Gee, I just joined Celiac.com and wrote my first post asking if anyone was interested in participating in a Celiac or gluten-free support group in Fairfield County, Connecticut which I would be interested in hosting. I'm dreading the response I am going to get since I may be considered "self-diagnosed." If I am successful in getting any active participation, I will definitely be sensitive to the diagnosed Celiac sufferers. Hopefully I will be able to get an actual Celiac to lead the discussions or be active in the planning. Thank you for bringing this concern to my attention.
In defense of those who are "self-diagnosed," many of us have been advised by both traditional medical professionals and holistic practitioners that eating gluten free would lessen our inflammatory reactions. Two of my friends have been told based on blood work that they were on the verge of becoming Celiac. In my case I was extremely frustrated by traditional medicine and its tendency to medicate instead of addressing the causes of health issues. I have mixed connective tissue disease (a mixture of lupus, rheumatoid arthritis and fibromyalgia) and my life has changed for the better since I no longer eat gluten. I do everything in my power to eat gluten free and when gluten unintentionally passes my lips and into my gut I suffer with intestinal distress and body aches. I'm planning on getting to a gastroenterologist in the near future. Most of the people I know who are not diagnosed with Celiac disease but eat gluten-free didn't realize they were getting stomach aches regularly when they ate wheat or gluten. Perhaps we didn't notice because of all the migraine headaches, chronic fatigue and joint aches.
Whether or not one is a Celiac or just gluten-intolerant, we would all benefit from open discussions and sharing our knowledge. The more we speak out, the more likely research and awareness will progress. The more visible we are as a group, the more sensitive the food industry and the medical community will be to our needs.