autoimmune enteropathy

[yardbird]

My daughter at just past 3 yrs. developed chronic diahrrea, Drs misdiagnosed until she was dangerously low on electrolytes, admitted to Loma Linda, tested for you-name-it, and had her illness dubbed "autoimmune enteropathy". It's quitte rare we've been told. Basically her immune system, without suppression, attacks and destroys the villi in her intestines. That was over 11 yrs ago. Her condition is currently managed with daily doses of Cyclosporine and CellCept, takes Prednizone every other day, and receives monthly IV Ig treatments. Her levels of meds are monitored with regular blood draws. Anyone heard of it?

[Kathy520]

Hello. I came across your message and felt I HAD to respond. I hope you get this. From your description, it sounds suspiciously like your daughter may have celiac disease. Celiac disese causes the immune system to attack the villi in the intestines among other things and can be controlled by diet, usually without medication. There is lots of information on the web about it. I hope this helps and I wish your daughter good health.

Kathy

[S P McCann]

Our son was aged 2 weeks when diagnosed with an autoimmune enteropathy! Prednisolone, azathioprine did nothing for the diarrhoea problems. He was intravenously fed for the first 5 years of his life until after pure experimentation we developed an acceptable, but extremely limited, diet for him. He is now 17 years old, still has daily diarrhoea, and other medical problems, but is a very fun-loving happy go lucky chap of whom we are very, very proud. Not much to help you with, but just wanted to give you hope for the future!! Good luck. P.S. This is definitely NOT coeliac disease and the last time my son was the subject of a research project, about 5 or 6 years ago, he was one of 9 identified in the world who had the same symptoms.


[This message has been edited by S P McCann (edited 04-13-2003).]

[ivan819]

I am curious to learn more about autoimmune enteropathy (IE). My 3 y/o son is currently being tested for it. Supposedly the only place in the US that does the test is a lab in Boston. We started a gluten free diet over a year ago, b/c biopsy seemed to indicate Celiac Disease. While I think he does have CD, I have been concerned about other issues, and his Pedi GI doctor agrees that something is going on that we have not diagnosed as yet and CD may or may not be a problem. He also has Down syndrome and antibody deficiency. So far, the little I have read on IE scares me more than anything we have been thru. Again, any information would be appreciated.
Thanks.

[yardbird]

Ivan, my daughter's Ped GI Specialist is at Loma Linda Medical Center near San Bernardino in southern California. Loma Linda is world-famous for its state-of-the-art cancer center, heart center, trauma center, pediatric center...her specialist, who was in contact with experts in the field not just in Boston, but also in Europe. My daugher was tested for everything but the kitchen sink, I think, including Lupus and CD. There wasn't a specific test for autoimmune enteropathy; The Drs basically diagnosed that by process of elimination and because the treatments have worked. She's been able to live a pretty much normal life for almost 12 years.

[This message has been edited by moderator2 (edited 06-29-2003).]