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nosy parker

Member Since 17 Mar 2013
Offline Last Active Jul 02 2013 05:52 PM
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Topics I've Started

How Useful Are Blood Tests For Kids?

02 July 2013 - 03:23 PM

Just wondering, since the blood tests don't seem to me to be a great detector of celiac (of course this is just my impression).  How likely are they to be useful for kids?  I decided after my ongoing saga to go ahead and test my boys.  They are doing the TTG-IgA and IgG, as the other tests you all reference don't seem to be available here. 

 

They are 11 and 12.


Does Diagnosis Get You Blackballed?

12 June 2013 - 07:37 PM

I was speaking to a pediatrician today about my never-ending celiac saga. Although my endo showed some evidence, biopsy was negative.   I explained that my real concern is for my kids and this is what worries me.  She advised me to go and get gene tests to at least see if I have those.

 

But what really surprised me was that she told me NOT to get my kids gene tested.  She said that their future would be seriously affected by a positive gene test regardles of whether they were diagnosed with celiac or not.  She said just the fact that they had the genes would mean getting any kind of life, medical, mortgage insurance would be next to impossible.  She actually said she wished more doctors would explain that to patients.

 

So I'm wondering, is this true?  Have any of you experienced this? 

 

It really made me reconsider some things.  It's hard to believe you would have to choose between your health or uninsurability.


Me Too, Me Too! Endoscopy Report- Need Help With Results, Please.

11 June 2013 - 10:23 AM

So I was finally able to obtain both my endoscopy report issued by my doctor after the procedure and the pathology report.  It doesn't seem very detailed and I'm a bit surprised by what's written.

 

Endo report (with photos)

 

Findings:  Normal esophagus.  Normal stomach (#2).   Rather clear scalloping of D1/D2 both biopsied aggressively to r/o celiac which is very possible here (#1).

 

 

Final Pathology report

 

1.  Duodenum (endoscopic biopsy):

       -  small intestinal mucosa with no significant pathology

2.  Stomach (endoscopic biopsy):

      - gastric antral and oxyntic mucosae with no significant pathology

 

 

That's it for the pathology report.  What the heck is that?  My doc took 11 samples of of D1 and 5 of D2.  Doesn't seem very detailed. Obviously my GI thought that Celiac was a good possibility.  What does "no significant pathology" mean? 

 

Uuughh!  Does the scalloping in both areas of the duodenum (he wrote duodenal bulb & duodenum 2nd part) mean anything?  Could it be caused by something else? 

 

What do you think?  Any help would be sooooo appreciated!


Disappointing Endo Results

27 May 2013 - 02:24 PM

Just got back from my follow-up appointment.  Seems everything is normal.  GI said he took 11 samples and that everything came back as "normal".  Very disappointed.  Suppose I should be happy, but I can't say I am.  Still no real answer as to why I feel like this.  I cannot believe that it's normal to have regular stomach pain.  Not discomfort, real pain that makes you double over at times.  And unexplained low ferritin.  And although not "officially" deficient in B12, my level is on the very low side of normal.

 

Anyway, so fed up.  I truly believe that my GI was very thorough.  I can't force this diagnosis.  He did say it could be a gluten intolerance as well.  But he still thinks IBS.  Feels like I've wasted a year going through this long process, for nothing. 

 

Thanks everyone for your support in my previous posts.  It was very much appreciated.


Urologist Wants To See Me About Kidney. Worried....

17 May 2013 - 02:54 PM

Ok, so yesterday my GP called with results of my blood work.  Everything was great according to her.  My liver, my kidneys, my cholesterol etc... except for low ferritin.  So I was happy that all sounded good, but still wondering about the low ferritin.

 

My GI did my endo Apr. 2 and his secretary called to schedule me back on May 27th.  They don't call for follow-ups for nothing so I assume there's something.  But it wasn't urgent obviously because that was still quite some time away.  I kinda thought "aha I'm right, he found celiac".  I guess I'll find out in 10 days.  In the meantime he had also sent me for CT enterography (abdomen) to rule out crohn's before he even got results of the endo.  I like that he's thorough.

 

WELL, today when I got home I had a message from a urologist that wants to see me next Wednesday.  I was scheduled because of a consult request from my GI.  I thought "A urologist??? What the heck???"  Anyway called his office and his secretary told me it's because of my kidney and that my GI had made the request.  I'M FREAKING OUT!!!  Obviously something came up in the CT scan.  I'm thinking the worst now. OMG! I'm completely freaking out.  It's a holiday here on Monday so I probably won't be  able to reach my GI to ask questions.  I have no symptoms of kidney issues whatsoever.  They didn't refer me to a nephrologist.  If it's a urologist it makes me even more worried. They only touch kidneys when it involves bad stuff requiring surgery.  And of course I looked up his bio and he specializes in laparoscopy nephrectomy to remove cancerous kidneys. He's listed as general/oncological urology. 

 

I can't understand that nobody bothered to call me to explain anything and just left me to wander my mind alone.  I'm freaking out.