Author Topic: back on an ED and we have our happy DS back!  (Read 1873 times)

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Offline chicagomom

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back on an ED and we have our happy DS back!
« on: October 15, 2012, 11:07:50 am »
DS is already dairy-free...due to horrible fussiness and getting to the end of our rope we eliminated gluten one week ago and we have our happy boy back again!  after talking to the GI nurse about his recent hospitalization and our results of eliminating gluten from his diet, she spoke with the GI doc who asked us to come in right away and to keep gluten out of his diet for now.  we are going to the GI tomorrow and we have an initial appt. with an allergist in 6 weeks. 

his original Celiac blood tests done in June were negative - but he had already been off gluten for 2.5 weeks at that point, which the GI thought would be ok re: the testing.  i am wondering if it was a false negative, though?  i really don't want him to have Celiac but we NEED an answer as to why he is SO fussy and not gaining weight (hasn't gained any weight since he turned 1 but has grown super tall) - and taking gluten out of his diet for a second time this year has basically made him into a different kid (different for the better!).  he is SO happy and gregarious now - and even his teacher at school noticed a major difference in his behavior this last week. 

is there anything else i could be missing here?  i feel like between the GI and allergist we would (should) get to the bottom of this, right?  or could it be that all testing comes back negative and he is just intolerant to wheat? 

these GI issues are SO difficult!

and then, to top it off, the other night DH ate 2 peanut butter cookies and immediately broke out in hives all over his body!   :o  freaked him out 100% and now he wants to go to the allergist (which is like heck freezing over if you know what i mean). 



Offline Buntybear

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Re: back on an ED and we have our happy DS back!
« Reply #1 on: October 17, 2012, 16:50:01 pm »
Hi, how did it go with the GI Doc - did yo get any answers?

Offline chicagomom

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Re: back on an ED and we have our happy DS back!
« Reply #2 on: October 19, 2012, 10:27:30 am »
hi!  yes, we are rerunning the Celiac blood panels and wheat blood allergy tests but we are putting him back on gluten for 3-4 weeks for the tests (he was gluten-free for 3 weeks the last time we ran these back in June).  she also wants him to have skin prick tests so was happy that we had set up the allergist appt.  she feels we are either dealing with Celiac (my gut says no but we will see), wheat/gluten allergy, or gluten intolerance.  if we rule out the first two, then the third scenario is likely.  in any case, we realize that he will be living gluten-free.  it feels SO wrong to try to push gluten products on him for this gluten challenge.  i feel guilty and am bracing myself for horrible behavior!!

i am so glad our ped GI doc takes us seriously.  our regular ped pretty much gave me the brush off when i complained about his fussiness and clinginess and how much better he did on his ED and told me that DS is a "Mama's boy" and what is doing is learned behavior (i.e., he is crying and clinging because he knows i will comfort him).   ::)  of COURSE i am going to comfort my child!  WTH?!  the question is not what is my response to my upset child, but what is making him SO upset.  i may be looking for a new ped when this is all over...



Offline Buntybear

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Re: back on an ED and we have our happy DS back!
« Reply #3 on: October 23, 2012, 21:37:55 pm »
Glad you have found someone that you can trust and that understands your situation. It does make all the difference. Hopefully these tests will prove something either way. Awful not knowing whether a test was accurate or not! Good luck x