QUOTE (Fiddle-Faddle @ Jun 10 2008, 06:17 PM)

I am SO frustrated. This poor lady has what sounds to me like every symptom in the book.
Recent 35-pound weight loss
Intestinal issues
diabetes
thyroid disease
rheumatoid arthritis
and most recently, a supremely itchy rash all over her body.
Apparently, the doctors think she may have lupus, or that the rash is one associated with rheumatoid arthritis, whereas I think she is a walking poster child for celiac/gluten intolerance.
I've sent links to research, links to threads here on this board (including the Lyme one), my own experience with idiotic doctors who felt that they could rule out celiac--and she (and her doctors) apparently feel that they have ruled it out. To my knowledge they have not done bloodwork, nor an endoscopy, nor have they done a gluten-free diet trial.
Then again, after this long, I wouldn't be surprised if it were refractory sprue, so why bother....
And WHY don't we have a crying icon????
My niece (sister's child) has all the symptoms of Celiac also and she has been told, firmly, mind you, that she does NOT have celiac disease....it's lupus. I think all of those clueless doctors have this idea that those type of symptoms point to individual autoimmune problems and when a patient tests negative for celiac disease, they discount it totally and entirely forever. Personally, I think she has celiac disease and doesn't have lupus....at least not yet. They are still in that mindset that nothing is connected and treat each disease as a separate entity. She also tested positive for Sjogren's but they discounted that and blamed the test result on her supposed lupus.
I am amazed at their lack of common sense. When I looked at her test results, I looked at my sister and told her that her daughter does indeed have Sjogren's (I have it also) and she may not have lupus at all because the symptoms of lupus mimic celiac disease. But do they listen?
In the meantime, her daughter cannot hold a job down because her health is so bad and she will be living at home forever, without a life, because she refuses to go gluten-free. She lives on fast food and doesn't cook so we can all see how this will end up. I have come to the point where I have pretty much cut out my family, except for holidays, because they drive me nuts. About 70% of them have symptoms and they ignore me about it so I have officially given up. I just can't hang around with ignorance and don't want to hear their problems anymore....especially when you can see so plainly what the problem is. Very difficult, I know, but I have learned just how deep denial can go and it's ugly.