Blood Work, Biopsies Normal - So Confused

Hi everyone... I was diagnosed w Crohns at 18 with a barium CT. I'm now 25 and dealing with stomach pain after most meals, bloating, chronic fatigue, major weight loss (20+ lbs), so I scheduled a GI appt. He said it did sound like crohns, and he gave me a colonscopy & upper endoscopy, and did blood work (vitamin D, Vitamin B, Anemia, etc.)

No active crohns was found, no celiac, and the blood work was normal. I am so confused! If the blood is normal, that must mean I'm getting all the nutrients I need, regardless of my eating habits (eating once or twice a day), and diarrhea

What could be going on??!

They scheduled a capsule endoscopy so maybe that will give some answers.

I've had bad symptom times that lead to negative test results, depending on your doctor they take different approaches to it. A general GI suggested maybe IBS, but a IBD specialist thinks that my disease becomes symptomatic before the inflammation shows up which is difficult because they either need to let me get sick for a long time, treat with negative test results, or do nothing.
I actually have a colonoscopy and upper scope in the morning to figure out if my symptoms will show up- we saw inflammation on a CT scan for once so I'm hopeful we will see disease this time- sounds strange but I'd like have my test results to match how I feel.

Is your diet especially full of nutrients? Do you take vitamins? That could account for why lab values look good even if you don't feel good.

My diet sucks lol. I work at a pizza place so I eat pizza, or I'll eat soup, but I really don't eat fruits & veggies. And I don't take any vitamins.

My insurance is running out the end of this month so I have to try and get the capsule test done soon. I just hate feeling like I'm crazy thinking this is all in my head

haha guess your guts just absorb nutrients well, if your labs are fine I wouldn't worry- but don't worry I've had doctors tell me its all in my head, usually you have to find someone well versed in IBD before they have seen this before and know how to help. hope you can get your pill cam in soon

Yeah I don't get it! I usually have diarrhea anytime I have a decent meal so I figured I wasn't absorbing what I needed. All this crap just has me so confused lol

Have you had a mre ?
That with a pill cam maybe able to figure it out .

No MRE yet, he was saying something about maybe doing one. What would an MRE pick up that a colonscopy & upper endoscopy miss do you think?

An MRE can show small bowel disease in the area between the lower and upper scopes.

Dxrolx said:

Hi everyone... I was diagnosed w Crohns at 18 with a barium CT. I'm now 25 and dealing with stomach pain after most meals, bloating, chronic fatigue, major weight loss (20+ lbs), so I scheduled a GI appt. He said it did sound like crohns, and he gave me a colonscopy & upper endoscopy, and did blood work (vitamin D, Vitamin B, Anemia, etc.)

No active crohns was found, no celiac, and the blood work was normal. I am so confused! If the blood is normal, that must mean I'm getting all the nutrients I need, regardless of my eating habits (eating once or twice a day), and diarrhea

What could be going on??!

They scheduled a capsule endoscopy so maybe that will give some answers.

Click to expand...

When I had my first appointment with my gastroenterologist in 2009, he said he didn't know what I had. He said that Crohn's usually (99%) found in the small intestines that is nearest the colon. They couldn't find any Crohn's there in my body. Also my blood work didn't show anything related to Crohn's. When we did the barium swallow, then all these strictures in my small intestines turned up. He then said that I would have a bowel obstruction if I didn't get things worked out soon.

Well during surgery, the pathologist found that I did have active Crohn's and the scarring and strictures were proof that I probably had it for maybe since. 1999. So saying this is to encourage you that the diagnosis doesn't always show up in the normal way.

They were unable to allow me to have that capsule endoscopy due to all my strictures. That procedure should show your gastro what is going on in your insides. Good luck.