Autoimmune Enteropathy?

[mommyoftwo]

Was this ever mentioned to any of you? I just got home from my GI doc and my lab tests are showing that antibodies are attacking my colon. It is a somewhat rare disease but is somewhat not surprising since I do have Lupus. She has scheduled me for a colonoscopy next Thursday where she plans to take "tons" of biopsies but I was wondering if it was ever brought up to anyone here. I also have to go for a CT Angiogram of my abdomen on Monday.

The last colonoscopy I had by the previous doctor last year showed inflammation but she is not happy that it wasn't looked at in more depth so she wants more information.

 

[David]

I hadn't even heard of autoimmune enteropathy before. I wonder if the rarity is because it is rare or because it is rarely tested for. Articles for anyone wanting to read about it a little:

http://www.ncbi.nlm.nih.gov/pubmed/17683994 - short and simple
http://www.wjgnet.com/1007-9327/14/1156.pdf - much more in depth and puts forth some interesting questions and distinctions.

Please keep us updated as to what your GI finds. It sounds like she's amazingly thorough which is wonderful.

What lab test(s) were performed that showed antibodies attacking your colon?

 

[mommyoftwo]

To be honest, I am not sure what lab test she actually performed. She is from Mt. Sinai in New York City and this is a test that she actually asked a coworker to perform for her because he is working on a study for it. She said that most labs don't test for it so she had to call his lab assistant and ask for what tubes to use to draw my blood. She said the antibodies came back high showing that they were attacking my colon. Based on this, it suggests that I have autoimmune enteropathy. The colonoscopy that my previous GI doc performed showed inflammation but they didn't look at it in enough detail for her to determine the type so she wants many more biopsies taken (they only took 2) to determine if this is in fact what I have. Another possibility (she feels unlikely though) is that it could be my lupus attacking my colon and I guess the biopsies will help determine that. If they don't give her an answer then the pill camera will hopefully help along with the CT angiogram.

To be honest, when she took the blood originally, I dismissed this as a possibility because it is so rare (or seems to be) that when she mentioned it as a good possibility today, I was completely shocked.

 

[David]

The second paper I linked to stated only a few labs tested for the antibodies, but it is a five year old paper so I was wondering if things had improved in that arena. It doesn't sound like it.

I'd be curious if you have the anti-goblet cell antibodies (also found in Crohn's Disease and other IBD) or the anti-enterocyte antibodies (not found in IBD). If you ever feel like it, I'd be really curious what the answer to that is and would be happy to help you research more based upon any findings.

 

[mommyoftwo]

That would be great. I will let you know more when I get more information, probably after the colonoscopy on Thursday. The way she talked today she just kept saying Autoimmune Enteropathy and never mentioned IBD or Crohns at all. She only mentioned inflammation based on my past colonoscopy. Once I get a definite diagnosis, whatever it is, I will definitely want to research it completely because I will need to fit it together with my Lupus and how that is treated, which I am sure will be a lot of fun I am a person that wants to know as much about my condition as possible.
Thanks.

 

[Wife of AIE]

Did you ever find out if it was AIE? My husband has it and I am curious to see if you were diagnosed and what kind of treatment was decided on. He was diagnosed back in 2007 and has been on steroids ever since. In an attempt to save his thinning bones, the doctors have recently tried Imuran and now Cimzia and Humira with no real results since they switched.