in reply to @kayabbott As a former insurance investigator, I love researching! I stay away from Dr. Google, and have found so much information on NIH, Global Healthy Living Foundation and other non profit organizations.

For what it is worth, today is National Rare Disease Day, and they are encouraging those with a rare disease to wear stripes. Kind of like that lesson doctors are taught: look for horses not zebras. Find the quickest most likely diagnosis, which has been my experience. If you are interested, her is the link: https://rarediseases.org/

Thanks for the information on ResearchGate. I will check it out. I have found that there are so many resources available, and if I see something or some test I think I might benefit from I tell my doctor, thus the cortisol test, which my former rheumatologist described abnormal cortisol levels as "rarer than hen's teeth." LOL.

It is a terrific organization. I am sorry for your celiac disease, as I have a few friends with the same problem, and their diets seem difficult to manage. I feel fortunate not to have this affliction, however the ulcerative colitis can be problematic at times. One really does have to be more proactive nowadays, in terms of managing their own diseases, and I am glad you are as proactive as you are in this regard.