<<Disclaimer: Verify this information before applying it to your situation.>>
Listmates:
I understand well the panic Celiacs experience when dealing with issues regarding the lack of awareness in the medical community. Today someone doing a Medline search had an understandable response when she read an old study, and was terrified that medical professionals will see that and dismiss our issues entirely. That could well happen, but hopefully, they will look for the most up-to-date information, or will have seen some of the recent press.
I would like to recommend to each person seeing a health care professional that they print a copy of the latest report from Feb. 10th issue of "The Archives of Internal Medicine" and bring it to every health care professional they encounter, especially those who are treating them, even for matters that seem unrelated. As the report states, celiac disease can complicate other major body systems and most specialists aren't even aware when the disease directly affects matters of their own specialty.
For instance, I have an excellent endocrinologist for the care of my Graves' disease. She is a researcher who understands testing issues and complications better than any of the other 4 doctors I have had on my "team" this year. However, she was totally unaware of recent research published in the gastroenterology journals that indicated celiacs on a gluten free diet often had gradual remission in their autoimmune response, effectively achieving permanent remission from Graves' disease. She was, I am grateful to say, thrilled to see the study when I brought it in, since she herself has found, in the last 3 months, two patients (who were under GI care) who had positive blood tests for celiac disease. She has inlaws with the condition, so is much more aware than most, I am sure.
Also, the neurologist who is treating my father for dementia, as well as his internist, had no idea of the connection between CD and neurological symptoms such as peripheral neuropathy and epilepsy. They would not take my word for it 8 months ago when I called their office to warn them of the implications. They got much more serious about testing him after I sent him the lastest study, as well as the Skeen (a neurologist) study on the various neurological manifestations of gasto-intestinal disease.
I got another eye-rolling response when I asked my kids' pediatrician about celiac disease. They had no patients out of 10,000 with CD, but one actually sat in the examination room and read the Fasano report when I brought it in (this was before the Archives of Internal Medicine study came out).
I would heartily advise that in order to prevent a power struggle between you and your medical caregivers, that you present them with the information they need to treat you before you find out how little they know about your disease. This will prevent conflicts down the road that you don't need to invest in.
As far as the question of the national groups dessiminating information: I think most of the groups are doing as much as can be expected of them, many of the best leaders are busy on the political front, Cynthia Kupper from GIG is going to Washington to speak before the Digestive Disease National Coalition 2003 Public Policy Forum, for instance, others, such as Danna Korn, are traveling to give lectures on celiac disease. Certainly, we would all benefit from unification that would prevent us from redundant efforts and allow us to focus on filling in the gaps in our approach. We have no idea what those gaps ARE however if one group doesn't cooperate with the others.
Kit Kellison
Activism Chairman
Tidewater Chapter 17
CSA/USA
---------------------------------
Do you Yahoo!?
Yahoo! Tax Center - forms, calculators, tips, and more
*Support summarization of posts, reply to the SENDER not the CELIAC List*
|
