Swollen Organs

[Graindamaged]

Hi,

So I was diagnosed in 2003, have been extremely faithful to gluten-free diet, and along the way found that I couldn't tolerate dairy either. Two years ago I had a followup biopsy and was told my gut had "healed completely".

However, I never gained any weight. My BMI is 19, just above NIH "underweight" category.

Then, in December, I went to ER with fever, chills and extreme organ pain (mostly in the areas of the kidneys and liver/gall bladder). I'd been having mild organ swelling intermittently for years, and now it's suddenly become rather severe.

I had blood work, CT scan, ultrasound, and everything checked out fine. No heightened IG's either. Mild anemia. Doctor is saying there's a chance I was misdiagnosed with sprue (he's owning it, he was the guy who dx'ed me the first time) and I may have Crohn's instead. He's getting me the genetic test, which I didn't have the first time (diagnosed via biopsy).

I haven't been back to the ER, but I've got regular mild organ pain and sometimes have trouble swallowing or urinating.

After reading a couple of other posts, I've begun to avoid citrus and alcohol, and I'm focusing on drinking plenty of water. All of *seems* to help, but it's really hard to say. My naturopath has had me on an herbal tonic, too.

Has anyone else had similar problems? Anything that made it better?

[GF Lover]

Hi Graindamaged and Welcome to the Forum.

 

I'm glad your Doctor is doing some more testing.  Also, you may be Celiac and have an additional health issue.  Are you taking an anti-inflammatory?  There are also foods you can eat to fight inflammation.  Do a quick google and you'll find lists of foods.  Otherwise I think you just have to wait on testing.  Don't hold back any of your many symptoms from you Doctor. 

 

Good luck to you.

 

Colleen

[Graindamaged]

No anti inflammatory at this time, but now I'm considering it. But I like the food idea better. Seems like heavy meds can often just cause new problems. Not to mention mess with my moods. After spending most of my life depressed, there's really nothing I wouldn't do to avoid it now that I'm feeling better.

Thanks very much!

[w8in4dave]

I have a friend that has Crohn's It's nothing to mess with. She has had multiple resections. She is now on Stilara <-- spelling. All I can say is if your test come back positive, then take care and do what the Dr's tell you to do. My friend was DX'd 30 years ago. Then she went 10 years with out any meds because she said they made her sick or gave her other problems. They finally told her if she didn't take care of herself and listen to them she was going to end out with a bag. She now gives herself shots and is doing Pretty good. With Crohn's you will always have issues. But my plea to you is to please listen to the Drs. and do what they say. 

[Graindamaged]

Well. That's chilling, but good to know. It certainly seems possible that I have crohns. Thanks!

[w8in4dave]

I do feel my gut is always swollen. Not always but like I went to a friends house and weighed myself, I weighed 157lbs then the next day we decided to go shopping so I went back there just for kicks ang grins weighed myself again 168.lbs It wasnt my clothing or shoes. I had her jump on the scale because she weighed herself the day before also. hers was the same. So everytime I go there I weigh myself. Sometimes I'm lighter sometimes 10 lbs or more heavier. within a couple of days. So I am retaining water or fluid .. I can tell because sometimes when I wake up my gut is huge! my face is swollen even the whites of my eyes are swollen. then other days. im not. my gut will be flat and my face is not swollen. weird! trying to figure this all out.