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?

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

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).]

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.

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).]

My daughter is 22, and has been diagnosed with Autoimmune enteropathy after being told she had celiac disease. She has had diarrhea all her life. She has intestinal problems as well as arthritis. She is blind now and is on a feeding line and cannot eat anymore. Her stomach is also affected. She has a stricture that won't allow food or liquid to go into her intestines. She throws up daily and is frequently naueated. She has gotten progressively worse over the years and I am glad you have found doctors who can help and could diagnose your children early. The doctors have not known exactly what to do with her. They would treat the symptoms but didn't know what the root problem was. We have Kaiser and I would love to know who the doctor is at Loma Linda. She is on Prednisone and Enbrel right now.

Meggie, The two Peds GI specialists in the medical bldg across the street from Loma Linda hospital are Klooster and Shah. My daughter has seen them both. Klooster has been her primary Dr. for the condition for the last 11+ years. They would know who to refer you to for an adult. Research on autoimmune enteropathy is being done by Dr. Adrian Hayday and his group at Guy's Hospital, King's College, Univ. of London.

Thank you so much for the information. I am going to get in touch with them. Have any of you heard of it affecting the stomach as well as the intestines? The inflammation has moved up to the stomach. They have her on Prontonix for Reflux, but I think it is just part of the disease. She had no atomach trouble when she was younger.

Meggie, my daughter has experienced the killing of the villi in her intestines only. Nowhere else has she had inflamation. As a matter of fact, she has her first endoscope in 4 years, tomorrow morning. Dr. wants to see inside, do small bowell biopsy, as a possible prelude to reducing her meds.

Dear Yardbird and Meggie
Sorry so long to respond, but had a repeat biopsy and more blood tests ordered and done last week. The results of the biopsy show the villi of the intestine as normal. The dr. ordered more blood tests, and a test for the tissue samples to be sure he is digesting sugar. We won't have the results of those tests for a couple of weeks. I have written down the names of the docs you mentioned and will contact them.
Thanks so much!

Dear Yardbird and Ivan,
I hope you get some answers soon, ivan. I have given Yardbird's doctor's info to my daughter's doctor and she is going to try and contact her. Thanks for the info again, Yardbird. Hope all is going well. I will let you know when I hear something. I would love to get another opinion by someone who specializes in this disease.

Hi Meggie and Yardbird
Good news - blood test and biopsy show he does not have AIE. GI dr wants to challenge him again with gluten and do a 4th biopsy (he still is not convinced he has Celiac Disease). Of course I took my hubby to the follow up appt. with the GI dr, and he was MUCH more informative than when I go alone (always happens that way). Basically, he has been cleared from a GI standpoint - and the endocrinologist does not seem to have a clue either. Thinks he is doing 'fine' and does not see a problem. So I'm considering the gluten challenge, but am very reluctant to do it. Thanks again for the information and support. I hope all is going well for both of you.

I know this is a little late but I just saw this post. I have a four year old son who has been diagnoised with celiac for the last two years. has anyone ever heard of celiac being control by steriods?? He has also been diagnoised with autoimmune and an IGA deficency and adrenal insuffiency due to the steriod use. This has been extremely frustrating for the last two years. He hasnt grown in over a year and my peditrician said he didnt think he was going to live through this whole ordeal..HELP!!!!