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Newly Diagnosed couple of questions

TrainInVain

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TrainInVain Apprentice
TrainInVain
Posted

Just got my diagnosis last Thursday and couple questions.

1) Do doctors continue to test and monitor with t-Transglutaminase (tTG) IgA blood tests? I know I have to go 100% gluten free and am working on it, but does that measure how well you are doing at elimination gluten?

2) After going gluten free, how soon after accidentally eating something with gluten would you know it ?

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cyclinglady Grand Master
cyclinglady
Posted

Welcome!

1) Follow up testing is advised.  Are measuring your antibodies a good indication that you are adhering to the gluten free diet?  Celiac experts think so, but the tests were designed to help diagnose celiac disease.  They are not perfect, but they are the only tool in the toolbox for now.   Biopsies obtained via endoscopy are still the best means of diagnosing and monitoring celiac disease.  The problem is an endoscopy is expensive and invasive. 

Here is the recommendation from the University of Chicago for follow-up Care.  Share it with your GI or PCP.

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2) you will know......everyone is different, so you will get a different answer.  

TrainInVain Apprentice
TrainInVain
Posted
  • Author
3 hours ago, cyclinglady said:

Welcome!

1) Follow up testing is advised.  Are measuring your antibodies a good indication that you are adhering to the gluten free diet?  Celiac experts think so, but the tests were designed to help diagnose celiac disease.  They are not perfect, but they are the only tool in the toolbox for now.   Biopsies obtained via endoscopy are still the best means of diagnosing and monitoring celiac disease.  The problem is an endoscopy is expensive and invasive. 

Here is the recommendation from the University of Chicago for follow-up Care.  Share it with your GI or PCP.

Open Original Shared Link

2) you will know......everyone is different, so you will get a different answer.  

Thanks : ), I did have an oscopy-on-both-ends and the upper revealed, "a lot of inflamation from acid reflux," and they biopsied. The GI ordered follow up blood tests and then she confirmed the celiac diagnosis. They also dilated my esophagus and she said I should repeat the upper in a year.

Mea0714 Newbie
Mea0714
Posted

I am just curious how many people with celiac have previously been diagnosed with RA and fibromyalgia. And if so are your symptoms better, worse or the same?  Tia

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      Thank you so much! And sorry for not responding sooner. I've been scouring the hospital records and can find nothing other than the following results (no lab info provided): Component Transglutaminase IgA   Normal Range: 0 - 15.0 U/mL >250.0 U/mL High   We live in Olympia, WA and I will be calling University of Washington Hospital - Roosevelt in Seattle first thing tomorrow. They seem to be the most knowledgeable about complex endocrine issues like APS 2 (and perhaps the dynamics of how APS 2 and Celiacs can affect each other). His diarrhea has not abated even without eating gluten, but that could be a presentation of either Celiac's or Addison's. So complicated. We don't have a date for endoscopy yet. I will let my husband know about resuming gluten.    Again, thank you so much for sharing your knowledge with me!
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