That's true. I have run into the same thing. At times I get a little frustrated by all the research going on for other diseases. For example cancer is a multi billion dollar business. Where I go for treatments I almost feel like a second class patient. The cancer patients have access to all of these programs and support. Those of us with the rare diseases are often overlooked.
Still we need to realize that advances in these other diseases can still our diseases. For example, advances in stem cell therapies for other autoimmune diseases could help people like you who suffer from celiac disease. I have found that even when there is no specific information about your disease it is still possible to connect many of the dots. In my case it helps to have a wife who has multiple degrees in chemistry and biology. Combine that with my technical ability and we are a serious researching team. At times it is hard to sift through all of the information. The one thing I have really learned is that you have to take control of your disease. Sadly our doctors are not going to look out for us. It is our job to make sure we get the care we need and deserve.
I completely agree with you. Having a positive outlook is essential to coping with any disease. I find myself felling more depressed when I really focus on my disease. I understand the need to relate with other people with a similar condition. However, it is important not to let other people's experiences directly affect your state of mind.
As someone who suffers from a rare disease I have to be skeptical about whose information I trust. I tend to rely more on scientific papers and resources like PubMed. Many times you hit a paywall but with some good searching techniques you can usually find the full articles/publications for free.
As for my disease there is some very good scientific information out there and I have even found that there is an experimental procedure using stem cells (hematopoietic cell transfer) that could potentially cure me. The main problem is that there is a lot of misinformation on the Internet about stem cell transplants. There are a lot of places that are taking advantage of "medical tourism" revolving around stem cell transplants. These places are giving patients false hopes by providing a version of stem cell transplant that is IMHO not effective. You need to make sure to validate your findings and stick to respectable scientific sources. If someone is saying they have an amazing cure it is most likely snake oil.
Adrian Crenshaw a.k.a Irongeek has already done something like this using the Teensy ( http://www.pjrc.com/teensy/ ) programmable usb device. The upside is it is programmable either using C or the Arduino dev environment. It costs under $20 and can be made to look much more unobtrusive than a phone. Combine this with some good social engineering and you have yourself a dangerous penetration testing tool. For more info check out Adrian's writeup http://www.irongeek.com/i.php?page=security/programmable-hid...
I have been using Five Fingers for about a year. I initially used them to help me rehab a muscle/nerve injury in my leg. I have found that after learning to run in them my legs and feet never hurt like they did when I ran in my "running" shoes. I used to get Iliotibial Band Syndrome when I ran over 5 miles a day. I have yet to have IBS come back after I switched to the five fingers. You learn to slow down, cut your stride down and pay attention to where you are placing your feet.
Still we need to realize that advances in these other diseases can still our diseases. For example, advances in stem cell therapies for other autoimmune diseases could help people like you who suffer from celiac disease. I have found that even when there is no specific information about your disease it is still possible to connect many of the dots. In my case it helps to have a wife who has multiple degrees in chemistry and biology. Combine that with my technical ability and we are a serious researching team. At times it is hard to sift through all of the information. The one thing I have really learned is that you have to take control of your disease. Sadly our doctors are not going to look out for us. It is our job to make sure we get the care we need and deserve.