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Wrong Diagnosis After Biopsy; Gi Doctor Calling Tomorrow - ?s To Ask?
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3 posts in this topic

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
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Ads by Google:

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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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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    • Thankyou both! I was wondering if my high levels left much doubt on the diagnosis. I don't see the GI until the 15th Sep and I don't think I can stand to eat gluten in that time. If he tells me to I will do so after then. After 25 years of symptoms I don't think there is much chance of healing my bowel In a couple of weeks. I'm actually terrified of the damage they might find. But I think I will need the endo since there may be other things going on with me. So great they didn't put your son through the biopsy! Once I have a formal diagnosis I have my kids to worry about also. I can't even stand the thought of my daughter having a blood test. I think she would need to be sedated as she is so fearful and pain sensitive. My son is not yet 2 so I don't think they will test him. I'm feeling so off at the moment. I think I have some anxiety and reflux going on complicating things quite a bit.
    • My son's antibodies were 300. Based on his extremely high levels, his pediatric GI suggested genetic testing instead of the biopsy. Genetic testing can't diagnose celiac on its own but combined with such high levels, the gi dr was confident a positive genetic test would confidently diagnose celiac. He warned that biopsies are small snapshots of the intestine and can miss damage. He said this is an approach used very often in Europe but not as much in the US. What sold me on that approach was the ability to put my son directly on a gluten free diet instead of waiting three weeks for the biopsy, during which time he would continue to eat gluten and feel terrible. I'm not sure if this is more common with younger patients though (our son is two), based on the idea that he's had less time to inflict damage that would show in a biopsy? We are very happy that we immediately started the gluten free diet and chose the genetic testing. Our son got the proper diagnosis and his recent number shows a drop to 71 after only 4.5 months gluten free! Not sure if this helps. Good luck and I hope you feel better soon!
    • We have been off gluten for a while now, and symptoms return when I've allowed gluten full meals… so something still isn't sitting right with me.  Checking with her doc about seeing a pediactric GI although I'm not sure how long that will take since we live in small town America. I know she didn't get at least one of the recommended full panel tests but maybe two, can someone help clarify, or is she missing two? DGP for sure and possibly EMA? And if I understand what I'm reading in other posts that the DGP can be more accurate? Thanks Her blood panel results: Ttg ab iga <.5u/ml ttg igg <.8u/ml aga ab iga <.2 u/ml aga an igg <.7u/ml iga 61mg/dL  
    • I was tested for the full panel, I believe. I had normal values for t-transglutaminase (ttg) igg,t-transglutaminase (ttg) iga, deamidated gliadin abs igg, deamidated gliadin abs iga, and immunoglobulin a qn serum.  
    • Going gluten free may be beneficial if you're among the roughly 10 percent of people who suffer from celiac disease, a genetic immune disorder, ... View the full article
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