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After All That- Not Reacting.

wmramsel

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wmramsel Explorer
wmramsel
Posted

So if you don't remember- tried gluten challenge about a month ago and ended up in the ER the first day.  HUGE reaction.

 

Fast forward a pediatrician's visit, allergist visit (all negative), and a gastro visit, we are doing another gluten challenge with less gluten.  Endoscopy scheduled for June 27th with blood tests.

 

So we start out small with just a few whole grain goldfish...and her skin starts to react immediately.  Her skin reactions continue for 2 days along with pale/stinky poop and stomach aches......then it all stops.  There are a few spots of eczema that are worse than normal, but not extreme.  I'm noticing some mood swings, but again, nothing extreme and nothing compared to the week after the ER visit.  We have increased her gluten intake over the past few days to no dietary restrictions. 

 

What gives??!!  I mean, I'm grateful that the 2 weeks have yet to be miserable, and I would give anything for a miracle and her intolerance suddenly vanish.  Part of me is really scared there is internal damage going on we can't see :(  Anyone else with this experience?

 

 

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StephanieL Enthusiast
StephanieL
Posted

My DS had no gut issues when on gluten. It was a zero Vit. D level that put us on the path to Celiac.

 

Be grateful that you aren't in the ER and that you'll have a scope with (hopefully) answers.  Was there positive bloodwork?  

wmramsel Explorer
wmramsel
Posted
  • Author

My DS had no gut issues when on gluten. It was a zero Vit. D level that put us on the path to Celiac.

 

Be grateful that you aren't in the ER and that you'll have a scope with (hopefully) answers.  Was there positive bloodwork?  

 

I am!!  I actually had her sleep with us (she never does) the first night we added gluten back in (a whole 18 goldfish over the course of the day, lol!) because she threw up in her crib after the ER visit and we didn't know it until morning :(  I felt terrible!  

 

No, blood work will be drawn when they do the scope. The GI didn't want her on gluten very long since she had such a strong reaction before.  He said it sounds like Celiac to him- I had asked him what he felt the sx's were due to, Celiac or some other 'non celiac gluten intolerance.'  He gave us the option to do the genetics test, then only do the gluten challenge if the genetics test was positive, but her blood would have to be sent to CA (from SC), and my husband didn't want to delay the results that could actually diagnose her since the GI felt it was Celiac.  They are going to do 3 Celiac blood tests (I can't remember now which ones), a CBC panel, and an anemia test (she has a love of ice).  

wmramsel Explorer
wmramsel
Posted
  • Author

I spoke too soon....I came home from work to her eczema out of control and she was up half of last night with severe stomach cramps/ache :(

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