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Moving forward

sdlane

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sdlane Rookie
sdlane
Posted

I had an endoscopy last month which show be to be a Marsh 3a category.  I'm gorging on gluten until the end of the month to make sure I'm fully glutenated (is that really a word??  lol) so the antibodies are heavily present and I don't get a false positive.  In terms of moving forward, I will obviously cut out the gluten once I'm done with my challenge.  I've already cut it out of my shampoo, conditioner, makeup, body wash products, thyroid meds, etc.  In fact, my whole household will go gluten free with me so I don't have to worry, except for when I travel.  What are your doctor visit and testing protocols once you start the healing process?  Will I need an annual endoscopy?  Monthly, quarterly or annual testing for antibodies, iron, magnesium, zinc, B12, D, etc?  Just trying to budget and plan.  Thanks! :)

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cyclinglady Grand Master
cyclinglady
Posted

Were you gluten free when you had the endoscopy?  Just wondering why you are gobbling up gluten for an antibodies test.  You would think they would have tested you the day you had the endoscopy (if they suspected celiac disease) or at least had you do it a few days later.     If you had been gluten free, most GI celiac-savvy, doctors require 2 to 3 months of consuming gluten (University of Chicago Celiac Website).  It can take that long for the antibodies to build.  

As far as post testing, that is typically an individual experience.  You can ask for vitamin and mineral deficiencies, but most of those will resolve quickly on a gluten free diet.  In my case, my doctor just kept checking my thyroid (it was swinging hyper to hypo) and my anemia (I have a genetic anemia, plus being iron deficient).  The anemia resolved in just a few months.  So, I knew the diet was working and I had been cooking for my gluten-free hubby for 12 years so I knew the gluten-free diet well.    I also had a bone scan after I fractured two vertebrae doing NOTHING two months after my initial diagnosis.  I did not get antibodies testing until two and half years later when I was glutened.  My symptoms were different from when I was diagnosed (just anemic), so I was not sure I was actually glutened (but I had been :().  

The University of Chicago does recommend testing three to six months after the initial diagnosis: 

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  Maybe I will have another endoscopy, like member Peter, on my five year anniversary!  

  • 2 weeks later...
frieze Community Regular
frieze
Posted

i too, am wondering why you are having the blood tests after a positive endo?  i thought the endo was the "gold standard"?

cyclinglady Grand Master
cyclinglady
Posted
3 hours ago, frieze said:

i too, am wondering why you are having the blood tests after a positive endo?  i thought the endo was the "gold standard"?

It is in conjunction of a positive blood test.  Villi damage can be caused other other things like tropical sprue, milk or soy intolerance.  I am trying to find the U of Chicago's list, but they have revamped their website.  

  • 2 weeks later...
sdlane Rookie
sdlane
Posted
  • Author

So I ended up with plenty of antibodies.  Got my labs back this week.  Thanks for your replies.  The GI I see at University of California, San Francisco also ordered a colonoscopy.  That was fun..not!  Maybe that was to rule out Crohn's?  Regardless, it's official. :) 

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