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Wrong Diagnosis After Biopsy; Gi Doctor Calling Tomorrow - ?s To Ask?

Still Celiac Disease?

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2 replies to this topic

#1 quirkinator

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Posted 04 November 2012 - 03:22 PM

Most important part at the bottom... Sorry this is long, but all relevant. :)

My GI doctor was conveniently out of the country when the results of my biopsy came back. His colleague, another GI doctor fresh out of medical school summed it up to GERD. I never have heartburn, and question this diagnosis, as does my family and friends. My brother has the same symptoms as I do, to a lesser degree. He is 24. My grandmother's aunt had Celiac, and my mom's sister is gluten insensitive... Little family history for you. My father's father had a hiatal hernia. I have had an upper endoscopy with biopsy and a colonoscopy. Supposedly the bloodwork was all normal too, except they conveniently misplaced by IBD serology. Celiac bloodwork has been ordered, and I plan on getting that done tomorrow. Here are my symptoms that I posted a few weeks ago to this forum:

For the last year and a half, I wake up each morning, and vomit either bile or last night's dinner (completely undigested). I get nauseous throughout the day, and sometimes after I eat. Also, I have diarrhea, or loose stool that is sometimes bloody. In addition, I have lost about 25-30lbs over the last 9 months. I do not have much of an appetite, and when I do eat, little meals make me full. My belly gets really big as if I am pregnant, and then my stomach gurgles loudly for hours. In addition to these symptoms, I am on cochicine for PFAPA, a very rare auto-immune disorder. And, to top all that off, I have been getting migraines about once per week for the last two years, and I have a lot of hair loss. Last week I went to a gastroenterologist and will be having a colonoscopy, upperendoscopy, gastric emptying test, stool test, and a bunch of blood work. I am afraid of what this might be. Any ideas/support/suggestions would be helpful. I am a 29 year old female of Jewish European ancestry, if that makes a difference. Lastly, all my blood work came back normal, except an elevated bilirubin (dehydration?).

The blood tests the gastroenterologist ordered:

CBC
Comprehensive Metabolic Panel
SED rate
CRP
(all above came back normal except bilirubin elevated; all below still processing)
IBD Serology
Fecal WBC
Fecal calprotectin
Fat stain fecal

The note from my doctor's colleague:

I hope you have been doing well since your procedure. At the time of your procedure, I took biopsies to look for changes that could explain your symptoms. The biopsies of your esophagus showed irritation, likely due to stomach acid reflux. This is a common condition (called GERD), that can cause nausea. If you have not tried an acid lowering medication for your nausea, I recommend talking about this with Dr Rosen at the time of your upcoming phone visit. The biopsies of your small intestine were normal (no sign of celiac disease).

When my doctor calls tomorrow after my gastric emptying test and bloodwork, this is my question for all of you... What questions should I ask? I really want to get to the bottom of this. Thanks!

Edited by quirkinator, 04 November 2012 - 03:33 PM.

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#2 mommida

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Posted 07 November 2012 - 06:54 AM

Ask what the eosinophil count was.

I advise you to research Eosinophilic Esophagitus.
Barret's esophagus
Nutcracker Syndrome

Now when you look at the results, know why these possible disorders were ruled out, if they were even tested for.

Could you please give further details about PFAPA?
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Michigan

#3 GottaSki

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Posted 07 November 2012 - 06:35 PM

I'm a bit late to add questions for your call from your doctor, but were any of the antibody blood tests for Celiac Disease run? With your symptoms, you should have a full celiac blood panel along with nutrient testing beyond the CMP.

The endoscopic biopsies do not always catch Celiac Disease as the damage can be spotty or not yet severe.

Request written or electronic copies of all your blood work, endoscopy and pathology reports. Often language on these reports can provide important information.
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-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)



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