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Is it IBS with no pain?


LaurenR24

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Hi all - So very, very glad to have found this forum.  A quick intro which I'll combine with a question:  is it possible to have IBS without pain?

I'm 59, have been having periodic diarrhea for about 12 years now.  Didn't take it seriously as it didn't interfere much with life at the time.  Until last Fall.

The diarrhea was horrendous, but worse was/is the disabling, incapacitating, crippling fatigue.

History:

  • Gallbladder removal in November 2022 due to pain in my back and nausea.  Recovery quite challenging - I just felt sick.  Never really have felt 100% since, although I've had times that are better than others.  Pain and nausea are now gone after the gallbladder removal.
  • November 2023 - diarrhea out of control and fatigue at its worst.  Tested negative for Celiac - both serum blood testing and Colonoscopy/EGD showed no signs of it.
  • Went gluten free (after lab tests) and found improvement in diarrhea and energy, but still am quite fatigued and chronically tired.  Started low FODMAP diet.
  • Started seeing a registered dietitian I found on the Monash Low FODMAP app who suggested additional stool testing.   She has started me on digestive aids and several different probiotics, and started me on the tricky food reintroduction phase.  (Not fun....much easier just to not eat.....)
  • Findings from the recent stool test:
    • Elastase 63.  (Normal >200)  PCP ordered a lipase level that was normal.  So now having a CT scan next week to make sure there's nothing obviously wrong with my pancreas.
    • Anti-Giadina IgA slightly elevated at 193 (normal <175); I've been gluten free since November with the exception of a couple of potential instances of contaminated food.
    • High Secretory IgA (but still within normal)

So....given that PAIN seems to be quite a predominant symptom of nearly everyone with IBS and I DON'T have it, is it even remotely possible that IBS is the correct diagnosis for me?  My gastroenterologist didn't give me a label, just told me it wasn't Celiac, Crohn's or IBD.   I plan to find another GI specialist at a University - I'm close to Johns Hopkins and University of Pennsylvania.  I just don't even know what to look for as far as area of specialty. 

At this point, I'm just terribly confused and feel like something is really seriously wrong with my body.  If it was IBS, why don't I have the pain?  If it's something else, I don't know what further testing to ask for!

Feedback and opinions welcomed, and hoping to learn something more on this forum from all of you dealing with these awful digestive issues!!

Thanks so much,

Lauren

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Jeffrey Roberts

Dear LaurenR24,

I'm sorry to hear about the discomfort that you have experienced for so long.

It sounds like you have ruled out an organic cause with stool cultures. Has anyone suggested that you might not be handling your bile acid very well? This is called BAM (bile acid malabsorption). The fact that you don't have any abdominal pain might be a clue. An IBS diagnosis is made with the symptom of abdominal pain with diarrhea or constipation or both. BAM might not have any abdominal pain. You treat that with a bile acid sequestrant, namely the prescription drug cholestyramine. It will bind to the bile acid and reduce or eliminate the diarrhea.

It may be that you have a reduction in pancreatic enyzmes (ie: elastase) and perhaps that was the problem before the gallbladder was removed. It's not uncommon for those without a gallbladder to develop BAM. Perhaps you have both going on.

Doctors don't usually test for BAM. They start their patients on cholestyramine and see if they improve. If they do, that is the cause. Your family doctor could try that and see if things improve. I truly hope so.

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Thank you so much @Jeffrey Roberts.  I will look up BAM and see if that could be an added culprit.  After following several Facebook groups and this forum, IBS just doesn't seem to fit without the associated pain.  (Not that I'm complaining about being pain-free usually!!)

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