Getting a Chron's Diagnosis: What should I do?
Hi! I would really appreciate any feedback/advice from those that have had similar issues! I really want to get this figured out...I feel like I'm crazy and imagining things. Here's background info:
24 Yr old Female with a long history of GI issues. It started with severe GERD and esophagitis at 13. I used to have issue with constipation back then and then once I started college it slowly switched to diarrhea. It got significantly worse the past 2-3 years...nausea, 24/7 abd pain, bloating, GERD, 3-10 bowel movements a day, early satiety, I have to eat in small portions, extreme fatigue, brain fog, night sweats, basically feel like garbage and everything hurts (joint pain, lower back pain, muscle weakness/ aches)... grad school didn't help lol
I was able to get an EGD/colonoscopy September of 2023 which revealed chronic esophagitis/chronic (antrum) gastritis with architectural irregularities of the gastric mucosa and the presence of lymphocytes and plasma cells in the lamina propria. They found a schatzki ring and had to dilate my esophagus. About a week later I had a CT with contrast that revealed significant thickening of the gastric antrum. Calprotectin was 61, negative for H. Pylori (mutliple times), intrinsic factor was negative, negative Ttg BUT high IgA and high MPV...low B-12 and vitamin D. The GI said she didn't know what was wrong and that my colonoscopy was normal and basically dismissed me...so I just put up with it until earlier this year. I keep having "flares", where symptoms will get significantly worse and started realizing that highly stressful situations will trigger these (like being in the school sh**ting at FSU) so I ended up in the hospital at the end of April...extreme diarrhea, could not keep anything down, everything hurt, lower back pain was so bad, felt like absolute garbage and CT scan with contrast showed submucosal deposition in the proximal colon indicative of chronic colitis. This led me to a new GI referral and starting everything over...all blood/stool samples were normal except for being positive for both ASCA IgA and ASCA IgG antibodies, IgA was significantly higher than IgG...new colonoscopy/EGD last week was normal except for "mild gastritis"
So I have the antibodies, the symptoms, the fat deposition, and antral thickening and am still being dismissed with them saying that everyone has mild gastritis and that it's probably IBS. I convinced them to do an MRI enterography so we'll see what happens with that.
Also - back in July I got really sick with an upper respiratory infection while also having a GI "flare" and was given a high dose of prednisone (for the respiratory aspect of things, the GI stuff got dismissed of course) and I could've ran a marathon the next day... the lower back pain was gone, I had energy, no GI pain...I felt amazing which was also another context clue for me in regards to possibly chrons with perhaps gastric involvement?
Any one have any experience with chrons transmural disease and how you got it diagnosed?
Posted Oct 2, 2025, 1:53 PM UTC