Alright.. Give It To Me Straight.
Posted 23 March 2004 - 10:26 AM
What does a 'celiac crisis' consist of? I have heard many of you talking about a point in your life when you had a celiac crisis and it actually prompted the correct tests to be done.
At this point the poor little guy has lost three pounds this last week.. there goes the pound he gained in the last month.. he is now 24 pounds.. I mean good Lord if he looses another pound or two he will be the same weight as his 7 month old brother! The regular doc almost bit at ordering the blood test but is hesitant to step over the bounds of the GI doc. So A weight check in a week, and call to the GI.. in the mean time no milk, try OTC meds for diahrea and bananas.. and keep him hydrated. I am really begining to understand the frustration that you all talk about.. as if I wasn't frustrated before.
Posted 23 March 2004 - 11:18 AM
That sounds awful. How old is he? It's really hard as a parent to know what to do, but if you feel like testings need to be done, I would push atleast one of the Dr's until he agrees.
I had many problems and still do with my little 2 year old twins. There were a number of occasions that I felt something else was wrong, or a serious consideration needed to be made, and the Dr's did not have the same sense of urgency.
It is so frustrating to not know, and your little sounds like he's in dire straights.
Hang in there,.... I hope it gets better soon.
Posted 23 March 2004 - 12:50 PM
Posted 23 March 2004 - 02:46 PM
Keep us informed. I'll be thinking about you
Posted 24 March 2004 - 06:53 AM
Posted 24 March 2004 - 07:20 AM
Where do you live ? Maybe someone here could suggest a good pediatic GI doctor. If you live in Colorado, I can highly recommend my kids' dr. He has office throughout Colorado and one in Wyoming and I think he travels to Nebraska occasionally too.
One of my boys had many negative biopsies and even a false negative blood test (because it was not the 5 part comprehensive test done by Prometheus and some other labs) . I don't even know if the tests were available back then @ 7 yrs ago. His other major GI problems- he had 70%+ of his small intestines removed as an infant- caused him to have so many endoscopies and biopsies. He wasn't diagnosed until years later because of the false negative results and because he had so many other reasons to have the symptoms he had.
A biopsy is not always going to be conclusive, and if you have to convince your GI doctor of that, get a new one !!! I think there is a list here on this board of drs who are recommended, listed by state.
Unfortunately, in order to get a definative diagnosis, you would need to have your child continue to eat gluten containing foods. I personally don't see the harm in going gluten free right now and seeing if that helps. UNLESS you want to get a definitive diagnosis, then DO NOT go gluten free until the tests have been done. The diet will not harm your child and could potentially be very helpful.
Why would your pediatrician be 'hesitant to step over the bounds of the GI doctor' Who is to say that if you are not comfortable with a specialist, that you can't 'step over their bounds' ? Specialist are NOT created equally and are NOT always right !
I would ask your doctor about testing w/ prometheus labs
Good luck with finding some answers
Posted 24 March 2004 - 01:52 PM
Welda.. thanks that is what I was looking for, his diahrea has slowed down in frequency right now but it has not stopped. I expect he will get a pound back just for the mear fact of eating something but I don't expect any more than that.
Of course the GI doc would say.. look he gained a pound back.. he's ok.. UGH It may be time to end this get that stool test and get it and everything else to another doc. I do already have a reccomendation of another Ped GI nearby so I have back up.
Wildones.. did your son gain weight some what normally.. kind of stay with his own groove in the growth curve or was he failure to thrive?
I look at pictures of my son when he was a baby and he looked robust and had those pudgy little cheeks.. now he is pale and getting a little drawn in the face.. I can't get a pair of pants to stay up on him.. oh yeah he doesn't have that classic pot belly.. that also seems to be a nessesary symptom with this doc..
Just want an answer..
Posted 24 March 2004 - 02:22 PM
Hope he gets better soon
Posted 26 March 2004 - 08:42 PM
Both have improved greatly on a gluten free diet. Don't waste your timetrying to convince your doctor to do the correct testing, but use your time finding the right doctor. A child can be gluten intolerant, and not yet have 'full-blown' celiac disease.
Posted 27 March 2004 - 04:52 AM
We have also had a little interesting thing happen. We gave our son lactaid milk as the family doctor said to hold off on milk till the bad diahrea stopped, well we are not supposed to be giving him juice according to the GI so we got the lactaid.. presuming the lactace enzymes are blown out of his system by the diahrea.. low an behold.. formed BMs... Every time... they are still not quite the right color.. they are sort of like potter's clay.. but it sure is an improvement.. SO perhaps lactoce intolerance?
Posted 27 March 2004 - 06:42 PM
We have had daily stool discussions, especially about my son w/ short gut for 7-1/2 yrs now , I think we talk more about it than anyone we know.
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