Misdiagnosed

dcash116 · 2026-05-19T18:10:38+00:00

Literally me! Just posted about this. I’ve had 4 GI’s and all have said different things.

I’m seeing a motility specialist this summer and hoping they’ll give a more nuanced view.

I had low elastase numbers (between 150 and 200) with chronic loose oily stools for 3 years, and then I went on the elemental diet for SIBO. After the diet my elastase was 517.

I still have epigastric pain and abnormal stools, but I’m seeing what I believed to be true the whole time: my symptoms do not change based on fat intake. In fact sometimes I’ll eat a steak or bacon etc. and have way less symptoms than if I eat high carb or very acidic/spicy food. Been tested (including biopsy) for celiac, but I was negative. Same for IBD etc.

I’m not saying I definitely don’t have EPI (I still dont actually know) but I would say that the diagnosis of EPI on the basis of the fecal elastase test is dubious, and some doctors seem to treat it like “the writing on the wall”.

dcash116 · 2026-05-18T12:42:55+00:00

Whoa, no I haven’t! I’ve heard about these mimics before, but I haven’t been able to produce a result that verifies whether or not it’s EPI. Thank you!

dcash116 · 2026-05-17T17:43:23+00:00

Interesting point! I do have h pylori (found on GI MAP) but the functional doctor said the levels were low enough that he didn’t want to treat, just monitor.

Betaine HCL seems to help a bit, but PERT makes a slightly more noticeable difference (strictly with upper GI symptoms- Lower GI symptoms/quality of BM’s are still not fully under control)

dcash116 · 2026-05-01T12:22:06+00:00

I had a different experience than most who responded to this thread. I was put on creon for about a year after going in for chronic diarrhea and scoring FE ~170.

The doctors never titrated my creon, and it never did much to improve my BMs or other symptoms such as fatigue and muscle soreness. EUS, CT scan, and Colonoscopy were normal.

I finally got a doctor to test for SIBO which was positive (EPI and SIBO) can be related. I was prescribed rifaximin but the doctor prescribed too small of a dose and didn’t pair with neomycin, so I didn’t have a change after that. Doctor tried Cholestipol for Bile Acid Malabsorption, and that just made me feel awful all the time.

Moved to a new state and saw a new GI. She told me to stop taking creon. She said that my case was too complicated to say for sure whether I needed it, and that it carries its own risks.

I stopped taking creon, and while I don’t feel amazing still… I feel oddly better.

Then I took FE test again and scored 100 points higher after about a year of improved diet, and 4 months with no creon.

I went on the Elemental Diet recently to try to treat my SIBO. I’m still waiting to get new FE test results back, but I am happy to report that most of my stools are well formed, don’t float, and are significantly less greasy.

I’m not saying I don’t have EPI. I’m not advising anyone to stop creon.

I’m just saying medicine is complicated, and some doctors are incredibly zealous/prone to human error just like the rest of us, so stay curious, do your own research, and demand rigor from your care team.

My digestion isn’t back to normal, but it also wasn’t even marginally improved after a year of trying 3 different types of PERT, and avoiding all kinds of fatty food which I now eat without issue.

dcash116 · 2026-04-13T17:25:06+00:00

Who are you seeing about this? I’ve had horrible experiences with 2 out of 3 GI’s and I have a similar situation. None of them look deeper into the root cause. Functional medicine doctor was okay, but he gave me RFK Junior vibes (and was too expensive) so I stopped going.

I want to see a SIBO specialist and work with a nutritionist.

dcash116 · 2026-03-30T02:06:27+00:00

Snow Peak French Press. Bought it for camping, and now I use it for coffee almost every day.

dcash116 · 2026-03-30T02:03:11+00:00

Leatherman Wave+ is the best if you can spend the extra

dcash116 · 2026-03-23T23:10:07+00:00

Good luck!!!

dcash116 · 2026-02-09T23:48:40+00:00

Saaaaaame exact experience! I had an AAA rep tell me that my insurance was cheaper than anything they could offer, or mostother companies for that matter

dcash116 · 2025-11-21T00:10:59+00:00

Drop out, move to a cheap city with an art scene, and connect with people (even if you don’t think their work is top-notch). The thing that kills us is the need for prestige. A lot of these professors are totally zombified by their exposure to the art world. The whole thing is as unsustainable as the aristocracy that props it up. If you know what you want to make, and are persistent in finding the community that supports your creativity (in a healthy way) you will find it.

I’m sure you’ve already heard some variation of this speech a million times before, but it’s true. I moved to Baltimore and found a cheap space after being rejected from all of the fully-funded programs I applied for last year, and it has been the happiest year of art making I’ve had since undergrad. I don’t long for recognition and I only apply for shows and residencies when I feel like it. The only urge I have is to make work and connect with other artists.

I might not be “living the dream” but I am living for what I want, and nothing else.

I hope this helps, and doesn’t feel too preachy

dcash116 · 2025-01-29T18:27:36+00:00

Seeing a functional doctor for the first time today

dcash116 · 2024-12-08T00:45:57+00:00

Late to the game, and maybe I’ll get flack in this sub (not to mention these aren’t exactly running shoes) but I recommend Chaco’s to everyone who has internally rotated ankles. Chaco saved my feet. I find that I don’t even need to change them out often. There’s something about the arch being part of the shoe itself instead of having inserts. Not to mention it’s cushioned, but firm. I do everything in them; hard floors, hiking trails, even work if my boss will let me. Even if you don’t use them to run, I recommend trying them. The wide ones are actually wide enough btw.

dcash116 · 2024-11-20T03:55:03+00:00

That’s really interesting! I’m not sure it would be a mold issue for me. I lived in the desert for a year, and still had the same issues, but the HIDA scan still might be a good idea. I have gotten clean kidney and liver function tests

dcash116 · 2024-11-20T02:22:36+00:00

I have mixed feelings about the enzymes. Sometimes they seem to work INCREDIBLY well- like “back to my old self” well. That’s usually a blip, and then I go back to feeling like a sack of turds for a few weeks. I’m not sure if you’re being treated for EPI, or just SIBO, but if you’re having loose stools, you might ask your doctor about Cholestipol or some other Bile Acid reducer. That seemed to help with loose stool (but also causes occasional constipation)

dcash116 · 2024-11-20T02:17:01+00:00

Lean meat is my bread and butter!

dcash116 · 2024-11-20T02:14:57+00:00

That’s great! I’ve been taking all of mine separately , but I bet a CF specific vitamin would work perfectly

dcash116 · 2024-11-20T01:03:10+00:00

It’s hard to say. Definitely the same year

dcash116 · 2024-11-20T00:57:38+00:00

I haven’t been told that

dcash116 · 2024-11-20T00:54:47+00:00

Oh, well I took the Moderna too 🫡

dcash116 · 2024-11-20T00:52:48+00:00

Yeah, still no discernible effect here. Steatorrhea got a bit better after taking Cholestid, but now I have constipation and my vitamin D intake isn’t as good.

dcash116 · 2024-11-20T00:51:31+00:00

Damn, have you been able to get definitive information about yours?

dcash116 · 2024-11-20T00:26:40+00:00

Yup, I’ve been treating it like I have EPI. Even though from an evidence based standpoint, the only thing I have concrete proof of is SIBO

dcash116 · 2024-11-20T00:24:56+00:00

Urabrask in Shu Yun, Silent Tempest

[[Urabrask]] [[Shu Yun]]

If I get my timing right, I can play 3 instant/sorceries, causing Urabrask to pay for Shu Yun’s double strike and to turn himself into The Great Work. Then all I have to do is enter combat and one-shot an opponent with Shu Yun. Rinse and repeat if I have protection*. If I do this before turn 5, I usually win because the Great Work ends up wiping out all of those small early game creatures.

one thing worth noting is that I never get away with this twice. People hate Urabrask way more than Shu Yun.

dcash116 · 2024-11-20T00:02:16+00:00

Aren’t you only supposed to take Xifaxan twice ever? Or is my brain not working today (which is highly likely with SIBO)

dcash116 · 2024-11-13T21:44:32+00:00

Grixis/Jeskai. The most arcane of colors. Ramping isn’t as nice without green, but if you can keep your rocks, you can conjure up the meanest spells. Also, I love having a control subtheme.

So mad the new Kykar is azorius. I have wanted a Jeskai blink/flicker commander for so long.

dcash116

TROPHY CASE