5 years ago I was diagnosed with Ulcerative Colitis. However, the medications they provided did nothing and I continued to have diarrhea between 10 and 30 times per day. Since I was out of patience and money, I went 100% gluten free, which initially relieved my symptoms. I figured I must have Celiac, since it runs in my family.
However, starting ~5 months ago the diarrhea and some blood returned along with a pain in my upper abdomen (about 1-2 inches below my sternum, about 1/4-1/2 inch to the right of center). Doctors felt it was too high to be colon related, and an ultrasound came back negative for liver/gallbladder/pancreas/etc issues. They suggested another colonoscopy/endoscopy, but since my insurance really only covers emergency this wasn't financially viable.
I have been able to moderate the diarrhea and pain considerably by significantly reducing carbohydrates. Since this pain started, I've found that I cannot tolerate ANY carbohydrate ... even small amounts of rice or potato go straight through me completely undigested. Again, I haven't touch a bit of gluten for 5 years (I don't even eat out, check the label, and almost always only eat food marked gluten free). The more carbs I eat, the worse the symptoms seem to get.
This is really hard to deal with ... any thoughts?
Thanks for the reply ... the doc actually tried all meds available at the time, all without much success. That's why he wanted to remove my colon, and why I never went back. Something tells me that it's not UC since I was able to rid myself of symptoms for 5 years by eating Gluten Free ... but I just don't know and the doctors I've spoken to recently don't seem to care (possibly because of my poor insurance?).
I'm just looking for answers that don't bankrupt me and I don't know where to go.
Mrlindy, there is a genetic link in some between forms of IBDs and celiac, so that may be why going gluten-free helped. However, it's not going to completely control the problem and you may have to team the use of some form of IBD meds with a GF diet in order to bring the problem under control. If the meds they initially tried didn't work, there are others that can be used and those should be tried.
You're not the only one who finds it difficult to find docs to talk to - or that feel that docs don't care. It's unfortunately a common complaint. Millions feel the same way. But if you want to help yourself, you're going to have to learn as much as you can about IBDs and the different drugs that are used so that you can push to get yourself help. There's a good bit of information that you can access on the net about IBDs. There's an IBD resource board at Medscape which you can sign into and start to read. Yes, it means feeling like you're going to have to learn to speak a new language - 'medical-ese' - but it's worth it if you can learn to give yourself some help. There are drugs that can be used outside of the scope of Remicade and others like it. There are classes of drugs that aren't that horrendously expensive (antibiotics, immunosuppressants, etc.) that can be used in the different forms of IBDs to try to bring the condition under control. And there are loads of people on the different discussion boards that have a lot of experience with IBDs that can help you learn about the diseases and their treatments.
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