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Hi - Questions Before...


AmandaD

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AmandaD Community Regular

Hi again,

All right - so tomorrow's my 6-month re-check. My D has left me and I seem to be doing fine. What should I be talking to about with the doctor tomorrow? Do I have to have more tests?

I'm kind of nervous - I keep having this image of them pulling out a "surprise" endoscopy tomorrow while I'm sitting there...hee, hee...

Amanda :D


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dlp252 Apprentice

Ha, well, you might be safe on the surprise thing unless you have an emergency...I think they usually like to have the stomach empty before they do it. By-the-way, I had one last Monday and it was just fine...I slept through it...had it at the same time as my colonoscopy, and whatever sedative they gave me, just made me sleep through the whole thing. I do have lovely pictures though. :lol:

Can't help with questions though since I'm just now going through the first round with this doctor. I see him tomorrow for the results of my scope and I'll ask him about retesting.

jerseyangel Proficient

At my 6 month, the doctor asked me how I was doing with the diet, and if the D was improving. He asked if I needed any meds for cramping and told me to come back in a year. Short and sweet :D Hope your appt goes well!

AmandaD Community Regular

Thanks Guys.

Actually an endoscopy doesn't sound so bad. 3 hours of uninterrupted sleep with noone screaming for milk or a diaper...if you know what I mean...

JessicaB Explorer

Hello.

I have been gluten-free since december. My fup is in may. They told me they would redo the blood work, to make sure all of my levels are ok. Nutrients etc. Also they will look at the testing of the intolerance that originally diagnosed me. Maybe they will just talk to you, maybe they will also do the bloodwork> Good luck!

AmandaD Community Regular

Jessica - I'm looking at your signature - jeesh - you had to go through 2 biopsies? That sucks! And they ended up diagnosing you because of your bloodwork? What were your levels - was it the TTG...that sounds like quite an experience!!!!!!!!!

Hello.

I have been gluten-free since december. My fup is in may. They told me they would redo the blood work, to make sure all of my levels are ok. Nutrients etc. Also they will look at the testing of the intolerance that originally diagnosed me. Maybe they will just talk to you, maybe they will also do the bloodwork> Good luck!

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    • par18
      Thanks for the reply. 
    • Scott Adams
      What you’re describing is actually very common, and unfortunately the timing of the biopsy likely explains the confusion. Yes, it is absolutely possible for the small intestine to heal enough in three months on a strict gluten-free diet to produce a normal or near-normal biopsy, especially when damage was mild to begin with. In contrast, celiac antibodies can stay elevated for many months or even years after gluten removal, so persistently high antibody levels alongside the celiac genes and clear nutrient deficiencies strongly point to celiac disease, even if you don’t feel symptoms. Many people with celiac are asymptomatic but still develop iron and vitamin deficiencies and silent intestinal damage. The lack of immediate symptoms makes it harder emotionally, but it doesn’t mean gluten isn’t harming you. Most specialists would consider this a case of celiac disease with a false-negative biopsy due to early healing rather than “something else,” and staying consistently gluten-free is what protects you long-term—even when your body doesn’t protest right away.
    • Scott Adams
      Yes, I meant if you had celiac disease but went gluten-free before screening, your results would end up false-negative. As @trents mentioned, this can also happen when a total IGA test isn't done.
    • Seaperky
      I found at Disney springs and Disney they have specialist that when told about dietary restrictions they come and talk to you ,explain cross contamination measures tsken and work with you on choices. Its the one place I dont worry once I've explained I have celiac disease.  Thier gluten free options are awesome.
    • Churley
      Have you tried Pure Encapsulations supplements? This is a brand my doctor recommends for me. I have no issues with this brand.
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