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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
      No. That is, unless the dietician themself has a gluten disorder or is managing a close family member who does and therefore is immersed in it daily so as to be up on the nuances of eating gluten free. Otherwise, they just give you very general information which you can get online.  
    • trents
      Yes, a very cryptic and uninformative lab result report indeed! But it does seem like this is typical for the UK. It's almost like the "professionals" in that healthcare system don't want you to try and figure anything out for yourself.
    • xxnonamexx
      Thanks for the explanation. Do you think a dietician is required? I see people ask about getting one but what now will they help with besides charge you to say start away from gluten.
    • trents
      Wow! I think the answers to your questions seem obvious to me but I'll oblige you. It's invasive because they are running a scope into an orifice and down through much of your body. Any procedure that invades the body is invasive. It's expensive because you are paying a trained professional (a doctor) to do it, plus nurses and an anesthesiologist plus you are using expensive equipment. It may not be expensive to you, depending on your insurance plan, but it is expensive as far as the health insurer is concerned. It involves some risk because you would be put under anesthesia and because there is always the danger of tearing something with the scope on the way down through your esophagus, stomach and into your small bowel.    
    • RMJ
      Maybe your followup is for the elevated total IgA, and not for celiac. It is strange not to have a numerical result for the tissue transglutaminase. I hope you get answers in the followup with your GP.
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