Beth,
Just since yesterday I have already learned alot about CD and people who are GI. A friend who has 2 daughters who have CD has been asking for over a year if I had been tested or had tried to go GF. When I told her last week, she was so excited and told me that her second daughter's came up negative even though she had evry sym. that her sister had and only was able to function and have a "normal" life when she too went GF. She also recommended a book that I had read about on the web called "Wheat free, Worry Free" by Danna Korn. I was going to order it of amazon, but my hubby said that I shouldn't have to wait and took me to Books A Million. I got it and stayed up until almost 1 am this morn reading it. I didn't know whether to laugh or to cry. I did a little of both! The author has written another book on CD and GI for kids. Basically, I learned that there are 5 tests, NOT 3 that have to be done to completely rule out CD and they need to be at least 2 times each. It's a clinically proven fact that your tests results are affected by the amount of gluten you've ingested just prior to the blood tests. Hello!  I went to my Doc no fewer than 3 times when I had to literally carry my plastic bowl to throw up in to the appointment. I wasn't able to eat anything! Also, there seems to be alot of false negatives. So many Docs don't seem to know that much about CD. As you said they just seem to push you out the door with their convenient dig. and wash their hands of you.
As for your other questions, I haven't tried any of the GF breads yet. I don't live in an area where there is alot of variety. I'm going to Earthfare this Friday and will let you know. However, I did try some Choc. brownie mix from Bud's Red Mill. It's awesome! My 9 yr. old keeps asking for more and my 7 yr. old wants to know if we can put choc. chips in it next time. Thank GOD! If I can have my chocolate then all is right with the world. 
I know that you're feeling truly hopeless right now. I wish that I could direct you in the right direction. You say the GF diet doesn't work for you - how long did you go COMPLETELY GF? I'm still eating pretty carefully as I've read and been told that you need to be careful the 1st 2 wks. because you need to let your small intestine adjust and start to heal. It needs time after being constantly bomabarded with gluten to rest.
Lastly, have you had all 5 tests:
antigaldin antibodies- AGA
antiendomysial
anti tissue transglutaminase
total serum Iga
anti reticulin antibodies (this test is not as reliable as the others but you take a chance with a false negative anyway)
There is also a tissue biopsy if needed.
If it looks like a duck, quacks like a duck and walks like a duck - guess what, it's a duck. I hope that you can find out what's wrong with you and get on living! Don't let anyone tell you that your crazy - I do know that obsessing and researching is better then starting to believe that a stranger or anyone else knows your body better than you do. Honestly, I never voiced it, but the finger of doubt was beginning to wag in my head too. Then I realized that I needed to be deciding what my reaction was to them, (docs and such). I could decide to let them continue to tear me down and cause self doubt or I could let it fly and do the best I could. That also meant that I wouldn't give up. With God's help and my husbands infinite understanding and love, my stubborn self proved them wrong and took my life back. I pray you can do the same.
Lots of Luck,
Jenny
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Re: How did you decide you were glutent intolerant?- Beth
