Undiagnosed: scopes show ulcers but no inflammatory markers and negative biopsies

[Kathy1109]

Hello! This is my first post and I am not sure if I am in the right place or not. My husband was found to have iron deficiency anemia on recent bloodwork for a physical (no symptoms at all--ferritin 7; serum iron 39; hgb 12.5; hct 39). We were referred to GI for colon and EGD. They found multiple bleeding ulcerations in the duodenum and saw congestion and a few erosions in the terminal ileum. He felt this might be crohns but biopsies were negative as was SED rate, CRP, and crohns bloodwork. He has had no symptoms whatsoever. The GI doctor was surprised that the biopsies were negative but said it could still be crohns. He just had us do a serum gastrin level to rule out Zollinger-Ellison (which is terrifying) but he had been on Omeprazole for 8 days when it was drawn so I am worried the labwork will be falsely elevated. We are still waiting on results of that bloodwork. The GI doctor said it is possible that it could still be crohns and if the ulcerations remain at 8 weeks, then he will do a small bowel capsule endoscopy and try Entocort. Evidently he had low ferritin and iron deficiency anemia 13 years ago before we were married and was referred to a hematologist who never worked up GI! He released him when the iron supplements normalized levels. Whatever is going on has happened in the past too. He is very thin and can eat and eat and eat without ever gaining weight. Please help! Could this still be crohns even though the bloods and biopsies are negative? Also he has had no GI symptoms--not even heartburn. He is currently on Omeprazole 40mg in the AM, Zantac 300 at bedtime, and Ferrous Sulfate three times a day. Any thoughts? So worried.....

 

[shamrock15]

I would say that it is difficult to offer a concrete opinion. Yes, there can be duodenal crohn's. I have had mine resected previously when but couldn't tell you all the information of what was showing at the time. I had a lot of other issues happening.

I did get some anemia issues lasting three years or so, and have no idea what corrected it. I think regular sleep was the biggest thing for it actually, but again there is no evidence of what caused either the initial problem or solved it.

 

[24601]

Hi Kathy,
Welcome to the forum though I'm sorry for the issues that have brought you here. All those with GI issues - diagnosed or not - are very welcome here.

Some people with Crohn's don't have inflammatory markers in their blood or test positive for Crohn's on biopsy. There are also those who present without symptoms - although the combination does make Crohn's seem a less likely diagnosis. I do think, however, that the inability to gain weight should be considered a symptom.

I certainly understand your concern. I do think it sounds reassuring that the GI is considering this possibility despite the unusual presentation and will be following up to see if the ulcers persist.

Please do keep us updated.

 

[Kathy1109]

Thanks so much for your replies. I don't know too much about Crohns and the doctor seemed truly surprised everything was negative. We have been so worried especially since anemia has been an ongoing problem.