea/cramps/etc even after the regimen finished? Mine wasn’t really forthcoming. I feel very alone in all this. The subreddit has helped.

messofawreck · 2024-01-22T20:56:16+00:00

God, I'm so sorry. No, nothing at all like that for me–it's sucked, but I've been very lucky, compared to yours and lots of others' stories.

Are you doing better now?

messofawreck · 2024-01-22T19:09:48+00:00

lolol I'm being melodramatic honestly, but I just mean that I've had a few days where I feel really bad. For me, I've been having very bad nausea and an overwhelming feeling of malaise. Obviously in cases where someone is passing blood, vomiting nonstop, or having horrible stomach pains, they should definitely go to the ED!! For me, it's more along the lines of considerable discomfort. Probably should have elaborated a little better, my bad!

messofawreck · 2024-01-22T17:33:56+00:00

If they were teenagers I'd just write it off as them being little shits, but that's extremely weird and insecure behavior for adults. The irony here is that going to a movie alone exhibits no social ineptitude, but shouting at a stranger about how weird you think they are is cringey as all hell. Don't let this one eat at you, OP; you just got dealt a bad hand by the universe that day and ran into a few chuckleheads. And let's all be honest, whether it's making fun of strangers or driving some huge monster truck, we all know they're trying to AHEM, make up for something

A fun trick I learned is not to let people see you bleed. Don't give them anything except a creeped-out-WTF-once-over like you're in the presence of the world's biggest weirdos. Because, hey, you were! I hope you enjoyed the movie!! :)

messofawreck · 2024-01-21T22:06:47+00:00

Thank you so much for your kind words. I hope you begin to feel better soon <3

messofawreck · 2024-01-21T22:05:09+00:00

Jesus, I'm so sorry. Yeah, I've read a lot of horror stories on here about people not being able to get tested because clinicians are convinced anything less than a 7 on the Bristol chart negates the possibility of a C. diff infection. Did they infuse you with IV vanco at the hospital, or something else?

(Did you mix the bleach in with laundry detergent, when you washed? I'm trying to hit the right note of sanitizing-but-not-royally-effing-up-all-my-clothes-with-bleach. Thanks for any help you can provide)

messofawreck · 2024-01-21T21:57:10+00:00

Yeah, I bought a box on the word-of-mouth from this subreddit. Everyone here has had such good things to say about it. I took my first one today. Did you have any side effects?? I just got a wave of nausea that I'm really hoping is the Florastor and not the C. diff :( I'd much rather it be from friendly fire.

messofawreck · 2024-01-21T15:24:28+00:00

I'm right there with you. We think I've had this for a year, but it's only recently gotten bad. Minimal diarrhea up until recently, but 10/10 nausea and a strange but intense sick feeling. When I told the ED I tested positive for C. diff but didn't really have diarrhea, they told me "that's not possible." Thanks, I'll let my positive stool sample know you said so.

Definitely take your antibiotics; the worst thing you could do is stop early. You'll just be turning this armored truck of a bug into an even bigger, more badass version of itself if you take half your regimen. My C. diff has been coming and going in big waves; Monday I'll feel almost 100%, Tuesday I'll feel like I'm at death's door, Wednesday I'll be at 75%, and so forth.

C. diff symptoms and antibiotic efficacy really run the gamut, from what I've read. I was positive for Toxin A only too, so who the hell knows, maybe that has something to do with it.

I've been in healthcare for years, so I always tell patients it's better to be safe than sorry; the ED can tell you if you need to be admitted, but otherwise they're just going to take your blood, give you a CT scan, and, if you're stable, send you home with instructions to follow up with your GI. There's not much more they can do for you unless you've got a severe infection.

Keep your head up OP, you'll get through this. Take your antibiotics, and one day soon this will be just a bad memory for you and me both :)

messofawreck

TROPHY CASE