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Member Since 17 May 2013
Offline Last Active Jul 02 2013 04:08 PM

Topics I've Started

Promising Scope...waiting On Bloodwork

02 July 2013 - 11:28 AM

We did the scope and biopsy and blood work.  The GI said that he did not see any damage to her villi, but he qualified that by saying he wasn't surprised because she is so young and has been off of gluten most of her life.  He said it will be the blood work and biopsy that really show if she is Celiac.  He said he thinks she definitely had a gluten problem (obviously).  

Meanwhile, she got glutoned somehow yesterday and threw up today and have multiple gross poops.  The only thing I can think of is the restaurant we went to yesterday that claimed their gluten free fair was prepared and cooked separately.  **Sigh**

Negative For Dh.....experiences For Egd?

26 June 2013 - 07:40 AM

......on to the scope tomorrow!  I'm not sure to be happy that the biopsy was negative for DH and hold out hope she doesn't have Celiac, or be upset we still have to go through with the scope....or both.....



Any advice on how to make the procedure and 'recovery' easier on her?  She is 2 1/2...

Why Do I Have To Educate My Doctors?!

26 June 2013 - 05:01 AM

AAAAARRRRRRGGGHHHH!!  *Sigh*  I had to get that out.  Still waiting on the immunofluorescence studies of the suspected DH- I explain to the derm's office that if it comes back positive we don't have to do the scope.....


She says, "Well don't you think they need to go ahead and do the scope to see what is going on?"



NO.  No, I don't.  The scope is diagnostic, it doesn't alter treatment!  I proceed to explain that we aren't trying to "find out what is gong on" if we already know what is going on by the positive DH.  That we aren't trying to determine treatment with the scope- there is NO treatment, just a gluten-free diet.  I am not going to put my daughter through a scope if I.don't.have.to.  And who are you to question my judgement for my daughter on something you have proven to me before you don't know anything about????  If the DH comes back positive, we know what Celiac disease does- we don't need to scope her intestines to "see what is going on."  We already KNOW what is going on.  The blood work for the CBC and Anemia is going to tell us "what is going on."




Off to google immunofluorescence studies.....

I Could Have Told Them That....

24 June 2013 - 12:27 PM

So the biopsy of the blister came back.....inconclusive with possible diagnosis being eczema and psoriasis....


Well I could have told them that. 


The immuno-florescent study of the uninvolved skin has not come back yet.  The nurse said "well it says it is not diagnostic of DH"- Duh.   I told them the biopsy of the blister wouldn't diagnose DH.  

Skin Biopsy!

20 June 2013 - 05:35 AM

So despite my pediatric office's referral department completely dropping the ball (twice), we have an appointment with a dermatologist to biopsy what we think is DH.  She broke out with the first few blisters last night, we have an appointment for 10:30 this morning (long story, but a miracle happened there).  Hopefully if this test comes back positive we can cancel the EGD!!!!!!  

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