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Biopsy results incomplete?

Porrin

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Porrin Rookie
Porrin
Posted

Hi everyone, im from Argentina and im struggling with getting diagnosed since a bit more than a year, I've got nutritional deficiencies that doesn't seem to respond to supplements and GI problems, bloating, pain, steatorrea etc + other autoimmune disorders. They finally realized the upper endoscopy and took 2 samples, but the analysis of the samples seems very incomplete it says they found congestive duodenum mucosa and no signification histology changes, but there is not lymphocytes count or marsh classification whatsoever, should i call and ask for a more detailed report? im just getting so tired of all of this u.u

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squirmingitch Veteran
squirmingitch
Posted

They should have taken at least 6 biopsies. Yes, call them & see if there is a more detailed report. Did you get the celiac blood testing? You should have had that before the endoscopy. Do you have the results of the blood testing? If so, can you post it here along with the reference ranges?

Were you eating gluten every day or had you gone gluten free before the endoscopy or blood testing? Don't quit eating gluten until all testing is done with.

What other autoimmune diseases do you have?

I am not at all familiar with the health care/insurance of Argentina. Is it a government health care or do you guys have individual insurance plans? Can you pick your doctors?

cyclinglady Grand Master
cyclinglady
Posted

Sorry that you are ill.  I just want to add a link regarding the celiac blood tests that your doctor should order to help confirm a diagnosis of celiac disease as many other things can damage intestinal villi.  

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Porrin Rookie
Porrin
Posted
  • Author
1 hour ago, squirmingitch said:

They should have taken at least 6 biopsies. Yes, call them & see if there is a more detailed report. Did you get the celiac blood testing? You should have had that before the endoscopy. Do you have the results of the blood testing? If so, can you post it here along with the reference ranges?

Were you eating gluten every day or had you gone gluten free before the endoscopy or blood testing? Don't quit eating gluten until all testing is done with.

What other autoimmune diseases do you have?

I am not at all familiar with the health care/insurance of Argentina. Is it a government health care or do you guys have individual insurance plans? Can you pick your doctors?

Yes i've heard that they were supossed to take 6 or more biopsis but no, i suposse they didnt know wich is sad, but at least i was expecting a more detailed report, since they havent even found a normal mucosa, congestive means inflamation at least for what i know, i eat gluten every day i was gluten free before and i used to feel better but has been more than a year since i reintroduce gluten for all the testing, the celiac panel is complete (i already checked that) and everything is negative but they said that marsh 1 sometimes get negative blood work (that happend to a close family friend) they also realized a colonoscopy cause my mother has ulcerative colitis and i have an uncle with crohns too, so they checked that and it seems ok, what they did found was chronic gastritis but with no H pylory. I've got psoriasis, hashimoto (the antibodys but thyroid still working) and now it seems i could have Sjogren too. 
Its private healt care, you pay for month and they provide you with a number of profesionals and hospitals and you can chose from that, havent been very lucky tho tbh
Thank you for your answer im gonna try to contact the hospital and ask them for a more detailed report or the samples to take to another place for a proper analysis

squirmingitch Veteran
squirmingitch
Posted

If you can take the biopsies to another place for a second opinion that would be wonderful. 

Well since you had already been gluten free & know it makes you feel better then if you can't get anything else going on with the doctors/tests, you know you can go back to gluten free and feel better. 

The Hashimoto and Sjogren are both associated with celiac disease. It's possible that your villi just aren't damaged enough but I still am upset they didn't do the 6 biopsies. With only 2 biopsies they could have easily missed the damage. Is it possible for you to get another endoscopy? I know that would be so not fun but while you're still eating gluten..........

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      Test uncertainty

      By MI-Hoosier · Posted

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      Does this definitely suggest Coeliac Disease?

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    • trents
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      By trents · Posted

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    • MI-Hoosier
      Test uncertainty

      By MI-Hoosier · Posted

      Thank you for the response and article. I was placed on the Mediterranean diet and been on that now for about 3 weeks. While not gluten free I am eating very little bread or anything with gluten ie a slice of whole wheat bread every couple days so assume that would cause issues now with a biopsy.  With the condition my liver is in I am unsure moving back to higher bread consumption is ideal.  In this scenario would my test results be enough to assume positive Celiac and just move forward gluten free?
    • trents
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      By trents · Posted

      Welcome to the forum, @MI-Hoosier! You are operating on a misconception about your "mixed" test results. You only had two celiac disease diagnostic tests run out of six that could have been ordered if your doctor had opted for a complete celiac panel. It is perfectly normal to not test positive for all possible celiac disease diagnostic tests. That is why there is more than one test option. It is the same way with other diagnostic testing procedures for many or most other diseases. Generally, when diagnosing a condition, a number of different tests are run and a diagnosis is arrived at by looking at the total body of evidence. The tTG-IGA test is the centerpiece of celiac disease blood antibody testing and the one most commonly ordered by doctors. You were strongly positive for that test. It was not an unequivocal result, IMO.  Having said that, it is standard procedure to confirm a positive celiac disease blood antibody test result with an endoscopy/biopsy which is still considered the gold standard of celiac disease diagnosis. Had your tTG-IGA been 150 or greater, your doctor many have opted out of the endoscopy/biopsy. The absence of GI distress in the celiac disease population is very common. We call them "silent celiacs". That can change as damage to the lining of the small bowel worsens. Elevated liver enzymes/liver stress is very common in the celiac population. About 18% of celiacs experience it. I was one of them. Persistently elevated liver enzymes over a period of years in the absence of other typical causes such as hepatitis and alcohol abuse was what eventually led to my celiac disease diagnosis. But it took thirteen years to get that figured out. Within three months of going gluten free my liver enzymes were back into normal range. Thank goodness, there is more awareness these days about the many long fingers of celiac disease that are not found in the classic category of GI distress. Today, there have been over 200 symptoms/medical conditions identified as connected to celiac disease. It is critical that you not begin a gluten free diet until your endoscopy/biopsy of the small bowel is over. Doing so before that procedure will invalidate it because it will allow healing of the small bowel lining to begin. Here is a link to an article covering celiac disease blood antibody testing:  
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