Do I have IBD? Cancer? Celiac's?

[quirkinator]

I posted this to a Celiac's forum. I am just trying to figure out what is wrong with me...

For the last year and a half, I wake up each morning, and vomit either bile or last night's dinner (completely undigested). I get nauseous throughout the day, and sometimes after I eat. Also, I have diarrhea, or loose stool that is sometimes bloody. In addition, I have lost about 25-30lbs over the last 9 months. I do not have much of an appetite, and when I do eat, little meals make me full. My belly gets really big as if I am pregnant, and then my stomach gurgles loudly for hours. In addition to these symptoms, I am on cochicine for PFAPA, a very rare auto-immune disorder. And, to top all that off, I have been getting migraines about once per week for the last two years, and I have a lot of hair loss. Last week I went to a gastroenterologist and will be having a colonoscopy, upper endoscopy, gastric emptying test, stool test, and a bunch of blood work. I am afraid of what this might be. Any ideas/support/suggestions would be helpful. I am a 29 year old female of Jewish European ancestry, if that makes a difference. Lastly, all my blood work came back normal, except an elevated bilirubin (dehydration?). Thanks for listening.

The blood tests the gastroenterologist ordered:

CBC
Comprehensive Metabolic Panel
SED rate
CRP
(all above came back normal except bilirubin elevated; all below still processing)
IBD Serology
Fecal WBC
Fecal calprotectin
Fat stain fecal

PS - I'm really, really afraid of possible pain/complications with the colonoscopy and the upper endoscopy.

 

[KayleighMeek]

Hello,

Sorry you are going through such a tough time but it sounds like the dr's are doing all the right things to figure out what is going on.
I think everyone worries about the first time having a colonoscopy but I don't remember anything about it I was given drugs through an IV and it was fine I also had no problems after the procedure. I haven't ever had an endoscopy so I don't know what that is like but a lot of people on this forum have had them maybe they might give you more of an insight.
I found this on the www.nacc.org.uk 'The condition is also more common in white people of European descent, especially those descended from Ashkenazi Jews (those who lived in Eastern Europe and Russia).' this was taken from an information sheet on their website for crohns disease.
I hope they can find something to help you feel better soon.

 

[D Bergy]

It sounds as if there may be more than one thing going on, but I would check for a stricture. Food will only sit in your stomach so long, if it can't go down, it will come up.

I had hair loss for a while, just from malnutrition. If you can't digest your food it is going to happen eventually.

Let us know what they find.

Good luck

Dan

 

[David]

Hi there and welcome

I'm sorry you've been having so much trouble Just my guess, but I bet you're looking at Crohn's Disease. And if that's the case, I bet you don't have PFAPA, just extraintestinal manifestations of Crohn's.

Hopefully I'm wrong but all those tests your doctors is doing should be reasonably conclusive. They're being thorough which is a good sign.