u/Zestyclose-Item8529

Hi everyone,

I’m (32 F) feeling really lost and was wondering if anyone has gone through something similar or has any advice on what path to explore next.

This doesn’t include my entire medical history but about 6 months ago, I had a pretty dramatic decline in my health. I developed lower back, hip, and leg pain along with morning stiffness. If I overdo it, I often end up feeling like I have the flu with fatigue, headaches, muscle aches, feeling feverish (usually without an actual fever), and my lower body feels incredibly heavy, achy, and stiff. Gentle movement helps a little, but too much activity also makes things worse.

I was referred to rheumatology because my mom has rheumatoid arthritis which primarily affects her lower body, so they thought maybe I was developing something similar.

But most of my AVISE panel came back normal. However, I have a positive ANA, persistently elevated ESR and CRP that continue to rise, an elevated white blood cell count, and an elevated fecal calprotectin (420)

Because of those inflammatory markers, my rheumatologist initially suspected inflammatory bowel disease with extra-intestinal manifestations. I’ve had ongoing GI issues since an emergency gallbladder removal in 2024, but these newer symptoms are what have significantly changed my quality of life. I’ve now had a colonoscopy with biopsies and a capsule endoscopy, and both were normal.

Ankylosing spondylitis was also considered but I’m HLA-B27 negative, and my MRI didn’t show anything that explained my symptoms.

At this point, I’m just so confused. I don’t understand how I can have persistently elevated inflammatory markers while every test seems to come back normal.

I’ve lost a lot of my normal function and only work part-time now because I never know when I’m going to trigger more symptoms. The only things that have consistently helped are naproxen/celecoxib, and a short steroid taper.

Has anyone had a similar experience where it took a long time to get a diagnosis? Were there any conditions your rheumatologist eventually considered that weren’t
obvious at first?

I’m just wondering if anyone has been through a similar diagnostic journey or has suggestions for what I should discuss with my rheumatologist next because I see her next week.

Thank you!

TL;DR: Calprotectin 420, elevated ESR/WBC, terminal ileum thickening on CT, but normal colonoscopy and biopsies. My rheumatologist still strongly suspects IBD and wants me to get a capsule endoscopy. Has anyone had a similar experience?

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In 2024, my gallbladder stopped working and had to be removed. Since then, I’ve dealt with chronic diarrhea, urgency, reflux, and ongoing digestive issues that never really returned to normal like doctors said it would.

Later that year, I started losing a significant amount of weight, which led to a CT scan. The CT showed terminal ileum wall thickening, but I was told everything looked fine overall and didn’t even know what that meant at the time.

Fast forward to this year, and I developed significant lower back, joint, and leg pain. My legs often feel extremely heavy and achy, which is what ultimately led me to a rheumatologist.

My rheumatologist found a positive ANA, elevated ESR, elevated white blood cell count, and a fecal calprotectin of 420. Most of my other testing was relatively normal. Because of the calprotectin and the previous CT findings, she suspected IBD and sent me for a colonoscopy with biopsies, but everything came back normal…

Despite that, she still feels strongly that something IBD related is going on and wants me to pursue a capsule endoscopy to evaluate the small bowel.

What confuses me is that my rheumatologist seems much more concerned than my GI doctor, and my symptoms don’t always sound as severe as many of the Crohn’s stories I read here. While I definitely have GI symptoms, my biggest issue lately has actually been the lower back/leg joint pain, which my rheumatologist believes could be IBD related arthritis.

Has anyone here had a normal colonoscopy but later been diagnosed through a capsule endoscopy, MRI enterography, or other small bowel testing?

At this point, I’m just trying to figure out if I’m on the right track or barking up the wrong tree.

TL;DR: Calprotectin 420, elevated ESR/WBC, terminal ileum thickening on CT, but normal colonoscopy and biopsies. My rheumatologist still strongly suspects IBD and wants me to get a capsule endoscopy. Has anyone had a similar experience?

—-

In 2024, my gallbladder stopped working and had to be removed. Since then, I’ve dealt with chronic diarrhea, urgency, reflux, and ongoing digestive issues that never really returned to normal like doctors said it would.

Later that year, I started losing a significant amount of weight, which led to a CT scan. The CT showed terminal ileum wall thickening, but I was told everything looked fine overall and didn’t even know what that meant at the time.

Fast forward to this year, and I developed significant lower back, joint, and leg pain. My legs often feel extremely heavy and achy, which is what ultimately led me to a rheumatologist.

My rheumatologist found a positive ANA, elevated ESR, elevated white blood cell count, and a fecal calprotectin of 420. Most of my other testing was relatively normal. Because of the calprotectin and the previous CT findings, she suspected IBD and sent me for a colonoscopy with biopsies, but everything came back normal…

Despite that, she still feels strongly that something IBD related is going on and wants me to pursue a capsule endoscopy to evaluate the small bowel.

What confuses me is that my rheumatologist seems much more concerned than my GI doctor, and my symptoms don’t always sound as severe as many of the Crohn’s stories I read here. While I definitely have GI symptoms, my biggest lately has actually been the lower back/leg joint and muscle pain.

Has anyone here had a normal colonoscopy but later been diagnosed through a capsule endoscopy, MRI enterography, or other small bowel testing?

At this point, I’m just trying to figure out if I’m on the right track or barking up the wrong tree.

Last year I was diagnosed with allergic rhinitis + LPR (silent reflux). My ENT put me on omeprazole, famotidine at night, fluticasone + azelastine nasal sprays, and a short oral steroid taper. The treatment plan honestly worked really well for a while.

Now that it’s late May and allergy season is ramping up here in the Midwest, I feel like I’m flaring badly again. The symptom that’s freaking me out the most is this weird sensation of internal heat...like my head, nose, and especially my throat feel super hot, almost like I have a fever, but I don’t actually have one. I keep touching my forehead because I feel feverish, but my temperature is completely normal.

I can tell I have a lot of post-nasal drip right now, but this feels different from the typical “burning throat” I’ve had before. In the past it felt more dry/irritated or painful to swallow/breathe in. This isn’t exactly painful, it just feels like I’m internally overheating, especially in my upper body/head/throat. It’s such a weird sensation.

Does anyone else with allergies/LPR/sinus issues deal with this during flare-ups? If so, is there anything that’s helped calm it down or helped you feel more comfortable?

I’m trying to get back in with ENT, but the wait times are awful right now and I probably won’t get in until the end of next month.