now my docs say I have an "autoimmune intestinal enteropathy" ever hear of it?
#20689 - 09/14/03 08:11 PM
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marla
Reged: 07/15/03
Posts: 24
Loc: pa
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All my test results are back and there were too many things not right with my biopsies for the docs to say I have irritable bowel only. My gut is attacking itself and ruining my villi, this is what is causing a lot of my extreme pain and throwing up. They put me on steroids and after only two days I;m starting to stabilize. The problems? They don't want me on steroids too long because they are not good to be on for long-term. this is scary because my only alternative would be immunosuppresants and they are scary themselves,even more so. Also, I was told to still follow the IBS diet because my gut reacts more strongly to foods that are harder for it to digest. I was wondering first of all, can I still be in this group? This disease they say I have is so rare that there is no support groups set up for it. I don't know where else to turn. Has anyone ever heard of this? Any experience at all would be greatly appreciated. Thanks for listening. Marla
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Hi Marla,
you are carrying quite a load, but your still one of us.
Your Like many of us, have IBS plus other health problems.
Your in my thoughts and prayers.
Paintlady
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My thoughts a prayers are with you. We will be here for you when you need to talk. Gail
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Marla, So sorry that you are feeling scared and ill right now. Perhaps with more research you will better understand what you are dealing with. Education is the key. When I found out I had IBS, I knew nothing, my doctors didn't know much more. Then I found Heather. Maybe your answers are out there also. OF COURSE you are part of this group. We will support you in any way we can. (((really big hugs))) Thinking of you. artist(Kathleen)
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Hi marla - I'm sorry you're having so many problems. I've never heard of this, but I did a search on Google and a lot of stuff came up on it, including this http://www.healthboards.com/ubb/Forum69/HTML/000088.html. Go to the topic "autoimmune enteropathy". (If for some reason you can't find it, do a search on those boards) Here you can probably post questions to people that know what you are dealing with, and you can probably read up on a lot of info from the other search results.
Hopefully someone else from here will have more info on this topic also. And you are always welcome here. Please keep us posted on how you do.
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Thanks so much to those who responded, I appreciate the support more than you can know. I will defininately try and stay in touch. Mags, I looked at that link, thanks for the info, I'll be checking it all out. HOpe you all stay well... Marla
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Heather is the Administrator of the IBS Message Boards. She is the author of Eating for IBS and The First Year: IBS, and the CEO of Heather's Tummy Care. Join her IBS Newsletter. Meet Heather on Facebook!
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