gallbladder removed when it could have been celiac!

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Endoscopy shows I could have celiac.  Was never told to me at the time so they took my gallbladder out.  I still have pain on my right side even though I've been gluten free since Feb.  anyone having celiac with right side pain?  Thank you

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  • Posted

    If you have celiac, being gluten free should get rid of your pain.  Either some of the foods you are eating have trace elements of gluten and that is why you still have pain or you don't have celiac.  Being told 'you could have celiac' doesn't sound like a definite diagnosis. If your pain is right sided, it sound more related to your gallbladder removal which can cause complications.  Try cutting out fatty, rich and spicy foods from your diet and follow a bland diet.

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    • Posted

      That's what's so frustrating about doctors!!!!!  I can't figure out how to send a picture to you.  I could show you what my test result says.  When I showed my nurse pract the results she couldn't believe this wasn't discussed in 2015 when the test was done.  On my own I stopped eating gluten since Feb.  she just did a celiac panel.  Everything I've read says you have to be consuming gluten for the test to be at all accurate.  So why did she do the test now?  Now they want me to do another endoscopy.  

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    • Posted

      To send a picture, alll you do is click the fourth icon on the top right hand corner of the message box.  You should be able to see an icon for bold, one for italics, a smiley face and then one that looks like moutain peaks with a dot above it.   This is the one you use to send pictures.  If you still have problems with this, it is explained on the help menu on this site.  

      Your doctor should have explained to you that you have to be eating gluten before a celiac test.  If you were not told this, it is very surprising indeed.  Even then, the celiac blood test is not always reliable and can show false negatives.  However, if this happens and your doctor still thinks you have celiac, an endoscopy would be done which is very accurate and would confirm whether or not you have it.

      Did your symptoms improve dramatically when you cut out gluten? If they did  this may suggest celiac or non celiac gluten intolerance where you can eat a small amount of gluten without getting symptoms.  Anyway, another endoscopy should be able to give you answers one way or the other.

       

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    • Posted

      I'm on a smart phone and don't have the upper corner icons to send picture.  I am taking the time to copy what the report says for a couple reasons.  1.  Is because you seem like your interested and 2. Because I am frustrated and hope sobeobe will see what I write and actually give me some good advice.  I'm imagining this is going to take more then one box so here goes.    Small bowel mucosa biopsy .

      1. Small bowel mucosa with architectural changes suggestive of celiac spruce/gluten sensitive enteropathy ( crypt ratio-<3:1/ flat mucosa)

      2.  Intraepithelial lymphocytisis is identified by CD3 immunoperoxidase stain.

      COMMENT

      20 lymphocytes, as quantified by CD3 immunohistochemistry, per 20 enterocytes at the billows tips are counted.  Six or greater lymphocytes/30 enterocytes is considered increased.  Correlation with clinical symptomatology, serologic studies & effects of gluten - free diet is required to confirm a diagnosis of celiac spruce.  I had been suffering with chronic RUQ pain for months.  Went to the ER when I couldn't take it anymore.  They did the endoscopy to see if I had a stomach infection. Etc....  the next day they took out my gallbladder.  They never spoke of this test.  Because I continue to have such pain (was referred to another doctor and had the SOD surgery) I can look at my tests with the my chart epic system.  I am the one that has to bring this test to the doctors attention.  I've been to Mayo as well and not one doctor has brought this up.  I live in constant RUQ pain as well done mild joint pain and I had in the thick of things a few terrible Migrain headaches etc....  I get why you said they wouldn't just say they think I could have celiac.  Now I think they are covering their asses because they should have told me this when they took the test.  Instead of just taking out my gallbladder I could have tried to go gluten free .  I seem to have to do all of the work to try and rid myself of this pain.  

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    • Posted

      Maybe they found gallbladder inflammation and that's why they took the gallbladder out and at the same time found celiac as well. Why they didn't tell you about the celiac test, I don't know.  The only thing I can think of is that a mistake has been made and that is why you were not told   Doctors often go suddenly quiet when they are trying to cover up an error.

      They should have mentioned it so you could begin a gluten free diet straight away and start managing the condition.   I would see your doctor again and ask about what was found with the gallbladder.  I wouldn't think they would have removed it for no good reason.  I would stick with the gluten free diet to see if your symptoms get better.  If you do improve, it would suggest celiac or even non celiac gluten intolerance.  If there is no improvement, it may suggest a post gallbladder removal complication since you are having rightsided pain and this is where the gallbladder is located.

      It would also be worthwhile to ask your doctor to explain your report to you in plain English because medical speak is very difficult if not impossible to decode for non medics like ourselves.  Other than the mention of celiac, the rest of it reads like double Dutch to me.

      I don't know whether any of this helps, but I think there are two things going on here and both need a full, clear explanation.  You may even need to see someone else again to get a fresh opinion on this.

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