Inflammation and an undiagnosed condition: Any advice?

Hey everyone, any GI specialists in the house?

I really need some help here because I’m feeling terrible and I have no idea what's going on. I've posted on the Crohn and IBS boards, but I still don't have a diagnosis. This has been going on for a year now—dealing with loose stools every single day and occasional bleeding, but doctors can't figure it out.

Keeping this brief: during my second month of pregnancy, I started noticing heavy, greasy stools. Then the abdominal pain kicked in, along with undigested food in my stool, vomiting, dizziness, and diarrhea. After my C-section, things actually got worse. My stools turned yellow or green, and basically everything I eat comes out completely undigested.
I lost 19 lbs in just two months. There's blood in my stool—thick, dark blood mixed with mucus after bowel movements (hemorrhoids have been ruled out). About two hours after eating, my hands get dry, my skin changes, and I deal with dizziness, nausea, and sometimes vomiting. I get this cramping in my groin like a muscle is seizing up, and I can't even pass gas. I'm constantly bloated. My OB/GYN even noted some unusual vaginal discharge/oiliness and was confused by it.
I went from 88 lbs down to 68 lbs in two months postpartum. It’s clearly a malabsorption issue or some massive reaction to food since everything flares up right after I eat.

We've done a ton of testing: Colonoscopy looked fine without biopsies (the GI doctor was supposed to take them but didn't, so I had to go private for an anorectal biopsy at 20 cm; still waiting on those results). Duodenal biopsy showed inflammatory changes in the lamina propria lymphocyte cells. Urinary amylase was 1400, serum was 200, but lipase was normal. Abdominal MRI showed a fatty liver, but everything else was okay. Small bowel transit was normal. Celiac is ruled out. Abdominal ultrasound was fine, and bloodwork (CBC, CMP, liver panel...) was mostly normal. On the bloodwork side, bile acids are high, ferritin is low, and amylase is elevated. Everything else seems okay. Calprotectin 500, fecal elastase is normal, chromogranin A is normal. They've ruled out any pathology related to the fatty liver. I react to absolutely all food, and even when I follow an intolerance diet, everything passes through undigested. Stool cultures and all other microbiology came back clear. The next steps suggested are a video capsule, small bowel enteroscopy with biopsy, and MR enterography. My doctor barely even examines me; they just read the results and are currently labeling me with Malabsorption syndrome and IBS (even though every medical paper says Calprotectin 500 is an inflammatory marker used to distinguish IBS from actual intestinal inflammation).

Bottom line, the problem is the food and how I'm absorbing it. It has to be somewhere between the duodenum and the small intestine.

Current meds: Ursodiol 2 x1, iron, B vitamins, and Levothyroxine 100 mcg (for hypothyroidism).

Please, if anyone has any thoughts or suggestions, let me know. I'm losing weight drastically, and I just want to be healthy for my 5-month-old baby girl—she’s an angel and sleeps most of the time.

I'm begging for help. Please, don't suggest a psychiatrist or psych meds. Between the bleeding, the rapid weight loss, the vomiting, and the constant nausea, this isn't "all in my head" given these lab results.

Thanks for any advice!

I've been dealing with intestinal issues for years—ulcerative colitis—and ended up having a total colectomy seven years ago. Look, I’m not a doctor, but I’ve certainly seen it all when it comes to gut health. If I were in your shoes, I'd look into ruling out autoimmune inflammatory diseases; the most logical move would be asking your primary care physician for a prescription for corticosteroids, maybe some Methylprednisolone or something similar, and running a trial course for about 5 to 7 days at a modest dose of 16mg daily just to see how your body responds. If you see a massive improvement, then you're likely looking at some form of autoimmune inflammation, which means you should probably start on a long-term regimen like sulfasalazine.
Try supporting your system with supplements that actually aid gut healing: zinc, magnesium, B vitamins, omega-3, L-glutamine, homemade kefir, and Ashwagandha. Cut out the iron unless it's absolutely necessary because it puts way too much strain on your digestion. Once your gut starts functioning properly again, your blood work will improve rapidly, so focus on fixing the gut rather than overloading it with iron.

Just stay calm; nothing lasts forever, this too shall pass. Just breathe. So, hmm, have you actually done a food intolerance test? Because there are people who skip gluten just because it's trendy, but then there are those who do it because they're actually sick. It’s totally possible gluten is the culprit for you, too, because look—if the doctors can't find anything, then it's either psychological or your body simply doesn't handle standard food well. Actually, gluten breaks down in the small intestine just like lactose does. For instance, I can't handle lactose; forgive me if I drink some whey today (that liquid you get when making homemade cheese), I know I'll be dealing with diarrhea for five days straight. And if I have sweet milk, my stomach swells up like a basketball... Seriously, start looking at your diet. Try eating gluten-free for 10-15 days; if things don't improve, try cutting out lactose instead. Doctors often miss these issues because all the tests they scream for (gastro and endo) are done on an empty stomach. Don't worry, if nothing else, just eat healthy—these days, if you didn't make it yourself, it probably isn't healthy. Truly. And just let me tell you, every illness starts in the brain; don't kid yourself thinking it isn't partly psychological (I'm not saying it is, but the brain works that way...). You aren't some medical anomaly; there's no such thing as a disease without a description, and you've got stress piled on top of everything else. Listen to me, try adjusting your diet since you already mentioned you struggle to digest a lot of things. Did they rule out COVID? Try buying yourself a good probiotic; for me, Florastor by Dr. Wolz from Germany is top-tier. Maybe try seeing a gastroenterologist privately. And just stay calm, seriously, just stay calm. Even though I see celiac was ruled out, just try going gluten-free again; it won't cost you anything.

GI and the colonoscopy ruled out Crohn's, unless it's hiding in the small intestine. Just waiting on the capsule now, but it’s clearly food-related since I react to everything. Bleeding whenever I eat anything too heavy. Worst part? My little one is dealing with the exact same thing—all the inflammatory markers spike after eating. For me, we still have the capsule, an endoscopy, and an MR enterography to clear the small bowel, then we're out of options. My large intestine is inflamed, the duodenum is too, but the small intestine is still a question mark. When Calprotectin 500 is high, something is definitely going down. Looks like food just absolutely wrecked my gut. Maybe a dose of corticosteroids for a few days (whatever the specialist decides) will help.

The only recommendation I can offer is to adhere to a strict diet consisting of boiled poultry, semolina dumplings, and unsweetened apple juice... ensure you are eating small, frequent meals that remain entirely free of spices.

I went through a very similar episode last year—it hit me about four months postpartum and dragged on for roughly two months. I ended up playing a bit of a guessing game, eliminating foods one by one until I finally pinpointed the culprits. It turns out dairy was my biggest enemy; anything with milk really threw me for a loop. Things have improved significantly since then. After a year of waiting, I finally worked up the courage to undergo a gastroscopy, which confirmed I'm dealing with GERD and gastritis. These days, I stay away from gluten entirely—my diet mostly consists of salads, unseasoned, paired with either buckwheat or quinoa. I’ve cut out sweets, even fruit, and I prefer everything cooked. My reflux hasn't been great either, though apparently, that might be linked to insulin resistance—I'm still waiting on those lab results to be sure. Anyway, my best advice? Try eliminating foods one at a time until you figure out what's actually bothering you.

I honestly feel like it’s kind of significant that this cropped up during pregnancy, mostly because I dealt with something pretty similar back then.
In my case, the diarrhea seemed to be tied directly to some hormonal imbalances, specifically involving reproductive hormones.
Once one of those issues settled down, everything else just sort of fell into place.

I don't really buy the idea that it's just a coincidence that it happened during pregnancy; it feels more like something in my system just got thrown completely out of whack at that time.

Heading to the hospital. They’re looking into some kind of allergic enteropathy, just gotta prove what it actually is first. Thanks for all the advice, everyone. It's a malabsorption issue, but they aren't sure why yet. Targeted testing is on the table, along with a consultation at a nutrition center. That's how the pros handle it.

Not really sure where this belongs. Since January, this guy has been dealing with diarrhea more than five times a day, every single day. He’s already dropped 15 kg since then... he was at 10 kg down by September, and now it's 5 kg down as of today. It doesn't matter what he eats, whether he's being careful or not, it just triggers the diarrhea, and sometimes he's vomiting too. We've had the colon, stomach, and lungs all scanned and everything looks fine... so what else could it be? Nothing helps—not teas, not probiotics, nothing. No pills seem to do a damn thing. He did have a bout with bruch which made things a bit complicated and painful, but I doubt the diarrhea is coming from that? He also was on Medrol for a long time, maybe we're seeing the fallout from that now?

What else should he get checked out?

First off, rule out anything infectious—bacteria, parasites, viruses, all of it. You’ve gotta look into colonoscopies and GI workups too. It could be anything from food allergies to some kind of gut dysfunction. Usually, stomach viruses don't drag on for more than about 15 days. Make sure to rule out celiac, Crohn's, ulcerative colitis, and microscopic colitis. Honestly, I'd recommend Dr. Vucelica over at the Amrusev clinic. The guy is a total pro. If you go through the hospital system, they'll glance at you for ten minutes and if they don't find anything immediately, they'll just try to send you to a psychiatrist. After dealing with diarrhea, fatty stools, and dropping 23 kg in just two months, I finally found someone who actually took me seriously.

So, if they’re doing an imaging scan of the gut—like a colonoscopy—do they actually see everything? Like, can they tell if it's Crohn's or just some other issue?

This guy just found out he has bacteria in his sludge and some water around his heart... yet his colonoscopy came back totally clean. No sign of any bacteria at all...

It seems pretty weird to me that they missed it on the scan..

Hey everyone,

Back here again because I’m honestly at a total loss. Since my last post three months ago, I’ve dropped 26 lbs (went from 194 down to 136). I'm dealing with bleeding after eating sweets—thick, dark blood mixed with mucus—plus greasy stools and undigested food. I went through a massive battery of tests; everything was up, including Calprotectin 500, amylase at 140, and urine at 1200 (normal is up to 400). Allergy testing showed a reaction to gluten and wheat, though Celiac was ruled out. My MR enterography looked fine, and now I'm just waiting on the results from a video capsule. They started me on Pentasa for immediate relief, which brought my Calprotectin down to 50 and normalized the amylase levels. But despite eating a ton, I’m still wasting away. Stools are heavy, and there's this constant pressure in my lower abdomen and around my anus. I can't even pass gas; I'm just constantly bloated. Colonoscopy and gastroscopy with biopsies came back clear, though they only took a biopsy at 15 cm during the colonoscopy, and my GI doc wouldn't take other biopsies even though it was noted in the report.

Basically, I'm visibly deteriorating and my whole family is devastated. I have a 7-month-old baby to think about. They've diagnosed me with malabsorption, but they have no idea why. No matter how much I eat, the weight keeps falling off. I'm feeling pain and changes around my anus too (not sure if it's fissures or something else), along with dizziness. I used to deal with nausea and vomiting, but Pentasa helped settle that. I'm exhausted all night long. It's hopeless because I don't know what's happening; my GI doesn't know where to send me next. The MR enterography didn't show Crohn or UC, so hopefully, this capsule is smart enough to find something.

The doctor listed Crohn's small bowel, non-specific enteritis, or protein and fat malabsorption deficiency.

There are at least 25 different causes for malabsorption according to the literature I've read.

I’m really begging for any insight or direction because I am clearly fading. People I run into—neighbors, coworkers, friends—are horrified by how I look, like some starving kid from a war zone.

So please, any thoughts or advice... is this Crohn's or something else?

Thanks so much.

It's going to be tough for anyone to offer a solid diagnosis based solely on what’s been shared here.
If even the gastroenterologists aren't certain because they don't have the full medical records in front of them—well, then this forum isn't going to be much help either.

If you're seeing blood and mucus in your stool, that definitely points to some kind of inflammation or change in the gut that doesn't look good.

There is an option for Crohn's (not "chron" as you wrote it) 😉complete nutritional support Modulen ibd which can be used as a supplement or even a total meal replacement.
Ask your GI doctor to recommend that—or perhaps another enteral formula—to use as a dietary supplement just to help get your strength back up a bit.

Have you sought out any other medical opinions?

A family member of mine dealt with significant intestinal issues. We went through the full battery of tests, including a gastroscopy and colonoscopy, with Dr. Branimir Bilić (at Mayo Clinic, though he spends some time at Bates), and we were very satisfied with the care provided. I mention this in the hope that it might be of some use to you, should you not find a more specialized expert for this specific situation.

Steven Cox5 said:Is there seriously nobody here with even a shred of advice or an opinion? Any kind of help at all—doctors, people dealing with similar issues?

Look, I can suggest one thing: go get a three-stool test for Candida. A lot of what you're describing—the frequent loose stools, leaky gut, food intolerances, fatigue, general stomach trouble—is classic Candida behavior. Do a little Google search on it and look up "Leaky Gut Syndrome" too. If the tests actually show high levels of Candida, shoot me a DM and I'll give you some pointers on how to handle it. Cheers.

They ran some flora status tests for me through Proimmun, including testing for Candida, which came back negative. Sure, there might be some leaky gut stuff going on... but this kind of weight loss and food intolerance? It’s gotta be some sort of non-specific enteritis. The symptoms are mirroring Crohn's in the small intestine or even a small bowel tumor. A capsule endoscopy should clear things up either way.

Because losing weight like this and passing undigested food just isn't normal.

Steven Cox5 said:They ran some flora status tests for me through Proimmun, including testing for Candida, which came back negative. Sure, there might be some leaky gut stuff going on... but this kind of weight loss and food intolerance? It’s gotta be some sort of non-specific enteritis. The symptoms are mirroring Crohn's in the small intestine or even a small bowel tumor. A capsule endoscopy should clear things up either way.

Because losing weight like this and passing undigested food just isn't normal.

Stress plays such a huge role with the gut. You mentioned you have a baby, so I bet you're under a ton of stress right now.
My experience was pretty similar, though I had blood in my stool too. I lost 15 pounds in just two months! I went through every test imaginable and popped a mountain of pills, but they couldn't find anything. Once my stress levels went down, the symptoms eased up. Now, ten years later, it’s all starting again because of stress—down 5 pounds in a single month. It honestly would've been more, but I'm constantly eating, mostly sweets and junk, because my iron gets so low that I feel like I might pass out, and since I have a little one, I just can't afford to do that.
But man, I know how it feels. Eventually, you can't even eat because you know you'll be sprinting to the bathroom five minutes later. On top of all that, I was bloated like a frog... my stomach actually looked bigger than when I was pregnant.
Are you on any medication right now?

They found Crohn's on the capsule

Yeah, I called it a long time ago—this is likely autoimmune. You’re going to need corticosteroid therapy to get your system back to baseline, and then you can transition to Pentasa or some other sulfasalazine. It’s honestly mind-blowing to me that it takes four whole months just to nail down a diagnosis....

Not 4 months, more like a year and 2 months of them playing me for a fool. I traveled all over the US and nothing worked until the capsule finally figured it out. 30 kg less bleeding and nobody believes you—all that struggle while dealing with a tiny baby.