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scdurs

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About scdurs

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  1. Before going gluten-free I would opt for the biopsy, for both of you. Your daughter may look good on the blood test, but still might be celiac. Tissue Transglutaminase test is merely an indication - not proof of anything, especially if it shows a low number. Biopsy is the only definitive test, and you need to be consuming gluten for at least 6 weeks prior to a biopsy for them to get a good diagnosis. At least that is what I have read. If you have been gluten-free you may not show any damage in the biopsy. This often leads people to think they don't have celiac, or that they have been "cured" or they no longer have celiac. This could not be further from the truth.
  2. Interesting... Thanks for sharing the data on the genetic testing. When I was diagnosed the doctor was looking for the cause of abdominal pain and anemia. The doctor was looking for stomach ulcers during the endoscopy and biopsied the small intestine at that time and found the celiac disease. So it was probably more of a "search for other causes" than it was "looking for proof of celiac," if that makes a difference. I haven't had all of the symptoms that everyone describes, so maybe I have not been celiac for very long. My anemia went away fairly quickly, so I'm thinking I didn't have much damage yet. I question the biopsy only because it is interpreted by a human, and in my case it seemed that it was not easy to determine from the biopsy. Maybe I'm reading more into the need for the second doctor's review than I should. It just makes me wonder how difficult it is to read these biopsies. Anything that needs to be interpreted can be mis-interpreted, and it seems nothing about celiac disease is 100% for certain at this time.
  3. Thanks for the comments. I have recently read that the biopsy is not necessarily proof, but the genetic testing is now considered the gold standard. Not only had I considered that they meant a negative biopsy is not proof, but thought they also meant a mis-read positive biopsy is possible. After all, a biopsy has to be interpreted by a human, right? I'm not a doctor and don't know how easy or difficult it is to interpret. My gastro doctor had another doctor verify her findings, so I'm assuming there is room for interpretation. Anyway, yes I had already resigned myself to the fact that I am gluten free for the rest of my life, no going back. But sometimes the doubts creep back in. I asked my doctor about all of these people who rave that they feel so much better after going gluten free, while I have not noticed any difference at all. My doctor told me that since I am a celiac, I may not notice anything at all. The only real improvement has been the return of my hemoglobin A1C counts. I guess I was hoping for more.
  4. I was experiencing stomach pains and gasiness and was referred to a gastroenterologist. She performed a colonoscopy (I am 50) and an endoscopy. I had a positive biopsy leading to my celiac diagnosis. At the time, May of 2013, they said that was the gold standard for testing, so I accepted it as fact. Still had pain issues, but less gas and I was no longer anemic. My blood work for tissue transglutaminase ab (iga) was 8 after being gluten free for a few months. The lab report said anything less than 20 is negative, although others in this forum seem to indicate it should be less than 4. Also had abdominal ultrasound done and they found nothing wrong. Problem is I don't feel any different (stomach pains) even though it is better than it was. My gastro doctor said a celiac may not feel any different, or may not realize they have consumed gluten at all, unlike a gluten intolerant person. I have been gluten free since May of 2013, but have made a couple of mistakes and consumed food that my contain gluten, drank a beer without thinking, and I never felt anything. Have not noticed much improvement other than the reduction in gas, and improvement in blood count. I'm beginning to think I need to do the genetic testing to rule out any doubt. What do you think?
  5. I saw a nutritionist after diagnosis, and she had a lot of great tips and pointers about finding gluten free products. Don't worry, she shouldn't write a diet for you unless that is what you want.