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Question about tests and endoscopes.


KristyD

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KristyD Newbie

Brand new here. I had barely heard of celiac before one week ago and have a few questions. I've had stomach issues for years.. Mainly indigestion and reflux issues but frequent other stomach issues. Every time I would go to the doctor he would just increase my GERD medicine and never recommended a gastroenterologist or anything. Finally I went again about a month ago because I ended up vomiting up about half my meals and it  seemed to be getting worse. I had lost about 25 lbs since my previous visit the year before. He ordered labs and I showed to be significantly anemic.. And was low in BOTH iron and B12. Doctor referred me to a gastroenterologist which I saw last week. He said we would schedule an EGD and then almost as an afterthought when he saw my last blood work he ordered lab work to check for celiac. 

I was able to pull up my lab results online as of yesterday but have not received a call or any info from he doctors office yet. I was wondering if someone could answer a couple of questions of what it may mean. 

Anti-Gliadin IgA Antibody - 21 Units

Anti-Gliadin IgG Antibody - 6 units

I know IgA > 20 is indicative of celiac   But it's barely over.. Could this be a false positive.  Plus I have no idea what it means to have one slightly high and the other normal .  

Another question is I know celiac tends to be genetic.  My mother had very similar symptoms most of her life and had several EGDs .. Mostly to dilate her esophagus.  My brother also has similar symptoms and also had a recent EGD  he was told everything looked fine but as far as he knows they did not take biopsies.  My question is if someone has Celiac and has an EGD but the doctor is not specifically looking for celiac.. Can they miss a Celiac diagnosis?

hopefully I will hear from the doc soon to give some answers. But waiting is driving me crazy. Thanks  for any help! 


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cyclinglady Grand Master
1 hour ago, KristyD said:

Brand new here. I had barely heard of celiac before one week ago and have a few questions. I've had stomach issues for years.. Mainly indigestion and reflux issues but frequent other stomach issues. Every time I would go to the doctor he would just increase my GERD medicine and never recommended a gastroenterologist or anything. Finally I went again about a month ago because I ended up vomiting up about half my meals and it  seemed to be getting worse. I had lost about 25 lbs since my previous visit the year before. He ordered labs and I showed to be significantly anemic.. And was low in BOTH iron and B12. Doctor referred me to a gastroenterologist which I saw last week. He said we would schedule an EGD and then almost as an afterthought when he saw my last blood work he ordered lab work to check for celiac. 

I was able to pull up my lab results online as of yesterday but have not received a call or any info from he doctors office yet. I was wondering if someone could answer a couple of questions of what it may mean. 

Anti-Gliadin IgA Antibody - 21 Units

Anti-Gliadin IgG Antibody - 6 units

I know IgA > 20 is indicative of celiac   But it's barely over.. Could this be a false positive.  Plus I have no idea what it means to have one slightly high and the other normal .  

Another question is I know celiac tends to be genetic.  My mother had very similar symptoms most of her life and had several EGDs .. Mostly to dilate her esophagus.  My brother also has similar symptoms and also had a recent EGD  he was told everything looked fine but as far as he knows they did not take biopsies.  My question is if someone has Celiac and has an EGD but the doctor is not specifically looking for celiac.. Can they miss a Celiac diagnosis?

hopefully I will hear from the doc soon to give some answers. But waiting is driving me crazy. Thanks  for any help! 

Welcome!  

Well, you might not have all the results in yet.  Normally, doctors have been using the TTG tests to screen for celiac disease (to save money), but it looks like your doctor ordered the Anti-gliadin tests instead..  He should have run an IgA deficiency test just to see if the Anti-gliadin IgA test is valid.  Do you think those are the only tests he ordered? A full panel is best!  

In any case, it looks like a positive and that means further investigation.  You probably should go forward with 1) getting the complete celiac blood panel and and endoscopy.  Make sure that four to six biopsies are taken.  Best to read up more about celiac disease and proper testing to insure that you are getting the best care.

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Celiac disease is genetic, so all first degree relatives should be tested.  Can you miss damaged areas during an endoscopy?  You bet.  That's why four to six samples should be taken.  The small intestine is vast.  If spread out, it's comparable to the size of a tennis court!

Here is my story.  I was anemic.  No tummy issues.  Only my anti-gliadin IgA test was positive (the rest of the panel was negative), yet my biopsies revealed moderate to severe intestinal damage!  

 

Fundog Enthusiast

And stay on gluten until all of your testing is complete!  Going off gluten before then could result in a missed diagnosis.

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    • Mari
    • trents
      Sorry, I think I got you mixed up with another poster.
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      I hadn't been eating gluten free before having the antibody test done. I started eating gluten free after having the test done because the gastro PA told me to eat gluten-free for 6 months. I'm now 3 months in.
    • trents
      I tend to agree with RMJ. Your doc took the reasonable and practical approach to diagnosis. All things considered, it was the right way to go. However, if you have first degree relatives that show signs of possible celiac disease, urge them to get formally tested before they start the gluten free diet.
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      It sounds like you have a very reasonable GI doctor, who diagnosed you based on family history and symptoms after eating gluten. I would consider you lucky! The other option would be to make yourself very sick by doing weeks of a gluten challenge prior to an endoscopy.
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