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Good news and pumped after upper GI follow-up!


trents

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trents Grand Master

I was diagnosed with celiac disease about 16 years ago but a couple of upper GI endoscopies within the first three years of diagnosis showed villi blunting still unchanged. I was discouraged then because I was making every effort to eat gluten-free. I had pretty much concluded I had the refractory type of celiac disease. A couple of weeks ago, however, I was referred by primary care to my gastro doc for followup of a FIT stool test that was positive. The FIT test was ordered in response to three episodes of protracted vomiting with a week and a half. I thought I saw what could have been blood in the puke from one of those episodes. Or maybe it was a pimento or a chunk of tomato. It can be difficult to visually discern those things under the circumstances.

Since my gastro doc had already done a colonoscopy back in December he opted for an upper GI this time which showed no lesions. But there were two pieces of unexpected good news:

1. My hiatal hernia measured 2.5 cm intead of 9 cm as it had been measured originally, some years ago. Doc said it is difficult to get accurate measurements on those because of distortion from movement of the scope but he said it certainly had not enlarged any.

2. And the best news was that my villi now looked healthy. That's a big PTL! Since retirement, my efforts at eating gluten free have paid off. I now have more control over where I ate and what I ate than I did in my working years even though I did my best back then.

The reason for the positive FIT test is still uncertain but I probably should have waited longer after my last episode of emesis before taking the test, especially since I'm on a blood thinner. The GI doc thought the positive FIT was likely caused by trauma from the vomiting.


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cyclinglady Grand Master

What fantastic news!  

I think your GI is probably correct in that all that vomiting could have caused the blood in your test, especially since you just had a colonoscopy in January.  Will he have you repeat the test in a few months?  

Like you, I think my health has improved, the stricter I have become with my gluten free diet.  For me, it includes avoiding processed foods as much as possible and eating out at only dedicated gluten-free restaurants.   

icelandgirl Proficient

I'm so excited for you!  So great to get news that your villi are healthy!!

trents Grand Master

I assume you mean the FIT when you inquire about the GI doc repeating the test. He did not mention that and I got the impression he's not a real fan of the FIT since a positive result can be produced by so many things that are just transitory in nature. But I'm sure my primary would be open to it.

cyclinglady Grand Master
12 hours ago, trents said:

I assume you mean the FIT when you inquire about the GI doc repeating the test. He did not mention that and I got the impression he's not a real fan of the FIT since a positive result can be produced by so many things that are just transitory in nature. But I'm sure my primary would be open to it.

Does your primary offer it every year?  If so, consider taking it again.  I am not a doctor, but I would think it would be prudent.  Again, with a clean colonoscopy, I think you do not need one for another 10 years and that FIT test was probably tripped by other issues (like all that vomiting you described and being on a blood thinner).  

 

healthysquirrel Enthusiast

So glad for you about the good news. YAY!

trents Grand Master
4 hours ago, cyclinglady said:

Does your primary offer it every year?  If so, consider taking it again.  I am not a doctor, but I would think it would be prudent.  Again, with a clean colonoscopy, I think you do not need one for another 10 years and that FIT test was probably tripped by other issues (like all that vomiting you described and being on a blood thinner).  

 

Not sure if my primary offers the FIT annually but I'm sure she would be willing to order it again seeing as how it was positive recently. Yes, it would be prudent. I agree.


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    • trents
      Welcome to the forum, @ABP! We can't comment on the test numbers you give as you didn't include the range for negative. Different labs use different units and different ranges. There are no industry standards for this so we need more information. If your daughter doesn't have celiac disease she still could have NCGS (Non Celiac Gluten Sensitivity) which some experts believe can be a precursor to celiac disease and is 10x more common than celiac disease. However, there is no test for it yet but it does share many of the same symptoms with celiac disease. Both require complete abstinence from gluten.  It is seldom the case during testing where all tests are positive, even for those who do have celiac disease. This is no different than when diagnosing other medical conditions and that is why it is typical to run numbers of tests that come at things from different angles when seeking to arrive at a diagnosis. It seems like you are at the point, since you have had both blood antibody testing and endoscopy/biopsy done, that you need to trial the gluten free diet. If her symptoms improve then you know all you need to know, whatever you label you want to give it. But given that apparently at least one celiac antibody blood test is positive and she has classic celiac symptoms such as slow growth, constipation and bloating, my money would be on celiac disease as opposed to NCGS.
    • ABP
      My nine-year-old daughter has suffered with severe constipation and bloating for years as well as frequent mouth sores, and keratosis Polaris on her arms. She also has recently decreased on her growth curve her % going down gradually.  After seeing a gastroenterologist, her IgG GLIADIN (DEAMIDATED) AB (IGG) was 22.4 while her IGA was normal. Her TISSUE TRANSGLUTAMINASE AB, IGA was 11.9.  Most recently her genetic test for celiac was positive.  After an endoscopy her tissue showed inflammation of the tissue as well as , increased intraepithelial lymphocytes (IELs) but there was no blunting of the change in the villi.    It seems that every result that we get one out of two things positive rather than all leading to an inconclusive diagnosis. While we do have another appointment with the doctor to go over the results. I'm curious based on this information what others think.    I would hate to have her eliminate gluten if not necessary- but also don't want to not remove if it is necessary.    Signed Confused and Concerned Mama
    • Scott Adams
      I guess using "GF" instead of "PL" would have been too easy! 😉
    • trents
      I was wrong, however, about there being no particular health concerns associated with high total IGA: https://www.inspire.com/resources/chronic-disease/understanding-high-iga-levels-causes-impacts/ So maybe the physician's "borderline" remark is relevant to that.
    • trents
      Sometimes that is the case but what is curious to me is the remark by your physician about being "borderline". I assume he was referring to the total IGA score but it just seems like an irrelevant remark when it is on the high side rather than being deficient.
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