I literally feel you and your sister's pain. I have had the disease since 2000 and it was hard getting through high school up to now and I am still struggling heavily. My case is severe and my doctor has even put me in a journal after they saw my intestines (they were strange to say the least) during my small intestinal resectioning three years ago.
Sadly I am still Gluten free as I have been for years and still have almost constant pain - nausea, throwing up, constipaption, migraines, joint pain/aches, recently suffered from seizures etc. you name it! Now my doctor wants to do another resectioning after a capsule study (as I did before and the capsule/camera and it became stuck because of my strictures etc. and emergency surgery) and I am willing to go forward but have reservations as my first surgery wasn't successful. I was supposed to actually swallow the casule today but decided to postpone as I have major questions for my doctor before going ahead. I just don't feel like I am in the right mental or physical state to probably in my case have surgery.
I am now 28 and cannot work an it is extremely difficult so I understand the struggles you both have. I also have lost all close friends who refused to understand and deal with a family that ignores my sensitvities. You are so blessed to have a husband that understands your needs and a have a sister to talk to. I think I would be so much better if I had someone to talk to - which is why I tried to check this site out again today and came across your post.
I suffer from much depression and have for years and the illness hasn't helped I'm sure. I am extreme about being gluten-free but it doesn't seem to do any good as it should...I don't even eat out anymore because I have and often land in the hospital so I just go without.
You and your sister are not alone and anytime you need someone to speak with, vent, ask questions, whatever - I am here. By the way, my name is Shawn (I'm female). Nice to "meet ya"!
Tallillingut45Member Since 14 Nov 2012
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14 Nov 2012 - 23:07