Questionable Endo Report

[MominSoCal]

Well - i wasn't happy when doc told me DD did not test positive on biopsy after positive blood test.  I asked for copy of path report, and I am really questioning the fact he took only 4 samples and he didn't give me all the results!

 

2 from Duodenum - which were negative. One from bulb area

One from stomach, showing mild chronic gastritis (which he did not tell me about)

One from esophagus showing squamous mucosa with chronic inflammation and rare eosinphils (again did not tell me)

 

I am stuck with this ped GI, so I can't switch.  We are already gluten-free as of Sunday and we will look for improvement.  Just wondering if gastritis and/or the inflammation can be from Celiac?

 

thanks

 

[MChase]

  On 10/30/2013 at 12:37 AM, MominSoCal said:

Well - i wasn't happy when doc told me DD did not test positive on biopsy after positive blood test.  I asked for copy of path report, and I am really questioning the fact he took only 4 samples and he didn't give me all the results!

 

2 from Duodenum - which were negative. One from bulb area

One from stomach, showing mild chronic gastritis (which he did not tell me about)

One from esophagus showing squamous mucosa with chronic inflammation and rare eosinphils (again did not tell me)

 

I am stuck with this ped GI, so I can't switch.  We are already gluten-free as of Sunday and we will look for improvement.  Just wondering if gastritis and/or the inflammation can be from Celiac?

 

thanks

From everything I read, you need to have 4-7 samples from your small intestine.  I am in a similair situation.  My PCP said I had either Celiac or Ulcerative Colitis and sent me to the GI for testing for both of these.  The GI did not do any blood tests but opted to do a colonoscopy and EGD.  When the nurse called with the results, she said the Dr took essentially 7 biopsies (1 from esophagus, 1 from stomach, 1 from left side of intestine, 1 from right side of intestine, 1 from small intestine) to my calculations, that is only 5 but only 1 from small intestine. He said I had gastritis and excessive acid in my stomach.  I feel like I wasn't even tested for Celiac .  He put me on Prilosec and told me to come back in 3 months.  I started gluten free on Saturday and already my intestines feel better.  

 

Good luck to you.

[nvsmom]

It isn't raer to have positive blood work and a negative biopsy, or vice versa, but doctors seem to act as though it is.    If you ask around, you'll find more people here with the same  situation as your daughter.

 

I'm glad your DD is gluten-free now and you trusted the blood work. I hope she feels well soon.

[Cara in Boston]

Positive blood work and a positive reaction to the gluten free diet should be enough to diagnose your daughter.

 

A negative biopsy ONLY means that damage was not found.  It does NOT mean you do not have celiac.  Damage might not be found for lots of reasons:  did not biopsy damaged spot, not enough damage to measure (yet), test results misinterpreted, etc. etc.  The biopsy is not an exact science.  Why it is considered the "gold standard" I don't know.

 

 

If your symptoms are consistent with celiac disease, your blood tests positive for antibodies, and you feel better gluten free, it is obvious you have celiac disease and you should behave accordingly.  Notify first degree relatives to get tested, remain on a strict gluten-free diet, and start feeling better . . .

 

After my son was diagnosed (by blood and biopsy) I realized I had all the classic symptoms since being pregnant with him.  I took a blood test, it was positive.  I went gluten free - five years of symptoms were gone within days and weeks.  When I accidentally eat gluten, I get very ill.  

 

Since my biopsy was negative, my GI still won't diagnose me with Celiac Disease.  He will only diagnose me with "Gluten Intolerance".  Really?  My regular doctor (and my son's Celiac Specialist) think this is just ridiculous.  It is so obvious that I have it.

 

Trust your gut (no pun intended) and give the diet a try.  Be strict and try it for 3 months.

 

Cara