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Member Since 17 Feb 2004
Offline Last Active Private

Posts I've Made

In Topic: Reactions That Hospitalize Treatment

Yesterday, 08:54 AM

My daughter has been hospitalized for dehydration for glutenings.  She has Eosinphilic Esophagitis too.


Really it is a trip to the urgent care and getting anti nausea drugs quickly.  Usually a shot as she can't keep any fluids down.  If we miss that window of time she has needed an I.V. for about 3 to 4 days.  The recent release of the anti nausea drug wused for chemo patients has helped a lot.

In Topic: Has Anyone Else's Young Child Only Had Chronic Stomach Ache?

Yesterday, 08:47 AM

My daughter was diagnosed with "probable" Celiac when she was 15 months old.  She was too ill for the endoscopy with biopsy.  Her Celiac panel had some positives and the genetic test was positive for DQ2 and DQ8.


When she was 6 everything got worse again, same type of Celiac symptoms.  She was very good about the gluten free diet, but just getting sicker.  Her "whole" belly hurt, and she was vomiting up to 5 times a day.  (sometimes it was a burp of vomit in her mouth)  She went on to be diagnosed with Eosinophilic Esophagitis which is now being diagnosed more with Celiac.


(If the doctor does not order the test, the pathologist does not put the red dye on to the sample~ and the presence of the eosinphils is not detected.  Some damage should be seen in the esophagus such as furrowing, schatzi rings (spelling?), and creamy blotches, and other such damage.

In Topic: Endoscopy Biopsy Results Were "could Reflect Mild Celiac Sprue"?

Yesterday, 08:29 AM

I am sorry for your loss.


I'm glad you are going for a second opinion.  It seems to me you may not have been made aware of the proper steps for an Eosinophilic Esophagitis diagnoses.  The steroid atomizer is one part of the process.  You should have been referred to an allergist (not always helpful, but if you can identify any "allergens" through testing it would be worth it)  WHEN ALL TESTING IS COMPLETE you start an elimination diet, to try and identify your "triggers"  that is usually the top 8 allergens, gluten, and peas.  If you are "triggered" by gluten ~ you are to avoid gluten just as seriously as any diagnosed Celiac.  You are at risk of getting food stuck in your esophagus from the long term damage of eosinophils.  If food gets stuck in your throat you may need emergency dilation surgery.  If you don not stop long term damage from happening, you may need to be on a feeding tube.


We have members here that avoid gluten because of EE diagnoses.

In Topic: Another Cookie Baking Question-Cookie Are Dry?

15 December 2014 - 07:50 PM

I really meant to spoon lift, like you described. 

In Topic: Chef That Wants Your Feedback

15 December 2014 - 03:07 PM

canollis.  I really miss those lovely Italian treats.


Phyllo dough creations.  spinach pie


Gyros, like Olga's kitchen.


If you offer a dish like Taboleh (a regional dish with some type of added wheat) saying it's gluten free, you better tell me how you replaced the wheat/gluten.  What has been done to reduce cross/contamination ~the fact that you mentioned it is reassuring.