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My 8 Year Old Symptoms, Testing, Needs Advice


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19 replies to this topic

#16 nvsmom

 
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Posted 31 January 2013 - 07:25 PM

Sorry about the candy topic.... :unsure:

Four weeks is not a very long time to go gluten-free. Some go through a withdrawl for the first few weeks which exasperates fatigue and moodiness, can cause stomach upset and headaches; for some, it seems to get worse before it gets better.

I personally am still noticing new relief to some symptoms after eating gluten-free for over 6 months. I mention this so you'll consider a longer trial (of a few months) so you can get a clear picture of what helps.... I don't understand why the doctor would want you to re-introduce gluten after four weeks to "see what happens". He already knows what happens because she is eating gluten now... I don't get that logic.

Anyway, it's something to consider. :)

Best of luck to her with her tests and with starting the gluten-free diet; I hope it goes smoothly.
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#17 mommida

 
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Posted 01 February 2013 - 07:32 AM

Sorry for off topic stuff.

4 weeks is not a long time and if there is another food intolerance issue that is going to add to the confusion. Keep a food journal. I say journal because write down everything. Location of where food was consumed. (is school a source of cross cantamination, snack at a friend's house?) How long it takes to digest food depends on amount of liquid, activity level, amount of food and food's consistancy.

When my household went gluten free, I apparently had a cross-contminated bottle of vanilla. With out that journal I don't know how I would have tracked down 1 teaspoon added to various things!!?
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#18 mommida

 
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Posted 01 February 2013 - 07:37 AM

Do you have a hard copy of the biopy results? Just to see what has been ruled out, and where further testing may lead.

Honestly I don't know why they didn't try allergy testing yet. (Not helpful in our medical experience, and Celiac is NOT an allergy)
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#19 Worried mommy

 
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Posted 01 February 2013 - 01:05 PM

Do you have a hard copy of the biopy results? Just to see what has been ruled out, and where further testing may lead.

Honestly I don't know why they didn't try allergy testing yet. (Not helpful in our medical experience, and Celiac is NOT an allergy)


I do have a copy of her test what are you looking for its multiple pages long. Do you mean that maybe in the biopsy they weren't searching for the right things?
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#20 mommida

 
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Posted 02 February 2013 - 10:18 AM

Well some things are considered "rare" and can hide in "normal" looking tissue. Like eosinophils in a case of Eosinophilic gastrointestinal disorders. Eosinophils become visible with red dye, so only if the test was ordered by the doctor will the pathologist put the dye on and count them.
A verbal description of "villi blunting" can also describe Celiac damage with out some doctors diagnosing Celiac. ("Marsh scale" results?)

So in one of my daughters endoscopy with biopsy reprts (for (Eosinophilic Esophagitus) there was no mention that moderate chronic inactive astritis was part of the written report. The duodenum mucosa with no significan histopathological alteration was not mentioned, but as a patient caregiver I want to know what's going on. The doctor was just all over the EE diagnoses.

What did the doctor look for? What was ruled out? What things are showing up that are at least part of this puzzle?
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