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DJB53

Endoscopy after years of being gluten free?

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Some background: I self-diagnosed myself with celiac disease about 12-15 years ago, as I had all the most classic symptoms.  I always had mouth ulcers every few months as far back as I can remember, and then in college I got the bad digestion - after 2 or so years of that I read about celiac online, decided it sounded like me, and tried going gluten free.  Things improved significantly, I wondered if it was all in my head and tried a soft pretzel, and it hit me bad.  Since then I've been eating gluten free, I no longer get mouth ulcers, etc.  Every once in a blue moon I'll be eating out and eat something that might be a little more questionable than I should (sometimes it's tiring making restaurants understand what you need about cross contamination etc, it was especially bad like 8-10 years ago before it became more well known), and if I did hit gluten I'd get a mouth ulcer and stomach issues within a day or two.  

So, bottom line is, I'm 100% convinced I have celiac, but have no doctor's official diagnosis.

I went in to a gastroenterologist this week because I still have some digestive issues (I have a feeling it's IBS and nothing they'll be able to do for me, but figured I should see if they could help because it's impacting my life negatively).  I told him my symptoms etc, and told him I was self-diagnosed celiac and have been gluten free for years.  He says it sounds like I have celiac, but he wants to do an endoscopy anyway, and he says they can check for miscroscopic damage from before and possibly give a definite diagnosis of celiac from that.  

From everything I've read online, I need to be eating wheat for like 2-3 months before having an endoscopy for a definitive diagnosis of celiac.  Is there any chance that after being gluten free for years that they could still see something to diagnose it?  Or is my gastroenterologist uninformed or just wanted me to do a test to make some money for himself?  He did say that if they didn't find anything he might want me to do a gluten challenge and get it re-done.  I probably will refuse to be sick for 2-3 months to prove something I already know, so is it worth it to get it done in the first place?  

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Unless you have been glutening yourself accidentally (possible if you are still having symptoms) you are correct that you would need to do a challenge for diagnosis. Have they done a celiac panel? That is the first step. If they did and that came out positive then it is possible that you could have a positive biopsy.  You may want to read over the 'Newbie 101' thread at the top of the Coping section to be sure you have been doing all you need to do to stay safe if you are celiac.

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A little over a year ago I had some of the celiac tests done as part of my blood test with my regular doctor, and the DGA IGG test was slight positive.  The current GI doctor didn't say I should get blood tested again now.  Since I've been gluten free for years, and very rarely get a few crumbs of cross contamination, and none for a long time now... I don't think I'll show much symptoms of celiac now.  If it's been a long time since I've even gotten cross contamination glutened... can an endoscopy see damage from years ago?  Or is going for the test now just a waste of money?

 

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Well, it probably will not show any damage from celiac disease if you have been on a gluten free diet, but it could help determine the cause of your current IBS-like symptoms.  Things like SIBO, H.Pylori, Crohn’s or Ulcerative Colitis should be ruled out.  

I just had a repeat endoscopy after five years.    I was having lots of issues.  Even my DGP IgA was very elevated.  Turns out my villi are healed.  I was diagnosed with autoimmune chronic gastritis and they removed a polyp that was not malignant.  So, I was blaming celiac disease, but I was wrong.  The antibodies tests used for follow-up compliance to the diet are good, but not perfect.  It is the only tool in the toolbox for now that is not invasive.  I am relieved to know that I have been Diet compliant.  

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