New And Confused
Posted 01 May 2004 - 03:35 AM
Posted 01 May 2004 - 05:11 PM
Posted 01 May 2004 - 06:03 PM
Inconclusive Blood Tests, Positive Dietary Results, No Endoscopy
G.F. - September 2003; C.F. - July 2004
Hiker, Yoga Teacher, Engineer, Painter, Be-er of Me
Posted 02 May 2004 - 10:55 AM
I have heard the argument several times on this board that an official diagnosis would be needed if a patient was unconscious and in the hospital, and I don't see any possible scenario where that would be needed. If you are unconscious and in the hospital you are not being fed by mouth ! IV feeds as far as I know (my son was on IV feeds for 6 months) does not have gluten in it. If you are conscious (or if your child is conscious and in the hospital and you are speaking for them) then you can let them know about dietary restrictions and Rx restrictions that are taken orally.
General medical records are not obtained when a patient is in critical condition or when they go into the ER. One of my sons has had a very long and complicated medical history. Between him and his brother and sister (triplets) I have made many, many trips to the ER and have seen 19 different specialists, some of them very frequently. None of them have ever asked me to PROVE that my son has celiac disease, they take your word for it !!!!!!
I feel very strongly that if you have confirmation another way, that a biopsy is not necessary, and can actually be harmful in the long run. A lot of doctors will say if they do not see any evidence of flattened villi, then to go back to eating gluten, and it is not a good idea to do that !!!!
A endoscopy is not a big deal as far as I am concerned (my son has had 32 surgeries and proceedures and I see it the same as some might see a very minor thing, like stitches or whatever ...). I do think if enough biopsies are not obtained or the right lab is not looking at the slides (they are not looking for increased lymphocytes) then you can be given very bad advice as far as resuming gluten, if not in the hands of a very experienced GI dr.
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